Living with Lymphoma - Peter MacCallum Cancer Centre

LIVING WITH
LYMPHOMA
Raising Awareness, Giving Support,
Searching for a Cure.
For your free copy visit www.lymphoma.org.au
Living with Lymphoma - Introduction | Page

This resource manual has been produced by Lymphoma Australia especially
for newly diagnosed lymphoma patients, friends, relatives and lymphoma
survivors.
The information contained in this resource about Lymphoma is easy to
understand and will help anyone wanting to have a better comprehension of
this cancer and the physical and emotional challenges that may come with a
Lymphoma diagnosis.
The patients’ stories in this manual have been included to highlight that there
are many people facing similar circumstances, and it is often very useful to
share your experience with someone who understands how you may be feeling
and to gain insight from their experience.
The more you know the more control you will have over your situation. Don’t be
afraid to ask for support when you need it as there will be challenging times
and there will always be someone there to help you.
It is also very important for you to know that potential new treatments are
being developed all the time for cancer, including Lymphoma, giving patients
more hope than ever before.
We sincerely hope that this resource manual provides you with the information
you need to live your Lymphoma journey with the knowledge to make informed
decisions and therefore the confidence to live your life to the fullest.
Lymphoma Australia is dedicated to providing support and education to all
people with all types of Lymphoma.
Sharon Millman
Executive Director
Lymphoma Australia
Page | Living with Lymphoma - Introduction
Knowledge is power...

LymPHomA
Explained p 5- 0
HoDGKIN LymPHomA
Explained p -
NoN HoDGKIN LymPHomA
DIffErENT TyPES
LymPHomA
Treatments p6 -84
PArTICIPATING IN
mANAGING TrEATmENT
CArING for SomEoNE
0
0
Explained p -4 0
of Non Hodgkin Lymphoma p4 -60
Clinical Trials p85-90
Side Effects p9 - 06
with Lymphoma p 07-
04
05
06
07
08
INDEx
p - 0 09
Living with Lymphoma - Introduction | Page

DoNATIoNS
If you can make a donation to assist us with the provision
of our free resources across Australia please complete the
information below and post back to us: Lymphoma Australia
Po Box 676 fortitude Valley 4076. Thank you for your support.
online donations can also be made by visiting our website at
www.lymphoma.org.au
Page 4 | Living with Lymphoma - Introduction

LIVING WITH LymPHomA
rESoUrCE mANUAL
How This resource
manual is organised
The first section of this manual will outline what cancer is in general and how cancers of the
Lymphatic system fit into the overall picture. This manual also provides information on each type of
Lymphoma and how each one is diagnosed and treated.
Living with Lymphoma is organised in sections so that you can look up specific information as you
need it and record important information that is relevant to either your treatment or events in your
Lymphoma journey.
It also contains useful materials to help you keep track of the various aspects of your health care,
including information on your doctors and nurses, your medications, your treatment schedule and
your symptoms.
How This resource
manual Was Produced
Living with Lymphoma was written in response to the many concerns of Australian patients
living with Lymphoma. Patient focus groups ensured the content was relevant and addressed
gaps in patient information and assisted in determining the main focus of the manual.
The manual was reviewed by a panel of patients and clinicians to ensure accuracy, relevance
and usefulness to patients with Lymphoma.
A Very Big Thank you
This resource was made possible by the generous efforts of many individuals and supporting
organisations. A very special thank you to the hospitals, doctors, nurses, patients, families and
friends that made this resource possible and will assist with taking the fear of the unknown out
of the Lymphoma journey.
Living with Lymphoma - Introduction | Page 5

Lymphoma Australia
Profile
Lymphoma Australia was established to support Lymphoma sufferers and their families, raise
awareness in the community and raise funds to support research for a cure.
In 00 , Lymphoma Australia was founded by a volunteer group based on the Gold Coast,
Queensland and became incorporated in 004. Lymphoma Australia is endorsed with deductible
gift recipient (DGr) status from the ATo and receives no government funding.
our mission Statement is “To support those touched by Lymphoma, raise awareness of the
cancer and help fund research for a cure”.
The feather signifies that everyone has a guardian angel in their Lymphoma journey to look
after and care for them. No one will ever be alone.
To date, Lymphoma Australia has raised the bar within Australia and also at the world level
with informative, easy to understand and relevant resources for Lymphoma patients and their
support communities.
However, a critical component and challenge for Lymphoma Australia is to address the
Lymphoma knowledge gap at the community level and to motivate key decision makers to
prioritise this cancer as a significant health concern in our society based on our current facts
and figures.
Along with our global colleagues we are addressing the urgent key issues that are hindering
support for Lymphoma research in line with the impact of the diagnosis and morbidity rates of
this cancer.
To help those affected by Lymphoma and raise awareness of the disease in the community, we
have a number of initiatives which include a:
• Book — Living with Lymphoma
• DVD —your Journey of Lymphoma Treatments
• Diary — Lymphoma Patients
• Website — www.lymphoma.org.au
our hard-copy resources have all been well received by the community and are provided at no
cost to hospitals, patients and doctors across Australia.
Page 6 | Living with Lymphoma - Introduction

Shirley Winton
The dedication and work of Lymphoma patients formed the foundations of Lymphoma Australia
so that today our organisation is in a position to provide the support and information to
Australians during their Lymphoma journey.
This book is also a tribute to Shirley Winton oAm the founding President of Lymphoma
Australia and all the Lymphoma angels that are with her as they look after us and guide us in
our Lymphoma work.
Living with Lymphoma - Introduction | Page 7

Acknowledgements
Layout and Design
Nick Vacondios - mode Creative Design
e. design@modecreative.com.au
Medical Writer
Liz marshall
Editing
Sharon millman
Tanya mason
Photography
Kaycie Smith
DVD
Your Journey of Lymphoma Treatments
DVD Producer
Gary Grant
This education material has been supported by an unrestricted grant from roche Products Pty
Limited
Parts of this book may be copied for personal use. Any other use requires that the usual provisions
of copyright, such as permission of the publisher and proper acknowledgement of source, author
and publisher be observed.
Disclaimer:
While Lymphoma Australia has made every effort to confirm the accuracy of the information contained herein, it makes no
representation or warranty with respect to the accuracy, completeness, usefulness or appropriateness of such information.
The information in this manual has been based on current medical knowledge at the time of production, however, the
management of lymphoproliferative disorders is a fast-changing field such that the accuracy of the information may
become outdated over time. Lymphoma Australia does not assume any liability for any such deficiency or any damage or
harm incurred directly or indirectly from such information. The information herein cannot substitute for medical advice
and Lymphoma Australia advises patients to contact their physician regarding the information presented and its relevance
to each patient’s unique situation. Reference to any specific product does not imply its endorsement, recommendation or
favouring by Lymphoma Australia.
Page 8 | Living with Lymphoma - Introduction

equesting your
Lymphoma resources
you can order more copies of our book Living with Lymphoma by visiting our Lymphoma website
www.lymphoma.org.au.
you will be able to download this book from the website or order your free hard copy.
In addition to this you will also be able to request from our website a free copy of our DVD
Your Journey of Lymphoma Treatments and our Lymphoma Patient diary for all your important
information.
our DVD seeks to give hope to the thousands of Australians who are diagnosed with lymphoma
each year. There are no actors in this DVD – they are real patients, doctors and hospital scenes.
The DVD not only assists with the education of what to expect when undergoing Lymphoma
treatment but also highlights the wonderful medical support we have in Australia for our
Lymphoma patients.
Your Journey of Lymphoma Treatments is an important part of the support resources for
Lymphoma Australia and it will be updated as needed so that relevant and current treatment
information is always available.
Patient feedback
The DVD is fantastic! I want to share it with everyone who is going through the first
stages of treatment and also their families. I wish I had have seen it 5 years ago when
my journey began. Congratulations for a very informative and well presented DVD.
- Janice
I found the explanation of Lymphoma (ie: forts and soldiers etc.) to be really informative
and helped to visualise the disease and understand it more clearly.
I had found very little lay term explanations of what Lymphoma actually is and would
love to have had this at the start of my disease diagnosis.
It's a great effort and I am sure that lots of people will benefit from the DVD. my
oncologist is going to watch it and feels it may be good as a resource for his patients. I
might never see it again!!!
- Anne
Contact Us
We welcome your comments on our resources.
Please email to: enquiries@lymphoma.org.au
Phone: 800 59 08
Website: www.lymphoma.org.au
Living with Lymphoma - Introduction | Page 9

LIVING WITH LymPHomA
rESoUrCE mANUAL
•
Lymphoma Explained
Lymphoma describes any cancer that develops within the lymphatic system.
In order to understand lymphoma, it is necessary to firstly develop an understanding of cancer
in general as well as the role of the lymphatic system in the body.
•
Hodgkin Lymphoma Explained
This chapter contains information on Hodgkin lymphoma including its symptoms, how it is
diagnosed and various forms of treatment.
•
Non-Hodgkin Lymphoma Explained
This chapter contains general information on NHL including common symptoms and the
process of diagnosing the disease.
•
Different Types of NHL
The World Health Organisation’s classification of lymphomas is the most commonly used
system for classifying the different types of NHL and these are briefly described in this
chapter.
•
Lymphoma Treatments
There are many different treatments for lymphoma and these are described in this chapter.
Your individual treatment is chosen based on many factors and your health care team will
consider these factors when making these important decisions.
•
•
Managing Treatment Side Effects
This chapter provides further detail on some of the side effects you may experience whilst
receiving chemotherapy and/or radiation therapy. It also provides some tips on how to
minimise and manage these side effects.
•
Being a Lymphoma Carer
A chapter acknowledging the role of the carer after a Lymphoma diagnosis.
•
Participating in Clinical Trials
This chapter outlines the importance of Clinical trials.
Glossary and Bibliography
A list of commonly used Lymphoma terms and list of references used to compile this
resource.
Page 0 | Living with Lymphoma - Introduction

my Story
by JAmIE SImPSoN
At the age of I discovered a lump in my groin and told mum. my mum thought I
might have an infection somewhere and immediately booked me in for an appointment
with our local GP. The GP took blood tests and the results came back negative for what
he was looking for, so he just gave me antibiotics and sent me home.
Being and very naive I never thought anything more of it and went along with life as a
normal teenager and never told anyone that the lump was still there - let alone grown.
I decided to attend St Brendan’s College in yeppoon for its rugby league program. It was
there that Simpson developed greater self-discipline. In late 00 I was selected in the
school’s st x at age 5. At this time, I developed little lumps all over my shins and I
went to the school nurse who suggested they were probably just skin lumps.
I didn’t even feel sick leading up to my Lymphoma diagnosis
However, mum was a little more concerned and said we were going to go the doctors.
But I had a Touch Carnival in Toowoomba to play in for Saint Brendan’s and had no
intention of going anywhere till after this. Priorities right - well they were for a 5 year
old.
After returning from a successful carnival my Aunty took me to the doctors because
mum had to work. He examined my legs and said they were just little blood clots. He
then asked if I had any other lumps and this is when I showed him the lump in my
groin. Well the doctor nearly fell off his chair as the lump was approx cm long (size
of my fist) and protruding out approx 4 – 5cm.
my doctor rang mum and explained his findings. mum rushed down to the surgery
crying fearing the worse as cancer is familiar in our family. my Granddad died from
bladder cancer when I was 5.
But being young I never really grasped the magnitude of the whole cancer thing as I
was feeling fit and healthy. I wasn’t sick so I must be ok that was my way of thinking.
Things then started to happen really quickly. my doctor did up a referral to the hospital
for a biopsy. We met with the surgeon who explained what was going to happen and
within weeks I was in having the lump removed. I had a drain put into my groin where
the lump was removed from and was on crutches for a couple of weeks.
Living with Lymphoma - Introduction | Page

“ I didn’t even feel sick leading up to
my Lymphoma diagnosis
”
It was toward the end of october when the results were returned that I was diagnosed
with Hodgkin’s Lymphoma. I remained strong and positive but my mum found it very
hard and couldn’t help but cry every time she thought about it. I kept reassuring her
that I was going to be ok and I would beat this.
I was referred to a specialist from Brisbane Dr Kennedy (my saviour I say) and he
organised more tests to determine the stage of my Lymphoma. I was subjected to a
lumbar puncture and it was one of the worst tests ever. Initially we thought is was only
going to be in my groin (Stage ) but mrI’s and bone scans revealed I was Stage which
was my groin, abdomen and neck.
Dr Kennedy decided to go with chemotherapy first and said the mix of chemo I was
going to have was the worst but the most successful. He put a positive note on my
prognosis – if the chemo is successful and I stay in remission for 5 years I should be
good for 0 years then after 0 years in remission the likelihood of getting it back was
very minimal.
So it was New years Eve 00 when I had my first session of a 6 month chemo
schedule. Not the best way to bring in the New year. It was the worst thing ever I would
spend the whole day in the ward being injected with the chemo and then spend the rest
of the week being violently ill.
I would then have a week off and attend school for – days then do it all over again. I
would start vomiting the moment I stepped into the ward and it was at this point when
I nearly gave up. 6 months felt like a life time and then it was all over. Everything was
looking good, scans were clear and I was feeling great about my future.
months after the chemo had finished things took a turn for the worse my leg started
to swell and I was subjected to more tests. The tests showed that the cancer had
returned.
Again we met with Dr Kennedy and again he explained the circumstances that the
only treatment left was a Stem Cell Transplant. As this treatment was not available in
rockhampton we had to go to Brisbane.
Page | Living with Lymphoma - Introduction

mum had to take time off work without pay which meant very tight times. But having
such a close family they all helped out enormously. mum’s work colleagues also ran
weekly raffles and would forward all the profits down to help us out.
We stayed at my great auntie’s place in Brisbane for the first month or so then the
Leukaemia foundation found accommodation for us. my grandma came down to help
support mum and look after my little sister. The rest of the family visited as often as
they could to help out.
The lead up tests showed I was a perfect donor for my own stem cells. So the process
began, with me being hooked up to a machine, lying still all day - not an easy task. The
machine was taking blood from one arm, separating the blood and pumping it back into
my other arm. I had to give myself needles for awhile as well but this was one thing I
couldn’t do so mum had to do it. I was determined to beat this cancer and play NrL
I was then put into hospital and isolated as my immune system had been wiped out.
This is when I hit rock bottom. What was a couple of months felt like years. I got a
chest infection and was really sick. I had to spend my 7 th birthday in hospital. mum
baked me a cake but I was so sick I couldn’t eat. I couldn’t have too many visitors
either which was really hard. But I did get a visit from Scott minto who organised an
autographed copy of his book “Don’t Die with the Music in You” with a personal message:
“Tough times come and go, but tough guys last forever” from Wayne Bennett.
As these words became stuck in my head I started to realise that I was going to beat
this and I would still be able to achieve my dreams of playing NrL.
once the treatment was over we returned to rockhampton. I had to have regular check
ups with Dr Kennedy who came to rockhampton every month from Brisbane.
A new year began and all the tests were clear and I am feeling great. After finally
beating cancer, I returned to St Brendan’s to complete my senior education in 004,
with a newfound determination to make the most of my abilities. I was offered a couple
of options by several clubs but ultimately settled on the Brisbane Broncos.
“
I was determined to beat this
cancer and play NrL
Living with Lymphoma - Introduction | Page
”

“
To date I have scored
tries in my first year and
have played 7 NrL games.
”
our school side was going great, taking out the local competition and then we travelled
to Townsville to play in the Confraternity Shield. As part of a victorious St Brendan’s
side I was awarded player of the Confraternity Carnival and later was selected for the
Queensland Schoolboys team. Who would have thought less than months earlier I
was the one in Brisbane very ill with cancer.
I then started my senior career for Broncos feeder clubs Aspley and the Toowoomba
Clydesdales in 005- 006. Whilst I was a frequent try-scorer in the QLD Cup for Aspley
and gained representative honours for the Queensland City origin side in 007, I still
couldn’t crack it in the first grade side with the Broncos.
I was then lured to the South Sydney rabbitohs for the 008 NrL Season. An injury
delayed my first grade debut until round , where I scored a try against the New
Zealand Warriors. once given the opportunity in the NrL, I knew with my determination
and my new found attitude that the cancer had given me I was not going to let this
opportunity pass me by. To date I have scored tries in my first year and have played
7 NrL games. A pretty mean feat for a boy who had cancer.
- Jamie
Page 4 | Living with Lymphoma - Introduction

LYMPHOMA
EXPLAINED
Lymphoma describes any cancer that develops within the lymphatic system.
In order to understand lymphoma, it is necessary to firstly develop an
understanding of cancer in general as well as the role of the lymphatic system
in the body.
Cancer
The Lymphatic System
Lymphoma
01
Living with Lymphoma - Lymphoma Explained | Page 15

TANYA’S STOrY
The day that I found myself in hospital being diagnosed with NHL was the scariest day of
my life. I had been feeling unwell for a few months, tired and stressed, I eventually went to
my GP, after noticing a vein protruding from the side of my neck and shortness of breath.
Being the wonderful doctor that she is, she quickly sent me to the hospital for a chest xray
and further tests. I wasn’t at all worried at this stage. I was young, fit and healthy. I just
thought I was run down and stressed, as I was a working mother, running around after an
18 month old little boy, teaching 4 days a week.
It was the emergency doctor at the hospital that said the words that changed my world.
“We have found something on the x-ray, something that shouldn’t be there. We think it’s
Lymphoma.” I didn’t even know what Lymphoma was, but I knew it wasn’t good. The doctor
then said that I would most likely be treated with radiation and chemotherapy. A shock
wave hit me. I had Cancer! My thoughts instantly went to my family, my beautiful husband
standing by my side and my little boy. I could die.
My immediate family and closest friends were called, while I was being admitted to the
hospital, it was a Friday night. The saying that your life is turned upside down with the
blink of an eye really rings true with the news such as this. I was in shock and didn’t know
what all this meant? The next 10 days were some of the most challenging of what would
be the beginning of my Lymphoma journey. I was so lucky to have an immediate support
network gather around me. My family came to be by my side and my closest friends.
Everyone wanted answers and over the next few days as test results came back, the pieces
of my diagnosis were coming together. After a bone marrow biopsy, a heart ultrasound, a
lung capacity test, biopsy of the mediastinal lymph node and a few CT scans I was finally
diagnosed with Diffuse Large B-cell Mediastinal Non-Hodgkin Lymphoma.
I would commence chemotherapy immediately. The shock of everything was still buzzing
around me, but I decided very early that I was going to be positive. I was going to beat
the Lymphoma. Treatment was going to be a challenge, but I was going to make this an
opportunity to focus myself. This was my goal and I got to make it my reality with the
support of my family, friends and Medical Team. After six cycles of Chemotherapy, I was
lucky enough to hear the news that I was in remission. Life will never be the same for my
family or myself after this experience. Every day is a new beginning for me, with new hope
and possibilities to create a life that is filled with love and laughter.
- Tanya
Page 16 | Living with Lymphoma - Lymphoma Explained

Cancer
What is Cancer?
Cells make up every part of the human body: skin, hair, nails, lymph nodes, blood and body
organs. Cell division is a normal part of a cell’s life cycle and is regulated by genes (segments
of DNA that determine a person’s unique characteristics and how their body functions). Under
healthy conditions, the process of cell division is tightly controlled with numerous checks and
balances in place. The definition of cancer is the abnormal, uncontrolled growth of cells.
Why does cancer occur?
This is a question that scientists have been trying to answer for a long time. One main reason
that cancer may develop is due to genetic errors. There are many different genes present in
all cells, and each one controls a different function in the body. When errors (called genetic
mutations) occur in the genes that control cell division, the result is a cell that cannot divide
normally. This results in an abnormal cell that cannot properly perform its intended function.
The cells of the immune system are constantly circulating in the body to identify and destroy
these abnormal cells. However, in instances where the immune system doesn’t work properly,
or if the genetic mutation is too severe, these abnormal cells remain and grow.
Cancer occurs when these abnormal cells continue to grow at an uncontrolled rate. As these
abnormal cells divide, they can eventually form a solid mass called a tumour. A malignant
(cancerous) tumour will continue to grow at an uncontrolled rate and will eventually cause
harm to other areas of the body.
The Lymphatic System
What is the lymphatic system?
LYMPHOMA
EXPLAINED
The lymphatic system, a system of vessels, nodes and organs that runs throughout the body,
often seems mysterious and elusive as it doesn’t receive the same attention as other body
systems, like the cardiovascular or digestive systems. Individuals may be aware of lymph nodes
in the neck when they become swollen with a sore throat or infection.
Living with Lymphoma - Lymphoma Explained | Page 17

The Lymphatic System
The lymphatic system is a very important part of the body serving many life-preserving
functions. The lymphatic system is a network primarily made up of:
• Lymph nodes: small, bean-shaped organs found throughout the body; and
• Lymphatic vessels: vessels which circulate lymphatic fluid (also called lymph) throughout
the body.
A Lymph Node
Organs (other than lymph nodes) also considered as part of the lymphatic system include:
•
•
•
•
•
•
Bone marrow
Thymus gland
Tonsils
Spleen
Liver
Lymphocyte accumulations in the lining of the intestinal, respiratory, genital and urinary
tracts.
Page 18 | Living with Lymphoma - Lymphoma Explained

How does the lymphatic system work?
The lymphatic system has three main functions:
1. To circulate and regulate fluid levels in the body:
Any excess fluid that escapes from the bloodstream is picked up by the lymphatic system and
returned to the blood stream. This helps to prevent oedema (swelling due to excess fluid) and
keeps the fluid levels in the body and the bloodstream within normal limits.
2. To absorb fats from the digestive system:
Special lymph vessels, called lacteals, are located in the lining of the digestive system where
they are responsible for absorbing fat and fat-soluble vitamins from food. The fats are then
transported to the bloodstream and used as needed.
3. To defend the body against infection:
The vessels of the lymphatic system move lymphatic fluid and lymphocytes, a specific type
of white blood cell, throughout the body. The lymphatic fluid travelling through the lymphatic
vessels passes through lymph nodes, which are primarily made up of lymphocytes. The
lymphocytes serve to filter the lymphatic fluid of any debris, removing bacteria, viruses and
other foreign substances. This helps keep the body free of invading organisms and therefore,
free of infection.
What are Lymphocytes?
Lymphocytes are a type of white blood cell and are a major component of the lymphatic system.
Lymphocytes are divided into two types: B-lymphocytes or T-lymphocytes (also called B-cells
or T-cells), and function to fight infection and prevent disease. They are an integral part of a
healthy immune system.
Normally functioning B-cells transform into highly specialised cells called plasma cells in
the face of infection. Plasma cells manufacture antibodies which function to fight infections.
T-cells, the other type of lymphocyte, directly attack foreign invaders such as bacteria and
viruses, and also kill cancer cells and rid them from the body. Lymphocytes can be found in the
blood. However, the majority of them are normally circulating within the lymphatic system.
“
I heard the word lymphoma and didnt know
what it meant. Then I heard the words
chemotherapy and radiation and the scary
reality hit, I had cancer.
”
- Tanya
Living with Lymphoma - Lymphoma Explained | Page 19

Lymphoma
What is lymphoma?
Understanding the lymphatic system and cancer in general makes it easier to understand
lymphoma. Lymphoma is a cancer of the lymphatic system. In lymphoma, a tumour develops
due to uncontrolled growth of abnormal lymphocytes. Because the lymphatic system exists
throughout the body and involves many organs, there may be cancerous tumours in many parts
of the body.
There are two main categories of lymphoma: Hodgkin and non-Hodgkin.
What is the difference between Hodgkin and
non-Hodgkin lymphoma?
The difference between Hodgkin lymphoma and non-Hodgkin lymphoma (NHL) is the presence
of reed-Sternberg cells. A reed-Sternberg cell is a cell derived from a B-lymphocyte and
is only present in Hodgkin lymphoma. If reed-Sternberg cells are present when the tumour
is examined under a microscope, the diagnosis is Hodgkin lymphoma. If there are no reed-
Sternberg cells in a lymphatic tumour, the diagnosis is most likely to be NHL.
NHL is more common than Hodgkin lymphoma, outnumbering it by a ratio of over six to one.
Of all diagnosed lymphoma cases, 85% of them are NHL. Distinguishing between Hodgkin
lymphoma and NHL is important to show different patterns of spread and to determine
different treatment options.
This booklet provides information on Hodgkin lymphoma, non- Hodgkin lymphoma
and the treatment of lymphoma.
Page 20 | Living with Lymphoma - Lymphoma Explained
“Our increased understanding of the genetic
mishaps that cause lymphoma will eventually
lead us to truly specific treatment and perhaps
even prevention.” - Dr. Mark Bentley

HODGKIN
LYMPHOMA
EXPLAINED
Hodgkin lymphoma is a relatively rare type of lymphoma. It was named after
Dr. Thomas Hodgkin, who was the first person to document the condition
in London, 1832. This chapter contains information on Hodgkin lymphoma
including its symptoms, how it is diagnosed and various forms of treatment.
What is Hodgkin lymphoma?
Common Symptoms
Diagnosis
Classifying and Staging
Treatment of Hodgkin lymphoma
02
Living with Lymphoma - Hodgkin Lymphoma Explained | Page 21

LIS’S STOrY
In 1999 I was completing year 11 in high school. I was involved in many sports and doing
pretty well in my studies. For quite a few months I had been feeling overwhelmingly tired
and, though I couldn’t notice it I was losing a fair bit of weight. My mum was taking me to
the doctor’s quite regularly and I was sent for many blood tests as the doctor thought I was
suffering from Glandular Fever.
One day in Modern History class I started getting a strong pain down my left arm and noticed I
had a lump protruding out the left side of my neck. The swollen lymph node, I later found out,
was pushing on my muscles thus causing the pain in my arm. My mum was a teacher at my
high school so I went straight to her and she took me to the GP again. Fortunately, this day
my usual GP was not working and the doctor I saw sent me for more blood tests and a chest
CT. It was the chest CT that showed many small lumps throughout my chest cavity and I was
told I had Hodgkin Lymphoma. I was diagnosed at 2B. I was apparently told that day that it
was cancer however I either chose not to believe it or didn’t understand it actually was cancer
until I was told by my Oncologist that I would go for a week of “work up” (various tests and
scans) before starting Chemo!
I underwent 6 months of Chemotherapy sessions, each fortnight throughout the first half
of 2000 while I completed year 12. I had my Chemo on a Friday so I only missed one day of
school. For the first half of my treatment I was back at school on a Monday. I didn’t feel
sick and got quite cranky at people for fussing over me, especially when school offered me
to Year 12 over 2 years which I politely declined!! Towards the end of my treatment though
the physical and emotional effects of the Chemo started taking their toll I can still smell “it”
when I go back for check ups. I was very fortunate that after the 6 months, I was declared in
remission. I have now been in remission for 9 years.
I finished Year 12 and went straight to Uni and completed a Social Work Degree. I have been
working as a Social Worker since 2004 and currently work with spinal injured clients. In
hind sight, my diagnosis was massive , not only for me, but for my mum, my step dad, little
sister, friends and family. I know understand how huge it was, especially for my mum, who
was and continues to be the biggest support for me. At the time, I didn’t let myself think of it
as a potentially life threatening diagnosis however I am very grateful at how lucky I was and
thankful that my experience wasn’t much worse.
- Lis
Page 22 | Living with Lymphoma - Hodgkin Lymphoma Explained

HODGKIN LYMPHOMA
EXPLAINED
Hodgkin Lymphoma
What is Hodgkin Lymphoma?
“
I was 28 years old when i was told I had a
malignant cancer. After many tests I was
diagnosed with stage 3 Hodgkin lymphoma
My life changed forever after finding that
lump in my neck. I didnt even feel sick, in fact
I was feeling very fit at the time
”
- Michael
Living with Lymphoma - Hodgkin Lymphoma Explained | Page 23

How common is Hodgkin Lymphoma?
In Australia, approximately 400 people are diagnosed with Hodgkin lymphoma each year. It is a
rare disease, accounting for 0.5% of all cancer types diagnosed. Hodgkin lymphoma can occur
in various age groups. In developed countries, it is most likely to occur:
•
•
•
Between the ages of 15 – 25 years old, or after the age of 65 years old
In young adults, it occurs in similar numbers of males and females.
In older adults, it is more likely to occur in males
Hodgkin lymphoma is slightly more likely to occur in people who have had glandular fever and
those with a relative who has had Hodgkin Lymphoma. This does not mean that another family
member will definitely get the disease, but rather that other family members have a slightly
higher risk of getting Hodgkin Lymphoma compared to the general population.
How does Hodgkin lymphoma develop?
Currently, it is not known how Hodgkin lymphoma develops and research continues to
investigate the cause of the disease. However it is thought that the malignant (cancer) cells
grow due to an abnormal immune response from a past infection e.g. The Epstein Barr virus
which causes glandular fever. Other people who develop Hodgkin lymphoma may have a genetic
tendency to abnormal immune responses.
What is known is that Hodgkin lymphoma is not contagious – you cannot “catch it” from
someone nor can you give it to someone else. There is no evidence to suggest that anything
you have done or not done (such as lifestyle choices) will cause the development of Hodgkin
lymphoma.
Page 24 | Living with Lymphoma - Hodgkin Lymphoma Explained
“
After a lump suddenly came up in my neck my
mum took me straight to the doctor. When he
finally told us it was Hodgkin lymphoma I had
no idea what it was.
”
- Lis

Common Symptoms
Symptoms of Hodgkin Lymphoma
The effect that Hodgkin lymphoma has on the body – and hence the symptoms that are
experienced – will depend on where the cancer cells are located and what parts of the body are
involved.
Enlarged lymph node “lumps”: the lymph nodes become enlarged because of the growth of
lymphoma cells - Abnormal lymphocytes (a type of white blood cell) - Which divide and form
more lymphoma cells. Hodgkin lymphoma often starts in the neck or chest area but may also
occur in other parts of the body. As these lumps of lymphoma cells grow they affect the surrounding
area causing pain and/or irritation – for example, a lump in the neck/throat area may
cause a cough. While this may not seem a serious symptom, the lumps will continue to grow if
not treated and can spread to other parts of the body.
Immune system problems: the body uses healthy lymphocytes to fight infection. In Hodgkin
lymphoma cancer cells are produced instead of normal lymphocytes, leaving the body with less
healthy cells to protect it from infection, even a simple cold. Cancer cells in the immune system
can also cause it to react as if it is fighting infection - Symptoms such as night sweats, fevers
and unexplained weight loss (called “B symptoms”) are commonly experienced in someone
with Hodgkin lymphoma.
Other symptoms: Hodgkin lymphoma can grow in other parts of the body and so can interfere
with the normal function of that particular part of the body. For example, Hodgkin lymphoma
can grow in the bone marrow which can cause problems with the production of new blood cells.
A growing tumour will also compete with the healthy cells and organs of the body for energy
and blood supply.
Diagnosis
How is Hodgkin Lymphoma diagnosed?
As the symptoms of Hodgkin lymphoma are not specific, a person may initially see their doctor
because of lymph node swelling or general symptoms such as fatigue or lacking energy. More
serious B symptoms such as severe weight loss, fever and night sweats may also be reported
prior to diagnosis. The doctor will detect swollen lymph nodes during a physical examination
but the confirmation of Hodgkin lymphoma requires a tissue biopsy. The presence of reed-
Sternberg cells found under microscopic examination of the tissue biopsy confirms the
diagnosis of Hodgkin lymphoma.
A biopsy on my neck confirmed my Lymphoma
diagnosis, what followed were more tests
- blood tests, CT scans, Bone marrow
tests...this revealed I had stage 3 Hodgkin
lymphoma.
- Michael
“
”
Living with Lymphoma - Hodgkin Lymphoma Explained | Page 25

What is a biopsy?
A lymph node biopsy is a crucial step in diagnosing Hodgkin lymphoma. It involves the removal
of a sample of tissue (cells) from an affected lymph node; this is usually performed by a
surgeon. The cells are then examined under a microscope to look for the presence of reed-
Sternberg cells.
A bone marrow biopsy may also be performed to see if the lymphoma has spread to the bone
marrow. Using local anaesthetic, a needle is inserted through the skin into the hip bone (pelvis)
and marrow is drawn up in the needle. These cells are also examined under a microscope to
see if any reed-Sternberg cells are present in the bone marrow.
Patients can be lightly sedated for a bone marrow biopsy
procedure.
Classifying and Staging
Classification of Hodgkin lymphoma
A lymphoma is classified as Hodgkin lymphoma if the reed-Sternberg cell is detected.
However, Hodgkin lymphoma is further classified into subtypes which describe the disease in
more detail such as what the affected lymph nodes look like, what other cells are present and
what characteristics the cells have. The two main subtypes of Hodgkin lymphoma are:
Nodular lymphocyte predominant Hodgkin lymphoma: This occurs more often in older adults
and grows slower than classical Hodgkin lymphoma. It is often diagnosed at an early stage
when “B symptoms” are not yet present.
Classical Hodgkin lymphoma: This is further divided into 4 subtypes: nodular sclerosing, mixed
cellularity, lymphocyte rich and lymphocyte depleted.
Nodular sclerosing is the most common Hodgkin lymphoma subtype, although it is less
common in older adults diagnosed later in life. Lymphocyte depleted Hodgkin lymphoma is very
rare.
These various subtypes tend to be treated in the same way.
Page 26 | Living with Lymphoma - Hodgkin Lymphoma Explained

Staging Hodgkin Lymphoma
“Staging” is a medical term used to describe the extent to which the lymphoma has spread
within the body. The stage is determined by:
• The number and location of lymph nodes affected
• Whether the affected lymph nodes are above, below or on both sides of the diaphragm (the
large, dome-shaped muscle under the ribcage that separates the chest from the abdomen);
• Whether the cancer has spread to the bone marrow or to other organs such as the liver.
The most common method of staging is called the Ann Arbor Staging System, which can be
summarised as follows:
Stage What it means?
1
2
3
4
The lymphoma is in only one group of lymph nodes
Two or more groups of lymph nodes are affected but they are all either
above or below the diaphragm, either all in the chest or all in the abdomen
Two or more groups of lymph nodes are affected in both the chest and the
abdomen
The lymphoma is in at least one organ (e.g. Bone marrow, liver or lungs)
as well as the lymph nodes
Each stage of Hodgkin lymphoma may also be classified as “A” or “B”. People with a B
classification have one or more of the following B symptoms:
•
•
•
Unexplained weight loss of more than 10% in the six months before diagnosis
Unexplained fever with temperatures above 38°C
Drenching night sweats.
For example, if your Hodgkin lymphoma is on both sides of your diaphragm and you have been
having night sweats, the doctor will refer to your disease as stage 3B. Or, if your disease is
in several lymph nodes above your diaphragm (e.g. Your neck and chest) and you have no B
symptoms, your doctor will refer to your disease as stage 2A
“
I was really lucky I was diagnosed with stage
2B Lymphoma so I didnt really have any B
symptoms at the time, I was only feeling tired
all the time and had started to lose weight.
”
- Lis
Living with Lymphoma - Hodgkin Lymphoma Explained | Page 27

Medical tests for staging Hodgkin Lymphoma
In addition to a lymph node (and perhaps also a bone marrow) biopsy, the doctor may require
that you have other medical tests to identify the stage of disease. Some of these tests may
include images and scans, such as:
•
•
•
•
•
X-ray: A procedure where low dose radiation beams are used to provide images of the
inside of the body for diagnostic purposes.
CT scan/CAT scan: A series of X-rays that provide detailed, three-dimensional images of
the inside of the body.
MRI (magnetic resonance imaging): An MrI is similar to a CT scan, but uses magnets
instead of X-rays.
Gallium scan: A safe amount of radioactive gallium is injected into the person, after which
an X-ray is performed to detect where the radioactive gallium makes the tumour(s) visible.
PET (positron emission tomography) scan: This is similar to a Gallium scan, except it is
radioactive glucose which is injected into the person and is taken up preferentially by cells
with a high metabolic (energy) activity, such as cancer cells. A scanner is then used to
visualise the areas of the body where the radioactive glucose is concentrated.
Doctor Injecting dye prior to PET scan.
Page 28 | Living with Lymphoma - Hodgkin Lymphoma Explained
Patient having PET scan.
“
After receiving all my test results it
was decided that I would need not only
chemotherapy but radiotherapy to help
me beat this cancer
”
- Michael

Treatment of Hodgkin Lymphoma
Hodgkin lymphoma is treated by either a haematologist or a medical oncologist. A radiation
oncologist may also be involved in your care. There are a number of things which you and your
doctor will consider when deciding on the best treatment for your condition. These include:
•
•
•
•
The stage of the disease and the size of the lymph node lumps
Your age and general health/fitness
Your blood test results
Whether or not you have B symptoms (e.g. Weight loss, fever, night sweats)
Sometimes people with the same stage of Hodgkin lymphoma will have different treatments
because of the differences in their general health and/or symptoms. So don’t be concerned
if the people you may talk to at your clinic are having different treatments. Always ask your
doctor questions you may have at any time concerning your disease, treatment and managing
any side effects of the treatment. It may be helpful to take someone with you to your doctor
appointments to help you remember what was said, and to take a list of your questions. If you
don’t fully understand what is being said, don’t be afraid to ask your doctor to explain it again.
The following describes some of the treatment options which may be helpful for your particular
situation and disease state. More details on treatment options (such as radiation therapy,
chemotherapy, bone marrow/stem cell transplantation), possible side effects of treatment
and managing these side effects can be found in the chapters “Lymphoma Treatments” and
“Managing Treatment Side Effects”.
Treatment of early stage Hodgkin Lymphoma
“Early stage” refers to Stage 1A (and sometimes Stage 2A) Hodgkin lymphoma where the
cancer is localised to one or two lymph nodes located in a similar part of the body e.g. the neck
area.
Until recently, radiation therapy was the main treatment for early stage Hodgkin lymphoma.
Called “mantle zone” radiotherapy, the treatment involved radiation to the swollen lymph
node and the surrounding area. This form of treatment successfully cured the cancer for many
people.
Now, many doctors will also use chemotherapy to treat early stage Hodgkin lymphoma, or a
combination of chemotherapy and radiation therapy. This enables the treatment to target not
only the obvious areas of disease (such as swollen lymph nodes) but also disease that might
not yet be noticeable. The doctor will decide which treatment is most appropriate for your
particular situation.
Treatment of advanced Hodgkin Lymphoma
If the cancer has spread to other parts of the body (stage 3 and 4) it is referred to as advanced
disease. People with advanced Hodgkin lymphoma are generally treated with chemotherapy
which is usually given as a combination of different chemotherapy drugs given over a period of
time (sometimes up to 6-8 months).
There have been many clinical trials over the past few decades which have tested various
different combinations of chemotherapy drugs for the treatment of Hodgkin lymphoma. The
doctor will discuss with you which treatment will be best suited to your particular situation.
Living with Lymphoma - Hodgkin Lymphoma Explained | Page 29

Treatment of relapsed Hodgkin lymphoma
relapsed disease is when the cancer comes back again after a period of “remission” (defined
as a reduction in the tumour size by more than half or the lymphoma is undetectable) following
treatment. Some people who have Hodgkin lymphoma will experience a relapse, which is most
likely to happen within 2 years of the end of the first treatment. While it can be very distressing
to experience relapsed disease, it is quite common and it can be treated.
The treatment for relapsed disease will depend on the first treatment given and your response
to it. The doctor may choose to use a combination of chemotherapy drugs or, in some cases, a
treatment of high dose chemotherapy and stem cell transplantation.
Treating Hodgkin lymphoma in later life
Approximately one in every five people diagnosed with Hodgkin lymphoma is aged 60 years or
older. Older people are more likely to have other health problems at the time of diagnosis which
may add some complexity to treating the Hodgkin lymphoma. For example, an existing health
problem may exclude certain types of chemotherapy drugs because of their effect on the heart.
Older age and other health problems may also mean the person is less able to tolerate the
treatment side effects and/or they may take longer to recover from treatment. In particular,
chemotherapy causes damage to the bone marrow and an older person may take longer to
build back healthy blood cells. The doctor will carefully assess each person’s health status
and response to treatment and discuss the best approach to treating the cancer. Simple
strategies such as extending the period between treatment doses and/or reducing the dose of
chemotherapy and/or adding in some supportive medication (e.g. Growth factors) will help an
older person cope better with their treatment.
Clinical Trials
A major part of developing new treatments for Hodgkin lymphoma involves clinical trials
- Carefully planned research that is conducted on patients in order to test new medications or
new treatment approaches. The new treatment is usually compared with an existing treatment
to assess if the outcome is more beneficial for patients.
Some of the research currently underway in Hodgkin lymphoma includes investigating
medicines that specifically target the cancer cells (biologic therapies), and treatments to attack
the Epstein Barr virus (which increases the possibility of developing Hodgkin lymphoma). Your
doctor may discuss with you the option of a treatment as part of a clinical trial, or you may wish
to discuss clinical trials as a treatment option with your doctor.
Clinical trials are explained in more detail in the chapter “Lymphoma Treatments” –
Participating in Clinical Trials.
- Remember, more details on many of the things discussed in this chapter
can be found in other chapters in this book, such as:
• Lymphoma Explained
• Lymphoma Treatments
• Managing Treatment Side Effects.
Page 30 | Living with Lymphoma - Hodgkin Lymphoma Explained

MICHAEL’S STOrY
My life changed forever the night I settled on the couch to watch a movie, it was 1993 I was 28 years
old. I was a very fit and active person. I was laying on my side with my head on a pillow when I could
feel something getting in the way around my neck region. I quickly got up, had a feel of my neck and
could feel a lump that wasn't normally there. I quickly got myself off to the doctor the next day and
as he was a personal friend of the family I could sense his immediate concern as soon as I showed
him why I was there, of course I then asked him the obvious question...could it be cancer Doc? He
replied by saying it could be but let's wait for some tests. My world had been turned upside down I
knew that this was very serious!!! The next week or so was very trying, having met with a specialist,
getting a biopsy done and then waiting for the results....that was the worst, waiting and waiting
for the news. The week was drawing to a close and it had been several days since the biopsy was
taken....but still no news!!! I wanted, I needed to know before the weekend. I rang the specialist and
asked if he had seen the results, it was then that he told me the news that changed my life forever...
the words" Its a malignant cancer" rang through my ears.
Tears welled in my eyes as I told my brother Peter (whom I run a business with) who was with me
when I got the news, I will never forget what he said.... "You can't have cancer we have enough
problems in our business to deal with. You can't have'. The next week was the scariest week of
my life, not knowing what they would find. How far had it spread? Was it too late??? Was I going to
die? Would the doctors be able to save my life? If so what type of treatment would I receive?In the
following week I met my specialist haematologist who arranged for more tests to be done, blood
tests, CT scan, a bone marrow test. At the end of that week Mum, Dad and I went back to him to
get the results of all the tests I had done... it was D day. Was I going to live or die??? The doctor told
me that I had Hodgkin Lymphoma and that it generally responds well to treatment, I felt a weight
had been lifted from my shoulders. He told me that I had a better than 50% chance of survival. The
specialist radiographer advice was to go with the operation and chemotherapy, then have some
back up radiation. If this was what was needed to save my life, then I just had to do it!!
The operation I had was called a Staging Laparotomy (an incision from my sternum bone down to
just below my navel) and splenectomy (removal of my spleen) and a biopsy was taken from my liver.
The results came back that my liver was clear but I had microscopic evidence of the cancer in my
spleen so it was good to know that it had been removed. It did, however, change my grading from a
stage 1 to stage 3 Hodgkin Lymphoma. I would definitely need to have chemotherapy. I then started
to have six months of chemotherapy, followed by three weeks of back-up radiation.This was a very
testing time not only physically but also mentally, not knowing whether all this treatment was
going to save my life or not!!!!
During this time I drew on a lot of positives, my haematologist, told it how it was, at times it was
very confronting for me but in hindsight I really appreciated his honesty. He told me that when I
was in hospital I would hear stories and information from the nurses and other patients, he told
me to only focus on what was in front of me and to not worry about other people's stories that I
heard as it may not even affect me, this was very sage advice as that is exactly what I did.
Living with Lymphoma - Hodgkin Lymphoma Explained | Page 31

Looking back, the time passed quickly and after enduring six months of chemo I had one
month of back-up radiation. I found the radiation the easiest of all the treatment, it was
just like getting an X-ray, I didn't feel a thing. On completion, I had all the tests again
and received the best news I had in the past twelve months. The doctor told me I was in
remission...Yes! I exclaimed. I could finally say I have beaten it...or so I thought.
I remained in remission for seven years. Then one day in the year 2000, shortly after I had
eaten lunch, I began to feel sick, I got a pain in my stomach and thought I had a touch of food
poisoning. As the day drew on the pain increased, so much so I ended up in the casualty ward
at the rBH. I told them about my past history but they didn't think that it was related. When I
awoke the next day the pain was gone (to this day I don't know why the pain just left me when
I woke up the next day. I believe that the pain was a message to alert me to the fact that
something was not right). They sent me for a CT scan and shortly thereafter the doctor came
and told me that they had located a large mass deep and low down in my abdomen and that it
was more probable than not that it was a reoccurrence of the Hodgkin Lymphoma...I thought
that I was a gonna!!!
I was terrified this time as I knew what to expect, it made it a lot harder to face. When I
awoke from the operation, the doctor told me that he was pleased on how the operation
went, but I still had a long road ahead. After I recovered from my op I started what they called
Salvage chemotherapy. I received this in hospital every 3 weeks, for a week at a time for six
months. This was a very enduring time as the chemo was very strong. After it was finished
my specialist told me that I was to have a stem cell transplant with my previously harvested
stem cells. He told me that this was going to be my toughest battle yet as I was likely to get
very sick.
He was right, this was the toughest of everything to get through, but this was designed to
cure me for good, so I said bring it on, let's get it over and done with! I was in hospital three
weeks. During that time I was quite ill. I felt that sick that I sometimes questioned whether
I would ever come out. At the same time I would tell myself that I wasn't sick and I would
force myself to get out of bed to walk up and down the halls to stay active. This is when I
discovered the power of my mind. Even though I was very sick I kept telling myself that I was
not sick, when I lay in bed with drips and tubes attached to me...when I couldn't go anywhere,
I would use the power of my mind to take me to where I wanted to be. I would close my
eyes and imagine my favourite golf course and I would play every single shot of every hole
in my mind....mind you I still couldn't hit a hole in one! It was through this experience that I
realised the power and health of my mind was just as important as the health of my body!!! I
am very grateful to have learnt this about myself; this is another very positive thing to come
from such a negative experience. When I was well enough I went back and had some more
backup radiation.
To this day I remain well and in remission. I firmly believe that the stem cell transplant is
what cured me of this terrible disease. I have just celebrated my 44th birthday and I am living
proof that there is hope for everybody finding themselves in a similar situation to what I have
experienced in the past.
Page 32 | Living with Lymphoma - Hodgkin Lymphoma Explained
This is my story, good luck and good health to you all.
- Michael

NON HODGKIN
LYMPHOMA
EXPLAINED
Being diagnosed with any cancer is often overwhelming. Learning more about
the disease can ease confusion and allow you to feel more in control. This
chapter contains general information on NHL including common symptoms
and the process of diagnosing the disease.
Incidence and Occurrence
Common Symptoms
Diagnosis
Classifying, Staging and Grading NHL
Treatment of NHL
03
Living with Lymphoma - Non Hodgkin Lymphoma Explained | Page 33

BEVERLEY’S STORY
My job as a professor in the tourism field has provided lots of travel opportunities. In April
2004 I boarded a plane bound for Korea. However, as we travelled, I started to suffer serious
discomfort in the left abdomen region, which became increasingly more painful (I had
experienced a similar event some 6 months earlier but dismissed it as a virus). Over the
next few days I made several trips to the local hospital and undertook x-rays and various
medications being in a foreign country with no language in common made the whole event
really scary.
On return to Australia, I visited a local GP. My blood tests came back normal so I was
quite relieved. But then I got a call from my GP to say that an ultrasound I had a few days
earlier had identified a mass, which might be tumor. I remember feeling totally numb and
disbelieving perhaps like many people I thought It might be a mistake. A CT scan then
revealed Lymphoma - Cancer. As a fit middle aged person, this came as a complete surprise.
I knew very little about Lymphoma and found myself, together with my husband (Graham),
embarking on a medical merry go-round. It seems I may have had the illness for many years
before it advanced and started pressing on vital organs.
I started CHOP chemotherapy treatment, followed by another drug Mabthera. While the
treatment period was not something I enjoyed, it has become something of a distant memory
(the more distant the better!!). I have also had a stem cell harvest and these have been saved
for potential later use.
Challenged by my illness, and wanting to inspire research into Lymphoma, I spoke to my
artist father (Howard Sparks) about holding a fund raising art exhibition. In December 2004
we held an art exhibition to raise funds for the Lymphoma research program and raised
$13,000. This fund-raising program supports a project under the leadership of Professor Lyn
Griffith, Director of Griffiths Genomics Research Centre.
In 2005 I set myself the goal of getting my life on track for a healthy future. I attended a health
retreat which provided me with a way of feeling positive, and partially in control of my destiny.
It was also great fun, even of abit tough! The retreat provided a significant turning point for
me in terms of moving from the sick’ person a well’ person. It also helped me at a time that
my conventional treatment finished and I was on my own to cope with an uncertain future. I
have since taken up Yoga, have travelled and am now able to reflect and to regain confidence
in my own physical and mental abilities. Like many people who face a life-threatening illness,
I have appreciated the value of friends, family and a supportive work environment. Life will
never be as it was before diagnosis but it is the life I have to deal with and I aim to do the best
I can at remaining healthy and happy.
- Beverley
Page 34 | Living with Lymphoma - Non Hodgkin Lymphoma Explained

Incidence and Occurrence
How common is NHL?
In the past 20 years the number of people diagnosed with NHL has doubled. In Australia
there are now nearly 5000 people diagnosed with NHL each year. NHL represents the fifth
most common malignancy diagnosed in men and the sixth most common in women, with the
incidence being approximately 39% higher in men.
What are the risk factors for NHL?
Despite being one of the fastest growing cancers in the western world, the cause of NHL is still
unknown. People with the following risk factors may have an increased chance of developing
NHL:
•
•
•
•
•
•
Previous infections with viruses such as Epstein-Barr virus, human immunodeficiency virus
(HIV), human T-lymphotropic virus type 1 (HTLV-1) and hepatitis C
Chemical exposure including pesticides, fertilisers or solvents
Autoimmune diseases including rheumatoid arthritis, scleroderma and Sjögren’s syndrome
Previous organ transplant
Infections with certain bacteria including Helicobacter pylori
A family history of NHL.
It is not known with certainty that NHL can be inherited through family history. Furthermore
it is important to note that having these risk factors does not mean NHL will develop. Many
people diagnosed with NHL have absolutely no risk factors.
- Having these risk factors does not mean NHL will develop. Many people
diagnosed with NHL have absolutely no risk factors.
How does NHL develop?
NON HODGKIN
LYMPHOMA
EXPLAINED
NHL can begin in any lymph node or lymph tissue found in the body. Tumours may involve
just one lymph node or several lymph nodes at the same time. Since lymphocytes move
throughout the body through either the bloodstream or more commonly the lymphatic system,
any abnormal lymphocyte has a clear path to travel all through the body. This is why NHL can
start in or spread to any part of the body. It is for this reason that many people have widespread
disease at the time of diagnosis.
Living with Lymphoma - Non Hodgkin Lymphoma Explained | Page 35

Common Symptoms
As mentioned, NHL is the name given to a group of closely related cancers, each of which has
its own unique symptoms. However, the following table lists symptoms which are common
among many types of NHL:
Painless lymph node
enlargement
Fevers, night sweats, tiredness,
weight loss > 10%
Widespread itching
Nausea, vomiting, abdominal pain
Shortness of breath, cough
Headaches, vision changes,
seizures
Anaemia, susceptibility to infection
Reddened patches on the skin
Page 36 | Living with Lymphoma - Non Hodgkin Lymphoma Explained
> 2 cm most common, often in the neck,
underarm or groin
As lymphoma can trigger an immune
response it can cause symptoms similar to
those that develop when the body is fighting
an infection
Caused by immune cell histamine release
similar to the itching of allergic conditions.
Sometimes triggered by alcohol
If lymphoma is affecting the digestive tract
If lymphoma is affecting the chest
If lymphoma is affecting the brain
If lymphoma is crowding out the bone marrow
May occur if lymphoma cells localise there,
causing inflammation
Other signs and symptoms may be present. Their occurrence depends on the site of the
tumour(s) and the extent of the disease.
“
Like many people who face a life
threatening illness, I have appreciated the
value of friends, family and a supportive
work environment.
”
- Beverley

Diagnosis
How is NHL diagnosed?
A number of different examinations and tests are usually required to diagnose NHL and to see
if the disease has spread. Depending on your situation, the doctor may use some or all of these
tests to decide the best way to treat your disease. Information from the following sources helps
doctors determine the diagnosis:
•
•
•
•
•
•
•
•
•
Your health history: Your family’s history of disease, your personal illness history, your
general health status, etc.
Physical examination by the doctor.
X-ray: A procedure where low dose radiation beams are used to provide images of the
inside of the body for diagnostic purposes.
CT scan/CAT scan: A series of X-rays that provide detailed, three-dimensional images of
the inside of the body.
MRI (magnetic resonance imaging): A technique used to obtain three-dimensional images
of the body. An MRI is similar to a CT scan, but uses magnets instead of X-rays.
Gallium scan: Gallium is a chemical taken up by some cancer cells and can therefore
help doctors visualise cancer in the body. In this procedure, a safe amount of radioactive
gallium is injected into the person, after which the person undergoes an X-ray where the
radioactive gallium makes the tumour(s) visible. This test is performed in the Nuclear
Medicine facility at the hospital.
PET (positron emission tomography) scan: A way to visualise cancer in the body.
Radioactive glucose (a sugar molecule used as the energy source for cells) is injected into
the person and is taken up preferentially by cells with a high metabolic (energy) activity,
such as cancer cells. A scanner is then used to visualise the areas of the body where the
radioactive glucose is concentrated. PET scans are also performed in the Nuclear Medicine
facility at the hospital.
Laboratory tests: Blood tests and urine tests.
Biopsy: A biopsy is one of the most important steps in diagnosing the type of NHL. It
involves the removal of a sample of tissue (cells), usually performed by a surgeon. The
cells are then examined under a microscope. Most people will have two types of biopsies: a
lymph node biopsy and a bone marrow biopsy. A lymph node biopsy is used to confirm the
diagnosis of NHL and a bone marrow biopsy determines if the NHL has invaded (spread to)
the bone marrow. All of this information is used to obtain an accurate diagnosis and decide
on the best treatment for each person.
“
After a lump came up on my leg I went to
see my GP to find out what it was.
After many tests it came back that I had
non-Hodgkin lymphoma.
”
- Rebecca
Living with Lymphoma - Non Hodgkin Lymphoma Explained | Page 37

Classifying, Staging
and Grading NHL
Classifying NHL.
A bone marrow biopsy is used to check if the Lymphoma is
in the bone marrow.
- A biopsy is one of the most important steps in diagnosing the type of NHL.
Information gained from a lymph node biopsy and a bone marrow biopsy is
used to obtain an accurate diagnosis and decide on the best treatment for each
individual person.
Your health care team needs to determine the exact type (classification) of NHL you have as
this helps doctors decide on the most appropriate treatment for you. The biopsy procedure is
critical in the classification process as it provides cells taken directly from the tumour. This
allows doctors to determine which type of cell the tumour originated from (B-cell or T-cell), as
well as other important information about the tumour cells. The biopsy is often called a tissue
diagnosis (meaning the diagnosis is made through an examination of the tissue or cells) and
the course of the person’s treatment depends on these results.
Once the surgeon has performed the biopsy and the pathologist has examined the tissue
and tumour cells, the information is used to determine the exact type of NHL you have.
The classification process is a complicated one and many organisations have attempted to
simplify this. However, the most commonly used system is the World Health Organization
(WHO) Lymphoma Classification System which allows different NHL types to be classified in a
standardised way among doctors around the world. Once the NHL type, or classification, has
been identified, it is then important to determine the stage and grade of the NHL.
- NHL Classification provides information on the type of tumour cells.
Page 38 | Living with Lymphoma - Non Hodgkin Lymphoma Explained

Staging NHL.
The stage of a cancer provides information on whether the cancer has spread and the extent
to which it has spread within the body. There are four stages of NHL, with stages 1 and 2 being
limited (involving a limited area) and stages 3 and 4 being advanced (more widespread). The
Each stage of NHL may also be classified as A or B. Patients with a B classification status have
one or more of the following B symptoms:
•
•
•
stage is determined by:
•
•
•
The number and location of lymph nodes affected;
Whether the affected lymph nodes are above, below or on both sides of the diaphragm
(the large, dome-shaped muscle under the ribcage that separates the chest from the
abdomen);
Whether the disease has spread to the bone marrow or to other organs such as the liver.
The most common method for staging NHL is called the Ann Arbor Staging System, which can
be summarised as follows:
NHL Stage What it means?
1
2
3
4
The NHL is in only one group of lymph nodes
Two or more groups of lymph nodes are affected but they are all either
above or below the diaphragm, either all in the chest or all in the abdomen
Two or more groups of lymph nodes are affected in both the chest and the
abdomen
NHL is in at least one organ (e.g. bone marrow, liver or lungs) as well as
the lymph nodes
Patient having a regular check up.
Unexplained weight loss of more than 10% in the six months before diagnosis
Unexplained fever with temperatures above 38°C
Drenching night sweats.
The presence of B symptoms may be associated with more advanced-stage disease.
- NHL Staging provides information on whether the cancer has spread and the
extent to which it has spread within the body.
Living with Lymphoma - Non Hodgkin Lymphoma Explained | Page 39

Clinical Grading of NHL.
The doctor must also determine the grade of the tumour, which provides information on how
aggressive (fast-growing) the tumour is and helps predict how the tumour will behave. This
information then helps to decide the aggressiveness of the treatment approach.
The grade is determined by the appearance of the cancer cells, what unique characteristics
they have, how they function and how quickly they grow and divide. The grade is referred to as
low-grade, intermediate-grade or high-grade NHL. Low-grade NHLs are often called indolent,
or slow-growing NHLs. Intermediate and high-grade NHLs are often called aggressive, or fastgrowing
NHLs.
- NHL Grading provides information on how fast the tumour is growing.
The following table summarises the specialised process of classifying, staging and grading NHL:
NHL Description What it Describes
Classification
Stage
Grade
NHL Type
Extent of spread
Aggressiveness
CT scan and PET scan.
CT scan PET scan
Page 40 | Living with Lymphoma - Non Hodgkin Lymphoma Explained
Indolent NHL = low-grade; slow growing
Aggressive NHL = intermediate and
high-grade; fast growing
CT scans and PET scans may be used by your doctor at times to assess your Lymphoma. The
following images show what can be seen in a CT scan and a PET scan:

Treatment of NHL
Indolent and Aggressive NHL.
Indolent NHL
Indolent NHL is a low-grade lymphoma, meaning the tumour grows very slowly and people
often do not show symptoms until late in the disease. As a result, indolent NHL tends to be
widespread at the time of diagnosis.
People diagnosed with indolent NHL often do not require immediate treatment and a “Watchful
Waiting” approach may be used (see the “Lymphoma Treatments” chapter for a more detailed
explanation). Treatment is eventually required and is usually effective at shrinking tumours and
giving the person a disease-free period, called remission. However, indolent NHL may relapse
over time and further treatment is often required.
Sometimes low-grade, indolent NHL will change (transform) into an intermediate or highgrade
(aggressive) lymphoma, at which point more urgent, intensive treatment is required.
However, people with indolent NHL often live for a long time and enjoy a good quality of life, and
some people may never even require treatment.
Examples of indolent NHL include follicular lymphoma, small lymphocytic lymphoma and MALT
lymphoma.
Having an indolent form of NHL means
that I have had to come to terms with
living with this cancer. It may come back,
but if it does there are options for further
treatment. Until then, I chose to live a full
life, surrounding myself with my family and
friends.
- Ros.
“
”
Living with Lymphoma - Non Hodgkin Lymphoma Explained | Page 41

Intermediate/high-grade NHL
This lymphoma type tends to grow a lot faster than the indolent lymphomas, and for this reason
is referred to as aggressive, or fast-growing, lymphoma. Unlike indolent lymphomas, aggressive
NHL requires intensive treatment immediately after diagnosis. Although the word aggressive
sounds frightening, aggressive lymphomas show an excellent response to treatment and people
can often be cured. Indolent lymphomas that transform into aggressive lymphomas can be
more difficult to treat.
The following table gives an overview of the main differences between indolent and aggressive
NHL. An explanation of all the different types of NHL follows.
Page 42 | Living with Lymphoma - Non Hodgkin Lymphoma Explained
Indolent NHL Aggressive NHL
Proportion of NHL cases 40% - 50% 50% - 60%
Symptoms
Treatment timing
Prognosis
There are commonly no
symptoms at diagnosis
Immediate treatment is
often not required. The
Watchful Waiting approach
is often employed here
Responds well to
treatment. Relapse is
common and further
treatment is often required
Usually the symptoms
prompt a doctor’s visit
which leads to diagnosis
Immediate, more intensive
treatment is usually
required
Very good response to
treatment.
“
My doctor said that I had an aggressive form
of NHL. Then he explained that aggressive
forms also take on the chemotherapy drugs
quickly, so they usually respond rapidly
to treatment. I was in remission after 3
months of chemotherapy.
”
- Tanya

DIFFERENT
TYPES OF NHL
Non-Hodgkin lymphoma is not a single disease – it is a group of at least 30
closely related cancers that affect the lymphatic system. NHL can be divided
by the type of lymphocyte affected (either B- or T-cells) resulting in either
B- or T-cell lymphomas. The World Health Organization’s classification of
lymphomas is the most commonly used system for classifying the different
types of NHL and these are briefly described in this chapter.
B-Cell Lymphomas
T-Cell Lymphomas
04
Living with Lymphoma - Different types of NHL | Page 43

•
•
•
•
•
•
•
•
•
•
•
•
•
•
Small Lymphocytic Lymphoma
•
•
•
(Waldenstrom’s Macroglobulinaemia)
•
•
•
•
•
•
•
•
Sezary Syndrome
Mycosis Fungoides
Page 44 | Living with Lymphoma - Different types of NHL

Different types of NHL
The most commonly used method for classifying NHL is the World Health Organisation
Classification of Lymphoid Malignancies. The different types of NHLs according to the World
Health Organisation are listed in the table below and explained in detail in the following pages.
World Health Organisation Classification of B-Cell and T-Cell Lymphomas
B-Cell Lymphomas T-Cell Lymphomas
Precursor B-cell lymphomas
Precursor B-cell lymphoblastic leukaemia/
lymphoma
Mature B-cell lymphomas
Follicular lymphoma
Mantle cell lymphoma
Diffuse large B-cell lymphoma:
• Mediastinal large B-cell lymphoma
Burkitt’s lymphoma
B-cell chronic lymphocytic leukaemia/small
lymphocytic lymphoma
Marginal zone lymphomas:
• Extranodal marginal zone B-cell
lymphoma of mucosa-associated
lymphoid tissue (MALT) type
• Splenic marginal zone B-cell lymphoma
• Nodal marginal zone lymphoma
Lymphoplasmacytic lymphoma
(Waldenstrom’s macroglobulinaemia)
DIFFERENT
TYPES OF NHL
Precursor T-cell lymphomas
Precursor T-cell lymphoblastic leukaemia/
lymphoma
Mature T-cell lymphomas
Adult T-cell leukaemia/lymphoma
Anaplastic large cell lymphoma
Cutaneous T-cell lymphoma (including
mycosis fungoides and Sezary syndrome)
Peripheral T-cell lymphomas:
• Subcutaneous panniculitis-like T-cell
lymphoma
• Hepatosplenic gamma-delta T-cell
lymphoma
• Enteropathy-type intestinal T-cell
lymphoma
• Extranodal T-cell lymphoma, nasal type
• Angioimmunoblastic T-cell lymphoma
• Peripheral T-cell lymphoma,
unspecified
Living with Lymphoma - Different types of NHL | Page 45

B-Cell Lymphomas
1. Precursor B-Cell Lymphomas
Precursor B-Cell Lymphoblastic
Leukaemia/Lymphoma
A precursor B-cell, called a B-cell lymphoblast, is an immature lymphocyte that is eventually
destined to become a mature B-cell. It is this cell that becomes cancerous in precursor B-cell
lymphoblastic lymphoma.
Precursor B-cell lymphoblastic lymphoma is a type of aggressive NHL that occurs mainly in
children and adolescents, with two-thirds being male. A second peak of occurrence happens
later in life in people over 40 years of age.
Lymphoblastic cancers are classified as either lymphoblastic leukaemias (called acute
lymphoblastic leukaemia [ALL]) or lymphoblastic lymphomas. Both are cancers of immature
lymphocytes with the major differences illustrated in the following table:
Type of lymphocyte
most commonly
affected?
Where the cancer is
located?
Page 46 | Living with Lymphoma - Different types of NHL
Lymphoblastic Leukaemia Lymphoblastic Lymphoma
B-cells T-cells
Bloodstream Lymph Nodes
The majority of precursor B-cell cancers are leukaemias, which are far more common than
precursor B-cell lymphomas.
What are the symptoms?
Common symptoms include pallor (paleness of skin), fatigue, bleeding, fever and infections.
When a blood test is performed and blood cells are counted, red blood cells and platelets
are usually lower than normal, while white blood cells may be low, normal or high in the
bloodstream (although they are abnormal in the bone marrow).
At the time of diagnosis other sites outside of the lymph nodes may also be affected and
may cause symptoms such as swollen lymph nodes, enlarged liver or spleen, neurological
disturbances, enlargement of testicles in men or skin involvement.
The diagnosis is usually made by bone marrow biopsy. This usually shows high numbers of
cancerous B-cell lymphoblasts.

How is it treated?
The treatment of precursor B-cell lymphoblastic leukaemia/lymphoma involves combination
chemotherapy – using several different types of chemotherapy drugs in the one treatment. The
overall cure rate in children is 85%, while about 50% of adults remain disease-free for long
periods of time. In people whose disease is confined to lymph nodes, a high cure rate is often
possible.
Your doctor is the best person to advise you which type of NHL you have.
2. Mature B-Cell Lymphomas
Follicular Lymphoma
What is it?
Follicular lymphoma is a B-cell lymphoma arising from B-lymphocytes. The tumour cells often
create a circular or follicular pattern when viewed under the microscope.
Follicular lymphoma is the most common sub-type of indolent (slow-growing) NHL, comprising
20% to 30% of all NHL.
Follicular lymphoma typically affects middle-aged or older adults.
Like most indolent lymphomas, people diagnosed with follicular lymphoma usually have
tumours in many parts of the body at the time of diagnosis.
Follicular lymphomas can transform into a more aggressive form of NHL, usually a diffuse
large B-cell lymphoma.
Living with Lymphoma - Different types of NHL | Page 47

What are the symptoms?
The most common sign of follicular NHL is painless swelling in the lymph nodes of the neck,
armpit or groin. Sometimes more than one group of nodes is affected.
The diagnosis of follicular NHL is confirmed by a lymph node biopsy. Other tests including Xrays,
bone marrow biopsy, CT scans and blood tests may also be performed.
In the event that follicular NHL transforms to a more aggressive form of NHL, the NHL must
then be re-diagnosed and a second lymph node biopsy or other tests may be required.
How is it Treated?
Treatment for follicular lymphoma depends on the stage of the lymphoma.
Early stage: People who are diagnosed at an early stage (stage 1 or 2) may receive no treatment
(Watchful Waiting approach), radiation therapy or chemotherapy. Local radiation therapy has
resulted in remissions lasting longer than 10 years in 50% of people.
Later stage: People who are at a later disease stage (stage 3 or 4) at the time of diagnosis but
who are not experiencing symptoms may receive no treatment (Watchful Waiting approach)
with very close monitoring.
Once the need for treatment arises the most common treatments include:
•
•
•
•
Single-agent chemotherapy (e.g., chlorambucil) or combination chemotherapy (e.g. CVP or
CHOP)
MabThera® (rituximab), a monoclonal antibody, is often used either alone or in
combination with chemotherapy
Radiation therapy
Prolonged treatment with MabThera (called MabThera maintenance therapy) may also
be used to treat people with follicular NHL who have received treatment for follicular
lymphoma and have achieved remission (complete or partial remission). This prolonged
administration with MabThera maintenance therapy (generally administered every three
months for a period of two years) has been shown to sustain the response obtained from
the initial therapy and may improve survival for people with follicular lymphoma.
Follicular NHL usually responds quite well to chemotherapy. However, there is a risk that it
may return in future years. At that time, treatment is given again with the aim of achieving
remission again. This pattern may repeat itself over many years.
Mantle Cell Lymphoma
What is it?
Mantle cell lymphoma is a type of aggressive B-cell lymphoma that most commonly affects
men over the age of 50 years, although it can affect women.
It is relatively uncommon and accounts for approximately 5% to 10% of all NHL cases.
Page 48 | Living with Lymphoma - Different types of NHL

What are the symptoms?
The most common symptom is a painless swelling in the neck, armpit or groin, caused by
enlarged lymph nodes. Often lymph nodes in more than one area of the body are affected.
Splenomegaly (enlargement of the spleen) is relatively frequent and may cause a feeling of
fullness in the abdomen after eating only small amounts.
Mantle cell lymphoma grows aggressively (fast) and may spread to other organs in the body,
including the bone marrow, spleen and liver. It can also spread to the stomach or digestive
tract.
Mantle cell lymphoma is usually widespread at the time of diagnosis. Lymph node biopsy is
used to confirm the diagnosis. Other tests including X-rays, bone marrow biopsy, CT scans and
How is it treated?
Mantle cell lymphoma is usually treated with combination chemotherapy (such as CHOP
chemotherapy) or combination chemotherapy (e.g. CHOP plus MabThera). Mantle cell
lymphoma can also be treated with radiation therapy, stem-cell transplant and other newer
treatments.
Treatment is often initially successful. However, mantle cell lymphoma frequently relapses.
While treatments have been developed to treat this type of lymphoma, people with mantle
cell lymphoma are often encouraged to participate in clinical trials so they can receive newer
treatments that are not yet available in clinical practice.
Diffuse Large B-Cell
Lymphoma (DLBCL)
What is it?
DLBCL is an aggressive B-cell NHL and is the most common type of NHL accounting for 30% to
40% of all cases.
The average age of diagnosis for DLBCL is the mid-sixties, however this cancer can also affect
children.
Mediastinal large B-cell lymphoma is a sub-type of DLBCL, where the cancer arises in the
thymus gland and lymph nodes behind the mediastinum (the area in the middle of the chest,
between the lungs). Mediastinal large B-cell lymphoma can lead to symptoms of shortness of
breath, cough and pain in the chest and cause swelling of the neck, arms and face due to the
swollen lymph nodes pressing on the veins in the chest (this swelling is known as “superior
vena cava obstruction”). This form of DLBCL may occur at any time from early adulthood to old
age but is most common between the ages of 25 and 40 years. It is twice as common in women
as in men.
Living with Lymphoma - Different types of NHL | Page 49

What are the symptoms?
The most common symptom of DLBCL is a painless swelling in the neck, armpit or groin
caused by enlarged lymph nodes. Often lymph nodes in more than one area of the body are
affected.
Usually, the disease is widespread at the time of diagnosis, with symptoms including weight
loss, fever and night sweats.
About 50% of people have organ involvement at the time of diagnosis with the most common
organs involved being the digestive (gastrointestinal) tract and the bone marrow.
The diagnosis of DLBCL is confirmed by a lymph node biopsy. When looked at under a
microscope, the tumour cells of DLBCL appear large in size and display a diffuse or scattered
pattern. Other tests including X-rays, bone marrow biopsy, CT scans and blood tests may also
be performed.
How is it treated?
The standard treatment for DLBCL is MabThera plus CHOP chemotherapy. Other therapies
include radiation therapy, stem-cell transplants and steroid therapy. This type of aggressive
NHL is very sensitive to treatment and a large percentage of people with DLBCL can be cured.
Burkitt’s Lymphoma
What is it?
Burkitt’s lymphoma is a very aggressive form of NHL and commonly affects both children and
adults, with males being affected more frequently than females.
The disease may be associated with viral infection such as the human immunodeficiency virus
(HIV) and the Epstein-Barr virus.
Burkitt’s lymphoma accounts for 30% to 40% of all childhood lymphomas and occurs in
children between the ages of 5 and 10 years and in adults between the ages of 30 and 50 years.
What are the symptoms?
The most common symptoms are swollen lymph nodes and abdominal swelling.
Burkitt’s lymphoma may also affect other organs such as the eyes, ovaries, kidneys, central
nervous system and glandular tissue such as breast, thyroid or tonsil. Disease in these organs
may cause variable symptoms.
The diagnosis of Burkitt’s lymphoma is confirmed by a lymph node biopsy. Other tests including
X-rays, bone marrow biopsy, CT scans and blood tests may also be performed.
How is it treated?
Although Burkitt’s lymphoma has a very aggressive course, survival rates with treatment
are approximately 80%. The most common treatment for Burkitt’s lymphoma is intensive
chemotherapy. Other treatments include monoclonal antibody therapy and stem-cell
transplants.
Page 50 | Living with Lymphoma - Different types of NHL

B-Cell Chronic Lymphocytic
Leukaemia (CLL)/Small
Lymphocytic Lymphoma (SLL)
What is it?
B-cell CLL and SLL are cancers that affect mature B-cells. They affect men and women equally
and are rare in children. SLL accounts for 4% to 5% of all NHL cases.
The diseases are nearly identical and the terms are often used interchangeably. The difference
between the two is that CLL is a leukaemia where the majority of the cancer cells are found in
the bloodstream, and SLL is a type of NHL where the majority of the cancer cells are found in
the lymph nodes.
What are the symptoms?
Symptoms include swollen lymph nodes and an enlarged spleen (splenomegaly), which
can cause a mass under the left ribcage, fullness in the abdomen and weight loss. Fatigue,
recurrent minor infections or bleeding episodes may also be experienced.
SLL is usually diagnosed by lymph node biopsy. A bone marrow biopsy may be performed if
there is minor lymph node involvement and reduced blood cell numbers.
How is it treated?
Initial treatment is often Watchful Waiting. Some people may never require therapy, whilst
people who develop symptoms of advancing disease receive therapy in almost all cases.
MabThera is now commonly used in combination with chemotherapy for the treatment of
CLL/SLL. Other treatments include chemotherapy with drugs such as chlorambucil and
fludarabine or a combination chemotherapy regimen used in other lymphomas such as CVP
or CHOP chemotherapy. Younger people with this disease may be candidates for bone marrow
transplant.
Marginal Zone Lymphomas
Marginal zone lymphomas are a type of indolent B-cell lymphoma that account for
approximately 10% of all NHL cases. Marginal zone lymphomas can be categorised according
to the area affected:
•
•
•
Mucosa-associated lymphatic tissue (called MALT lymphoma), which can affect the
gastrointestinal tract, eyes, thyroid, salivary glands, bladder, kidney, lungs, neurological
system or skin.
Spleen (called splenic marginal zone B-cell lymphoma)
Lymph nodes (called nodal marginal zone B-cell lymphoma).
The average age of diagnosis of marginal zone lymphoma is 65 years, although MALT
lymphomas can occur earlier.
Living with Lymphoma - Different types of NHL | Page 51

Extranodal Marginal Zone B-Cell
Lymphoma of Mucosa-Associated
Lymphatic Tissue (MALT) Type
What is it?
MALT lymphomas mainly occur outside the lymph nodes, in “extranodal” sites.
People who develop this type of NHL often have a separate autoimmune disease or
inflammatory process such as Sjögren’s syndrome (salivary gland MALT), Hashimoto’s
thyroiditis (thyroid MALT), or Helicobactergastritis (gastric MALT).
What are the symptoms?
Symptoms may include upper abdominal discomfort or local symptoms relating to where the
disease occurs. The diagnosis is made by biopsy of the tumour for confirmation of small B-cell
infiltration in the tumour.
How is it treated?
MALT type lymphoma is often curable when the tumour is localised. Surgery is not often a
common treatment for NHL however in MALT lymphoma therapies such as surgery or radiation
therapy can be curative. People with more extensive disease are usually treated with singleagent
chemotherapy such as chlorambucil or combination chemotherapy. People with gastric
MALT lymphomas who are infected with bacteria called Helicobacter pylori can achieve long
remission in the majority of cases once the infection is effectively treated with antibiotics.
In some cases this type of NHL can transform into the more aggressive diffuse large B-cell
lymphoma (DLBCL). The standard therapy for DLBCL is CHOP chemotherapy plus MabThera.
Splenic Marginal Zone
Lymphoma (SMZL)
What is it?
SMZL is a type of indolent B-cell NHL that predominantly involves the spleen.
It is a rare type of lymphoma accounting for less than 1% of all NHL. It most commonly occurs
in adults and slightly more frequent in women than in men.
Page 52 | Living with Lymphoma - Different types of NHL

What are the symptoms?
Symptoms do not normally appear until years after the disease has begun. The most common
symptom is an enlarged spleen (splenomegaly). Unlike many other types of NHL, there are
normally no swollen lymph nodes.
There is usually involvement of the blood and bone marrow at the time of diagnosis, with the
only other symptom being fatigue.
Diagnosis is based on identification of the cell type together with the typical clinical findings.
A biopsy of the bone marrow can often confirm diagnosis however removal of the spleen
(splenectomy) is occasionally required for tissue examination.
How is it treated?
A number of different approaches may be taken with SMZL, including Watchful Waiting,
removal of the spleen (splenectomy), radiation therapy, chemotherapy and biologic therapies
with drugs such as MabThera.
Nodal Marginal Zone
Lymphoma (NMZL)
What is it?
NMZL is a type of indolent B-cell NHL that is mainly confined to the lymph nodes.
It is a rare form of lymphoma, accounting for only 1% to 3% of all NHL cases.
What are the symptoms?
The most common symptom is a painless swelling in the neck, armpit or groin caused by
enlarged lymph nodes. Sometimes more than one group of nodes is affected.
NMZL is diagnosed by lymph node biopsy.
How is it treated?
The most common treatments for NMZL include Watchful Waiting, radiation therapy,
chemotherapy with medications such as chlorambucil or fludarabine, and MabThera (often
used in combination with chemotherapy).
Living with Lymphoma - Different types of NHL | Page 53

Lymphoplasmacytic
Lymphoma
(Also called Waldenstrom’s Macroglobulinemia or Immunocytoma)
What is it?
Lymphoplasmacytic lymphoma is a rare form of B-cell lymphoma, making up 1% to 2% of all
NHL cases and typically affecting older adults.
It has a slow-growing, indolent course arising from mature B-cells that are on their way to
developing into plasma cells (B-cells that produce antibodies).
In this type of lymphoma there is an overproduction of a certain type of antibody, called
IgM. When this IgM antibody is present, the lymphoma is also referred to as Waldenstrom’s
macroglobulinemia. A large amount of IgM in the bloodstream causes thickening
(hyperviscosity) of the blood.
What are the symptoms?
Lymphoplasmacytic lymphoma normally develops over a long period of time. Symptoms are not
usually very obvious and the disease is often found by chance when getting a routine blood test
or an examination for some other reason.
Symptoms may include weakness, fatigue and bruising as a result of altered blood cell levels.
Lymph nodes may be enlarged, as may the liver and spleen.
Because there may be a thickening of the blood when the IgM antibody is present, this can
cause other symptoms including sight problems, headaches, hearing loss or confusion.
This type of NHL is usually suspected after an abnormal blood test. Other tests that help
confirm the diagnosis include bone marrow biopsy, ultrasound and/or CT scan (to determine
whether the spleen or liver are enlarged).
How is it treated?
Treatment of lymphoplasmacytic lymphomas may include chemotherapy (such as chlorambucil
or fludarabine), combination chemotherapy (such as CVP), MabThera (with or without
chemotherapy) or surgery (to remove the spleen). A procedure called plasma exchange (or
plasmapheresis) may be used to treat the blood thickening (hyperviscosity) associated with this
disease.
Page 54 | Living with Lymphoma - Different types of NHL

T-Cell Lymphomas
1. Precursor T-Cell Lymphomas
Precursor T-Cell Lymphoblastic
Leukaemia/Lymphoma
A precursor T-cell, called a T-cell lymphoblast, is an immature lymphocyte that is eventually
destined to become a mature T-cell. It is this cell that becomes cancerous in precursor T-cell
lymphoblastic lymphoma.
Precursor T-cell lymphoblastic lymphoma is a type of aggressive NHL that occurs mainly in
children and adolescents, and more often in males than females. A second peak of occurrence
is seen later in life in people over 40 years of age.
Lymphoblastic cancers are classified as either lymphoblastic leukaemias (called acute
lymphoblastic leukaemia or ALL) or lymphoblastic lymphomas. Both are cancers of immature
lymphocytes with the major differences illustrated in the following table:
Type of lymphocyte
most commonly
affected?
Where the cancer is
located?
What are the symptoms?
Lymphoblastic Leukaemia Lymphoblastic Lymphoma
B-cells T-cells
Bloodstream Lymph Nodes
The most common symptoms include breathing difficulties and other problems resulting
from a large mass in the mediastinal area (the centre area of the upper chest), as well as fluid
accumulation around the lungs.
This type of NHL can spread to the central nervous system, and neurological symptoms may
also be present at diagnosis.
The diagnosis is usually made by lymph node biopsy. X-rays, bone marrow biopsy, CT scans and
blood tests may also be performed.
How is it treated?
Intensive chemotherapy is the most common treatment for older children and young adults
with aggressive lymphoblastic lymphoma. Young people with localised disease have an
excellent prognosis. Adults with later stage precursor T-cell lymphoblastic lymphoma may
have stem-cell transplantation as part of their initial treatment plan.
Living with Lymphoma - Different types of NHL | Page 55

2. Mature T-Cell Lymphomas
Adult T-Cell
Leukaemia/Lymphoma
What is it?
Adult T-cell lymphoma is an aggressive type of T-cell lymphoma where the cancerous T-cells
are found in the circulating blood.
Adult T-cell leukaemia/lymphoma is more common in countries such as Japan and China
where a viral infection called HTLV-1 infection is more common. HTLV-1 infection can make
people more likely to develop this type of T-cell lymphoma.
This type of NHL can occur at any age from young adulthood to old age. It occurs slightly more
often in men than in women.
What are the symptoms?
The most common symptoms include swollen, enlarged lymph nodes (lymphadenopathy) and
an enlarged liver and spleen (hepatosplenomegaly).
There may also be signs of skin involvement, high calcium levels in the blood (hypercalcaemia),
bone involvement and high levels of an enzyme called lactate dehydrogenase (LDH).
Diagnosis of adult T-cell leukaemia/lymphoma is made by lymph node biopsy. X-rays, bone
marrow biopsy, CT scans and blood tests may also be performed. The presence of HTLV-1 virus
must also be established.
How is it treated?
Adult T-cell leukaemia/lymphoma is treated using combination chemotherapy regimens. Some
people can live with this cancer for a long time.
Anaplastic Large Cell Lymphoma
(ALCL): Systemic-Type and
Primary Cutaneous-Type
What is it?
Anaplastic refers to the appearance of the lymphoma cells, which look quite different from
normal lymphocytes. ALCL can occur in two different forms:
• Occurring throughout the body – “systemic” type
• Occurring in the skin only – primary cutaneous type
Page 56 | Living with Lymphoma - Different types of NHL

ALCL systemic-type is an aggressive NHL, whereas the primary cutaneous type follows a more
indolent course. The cancerous cell in either type of ALCL can be a T-cell, or a cell that is
lacking B-cell or T-cell markers (called “null”).
People with ALCL are typically aged in their thirties and approximately 70% are male.
A benign condition that can mimic primary cutaneous ALCL is called lymphomatoid papulosis.
What are the symptoms?
ALCL systemic-type:
Enlarged and swollen lymph nodes, as well as involvement of other organs. Systemic symptoms
and elevated levels of the enzyme lactate dehydrogenase (LDH) occur in approximately 50% of
people. Bone marrow and the gastrointestinal tract are rarely involved, but skin involvement is
common.
ALCL primary cutaneous-type:
Usually appears as a single lump or ulcerating tumour in the skin. Lymph nodes in the area
may also become involved. The affected cells involved in this type of lymphoma have a certain
protein on their surface called the CD30 antigen.
Both types of ALCL are diagnosed by biopsy of tumour tissue.
How is it treated?
ALCL systemic-type:
Treatments appropriate for other aggressive lymphomas, such as diffuse large B-cell
lymphoma (DLBCL), are generally utilised in ALCL e.g. CHOP chemotherapy, radiation therapy,
stem-cell transplants and steroids. With combination chemotherapy, many people with ALCL
may be cured.
ALCL primary cutaneous-type:
Spontaneous remission may occur with this condition. If not, the most common treatments
include radiation therapy to the area, surgery to remove the area of skin affected and
chemotherapy (used only in people who have extensive involvement that cannot be treated with
localised therapies).
Cutaneous T-Cell
Lymphoma (CTCL)
What is it?
CTCL is a rare type of NHL caused by cancerous growth of T-cells in the skin. It is most
common in adults between 40 and 60 years of age.
There are a few sub-types of CTCL, the most common being:
Sezary syndrome: Large areas of skin or lymph nodes are affected. People with this lymphoma
may have redness of the entire skin surface and tumour cells which circulate in the bloodstream.
This type of CTCL often follows an aggressive course.
Mycosis fungoides: The general name given to the other types of CTCL when the blood is not
affected. Often, several years of eczema-like skin conditions occur before the diagnosis is
finally established. In advanced stages, the lymphoma can spread to lymph nodes and other
organs.
Living with Lymphoma - Different types of NHL | Page 57

What are the symptoms?
CTCL can appear as small, raised, red patches on the skin, often on the breasts, buttocks, skin
folds and face. These patches often look similar to eczema or psoriasis, and may be associated
with hair loss in the affected area.
People in later stages may have ulcerating tumours that appear on the skin. Lymph nodes in
the affected region may also be involved.
The diagnosis is made by skin biopsy of the area of affected skin. In the early stages of mycosis
fungoides, biopsy may be difficult to interpret and the correct diagnosis can only be made after
observing the person over time.
How is it treated?
Many therapies are used to treat CTCL. They include:
PUVA: Also called photochemotherapy, this treatment is used if large areas of skin are affected.
PUVA consists of a drug called psoralen plus ultraviolet A (UVA) light. Psoralen makes the skin
more sensitive to the healing effects of the UVA light. The treatment is similar to sitting under a
sunlamp and may be given several times a week.
UVB therapy: Ultraviolet B (UVB) light slows the growth of the cancerous cells in the skin. This
treatment does not include the use of a drug to make the skin more sensitive. Treatment may
be given several times a week.
Radiation therapy: Local radiation may be used for early-stage CTCL if only one or two small
areas of skin are affected. Radiation therapy may also be used to treat the entire surface of
the skin if the CTCL is more widespread. This type of radiation treatment is called total skin
electron beam treatment. It is only given once and then may be followed up with further PUVA
treatments if needed.
Chemotherapy: Chemotherapy drugs may be applied directly to the skin in the form of an
ointment. Intravenous chemotherapy may be used if the CTCL is more advanced.
Bexarotene (Targretin): This is a medication in capsule form that may be used to treat advanced
CTCL.
Interferon: Interferon is a naturally occurring protein in the body and is an important part of a
healthy immune system. A synthetic form of interferon can be injected under the skin to help
boost the immune response and fight the CTCL.
Photopheresis: This treatment is used particularly for Sezary syndrome. It involves passing the
person’s blood through a machine where it is exposed to ultraviolet light.
Peripheral T-Cell
Lymphomas (PTCLs)
What are they?
PTCLs are a group of aggressive NHL that affects a certain type of T-cell. They account for
approximately 7% of all NHL cases. There are many distinct sub-types of PTCLs, including:
Subcutaneous panniculitis-like T-cell lymphoma: This type of PTCL is quite rare and is often
confused with a condition called panniculitis, an inflammation of fatty tissue in the body. The
most common symptoms include nodules under the skin (subcutaneous nodules) which can
progress to open, inflamed sores. Haemophagocytic syndrome—a serious condition in which
there is uncontrolled activation of certain parts of the immune system— is also common in this
cancer.
Page 58 | Living with Lymphoma - Different types of NHL

Hepatosplenic gamma delta T-cell lymphoma: This type of PTCL affects the whole body, with
infiltration of the liver, spleen and bone marrow by cancerous T-cells. Usually there are no
actual tumours. It is associated with systemic symptoms (e.g., fever, weight loss, night sweats,
fatigue) and is quite difficult to diagnose.
Enteropathy-type intestinal T-cell lymphoma: This type of PTCL is very rare and occurs in
people with untreated gluten-sensitive intestinal disease, called celiac disease. These people
are often in a very weakened state and may have intestinal perforation (an abnormal hole in the
wall of the intestine).
Extranodal T-cell lymphoma, nasal type: This type of PTCL, previously referred to as
angiocentric lymphoma, is more common in Asia and South America. It most frequently affects
the nose and nasal passages but can involve other organs as well. It has an aggressive course,
and haemophagocytic syndrome can also occur in this condition.
Angioimmunoblastic T-cell lymphoma: This is a more common sub-type of PTCL, accounting for
approximately 20% of all T-cell lymphomas. Symptoms include generalised lymphadenopathy
(swollen lymph nodes), fever, weight loss, skin rash and high levels of antibodies in the blood.
PTCL, unspecified: PTCL, unspecified is the most common PTCL sub-type. It represents all of
the PTCLs lacking in a clear definition and thus not classifiable as a specific sub-type. Most
people with PTCL, unspecified have lymph node involvement however a number of extranodal
sites may also be involved (e.g., liver, bone marrow, intestinal tract, skin).
What are the symptoms?
The symptoms of PTCL are specific to the sub-type. Refer to the specific sub-type for a description
of the most common symptoms.
The diagnosis of PTCLs requires a biopsy and thorough examination of the cancerous tissue.
Other tests such as X-rays, bone marrow biopsy, CT scans and blood tests may also be performed.
How are they treated?
Treatment of PTCLs generally involves combination chemotherapy. Treatments are similar to
those used for other aggressive lymphomas, such as CHOP chemotherapy, radiation therapy,
stem-cell transplants and steroid therapy. The response to treatment is not often as effective
in PTCLs as it is in DLBCL. As a result, stem-cell transplantation is sometimes considered an
early treatment option in appropriate cases.
Living with Lymphoma - Different types of NHL | Page 59

The Lymphatic System
There are many lymph node sites in your body.
Page 60 | Living with Lymphoma - Different types of NHL

LYMPHOMA
TREATMENTS
There are many different treatments for lymphoma and these are described
in this chapter. Your individual treatment is chosen based on many factors
and your health care team will consider these factors when making these
important decisions. They will also consider your personal situation and
unique goals for treatment.
The Future of Lymphoma Therapy
Understanding Cancer Treatment
Lymphoma Therapies Defined
05
Living with Lymphoma - Lymphoma Treatments | Page 61

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Page 62 | Living with Lymphoma - Lymphoma Treatments

DiNA’S STORY
i am part of two wonderful, recreational, running groups called
the Rogue Runners and the Terrigal Trotters on the Central
Coast, NSW. in October 2010, a group of runners travelled to
Melbourne to compete in the half marathon. i felt fine on the
day of the run and ran well (although i did have to stop because
of pressure on my bladder). The real drama happened when
i went back to my room and i attempted to put on the trousers
that i had on the day before. My stomach was so bloated i
couldn’t do the zipper up. i knew that it wasn’t because i
had overindulged as i had hardly eaten a thing. My friends
suggested i take an antacid but this did not help.
Two days later i arrived back on the Central Coast and still felt
‘funny’. On examination, she told me that my left side was elevated and that there was a mass in my tummy. i
was sent for an immediate CT scan.
i wasn’t concerned as i had being feeling great prior to the weekend and was full of energy. She told me to see
my doctor straight away. She said i had a large mass which was a tumour? Lymphoma. i can still see her face
-clearly, she was shocked.
Within 24 hours i have a stomach biopsy which confirmed lymphoma. The hardest part was telling my eldest
daughter, 24, that i had lymphoma and that i would require treatment. We are very close and for a number of
years we were on our own before i remarried 10 years ago and had another daughter. After her initial shock, she
immediately jumped into action. She became my rock – she researched everything, purchased everything that i
would need and basically tried to help in any way.
i was fortunate to meet my lovely and down to earth haematologist/oncologist – Mark Dean. i told him at our
meeting that if he didn’t have a sense of humour that we wouldn’t get along!! i also told him that i was impatient
and that i had a lot of things to do – so i needed to be in remission fast! He made notes that the patient was
demanding and assertive!!! My family had a good laugh.
Mark explained that i had follicular lymphoma, Grade 1, Stage iii and that although it was slow growing – it was
incurable at this stage. it took me a long time to fully comprehend. He also told me that amazing advances had
been made in this area and that the average survival time was increasing all the time – in fact he was reluctant to
talk numbers because of the new drugs.
My parents are elderly and so telling them was especially hard. They couldn’t understand how their daughter, who
took care of herself, exercised and was never sick – now was very sick.
i found telling my friends very hard as i couldn’t stand the pity. i just wanted the routine of running 3 times a week
as a group and exercising every other day with them. i didn’t want to miss out on the camaraderie.
As treatment began, my hair fell out. Of course this is only a superficial thing, but for me it was a visual sign
that i had a problem. i have always found it hard to accept that i had a problem. At every treatment, my devoted
daughter, sister and husband would sit with me for treatments. i was very lucky – i was hardly sick during
treatment. i just felt a little ‘crazy’ a couple of days after from the prednisone (steroids). So four times a week, i
continued to get up at 5.30 and train with my friends. Even though i couldn’t run because the steroids had zapped
my muscle strength, i still tried to do what i could – just to feel normal.
Several years ago, i put a suggestion to my running friends. As we had run just about every fun run around NSW,
i suggested that we needed to go international – New York. They all said yes and we plan to do the New York
Marathon in November, 2011 for my 50th birthday.
Of course, on diagnosis, the first thing i asked my doctor was..........’will i still be able to go to New York and run’? i
also told him that i was only doing 6 rounds of chemo and that it would be gone after that.
i am thrilled to say that after 6 rounds of chemotherapy, my PET scan came back as negative.........i am in
remission! My doctor could not believe it......he now says that anything is possible with my biology!
All during treatment, i was able to help myself mentally by reading the inspirational books by Louise Hay. She
firmly believes that positive affirmations bring positive results. Every day, i would chant to myself ‘i am whole in
body, mind and spirit. All is good in my world!
i am very positive that i have a great future and look forward to many more special events with friends and family.
My attitude is that i am living with a manageable chronic disease and that i will tackle any problem if it occurs.
i firmly believe that with the right attitude, good lifestyle choices and positive people, life is there to be enjoyed.
God Bless. - Dina.
Living with Lymphoma - Lymphoma Treatments | Page 63

Doctor Mark Bentley
Chairman Lymphoma Australia
The Future of Lymphoma Therapy
Our understanding of the causes of lymphoma has increased enormously over the last few years. One of
the key developments has been the recognition of who is at risk of developing lymphoma. We know that
patients with immune system disease are prone to developing lymphoma a little more commonly than
the general community. Considering that the cells involved in both autoimmunity and lymphoma are
essentially the same, this is not surprising. The constant irritation of the immune system by an invading
microbe or the immune system creating ‘friendly fire’ appears to create the right environment for a
lymphoma to form. it may become a realistic goal to ‘prevent’ lymphoma in these situations.
There is now recognition that lymphoma may arise in a familial fashion, clustering with other cancers.
it is not uncommon to see patients whose mother suffered breast cancer, or father prostate cancer and
their children develop lymphoma. This is by no means a universal phenomenon, but one which may
lead to better understanding of genetic risk. Genetic work-up of families faced with these unfortunate
histories, may help us further unlock the causation of lymphoma.
Advances in lymphoma therapy continue to be made. The development of therapeutic compounds directly
targeting the genetic lesion at the heart of lymphoma is the holy grail. Biologic therapy for lymphoma,
thus far in the 21st century, has revolved primarily around monoclonal anti-CD20 antibody (rituximab).
There are several second-generation anti-CD20 antibodies under development (atumumab, ofatumumab,
GA101, AME-133), showing promise where rituximab may fail. Antibodies against other targets, such as
CD22 (epratuzumab) have displayed a limited role thus far, however are being explored in combination
with standard therapy. Anti-CD80 is another target (galiximab) that is being examined.
New targets for lymphoma treatment are presently focusing on intracellular mechanisms. These
processes govern the life cycle of lymphoma cells. The intracellular environment of lymphoma cells is
characterised by pathways that can overcome the usual civilised behaviour of our immune system cells.
mTOR is a key protein that allows cells to monitor their outside world: whether there are enough nutrients
to support growth, what are the growth factor levels etc. Disrupting this protein in lymphoma cells leads
to cell death. Tensirolimus is one such ‘mTOR inhibitor’. it yielded a response in almost half of patients
with resistant mantle cell lymphoma, a notoriously difficult disease and is now being explored earlier
in therapy. Local studies will commence this year exploring the role of mTOR inhibitors in preventing
relapse following successful lymphoma therapy.
NF-кB is a family of proteins that can be overproduced in lymphoma cells. This has been shown
to contribute to lymphoma development and progression, as well as resistance of malignant cells
to chemotherapy and radiation. it is, in particular, involved in diffuse large B-cell lymphoma, the
commonest non-Hodgkin’s lymphoma in this country. The ubiquitous nature of this protein, however, may
make it hard to avoid collateral cell damage.
Histone binding to DNA can suppress important genes. Deacetylation of Histones results in the process
whereby this compound attaches to the DNA. Histone deacetylase (HDAC) inhibitors can prevent this
binding and some have existed for quite a while. Sodium valproate is a common anti-epileptic medication
that acts as an HDAC inhibitor. in lymphoma there is hope for vorinostat, a tablet useful for cutaneous Tcell
lymphoma (lymphoma of the skin). Another HDAC is being studied in Hodgkin’ lymphoma.
There is much hope for lymphoma patients. it must be emphasised that current therapies cure this
disease more often than not. in the low-grade disorders, better and less toxic ways to achieve longlasting
remissions and prevent relapse with maintenance therapy are already here. The next generation
of therapy is on our doorstep. Our increased understanding of the genetic mishaps that cause lymphoma
will eventually lead us to truly specific treatment and perhaps even prevention.
Page 64 | Living with Lymphoma - Lymphoma Treatments

Lymphoma Treatments
Understanding Cancer Treatment
Lymphoma often responds very well to modern treatments. This does not mean that all types of
lymphoma – Hodgkin lymphoma and NHL - are always curable but it does mean that treatment
can often provide long cancer-free periods, reduced symptoms and improved quality of life for
many people. There are many different types of treatments for lymphoma, such as:
•
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Watchful waiting
Chemotherapy
Radiation therapy
Biologic therapies, including:
Bone marrow or stem-cell transplants
Experimental treatments obtained through participation in clinical trials.
The major goals of lymphoma treatment include:
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Monoclonal antibody therapy
Radioimmunotherapy
interferon
Vaccines (under clinical investigation)
Anti-angiogenesis therapies (under clinical investigation)
Gene therapies (under clinical investigation)
LYMPHOMA
TREATMENTS
What are the goals of lymphoma treatment?
Cure (if possible)
Achieving and prolonging remission (cancer-free period)
Minimising the number of lymph nodes and/or organs affected
Preventing the development of symptoms and treating existing ones
improving the person’s quality of life.
Living with Lymphoma - Lymphoma Treatments | Page 65

What can i expect from treatment?
Each person responds differently to treatment, as does each lymphoma type. Predicting
response to treatment depends on many variables, including the exact type, stage and grade of
lymphoma. For example, Hodgkin lymphoma is one of the most treatable types of lymphoma,
especially if it is treated in early stage disease. Diffuse large B-cell lymphoma, a type of
aggressive (fast-growing) NHL, is curable in 80% of people when the disease is localised to one
area of the body. Follicular lymphoma, a type of indolent (slow-growing) NHL, is usually spread
throughout the body upon diagnosis and can remain dormant for years or decades with little or
no treatment. Follicular lymphoma is responsive to treatment and will often go into remission
(cancer-free period) for a period of time following treatment; however, it often relapses.
Age
Variable Definition Response Expected
Prior Therapy
Performance
Status
Blood Proteins
Whether a person is older or
younger than 60 years of age
Any previous cancer treatment
the person has received
A term describing how well a
person is able to perform daily
tasks and activities
Page 66 | Living with Lymphoma - Lymphoma Treatments
“
Treatment can be rough. Turning to your
family, friends and medical team for help
can make the hard days easier. its not all
bad, treatment doesn't last forever.
Proteins present in
the blood that can be
predictors of disease. For
example, important blood
proteins in NHL are lactate
dehydrogenase (LDH) and
beta 2 microglobulin (B2M),
both of which indicate
aggressive disease if present
at high levels
” ”
- Glen
Factors other than the lymphoma type, stage and grade can affect the success of treatment.
Some of these are outlined in the following table:
Younger people (younger than
60 years old) typically show
better responses to treatment.
Older people often cannot
tolerate side effects and less
aggressive treatments are
occasionally chosen
People who have had fewer
previous cancer treatments
are usually more responsive
to new treatments
The better the performance
status the more likely a person
will successfully tolerate and
respond to treatment
People with normal levels of
LDH or B2M tend to respond
better to treatment compared
with people with higher levels

Extranodal Disease
Bulky Disease
Stage of Disease
Prognosis is a term used when predicting how a disease will likely progress after diagnosis and
treatment. it refers to the outcome of the disease and the likelihood of recovery for that person.
The prognosis given to you from your doctor is based on statistical research from hundreds
or thousands of people who had the same type of cancer and other variables similar to yours.
However, it is important to keep in mind that the prognosis is a prediction and does not always
accurately reflect the course of disease for each person.
Doctors talk about results of treatment using certain terms that you may want to become
familiar with. These are included in the glossary for easy reference but are also described here.
They include:
A term describing lymphoma
that has spread outside of the
lymphatic system
Any lymphoma tumour that
is greater than 10 cm in
diameter
The extent to which the cancer
has spread in the body. The
lymphoma stages are: stages
1 and 2 (involving a limited
area) and stages 3 and 4
(advanced, more widespread
involvement)
People whose lymphoma is
contained within the lymphatic
system typically show a better
response to treatment
The presence of bulky disease
can indicate a more advanced
stage of lymphoma. Smaller
tumours often respond better
to therapy than larger ones
People with stage 1 and 2
(limited stage) lymphoma
usually have a better chance
of a successful response to
treatment
Primary therapy: Also called induction therapy. The first treatment given after a person is diagnosed
with cancer.
Treatment cycle: A term used to describe the administering of treatment (sometimes called a
treatment round). it includes the duration of time the treatment is given and the rest period for
the person to recover. For example, a treatment cycle may involve a combination of chemotherapy
and the biologic therapy MabThera® given over one week, with three weeks of rest. This 4
week treatment cycle may be repeated 4, 6 or 8 times (i.e. over 4, 6 or 8 months).
Complete remission: Also called complete response. A term which means that all signs of the
cancer have disappeared following treatment.
Partial remission: Also called partial response. The term used when a cancer has decreased in
size by half or more but has not been completely eliminated. The cancer is still detectable and
more treatment may be necessary.
Improvement: The tumour size has decreased but is still larger than half of its original size.
Cure: The term used when no signs or symptoms of the disease have been present for a certain
period of time and the tumour has been eradicated. The longer a person is in remission
(absence of signs or symptoms of cancer), the higher the likelihood of a cure.
Stable disease: The cancer does not get better or worse following treatment.
Refractory disease: A cancer that does not respond to treatment.
Living with Lymphoma - Lymphoma Treatments | Page 67

Disease progression: A worsening of the disease despite treatment. The term is often used
interchangeably with the term treatment failure.
Relapse: The return of cancer after a period of improvement. Lymphoma may recur in the
same area as the original tumour or in another body area.
Remission: A person is said to be in remission if the tumour has diminished in size by half
or more (partial remission) or is undetectable (complete remission). For some types of lymphoma,
for example an aggressive lymphoma, a remission period of five or more years may be
considered a cured. However, remission does not always imply that the cancer has been cured
- indolent lymphomas are not commonly considered cured because these cancers can relapse
even after a long period of remission.
Are there new treatments being developed?
Lymphoma is a very active area of research and many new treatments and combinations of
existing treatments are being tested all the time. The goal of this research is to:
•
•
•
Find more effective treatments for lymphoma
Decrease the side effects of lymphoma treatments, including both short- and long-term
toxicities
Find more effective ways of administering treatment.
Significant advances have been made and continue to be made in lymphoma treatment. New
medicines are being developed whilst existing therapies are being used in different ways. The
introduction of maintenance therapy in the treatment of indolent lymphoma, using the biologic
therapy MabThera® (rituximab), represents a proactive approach to prolong remission rather
than waiting for the disease to relapse. New hope for lymphoma is always on the horizon.
- The introduction of maintenance therapy in the treatment of indolent
lymphoma represents a proactive approach to prolong remission rather
than waiting for the disease to relapse.
Being informed:
Useful Questions to Ask Before Receiving
Cancer Treatment?
As someone with lymphoma you have the right to take an active role in your treatment
decisions. Here is a list of questions you can ask your doctor to aid in your understanding of
your unique treatment plan:
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How is my type of lymphoma normally treated?
What are the other options for treating my type of lymphoma?
Which treatment(s) do you recommend for me? Which ones have you had the most success
with?
What results can i expect from treatment?
How long will my treatment last?
What are the chances that the treatment will be successful?
How long will the effects of treatment last?
Would it be appropriate for me to participate in a clinical trial for a new treatment?
What side effects can i expect from the treatment? How are they managed?
Will my ability to conduct my daily activities be affected? if so, for how long?
How much experience do you have in treating my type of lymphoma?
Page 68 | Living with Lymphoma - Lymphoma Treatments

Lymphoma Therapies Defined
Watchful Waiting
(also called Watch and Wait)
This type of treatment approach is most often used in people who are diagnosed with indolent
(slow-growing) NHL and have no symptoms or other risk factors that require immediate
treatment. These people are closely monitored using a Watchful Waiting approach. They have
regular visits with their doctor, including laboratory tests and tumour imaging (such as CT
scans), but they do not receive treatment unless the disease progresses or symptoms appear.
Watchful Waiting may initially cause distress to some people as it may seem a risky or passive
approach to a serious disease. However, studies have demonstrated that the results are no
different between those people with indolent NHL who receive treatment immediately and
those who wait until treatment is required. The benefit of Watchful Waiting is that it delays the
often significant side effects of cancer therapies.
The Watchful Waiting approach does not mean nothing is done - the process is still an active
one. People are seen regularly by their doctors and are very closely monitored for signs of
disease progression. People in the Watchful Waiting category should be observant about the
presence of disease symptoms, most notably the presence of B symptoms (e.g. fever, night
sweats and unexplained weight loss) which may indicate that active treatment should begin.
Most people initially assigned to Watchful Waiting go on to need active treatment for their
NHL. However, some people with indolent lymphomas never require treatment. if treatment is
required, it typically begins about 18 months after the start of the Watchful Waiting approach.
Chemotherapy
“
Hearing i would be doing nothing but
watching and waiting my NHL was at first
hard to live with. i then realised that i could
take a proactive role in my treatment by
being aware of any changes that may appear.
”
- Adeline
Chemotherapy means using chemicals to treat disease. in cancer, chemotherapy means
medications that kill cancer cells or prevent their growth. Most (but not all) people with
lymphoma will have chemotherapy at some point during their treatment.
Chemotherapy works to prevent lymphoma cells from multiplying and to remove or reduce
the number of cancerous cells in the body. it is often part of a larger treatment plan, used in
combination with other therapies such as radiation or biologic therapy.
Living with Lymphoma - Lymphoma Treatments | Page 69

How does chemotherapy work?
Chemotherapy is a systemic (affecting the whole body) therapy that targets and kills rapidly
dividing cells in the body, such as cancer cells. There are also normal cells in the body which
are rapidly dividing as well, and chemotherapy may damage these healthy cells. This is why
chemotherapy can have side effects including hair loss, diarrhoea, nausea and vomiting. Not all
people experience side effects from chemotherapy and if side effects do occur they can often be
mild and treated effectively.
Chemotherapy drugs work on the premise that cancer cells are always dividing whilst normal
cells, even those that have a fast turnover rate, are most often found in the resting (nondividing)
state in the body, dividing only when necessary. Chemotherapy tries to exploit this
difference between normal and cancerous cells, aiming to preferentially attack tumour cells as
they divide.
What are the different types of chemotherapy?
There are many different ways of attacking rapidly dividing cells and hence many different
types of chemotherapy. Some chemotherapy drugs interact with receptors on the surface of
cancer cells, some damage cell structures necessary for cell division and some directly target
the cancer cell’s DNA, the genetic material of the cell. Because these are all different ways
of achieving the same result—destruction of the cancer cells—chemotherapy drugs are often
given in combination in order to attack the lymphoma cells from all possible angles to increase
the odds of achieving remission.
Chemotherapy combinations are often referred to by the initials of the drug names in the
combination. Two common combinations used in lymphoma are called CHOP and CVP.
CHOP is a combination of four drugs, namely, three chemotherapy medications and one steroid
medication:
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•
•
•
Cyclophosphamide
Doxorubicin (also called Hydroxydaunorubicin)
Vincristine (also called Oncovin)
Prednisone (the steroid medication).
CVP is a combination of two chemotherapy drugs and a steroid:
•
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•
X-ray of a patients portacath in preparation for chemotherapy
Cyclophosphamide
Vincristine (also called Oncovin)
Prednisone (the steroid medication).
Page 70 | Living with Lymphoma - Lymphoma Treatments

Steroid medications are included in these treatments as they are effective therapies for
lymphoma and can quickly get lymphoma symptoms under control.
The type of chemotherapy a person with lymphoma receives depends on various factors,
including:
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The type of lymphoma
The grade of lymphoma (e.g. whether it is an indolent or aggressive NHL)
The stage of lymphoma
Whether it’s the first lymphoma treatment for the person or if the lymphoma has relapsed
following prior therapy
The symptoms the person is experiencing
The overall health of the person including age, medical history and vitality (often referred to
as the performance status of the person)
The recommendations of the medical oncologist
The choice and participation of the person in the treatment decision process.
How is Chemotherapy given?
Each dose of chemotherapy kills only a percentage of cancer cells. Chemotherapy is, therefore,
often given in multiple treatment cycles in order to destroy as many cancer cells as possible.
Treatments are scheduled as frequently as possible to minimise the growth of the tumour, often
given in cycles where the treatment is given for a period of time (e.g. for one week) followed by
a rest period where no treatment is given. The rest period allows the healthy cells to recover.
Together, each period of treatment and rest is called a chemotherapy cycle. A full course of
chemotherapy (the total number of chemotherapy cycles given e.g. six cycles) often takes
several months.
Most chemotherapy treatments can be given in an outpatient clinic, so people can go home
the same day. Chemotherapy may be given in different forms: pills, injections or intravenous
administration (administered directly into the bloodstream over a period of time through a
needle).
if you are going to be receiving multiple cycles of intravenous chemotherapy, your doctor may
recommend having a venous catheter inserted. A venous catheter is a device, usually a flexible
tube, which is inserted into a vein for easier administration of intravenous drugs. A central line
is a more permanent catheter that is usually inserted into a large vein at the top of the chest.
Both central lines and venous catheters can be left in place so you will not require a new needle
with each intravenous treatment and these may also be used to transfuse blood products into a
person or to easily remove blood for blood tests.
Patient receiving chemotherapy
Living with Lymphoma - Lymphoma Treatments | Page 71

Sometimes, a cancer may be defined as chemosensitive or chemoresistant. A cancer that is
chemosensitive means that the tumour is responsive to chemotherapy and the treatment is
effective in killing the cancer cells, whereas a chemoresistant cancer means that the tumour
does not respond to chemotherapy and an alternate treatment is required.
Can the dose be reduced if i have a lot of side effects?
it is very important to try to maintain the highest tolerable dose during chemotherapy
treatment. Studies have shown that reducing the dose or delaying chemotherapy treatments
until side effects subside may decrease the likelihood of cure and the chances for long-term
survival in some types of lymphomas. it is important for someone receiving chemotherapy to
understand that changing the dose or treatment cycle to reduce short-term side effects may
actually be harmful in the long run. However, quality of life is valuable as well, and you need to
decide whether the side effects are tolerable or not. it is important to make this decision in an
informed way and understand the potential consequences of your choice.
What are the side effects of chemotherapy
Many people are frightened by the side effects of chemotherapy. However, it is important to
understand that:
• Not all people who receive chemotherapy experience side effects
• Side effects are not always severe, they can be mild
• Different chemotherapy drugs have different side effects
• Doctors are familiar with chemotherapy side effects and can treat them so they are less
severe and, sometimes, even prevent them from happening altogether.
Many of the side effects caused by chemotherapy are due to the effect the medications have
on the healthy, non-cancerous cells of the body. The following table outlines the most common
cell types affected as a result of chemotherapy, as well as the resulting side effects. For more
detailed information on the side effects of chemotherapy, see the chapter “Managing Treatment
Side Effects”.
Cells Affected Associated Side Effects
Cells of the digestive system including the
mouth, oesophagus, stomach and
intestines/bowel.
Cells of the skin and hair • Hair loss
Cells of the bone marrow: red blood cells,
white blood cells and platelets
Page 72 | Living with Lymphoma - Lymphoma Treatments
•
•
•
•
•
•
•
Mouth sores
Sore throat
Diarrhoea/constipation
Nausea
Vomiting
Changes in taste
Loss of appetite
Decreased blood cell production
(myelosuppression) including:
• Anaemia (decrease in red blood cells)
• Neutropenia (decrease in white blood
cells)
•
Thrombocytopenia (decrease in
platelets)

Being Informed:
Useful Questions to Ask Before Receiving Chemotherapy
•
•
•
•
•
•
•
•
•
•
What chemotherapy will i be receiving?
What is the expected outcome of my chemotherapy?
What is the schedule (treatment cycle) and how long will i be receiving chemotherapy
treatment?
What side effects will i experience? How serious are they? Can they be managed with
treatment?
What should i do to try to stay healthy and strong during my treatment?
Can i come for my chemotherapy treatments alone or do i need assistance?
How is the treatment monitored to determine whether or not it’s working?
What symptoms should prompt me to call the doctor’s office?
is there a possibility this treatment may effect my fertility?
What are my options concerning this?
i asked my haematologist and my nurses
so many questions for what to expect
when i was at home in between my
treatments. i wanted to be doing as much
as i could to help my treatment be
successful.
- Tanya
“
”
Radiation Therapy
Unlike chemotherapy which is a systemic therapy (affecting the whole body as it is infused into
the bloodstream), radiation therapy is a local therapy meaning that it only treats the area of the
body where the cancer is located. Radiation therapy is often combined with chemotherapy but is
sometimes used alone as the main treatment.
How does radiation therapy work?
Radiation therapy (also called radiation or radiotherapy) uses high-energy X-rays to kill cancer
cells. The X-rays cause damage to the cell’s DNA (the genetic material of the cell) which makes
it impossible for the cancer cell to repair itself and causing the cell to die. The radiation does
not distinguish between cancerous and non-cancerous cells and therefore the surrounding
healthy cells are also affected. Care is always taken when planning the treatment to ensure that
other areas of the body are affected as little as possible. Normal cells affected by the radiation
have a greater capacity to heal themselves than the lymphoma cells.
Living with Lymphoma - Lymphoma Treatments | Page 73

How is radiation therapy given?
A radiation field is the area of the body which will receive the radiation therapy. To clearly
outline the radiation field the skin is marked with tiny ink dots called tattoos. This ensures that
the appropriate area is targeted for the radiation and that the exact same area is treated each
time.
Radiation is usually confined to lymph nodes or the area immediately surrounding the lymph
nodes. The radiation field is different in each person and depends on many factors including the
type of lymphoma and the extent of the disease. Healthy areas are shielded from the radiation
with lead shields, which block the path of any stray radiation beams and prevents them from
affecting the DNA of normal cells.
Prior to your radiation therapy you may attend a planning session with a radiation technician,
a nurse and a specialist doctor. At the beginning of radiation treatment, you will be carefully
positioned on a treatment table, with the lead shield protection in place for the parts of the body
not being treated. You must lie completely still during the treatment. Often a mould is created
or certain props such as pillows or rolled blankets are used to limit movement. Above the
treatment table is the large machine which delivers the radiation. The actual treatment lasts
only for a few minutes and causes no pain or discomfort.
Radiation therapy is most often given on an outpatient basis. You may have to visit the hospital
as many as five times per week during a course (cycle) of radiation therapy. The total dose
deemed appropriate for you is divided up and given over a period of one to six weeks. Each
dose of radiation is called a fraction and the radiation oncologist prescribes a total number of
fractions for your specific treatment.
Patient receiving radiation therapy
Page 74 | Living with Lymphoma - Lymphoma Treatments

What are the side effects of radiation therapy?
Although the radiation treatments are painless, there may be some associated side effects.
These are usually limited to the area of the body receiving the radiation and may vary based
on the targeted site. The most common side effects are listed in the following table. For more
detailed information on the side effects of radiation therapy, see the chapter “Managing
Treatment Side Effects”.
Targeted Area Possible Side Effects
Head and neck (areas affected can include
the scalp, mouth and throat)
Chest (areas affected can include the
oesophagus and breasts)
“
Radiation was ok for me. i received 4 weeks
of radiation where i had to go to the hospital 5
days a week. i was able to maintain a relatively
normal lifestyle during my treatment.
”
- Adeline
Abdomen • Nausea
• Diarrhoea
“
i found the radiation the easiest of all my
treatments. it was just like getting an Xray,
i didn't feel a thing .
”
- Michael
•
•
•
•
•
•
Hair loss (on the scalp or anywhere
the radiation is targeted)
Loss of appetite and taste
Dry mouth
Throat irritation
Skin reaction
Difficulty swallowing
Living with Lymphoma - Lymphoma Treatments | Page 75

Are there long-term side effects with radiation therapy?
it is possible for radiation to cause long-term side effects. The following table outlines the
possible consequences of radiation given to different areas of the body. it is important to
discuss these risks with your doctor if you feel concerned.
Treatment Area Possible Long-Term Effect What You Can Do
Pelvis or groin
Chest and breasts
Skin
Neck
infertility
Breast cancer
Being Informed:
Page 76 | Living with Lymphoma - Lymphoma Treatments
Ensure that the testes/ovaries
are shielded from radiation
if they are not the target of
the treatment. if you have
not yet had children, talk
to your doctor about the
risks associated with having
children after radiation
therapy.
Long-term breast cancer
screening is very important.
Skin cancer Long-term skin cancer
screening is very important.
Protect your skin from the
sun by using sunscreen and
minimising exposure.
Thyroid cancer Discuss the risks with your
doctor and have your thyroid
checked on a regular basis.
Useful Questions to Ask before Radiation Therapy
•
•
•
•
•
•
•
•
•
•
•
•
What is the expected outcome of my radiation therapy?
How will the radiation be given to me?
When will treatment begin? How long is each treatment? How many treatments will i need?
is the treatment painful?
What side effects will i experience? How serious are they? Can they be managed with any
special or prescribed medications?
What are the long-term side effects of radiation treatment to this area of the body?
What should i do to try to stay healthy and strong during my treatment?
Can i come for my radiation treatments alone or do i need assistance?
How is the treatment monitored so that we’ll know if it’s working?
What symptoms should prompt me to call the doctor’s office?
is there a possibility this treatment may effect my fertility?
What are my options concerning this?

Biologic Therapies
Biologic therapies are treatments that work by using the body’s own immune system to fight
the cancer. There are different types of biologic therapies including:
•
•
•
•
•
•
Monoclonal antibody therapy
Radioimmunotherapy
interferons
Vaccines (under clinical investigation)
Anti-angiogenesis therapies (under clinical investigation)
Gene therapies (under clinical investigation)
Monoclonal Antibody Therapy
The development of monoclonal antibodies has been one of the most significant advances in the
treatment of many cancers, including NHL.
Monoclonal antibodies are a more specific therapy than chemotherapy, meaning that they are
directed at a target that is primarily located on tumour cells, as opposed to normal body cells.
Not only does this make for very effective cancer treatment, it also greatly reduces the side
effects, as normal cells are minimally affected. A monoclonal antibody can be compared to a
guided missile that identifies an exact target and kills it.
“
Having my top-ups of MabThera every three
months is a way of life for me now. i am usually
tired for a couple of days after each visit , but
i am able to go about my usual life of working
and spending time with my family and friends.
- Anne
”
How do monoclonal antibodies work?
All cells have special protein markers on their surface called antigens. Monoclonal antibodies
are specifically manufactured in a laboratory to recognise one type of antigen. For NHL, the
monoclonal antibodies are specifically targeted to antigens found on lymphocytes - the cells
that lymphomas are derived from. The attachment of the monoclonal antibody to its target
antigen triggers the cell to destroy itself and signals to the body’s immune system to attack and
kill the cancer cell.
Several monoclonal antibodies are available for the treatment of NHL and many more are
under clinical investigation. The most commonly used monoclonal antibody in the treatment of
lymphoma is MabThera® (rituximab).
Living with Lymphoma - Lymphoma Treatments | Page 77

How does MabThera work?
MabThera is a monoclonal antibody that tightly attaches itself to the CD20 antigen on the
surface of B-cells, the cancerous cell in many types of NHL. The CD20 antigen is also present
on the surface of healthy, non-cancerous B-cells, which means that MabThera will also attach
to and facilitate the destruction of these cells. However, normal B-cells, like all blood cells, are
made from stem cells in the bone marrow, and these stem cells do not have the CD20 antigen.
This means that they are not affected by MabThera and so are not destroyed. Stem cells can
then replenish the store of healthy B-cells in the body. So although during treatment with
MabThera the number of mature, normal B-cells is temporarily reduced, their levels return to
normal once the treatment is completed.
MabThera is a commonly used treatment for patients with either indolent or aggressive NHL.
it is used on its own or in combination with chemotherapy and has been shown to increase the
length of remission in indolent (slow growing) NHL. it can also increase a person’s chance of
cure in aggressive (fast-growing) NHL.
Monoclonal Antibody Therapy
How is MabThera given?
MabThera is given intravenously and can be given alone or in combination with chemotherapy,
often increasing the effectiveness of chemotherapy treatments. Medications are given prior
to MabThera to prevent side effects occurring during the intravenous infusion. if side effects
do occur, the treatment can be given at a slower infusion rate or stopped until the side effects
pass. When given on its own MabThera is usually given as four weekly treatments over a 22day
period (cycle). When given in combination with chemotherapy, one dose of MabThera is
administered with each cycle of chemotherapy treatment.
Prolonged treatment with MabThera, called “MabThera maintenance” therapy, may also
be given for the treatment of people with follicular NHL who have responded to their initial
MabThera treatment. The MabThera maintenance therapy is generally given once every three
months for a period of two years. This ongoing MabThera treatment has been shown to sustain
the response obtained from the initial therapy and may improve survival for people with
follicular lymphoma.
Page 78 | Living with Lymphoma - Lymphoma Treatments

Patient receiving MabThera Treatment
Are there side effects from MabThera monoclonal antibody therapy?
Unlike the side effects associated with chemotherapy and radiation, most of the side effects
from MabThera treatment are minor and short-lived, lasting only during the actual infusion and
for a few hours afterwards. The chances of experiencing side effects also decrease with each
treatment received because the person adjusts to the treatment and, as treatment continues,
there are fewer lymphoma cells to kill. The most common side effects are flu-like symptoms
including fever, chills and sweating. Less common side effects include nausea, vomiting, rashes,
fatigue, headache, wheezing, infection, and a sensation of tongue or throat swelling. People are
monitored throughout their treatment infusion session for signs of allergic reactions including
itching, rashes, wheezing and swelling. if these symptoms occur, the treatment is slowed down
or stopped for a short time until the symptoms subside. An antihistamine (e.g. Benadryl) and
paracetamol are commonly given before treatment to avoid allergic reactions.
Radioimmunotherapy
Radioimmunotherapy uses both radiation therapy and monoclonal antibody therapy to fight
lymphoma. A radioactive molecule (a molecule that emits radiation and is capable of killing
cancer cells) is attached to a monoclonal antibody so that the radiation is delivered specifically
to lymphoma cells (see the previous section on Monoclonal Antibody Therapy for a more
detailed explanation of how this works). Once attached, the radiation kills the cancerous B-cell
as well as any other lymphoma cells that are nearby. This form of treatment requires highly
specialised facilities and is available in only a few hospitals in Australia.
Patient receiving Radioimmunotherapy
Living with Lymphoma - Lymphoma Treatments | Page 79

interferons
interferon is a protein molecule that is naturally produced by the body’s immune system to help
fight infection and kill cancer cells in the body. A synthetic form of interferon has been produced
and is used to treat certain kinds of NHL and other forms of cancer. it is thought that interferon
kills tumour cells directly and signals to the rest of the immune system to do the same.
interferon can be given as a maintenance therapy to prolong the remission of patients
previously treated with chemotherapy. However, due to the large number of associated side
effects and the array of newer treatment options, interferon is not routinely used in the
management of NHL.
Vaccines
Vaccines work by injecting into the body an inactive portion of a disease molecule that is too
weak to cause the disease but strong enough to stimulate antibody production. Upon future
exposure to the same disease, the body will be ready to mount a strong attack against it.
Vaccines are currently being studied as a potential treatment for lymphoma but are not yet
approved for use. These vaccines are custom-made from each person’s unique tumour - a
small amount of a person’s tumour is taken from a lymph node, modified to make it look like a
foreign invader (so the person’s immune system will attack it), and re-introduced into the body
to stimulate antibody production and an immune response. The aim is that the immune system
will then attack the tumour and break it down.
it is not yet known how effective these vaccines will be. A major goal of cancer treatment is the
development of therapies that are less toxic than chemotherapy or radiation therapy. Vaccines,
like monoclonal antibodies, could provide a new option.
Patient receiving vaccine injection
Page 80 | Living with Lymphoma - Lymphoma Treatments

Anti-angiogenesis Therapy
Angiogenesis means the development of new blood vessels. Many cancers are able to stimulate
angiogenesis causing new blood vessels to form which supply energy and nutrition to the
growing tumour. Anti-angiogenesis therapies work to stop the development of new blood
vessels and destroy existing abnormal vessels surrounding tumours. The goal is to cut off the
fuel supply to growing tumours, causing tumour cell death. Anti-angiogenesis therapies are
currently under investigation in the therapy of lymphoma.
Gene Therapy
The main goal of gene therapy is to alter the genetic structure of cancer cells so they can
no longer grow, or so they can be recognised as foreign by the body’s immune system and
destroyed. Other kinds of gene therapies may be able to make cancer cells more vulnerable to
chemotherapy and normal cells less vulnerable. This could increase the effectiveness of the
chemotherapy but decrease the toxic side effects. Gene therapies are still under investigation in
the treatment of NHL and other cancers.
Bone Marrow and
Stem-Cell Transplants
Bone marrow is the spongy tissue inside the large bones of the body that is responsible for
all blood cell production: red blood cells, white blood cells and platelets. These cells are all
developed from precursor (initiating) cells called stem cells, which can be found in the bone
marrow and the circulating blood
What is the difference between a bone marrow
transplant and a stem-cell transplant?
There are two different types of transplants: bone marrow transplants (BMTs) and peripheral
blood stem-cell transplants (PBSCTs). The difference between the two is where the stem cells
are taken from. in BMTs, the stem cells are taken from the bone marrow; in PBSCTs, the stem
cells are taken from the circulating blood.
PBSCTs are now performed more often than BMTs as the procedure is easier and the body is
able to regenerate new stem cells faster.
Where do the transplanted stem cells come from?
Stem cells are transplanted into a person after myeloablative therapy (chemotherapy or
radiation therapy that destroys the stem cells in the bone marrow).
The transplanted stem cells can come from two sources:
•
•
Autologous stem cell transplant
Allogeneic stem cell transplant
Living with Lymphoma - Lymphoma Treatments | Page 81

•
•
Autologous stem cell transplant: the person themselves provides the stem cells before they
receive the myeloablative (high dose) treatment
Allogeneic stem cell transplant: the stem cells are provided by a compatible donor, such as
a sibling
Autologous stem cell transplants are more commonly performed in the management of
lymphoma as they are better tolerated by the person with cancer.
How are transplants performed?
Four steps are involved in a stem cell transplant (BMT or PBSCT):
•
•
Harvesting stem cells or bone marrow: Harvesting is the procedure by which the bone
marrow or stem cells are obtained in preparation for the transplant. in a BMT, the stem
cells are withdrawn from the bone marrow by inserting a needle into a bone in the pelvic
region (hip). The bone marrow is then filtered and stored until the day of the transplant.
in a PBSCT, stem cells are taken from the bloodstream, a far easier and more commonly
used option. The stem cells are separated from other components of the blood in a process
called apheresis, and the rest of the blood is returned to the patient.
A stem cell harvest on the apheresis machine
Processing/preserving the stem cells or bone marrow: Stem cells or bone marrow harvested
from the person (autologous transplant) are usually stored in a freezer until ready
for use. Stem cells or bone marrow derived from a donor (allogeneic transplant) are usually
collected immediately before use and not stored for any length of time.
Storage of stem cells for transportation
Page 82 | Living with Lymphoma - Lymphoma Treatments

•
•
Administering myeloablative therapy: High-dose chemotherapy, with or without myeloablative
radiation therapy, is then administered to the person to destroy the cancerous cells,
as well as the healthy cells in the bone marrow.
Administering myeloablative therapy
Reinfusing harvested stem cells or bone marrow: The harvested stem cells or bone
marrow (obtained from either the person’s own healthy cells or from a donor) are then
transplanted intravenously into the person’s bloodstream. The stem cells travel through the
body to the bone marrow where they settle and begin to produce new, healthy blood cells.
Eventually, they will produce enough healthy cells to repopulate the whole bone marrow,
replenishing all blood and immune cells.
Preparation of cells for reinfusion
in the period of time between the myeloablative therapy and the transplanted stem cells
beginning to make new blood cells, the person is at an increased risk of infection and bleeding
complications, and must be closely monitored.
After my first relapse my stem cells were
harvested in the event of needing a transplant
down the track. Luckily this was done, as
i did not respond well to chemo and had the
option to have a stem cell transplant. My
transplant was successful and i have been
in remission for 5 years now. The road to this
point was challenging at the very least, but
i made it and that is all that counts.
- Glen
“
”
Living with Lymphoma - Lymphoma Treatments | Page 83

What are the side effects of transplants?
Transplants are very strenuous procedures and take weeks or months to complete. They also
take a large toll on the body. As such, they are not an option for everyone. Various factors,
including age, medical history, type of lymphoma and response to previous therapies are
considered.
A major risk associated with transplants is infection, due to the loss of immune function from
the myeloablative therapy. Excessive bleeding is also a concern due to the loss of platelets
(necessary for effective blood clotting). Both of these side effects are treatable, with antibiotics
given to prevent infection and platelet transfusions to prevent bleeding. Transfusions of red
blood cells may also be required to treat anaemia.
Some side effects of stem cell transplant are similar to those seen with chemotherapy and
radiation therapy, such as nausea, vomiting, fatigue, loss of appetite, mouth sores, hair loss
and skin reactions. These are mainly due to the side effects of the myeloablative therapy.
Some long-term side effects of myeloablative therapy can include infertility (the inability to
have children), cataracts (a clouding of the lens of the eye that can result in decreased vision),
damage to various organs including the liver, kidneys, lungs and heart, and the potential for a
new cancer to develop.
A complication called graft-versus-host disease (GVHD) can occur with allogeneic transplants.
The immune cells from the donated tissue (called the graft) can react against the cells of the
person who received the transplant (the host) and attack them. This can cause damage to the
person’s organs, including skin, liver and digestive tract. This reaction can occur within a few
weeks of the transplant procedure (called acute GVHD), or much later (called chronic GVHD).
GVHD can be serious and difficult to treat. Doctors commonly try to prevent it ahead of time
using medications and specific procedures that can reduce the immune reaction of the donor
and the recipient.
it was during my stem cell transplant
that i discovered the power of the mind.
i used my mind to take me to places
where i wanted to be - i played golf on my
favourite golf course, played every shot
but still never hit a hole in one.
- Michael
“
”
What happens after Treatment?
When your treatment is completed you will continue to have follow-up appointments with
your specialist doctor. Usually these are quite regular (monthly) to start with but, if remission
continues, they will decrease in frequency to 6 monthly appointments and then once a year.
Follow-up appointments can be difficult due to the worry of the disease relapsing. But these
appointments are an important part of your care – it allows the doctor to assess your progress
and it gives you the opportunity to talk about any concerns you may have. if you are worried
about anything or experience any change in how you are feeling in between these appointments,
you should call your doctor and bring your appointment forward.
it is also important to have regular contact with your general practitioner (GP) as he or she can
offer support and advice on a more regular basis, if needed. Monitoring your general health and
staying fit and well should be an ongoing commitment for everyone – it is our most precious
asset!
Page 84 | Living with Lymphoma - Lymphoma Treatments

PARTICIPATING IN
CLINICAL TRIALS
A major part of developing new treatments involves clinical trials—carefully
planned research that is conducted on patients in order to test new
medications or new treatment approaches. The new treatment is usually
compared with an existing treatment to assess if the outcome is more
beneficial for patients.
Participating in Clinical Trials
What Happens after Treatment?
06
Living with Lymphoma - Clinical Trials | Page 85

Page 86 | Living with Lymphoma - Clinical Trials
keN jAmeS’ SToRy
I was diagnosed with Non Hodgkin Lymphoma on the 23rd December 2009. Since that day
my life has had some interesting turns. Having been in show business all my life, I thought
I had led a very interesting life up until then .Being told the world you thought was fine
was about to undergo some mighty changes came as a bit of a shock. It is amazing how a
life threatening illness can bring things into perspective pretty quickly. A lot of people ask
me how I discovered something was wrong.
I simply felt a lump on my neck whilst I was shaving and thought I should see my G.P. That
was an important decision, to have it checked as soon as possible. A lot of men feel an illness
is a weakness and tend to stick their heads in the sand hoping it will go away. Big mistake!
Cancer has been present in my family, having lost a sister to melanoma and an aunt to breast
and lung cancer. It is an insidious disease and not to be taken lightly. Fortunately after a
few chemo sessions I am in remission and hope to stay that way. I firmly believe the body
manifests what the mind dictates. So I maintain a very positive outlook and do not associate
with negative people or have negativity around me.
I haven’t had any adverse reaction to mabthera, the drug prescribed for my chemo, so I
have not had the pain or loss of hair often associated with chemo. Perhaps I wouldn’t be as
positive if the situation were different. I do know that I would take it head on if it were.
Friends and loved ones are also an important part of the therapy and healing process. I have
been fortunate my fiancée Rosemarie has been with me every step of the way and supports
me. She also keeps me grounded and won’t let me play “The Cancer Card” for sympathy. I
guess she knows me pretty well.
Walking into Peter mac hospital for treatment I see some very sick patients that are one of
the things I found hard to come to terms with. I keep saying to myself, “there but for the grace
of God go I “.
So every day is a good one and this month we are off to europe for five weeks holiday. just
because you have cancer doesn’t mean you stop enjoying life.
- ken
Regards and Best Wishes ken james

PARTICIPATING IN
CLINICAL TRIALS
Participating in Clinical Trials
many people respond very well to lymphoma treatments. However, there are some people who
do not respond as well to treatment and there are some types of lymphoma where treatment
is less successful. As such, research is constantly searching to develop new treatments and to
improve existing ones.
Doctor Wolf explaining the benefits of participating in a clinical trial
What is a Clinical Trial?
A clinical trial is a type of research where patients may elect to participate in clinical trials
which evaluate new treatments. A clinical trial can test many aspects of treatment, including
the safety and effectiveness of new medications, the addition of new medications to standard
treatments and potential new methods of administering standard treatments.
Trials usually compare a new treatment with a standard treatment whose effects are already
known. These trials are called randomised controlled trials. In these trials, half the patients
receive the new treatment and half receive the standard treatment. A computer determines
which patient receives which treatment to ensure that the comparison is truly objective and not
biased. This is the process of randomisation and hence the term randomised trial. If the doctors
who treat the patients were to decide who receives the new treatment and who does not, they
might be biased towards choosing
the sickest patients to receive the new treatment, making the results less accurate and less
reliable for the future. The protocol of a clinical trial is examined and approved by ethics
committees and must meet rigorous government and medical standards.
Living with Lymphoma - Clinical Trials | Page 87

A significant amount of careful, detailed research is conducted on the new medication before it
reaches the stage where it is tested on patients.
There are different types of trials in which a person may participate. They are listed in the
following table:
Phase 1
Phase 2
Phase 3
Phase 4
Trial Type major Differences
Professor mark Hertzberg Chairman ALLG
Page 88 | Living with Lymphoma - Clinical Trials
Tests for safety and appropriate dose of a new treatment (does
not compare it with another treatment)
Uncertain risk of side effects
Usually includes only a small number of patients who often have
advanced disease that has not responded to current treatments
Tests for side effects and effectiveness of new treatment (does
not compare it with another treatment)
Larger number of patients than a Phase I trial
Further tests the new treatment on large numbers of patients
once the Phase 2 trial has shown the treatment to be safe and
effective
The new treatment is compared with a standard treatment
to assess if the outcome is more beneficial for patients
(randomised controlled trial)
Further study of the treatment after it has been approved for
use in clinical practice

What are the benefits of participating in
a clinical trial?
Investigational treatments are not available to people outside of a clinical trial. For a treatment
to be given to people in Australia, it must have been rigorously studied and tested, and must
be approved by the Therapeutic Goods Administration (TGA). The TGA is the government body
which assesses and monitors all therapeutic goods to ensure that they are of an acceptable
standard before becoming available to the Australian community.
The main benefit of participating in a clinical trial is that people can receive new treatments that
are not yet available for clinical practice. For example, if a person has received the standard
therapy for their particular type of lymphoma and has not achieved the desired response, a
clinical trial may be a good option.
What are the risks associated with participating
in a clinical trial?
you should be aware of the risks before participating in a clinical trial. They include:
•
•
•
The treatment may be toxic such that you may experiences severe side effects
The treatment may prove less effective than standard therapies and offer little or no benefit
you may be in the control group of the clinical trial and as such may receive a standard
lymphoma therapy and not the experimental drug.
People who choose to take part in a clinical trial must give informed consent. This means they
acknowledge that they understand both the potential benefits and associated risks and that
they are a willing participant. No person should be forced or pressured into participating in a
clinical trial. Furthermore, once a person is in a trial they have the right to leave the trial at any
time without explanation. Leaving a trial will in no way affect the attitude of your healthcare
team, and you will still receive the best current standard treatments.
What happens after Treatment?
When your treatment is completed you will continue to have follow-up appointments with your
specialist doctor. Usually these are quite regular (monthly) to start with but, if remission continues,
they will decrease in frequency to 6 monthly appointments and then once a year.
Follow-up appointments can be difficult due to the worry of the disease relapsing. But these
appointments are an important part of your care – it allows the doctor to assess your progress
and it gives you the opportunity to talk about any concerns you may have. If you are worried about
anything or experience any change in how you are feeling in between these appointments, you
should call your doctor and bring your appointment forward.
It is also important to have regular contact with your general practitioner (GP) as he or she can
offer support and advice on a more regular basis, if needed. monitoring your general health and
staying fit and well should be an ongoing commitment for everyone – it is our most precious asset!
Living with Lymphoma - Clinical Trials | Page 89

ADeLINe’S SToRy
I had Breast Cancer in 1998 and was diagnosed with non-Hodgkin Lymphoma, specifically,
Grade I Follicular B Cell NHL in August 2001. yes, it has been quite a journey for me, and quite
a learning curve along the way.
After being diagnosed with Breast Cancer in may 1998 I had a subcutaneous mastectomy,
which is an operation that carefully removes the fatty glandular tissue inside the breast, but
leaves the skin for a breast implant. I originally was to have the breast implant done during
the one surgery, but due to other major medical problems this was postponed to a later date.
In july 2001, I again went into hospital for breast re-construction, with the breast surgeon
removing any tissue left and a plastic surgeon doing the breast implant. During the removal of
the remaining tissue in the Left breast area, the surgeon noticed 2 lymph nodes that appeared
slightly larger than normal, so he took them out and sent them to Pathology. Three days later
the surgeon said, "Well there's no breast cancer" and I said,"Thank god for that!" But little did
I know that pathology wasn't happy with the results, so they did more testing and it was sent
to about 4 different pathologist and 27 days later my GP phoned one evening to say he was
coming to see me that night at my home regarding the lymph nodes sent to pathology. Well,
he arrived at 9.20pm to tell me that I may need chemotherapy as it looks like I have NHL. I had
to see a Haematologist. I was shocked, stunned and numb and I did not comprehend much at
all. even my dear GP whom I know quite well could not believe it.
So my journey with Lymphoma began with the usual CT scans, blood tests, and bone marrow
tests. I consider myself lucky in that the Lymphoma is not being made in my bone marrow
and the CT scan showed only another 2 lymph nodes in my Left Axilla and a slightly enlarged
spleen. I had 18 radiation treatments and now have blood tests and doctor's visits about 3
times per year to keep a check on everything.
I also consider myself lucky, in that if I didn't get breast cancer they may not have found the
Lymphoma for many years and then it may have been much further advanced.
Having cancer has changed my life. I appreciate life a lot more and have found out who my
true friends are and don't take things for granted anymore. I have met some wonderful
friends and great support from the Lymphoma Australia organisation. I also realize we are all
here for a good time and not a long time and we all will have a few hiccups along the way, so
try to stay positive, enjoy and make every day count.
- Cherish yesterday, live for today, dream of tomorrow.
Page 90 | Living with Lymphoma - Clinical Trials
- Adeline

MANAGING
TREATMENT SIDE EFFECTS
Chemotherapy and radiation therapy are commonly used in the treatment
of lymphoma. However they may cause a range of side effects with varying
degrees of severity. The following chapter provides further detail on some of
the side effects you may experience whilst receiving chemotherapy and/or
radiation therapy. It also provides some tips on how to minimise and manage
these side effects.
Managing Treatment Side Effects
07
Living with Lymphoma - Managing Treatment Side Effects | Page 91

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Page 92 | Living with Lymphoma - Managing Treatment Side Effects

KELLY’S SToRY
on the 23rd of June this year I am celebrating my Five Year Remission
Anniversary!
I never thought that I would be celebrating an occasion like this at such a young
age. I grew up in a tiny country town outside of Brisbane, Australia with a
loving family. Life was very normal and very easy. I moved to Brissie to study at
university and started working in Echocardiography. I was always very active in
running, swimming, touch football, and golf.
I was diagnosed with Non-Hodgkin’s Lymphoma when I was 23 years old. At the
time I was fit, healthy, and happy. I started feeling dull chest pain which initially
was easy to ignore. I ended up speaking to a few doctors who all said that it
was nothing to worry about just inflammation of my rib spaces. Slowly the pain
became more intense and I also developed a bad cough and broken capillaries
on my chest. on seeing the next doctor I mentioned these new symptoms and asked if I could have a chest X-ray. A few
days later I had the x-ray and was told that I must report to my doctor first thing in the morning. At the time, all I was
concerned about was whether I was allowed to play touch football that night.
The next morning would change my life forever. I can remember my doctor telling me (with tears in her eyes) that I had
a tumour the size of a rockmelon in my chest and that there was a possibility that it was cancer. I was speechless and
despite having a very close bond with my parents, I couldn’t call them. I physically could not get the words out. I think
it was because I didn’t want to upset or disappoint people that I loved. Thankfully, my doctor phoned my mum and dad
for me. I started having tests immediately. Within two days of my diagnosis, I had been admitted to hospital. The doctors
were concerned because my right lung had collapsed and there was reduced blood flow to my brain. one of the hardest
things I had to do at this time was tell my sister and friends what was going on when I understood very little. I was
upsetting and worrying so many people. Within two weeks, I had two operations and commenced Chemotherapy. I had to
make big decisions about risky surgeries and marriage and if I wanted to have children. Life had certainly changed. I can
distinctly remember someone asking me if I was angry. I wasn’t angry at all, I was just really really sad and afraid.
A few months after starting Chemo, I was told that the Chemo was working and that the tumour had almost halved
in size. It was amazing to hear those words. I think knowing that the Chemo was working encouraged me to be more
positive and determined. Each time I had Chemo I would strike another ‘dose’ off the calendar – one step closure to Cure
was my Mantra. I was quite literally counting down the days. I tried to make the most of my time by reading, cooking
dinners, catching up with friends and family, walking the dog and continuing my studies. one thing worse than Chemo
– Chemo plus statistics – but it kept my mind off Cancer. I received Chemo for a number of months and then had another
operation where I had tubes put into my chest.
on the day that I found out that I was officially in Remission, I was so overwhelmed. It was a very happy day. I wanted to
say so much to thank my oncologist but all I could say was ‘We did it!’ There was such relief not only for me but for all the
people who were supporting me. Soon after, I had a Stem Cell Harvest. It was long and tiresome but it also allowed me to
feel as though I was giving myself every possible opportunity to ensure that I stayed in Remission.
My journey through Cancer and Chemotherapy was certainly and undoubtedly a very hard time for me. There was a great
deal of sadness and frustration, not to mention the physical toll that the Chemotherapy had. Some days were consumed
by nausea, lethargy, exhaustion, and worse of all - waiting. Remarkably though, most of the time I was able to maintain a
positive attitude and a sense of normality. I guess I tried my best to focus on the future.
Now after 5 years, the thing that I am most reminded of and humbled by, is the endless kindness and generosity that I
was shown. My devoted family, my wonderful friends, my amazing colleagues and clinicians, and my community provided
me with unconditional support and love. They convinced me I had no choice other than to get better. Moreover, with the
support of charities and fundraising initiatives, I was assisted medically, emotionally and financially. A gift I can’t repay.
I am now fortunate enough to be living in London and travelling the world. I have many wonderful friends and a job I love
….. and most importantly I have my health.
I would like to use my Five Year Remission Anniversary as an opportunity to raise awareness for those diagnosed with
Cancer and to say Thank You to all of those people who helped to survive Cancer.
I am hoping you are able to help me with this. By raising much needed awareness and funds for Lymphoma Australia, we
will be providing further education and support for individuals with Cancer. Donations will also advocate the best possible
treatment for people diagnosed with Cancer, and fund medical research in an effort to find a cure for Cancer. So please
dig deep and donate. Every little bit counts.
Thanks for helping me to give back!
- Kelly
Living with Lymphoma - Managing Treatment Side Effects | Page 93

MIKE’S SToRY
August 27th 2010 the day I will never forget as long as I
live it was the day my GP delivered the news to me that I
had Lymphoma. My name is Michael Donnelly I am a 38
year old male coal mine worker married to a wonderful
woman, (my rock), Theresa Donnelly and I have never
really been sick a day in my life. I also have 2 wonderful
children Jessica 10 and Cody 8. on receiving this news I
was no different I suppose than any other person I was
extremely worried, what does this mean, what will happen
to me, will I be alright, not one of these answers my GP was able to give to me. From here
he referred me to a Haematologist, Dr Mark Bentley, in Brisbane.
However 8 days later on Saturday the 4th of September I woke up in the morning not feeling too well and my wife
commented to me that I was yellow. We immediately rang the GP who upon looking at me arranged for me to fly to
Brisbane that day where I was admitted to the Brisbane Private hospital. The following morning I met Dr Bentley
and he informed me that I was jaundice as the Bile ducts in my liver had closed of most likely as a direct result of
the lymphoma. From here he explained all the things that could happen to me, however he explained to me that
what I had was treatable and it was extremely important for me to remain positive. It was at this point the realities
of my situation started to present themselves as I had left home thinking that I would have some form of treatment
and then return home and periodically return to Brisbane at intervals for treatment. I asked Dr Bentley when
would I go home to which he replied not this year
I started off with a barrage of scans and tests, CT scans to determine the extent of the lymphoma and a bone
marrow test to find out if it was in my bone marrow which thankfully it was not, and countless blood tests followed
by a treatment regime called R-CHoP, a chemotherapy and steroid treatment regime that was to go over 16 weeks.
I spent 20 days initially in the hospital over which time I had 2 chemotherapy cycles and countless blood tests and
a drug called neulasta to assist with cell growth after each cycle of chemo. This was not cool as the pain coming
from your bones afterwards is somewhat uncomfortable to say the least. Upon release from hospital I used to
go every week to the day oncology unit on a Friday for a pick line dressing and the every second Wednesday for
rituximab (monoclonal antibody) followed by chemo on the Friday. Chemo is a different thing for everybody but in
saying that it is not what it was 10 years ago, I was quite fortunate in the sense that I never got sick throughout the
whole thing. At times I just felt quite flat and lethargic and just a bit off and I did not suffer too many of the side
effects (apart from losing all my hair) I think on the whole it was a positive experience and you have to look for the
positives where ever you can. Most visits to the day oncology unit were greeted by a little Irish nurse Lesley who
would greet you with a big smile and a how you goin today love.
Throughout the course of my treatment I had regular visits from my doctor and blood tests and CT scans to track
my progress all culminating in a PET scan on the 13th December. on the 15th my doctor uttered those words
- you are in remission. You can’t believe the sense of relief that flows through you when you hear those words. I
was lucky in the sense that the lymphoma had not shown up in my bone marrow so my last round of chemo was a
modified version which set me up to a point where I was able to have a stem cell harvest.
This is a procedure that involves a series of 4 needles a day to promote cell growth for 7 days at which point the
stem cells have flowed over into your blood stream and I was hooked up to a machine that separated stem cells
and plasma where they are stored and frozen so they can be given back to you later if required, if the lymphoma
returns. once again I have to reiterate this part of the process involved quite a bit of discomfort suffice to say it was
not cool however necessary and if I had to go through it again I would in a heartbeat. Throughout my journey I had
the pleasure of meeting some wonderful and truly inspirational people who helped me to realise that I can beat
this and life will go on and that self belief is a thing that will help you to beat this as well as the love and support of
your family and friends. During my treatment I read the book written by Lance Armstrong titled “It’s not all about
the bike”, I found this book to be a great inspiration to see that people can overcome adversity and rise above and
go on to achieve great things. IT TRULY HELPED ME.
I say to any person who is reading my story if you are starting this journey you can win and above all else keep
smiling and keep your chin up and carry that self belief with you and never give up life is a precious and wonderful
thing filled with great and fantastic experiences and people I have been given a second chance and I am not going
to waste a second of it.
KEEP SMILING. - Mike
Page 94 | Living with Lymphoma - Managing Treatment Side Effects

Nausea and Vomiting
Chemotherapy can often be associated with both nausea (the urge to vomit) and vomiting.
Nausea can sometimes be caused by radiation therapy targeted towards the abdomen and
may occur after the first treatment. Nausea also most commonly occurs on the day you receive
chemotherapy but can also occur in the few days following treatment.
Managing Nausea and Vomiting
Chemotherapy: Your doctor may prescribe an anti-emetic (a drug that prevents vomiting) or an
anti-nauseant (a drug that prevents nausea) to take before you begin chemotherapy. This can
help to prevent or minimise nausea and vomiting.
Radiation Therapy: Not eating in the few hours prior to your radiation treatment may help ease
nausea. Scheduling your treatments towards the end of the day may also be helpful, so if you
do feel nauseous you can deal with it at home. An anti-emetic or anti-nauseant drug may be
taken prior to the radiation treatment.
The following are tips to help ease nausea and vomiting symptoms and avoid dehydration:
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MANAGING
TREATMENT SIDE EFFECTS
Consume mostly liquids in the days before your radiation therapy or for the first one to
two days after your chemotherapy (return to solid foods once the feeling has gone). Soups
(broths, consommés) are a good choice; avoid milk-based soups
Avoid foods that are too hot, sweet or spicy
Eat smaller, more frequent meals throughout the day instead of three large meals
Get plenty of fresh air and try to avoid strong or unpleasant odours
If you do experience vomiting, be sure to stay hydrated (see the tips in the Diarrhoea/
Constipation section)
Take the anti-emetic/anti-nauseant medication prescribed by your doctor.
“
- Noelene
My nausea was sometimes overbearing.
I would sip on water and have a rest
when I felt this way
”
Living with Lymphoma - Managing Treatment Side Effects | Page 95

Diarrhoea
Diarrhoea is the term used to describe frequent and watery bowel movements. Diarrhoea is
a common side effect of chemotherapy or radiation therapy that is directed at the abdominal
area. The gastrointestinal tract (which includes the oesophagus, stomach, small and large
intestine) has an inner lining of rapidly dividing cells which, along with rapidly dividing cancer
cells, become a target of these treatments. This causes damage and irritation to the intestines
which can result in diarrhoea. Chemotherapy may also cause an increase in the normal wavelike
action of the intestines (called “peristalsis”) which can also lead to diarrhoea.
The most important consequence of diarrhoea is dehydration (a loss of body fluids). To avoid
dehydration, the following tips may be useful.
Managing Diarrhoea
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Drink plenty of water throughout the day
Avoid milk products as they may worsen your diarrhoea
Pay attention to the signs of dehydration: dry mouth or skin, decreased urination, and
dizziness or light-headedness upon standing
Take the medications your doctor recommends for controlling diarrhoea.
Constipation
Chemotherapy may also cause a decrease in peristalsis, causing constipation - the term used
to describe difficulty passing stools or a decrease in the number of stools passed compared
to your normal bowel activity. A decrease in peristalsis causes the stools to move more slowly
through your body, becoming hard and dry and more difficult to pass. Abdominal cramping and
an increased passing of gas (flatulence) can also occur.
Constipation can be at best uncomfortable and at worst very painful, but there are ways to help
relieve constipation.
Managing Constipation
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Drink plenty of water; fluids will help to keep the stools soft
If you are able to, eat foods high in fibre such as fruit and vegetables
Avoid cheese, meat and processed food
If you are able and your doctor approves, try to do some exercise every day such as going
for a walk. Exercise helps stimulate digestion and prevent constipation
Take the medications your doctor recommends for relieving constipation.
Page 96 | Living with Lymphoma - Managing Treatment Side Effects

Mouth and Throat Problems
Chemotherapy and/or radiation therapy may lead to side effects which affect your mouth and
throat such as:
• Mouth sores/ulcers: sometimes called mucositis, occurs when the inside of your mouth
becomes red, sore and irritated. Infections of the mouth may occur
• Dry Mouth: radiation therapy in the area of the mouth may cause a decrease in saliva
production, leading to a dry mouth (called xerostomia)
• Throat soreness/irritation: this may be due to decreased saliva production or a direct result
of radiation to the area or as a consequence of mucositis.
If you have a persistently sore mouth or throat whilst receiving treatment for your lymphoma,
you should tell your doctor.
Managing Mouth and Throat Problems
There are a number of things you and your doctor can do to prevent and treat mouth and throat
problems as a consequence of chemotherapy or radiation therapy:
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Drink lots of fluids to keep your mouth as moist as possible
oral hygiene is important, especially if saliva production is low (saliva is an important
natural antibacterial)
Clean your teeth gently after each meal with a soft, nonabrasive toothbrush
Rinse your mouth frequently with a salt and water combination or soda
Your doctor may recommend you visit your dentist prior to receiving radiation and/or
chemotherapy
Use lip moisturiser to avoid dry, irritated lips
Avoid mouthwashes that contain alcohol
Avoid citrus fruits, citrus juices and spicy foods
Eat softer foods so they are easier on the moist tissues of your mouth
Avoid flossing your teeth if your blood cell counts are low.
“
I was paranoid about getting mouth ulcers,
so I followed a strict oral hygiene routine and
was careful of what I was eating. This proved
to be successful, as I got through my full 3
months of treatment with only a minor ulcer
”
- Tanya
Living with Lymphoma - Managing Treatment Side Effects | Page 97

Difficulty Swallowing
Radiation therapy may result in you experiencing difficulty swallowing due to a dry mouth/
throat. In some cases the radiation may affect the oesophagus, which is involved in swallowing;
this may also lead to difficulty swallowing.
Managing Swallowing Difficulties
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Drink plenty of fluids for hydration and to keep your mouth/ throat moist
Eat softer, easily digestible foods which may help reduce pain on swallowing and move
more easily through the digestive system. Healthy shakes and nutritious soups are good
choices
Eat smaller meals more frequently to help ease the irritation in your mouth/throat.
Loss of Appetite and Taste
Following radiation therapy you may find that foods you previously enjoyed no longer appeal to
you. You may also not feel as hungry as you normally do. Loss of appetite is also a common side
effect of chemotherapy. It may be a result of other symptoms such as nausea and vomiting or it
may be that the chemotherapy has altered the taste of foods - familiar foods can taste different
(called dysgeusia) or food flavours can taste less intense than normal (hypogeusia). Taste
changes are usually temporary and disappear once chemotherapy treatment is completed.
Managing Loss of Appetite and Taste
Certain foods may be more appealing than others. If foods are not appetising they may need to
be avoided for a period of time and then gradually re-introduced.
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Keep your mouth fresh and clean; frequent mouth rinsing may help
Eat smaller, more frequent meals throughout the day
Avoid strong odours, food preparation and hot food
Drink plenty of fluids to stay hydrated
Try to eat healthy foods to keep your energy up and for optimal nutrition.
Hair Loss
Hair loss (also called alopecia) is a common side effect of chemotherapy and can affect the
hair of the scalp, eyebrows, eyelashes, arm, legs and pelvic region. It affects different people in
different ways, some people may lose all their hair and some may only experience thinning of
their hair.
Hair loss or thinning usually begins gradually, within two to three weeks of your first
chemotherapy treatment. This can be a very distressing side effect for people. However, not
everyone experiences hair loss and most people have a normal amount of hair again within six
months after their final chemotherapy treatment.
Page 98 | Living with Lymphoma - Managing Treatment Side Effects

Hair loss from radiation therapy is not like the general hair loss that occurs with chemotherapy.
It involves only a patch of hair loss depending on the area of the body that receives the
radiation. If the radiation was targeted at the head, a patch of hair loss may occur on the head.
If the radiation was targeted at a specific lymph node in the groin area, there may be a loss of
hair in the groin region. The hair loss is usually temporary, but can be permanent with high
doses of radiation.
Managing Hair Loss
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Pat your hair dry rather than rubbing it vigorously with a towel
Avoid using hair dryers, curling or straightening irons
Avoid dying your hair or using other chemicals
Wear a hat when exposed to the sun, as areas of hair loss are very susceptible to sun
damage
Consider wearing a hat, wig, scarf, turban or head wrap if it makes you feel better
If you are having radiation therapy, you may require special shampoos or soaps. You can
ask your radiation oncologist if these would be helpful for you.
Skin Reactions
Following radiation therapy, the area of skin that was exposed to the radiation may become red,
irritated, itchy and flaky. Moist areas like the mouth may be more severely affected and may
require treatment. It often looks and feels as though the area is sunburned and the skin may
begin peeling. These skin reactions are usually short-lived and diminish over a few weeks.
Managing Skin Reactions
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“
I was devastated to lose my hair, but I got use
to wearing scarves and ended up having lots
of fun with my wig. I always kept in mind that
my hair would always grow back after I was in
remission and it has.
” - Kim
Protect these areas of skin from sun exposure and always use sunscreen when outside.
The skin should always be protected with sunscreen, even when the radiation therapy is
finished
During the radiation treatment, your doctor may prescribe an alcohol-free, fragrance-free
lotion or cream to apply to the affected area.
I listened to my doctor and kept myself out
of the sun during my radiation treatment.
I also used a lotion to help with the itching
and flaking skin.
- Adeline
“
”
Living with Lymphoma - Managing Treatment Side Effects | Page 99

Fatigue
Fatigue, or tiredness, is a common side effect of chemotherapy and usually goes away after the
treatment is complete. Severe fatigue can be a symptom of anaemia and should be mentioned
to your doctor. Fatigue may be due to the strong chemotherapy medications and their effects on
your body, or due to the cumulative effects of many chemotherapy cycles, even those involving
weaker chemotherapy drugs.
Managing Fatigue
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Ask friends and family for help
Keep a diary to keep track of the times of day when you feel most tired. This can help you
plan activities according to how you are feeling, so you can rest when you need to and use
the time when you’re not tired to go about your daily activities
Exercise when you have the energy (if your doctor says it’s oK to do so). Yoga, stretching
and short walks can increase your energy and improve your overall vitality. Start slowly and
build up your endurance to a comfortable range
Get the rest and sleep you need while receiving chemotherapy. It may be important to take
time off work and adjust your daily schedule to allow for rest and recuperation. Try not to
rest more than necessary as this can sometimes make you feel even more fatigued.
Problems with
Memory/Concentration
Some people with cancer report that they become forgetful or unable to concentrate and
informally refer to this as “chemo brain”. But it is not only people having chemotherapy that
find they have problems with memory and concentration. other factors, such as the lymphoma
itself, a decrease in blood cell counts, fatigue, or even the stress and anxiety that can come with
having cancer can cause difficulty concentrating and forgetfulness.
Problems with memory and concentration may improve once you complete your chemotherapy,
but there is also a possibility that these may be long-term problems.
Page 100 | Living with Lymphoma - Managing Treatment Side Effects
“
During my treatment and recovery I was really
tired. Things that friends my age were doing
were too exhausting for me to even try. But
now I am working full time and getting on
with life.
”
- Lis

Managing Memory/Concentration Problems
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Use a planner for appointments, medication, birthdays etc
Try to have a place for everything e.g. put car keys in the same place
Keep your brain active – crosswords, Sudoku, hobbies
Have a notepad and pen with you at all times to note things that need to be remembered
Look after yourself – get plenty of rest, exercise if you are able (and with the doctor’s oK),
keep your fluids up and have a healthy diet
Consider relaxation techniques to help reduce stress and anxiety.
“
My memory was affected by my treatment.
I make sure that I keep things written in my
diary and I figure things that I dont remember
now aren't that important anyway.
” - John
Neuropathy (nerve damage)
Some chemotherapy drugs may cause damage to the nerves that carry information about
touch, temperature, pain and sensation. The drugs may also damage the nerves involved in
muscle movement. Called “peripheral neuropathy”, it commonly affects the nerves in the
hands and feet, but it may occur in other parts of the body too. Symptoms may include pins and
needles, pain, numbness, increased sensitivity to heat and problems with balance.
Symptoms of peripheral neuropathy usually develop soon after you start treatment. For most
people these will be temporary however some people may experience long-term or permanent
damage.
Managing Neuropathy
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Contact your doctor immediately if you notice any symptoms of peripheral neuropathy e.g.
pins and needles, pain, numbness in the hands/fingers or feet/toes
Regularly check your hands and feet for cuts, burns or scalds you may not have noticed;
treat these immediately to protect against infection
Protect your hands and feet:
• Wear gloves, keep skin moisturised, trim fingernails
• Always wear shoes/slippers indoors and outdoors, keep toenails trimmed and feet well
moisturised
• Avoid situations of extreme heat and cold e.g. cooking, freezers
• Always check the water temperature of a bath or shower before placing your hands/
feet in the water – perhaps use your elbow to check water temperature
•
Be mindful of sunshine and protect against sunburn
Discuss pain relief with your doctor if this is an issue.
Living with Lymphoma - Managing Treatment Side Effects | Page 101

Fertility Issues
Chemotherapy and radiation therapy may pose some risk to fertility.
For men, general health will affect sperm production so a serious illness like lymphoma may
result in a low sperm count. Some treatments may further reduce sperm production.
Women may experience reduced fertility as a result of treatment, with the principle risk to
fertility being your age at the time you start treatment. older women (aged 35 years or over)
are more likely to experience reduced fertility than someone younger at diagnosis. The risk
to fertility will also depend on what drugs you have and at what dose. Women of childbearing
age may find that menstrual periods become irregular or stop during treatment. Following
treatment they may return to normal or remain irregular. Some women – particularly those
who are close to normal menopause age – may experience an early menopause following
treatment.
Before commencing treatment it is very important that you discuss these fertility issues with
your doctor, who will advise you further on this matter.
Rebecca and her baby Mia and partner Mat. Baby Mia was born 6 years after Rebecca was
diagnosed with NHL.
Managing Fertility Issues
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For Men: you may be offered sperm banking – sperm samples can be frozen for many
years. Remember that even with a low sperm count it is still possible to achieve conception
with a female, so contraception may still be required.
For Women: it may be possible for you to store ova (eggs). Discuss this carefully with your
doctor as it takes time to produce the eggs (hormonal stimulation is required) and this
can delay the start of your lymphoma treatment. For women of childbearing potential,
contraception use should continue during treatment. All women of childbearing potential
should discuss with their doctor the possibility of early menopause due to treatment.
Page 102 | Living with Lymphoma - Managing Treatment Side Effects

Decreased Blood Cell Production
Blood cells, including red blood cells, white bloods cells and platelets, are continually being
produced in the bone marrow. Because these cells are always dividing, they are also targeted
by chemotherapy and, therefore, the number of all blood cells can be reduced. This is called
myelosuppression.
There are different types of myelosuppression depending on which blood cell is affected:
Anaemia is the term used to describe a decrease in the number of red blood cells - the oxygen
carrying cells in the blood. Anaemia can cause people to feel tired and lethargic and may require
treatment if severe. Sometimes people are prescribed special injections to help stimulate the
growth and production of red blood cells and decrease the side effects of anaemia. occasionally,
blood transfusions are required for more severe anaemia, especially when the bone marrow has
been affected by the lymphoma.
Neutropenia occurs when there is a decrease in the number of neutrophils, a certain type of
white blood cell. Neutrophils are very important for fighting infection. When someone has too
few neutrophils they are at risk for developing serious infections. If the neutropenia is severe, the
chemotherapy may have to be delayed or the dosage reduced, as the risk of infection is serious.
Sometimes people with neutropenia are prescribed antibiotics to help protect against any possible
infections. Regular injections may also be required to stimulate the growth and production of white
blood cells.
Thrombocytopenia is the term used to describe a decrease in the number of platelets, cells that
are vital for blood clotting. If platelet counts are low, a person may experience increased bruising
or excessive bleeding from cuts, nosebleeds and bleeding gums. Treatment may be needed if the
thrombocytopenia is severe, with the usual treatment being a blood transfusion. Avoidance of
blood-thinning medications (e.g., aspirin or anti-inflammatory drugs) may also be recommended.
Managing the Effects of Decreased
Blood Cell Production
The most important thing you can do is be alert for signs of myelosuppression:
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Signs of anaemia include fatigue and lethargy.
Signs of neutropenia include symptoms like fever, sore throat, rash, diarrhoea, or redness,
pain or swelling around a wound.
Signs of thrombocytopenia include easy bruising or prolonged bleeding.
If you notice these symptoms, inform your doctor immediately so appropriate action can be
taken. See also the following information “Avoiding Infection”.
Avoiding Infection
People who have lymphoma are more prone to infection than people with other types of cancer.
This is because the lymphocyte cells that are affected by the disease are part of the immune
system. Receiving treatment for lymphoma – such as chemotherapy – places you at an even
greater risk of developing infections. You and your family and friends need to be aware of this and
be mindful of ways you can all help to minimise the risk of you getting infections.
Living with Lymphoma - Managing Treatment Side Effects | Page 103

Avoiding infection: tips for someone with lymphoma
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•
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•
•
•
•
•
•
•
•
•
•
•
•
Wash your hands often; use moisturising soap and/or moisturise hands afterwards
Take a warm bath or shower every day and gently pat your skin dry
Use antiseptic mouthwashes and, before you start chemotherapy, see your dentist if you
have any dental problems. Tell your doctor is you need or have any dental treatment during
your lymphoma treatment
Use a soft toothbrush that is gentle on your gums
Take extra care to protect your skin from becoming dry or cracked
Use an electric shaver instead of a razor to shave
Use warm water, soap and an antiseptic to clean cuts and scrapes
Avoid squeezing or scratching spots, cuts or grazes
Avoid situations where you may bruise or break your skin
Always wear shoes
Try to prevent cuts or tears of the cuticles of your nails
Try to avoid nicks and cuts when using sharp instruments
Ensure all food is properly handled, washed and thoroughly cooked
Wear protective gloves when gardening or cleaning up after pets
Stay away from crowds and people with colds or infections
Don’t have vaccinations unless they have been approved by your doctor
Tell your doctor immediately if you have a fever or other signs of infection.
Avoiding infection: tips for family and
friends of someone with lymphoma
•
•
•
•
Always wash your hands after touching pets, going to the toilet or after being outside
Wash food carefully and always ensure that it is cooked properly
Do not visit someone with lymphoma if you have the flu, a cold or any other contagious
illness e.g. diarrhoea, conjunctivitis. Wait until you are feeling better and the infection has
gone. Be especially mindful of children with this – they are more likely to be carrying even
minor infections
When visiting someone with lymphoma always wash your hands on arrival at their home.
Foods to avoid when you have a low white
blood cell count
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Unpasteurised milk and milk products
Soft-whip ice cream from machines
Cold fresh soup
Raw meat or fish
Take-away meals (pre-prepared meals from the supermarket are acceptable)
Raw or lightly cooked eggs, fresh mayonnaise, egg nog, soufflés, soft meringue
Soft ripened cheeses, for example brie, camembert or blue veined cheeses
Live yoghurt
Pate and processed meats
Shellfish
Peppercorns
Raw vegetables (salads)
Peel fruit before eating
Avoid packaged food which is beyond its sell by/eat by date
Avoid keeping food in the fridge for longer than 24 hours.
Page 104 | Living with Lymphoma - Managing Treatment Side Effects

Managing Pain
“
It was so important for me to stay infection
free during my treatment. We had hand
sanitiser at the front door for anyone who was
visiting to use. When I was Neutropenic,
visitors were kept to a minimum.
” - Tanya
Pain is one of the most common and feared symptoms of cancer. It may occur due to the cancer
or as a side effect of cancer treatment. If not adequately managed, pain may have a tremendous
effect on quality of life.
Modern medications can help control pain so if you are experiencing pain it is important that you
tell your doctor. In addition to medicines to reduce pain there are other methods of pain control
and relief, including meditation and even exercise. But you must discuss any form of pain relief
with your doctor beforehand to make sure it is the right approach for you to take at that point in
time.
Don’t wait for pain to become unbearable – it is much better to take measures to control pain
early. Your doctor will help you find the right medication or combination of medications and dose to
control your pain.
- Always tell your doctor if you have pain or if
your existing pain increases.
“
To take my mind off the pain I would
always picture myself somewhere else
and this would help me cope with what
was happening to my body.
”
- Michael
Living with Lymphoma - Managing Treatment Side Effects | Page 105

RoSALIND'S SToRY
Having led a very active and healthy life, what with playing tennis into my sixties, I
really felt I was on top of the world. I had a wonderful husband, 3 healthy children
and at that time 5 beautiful grand children.
I was walking every day and enjoying it immensely, however, in early 2002 I started
to struggle. I became lethargic and really had to push myself to achieve activities
that I would normally breeze threw.
Eventually I got so tired that I decided to get myself to my GP for a check up.
Before I knew it, I was getting blood tests, the results of which would change my
life forever. There was something wrong with my blood levels and my GP sent me
straight to a specialist in Brisbane.
My life had suddenly taken a sharp turn in an unexpected direction. I had a long
week of further tests and after what seemed like eternity, I received the news from
my specialist that I had what he suspected. I had an indolent form of Follicular
Lymphoma.
How could this be? A week ago I had been playing tennis and enjoying my morning
walks. Now I had cancer? My husband stood by my side and told me that we were
going to do whatever was needed to beat my Lymphoma. His strength propped me
up throughout what would turn out to be some of the hardest days of my life.
Thanks to my specialist Doctor I received treatment with a relatively new drug. I
received monoclonal antibody therapy, being MabThera, prior to it being listed with
the Public Benefit Scheme. I responded well to this treatment and was lucky to
hear that I was in remission. However, my journey was not over.
As a precaution, my specialist suggested we harvest some of my stem cells in
the event of a relapse. Although I had the all clear, this was a trying time for me,
with several trips to the hospital and a stay lasting 10 days. Unfortunately, the
stem cell harvest was unsuccessful but I was able to say that I had beaten my
Lymphoma and put that part of my journey behind me. Six years later, I continue to
be in remission. I remain positive and am back walking every morning (too old for
tennis!) and with my husband of 46 years, we now put our efforts into travel, our
children and our 6 grand children.
- Rosalind
Page 106 | Living with Lymphoma - Managing Treatment Side Effects

CARING FOR
SOMEONE
WITH LYMPHOMA
This resource would not be complete unless we also
acknowledged the role of the carer after a Lymphoma diagnosis.
A carer can be a spouse, son, daughter, mother, father, friend,
colleague or anyone that may be there for the Lymphoma patient
during their Lymphoma journey.
Being a Lymphoma Carer
Carer Statements
Talking with the Health Care Team
08
Living with Lymphoma - Being a Lymphoma Carer | Page 107

SHARON’S STORY
I am sure that there are many Lymphoma carer’s that felt the same as me when a loved one was
diagnosed with Lymphoma. I had no idea what Lymphoma was, I didn’t know if it was good or bad
and certainly didn’t have a clue what this would mean for us moving forward.
However, after the initial shock and a bit of an explanation from my mother (and I am sure she
didn’t know what it meant either), I googled it! This only caused more confusion so I ask ed
questions - from Doctors, Nurses, patients and other carers. This did help and over a period of
time I started to understand more about the type of Lymphoma we were up against and some of the
treatments that could be used. What I didn’t know then, but I know now, is that some Lymphomas
will relapse a number of times, but different types of treatments can be used when this happens. If
only I had know this at the start - think I would’ve handled each relapse a lot better.
Our family didn’t choose Lymphoma, it chose us and we decided to take on the challenge together.
My dad was my mum’s rock, in sickness and in health he was there for her. We had realign the
boundaries of privacy, as mum was no longer to go to the dosctor’s appointments alone. We
wouldn’t let her! This did take a bit of effort to convince her that this was in her best interests, but
it worked. We were able to ensure all options were considered and ultimately mum still made the
final decision.
Treatment times can be tough. You can feel like you are being pulled in 6 different directions,
decisions need to be made and you are scared for your loved one who is having everything
happening to them. What did I do? I prioritised and sometimes I did have to make sacrifices in other
areas. I miss some times with my own family, but I was happy with my choice - for me this was the
right thing to do. Sometimes as a carer you can feel like a bit of a protector, especially during those
low blood count days. We would use this time to go to the mountains, have a picnic and walk along
the beach - just about anything that didn’t involve a crowd.
These were great moments and would never had happened if there hadn’t of been a Lymphoma
diagnosis. Again, if I knew back then what I know now, I wish I hadn’t had worried so much about
tomorrow when we had the moment of today to live and cherish. One statement that I have often
heard carers say is that it is “really important that there are no regrets”. Our mum had options
because we asked questions, we looked for answers, we met and accepted the challenges that
came with a Lymphoma diagnosis, but most importantly we lived with and loved each other every
step of the way. I have no regrets.
- Sharon.
Page 108 | Living with Lymphoma - Being a Lymphoma Carer

CARING FOR SOMEONE
WITH LYMPHOMA
Being There
This resource would not be complete unless we also acknowledged the role of the carer after a
Lymphoma diagnosis. A carer can be a spouse, son, daughter, mother, father, friend, colleague
or anyone that may be there for the Lymphoma patient during their Lymphoma journey.
Every caring situation is different. There is no right or wrong way to be a carer as your role will
depend on the needs of the person you are caring for and what you are able to do. Consider
sharing your caring responsibilities with others so that you take time out for yourself when you
need it as there will always be someone who can help you.
You will probably feel a range of feelings as you care for your loved one. Being sad, afraid,
angry, worried and confused can all be a part of the Lymphoma journey but you will cope and
most importantly you will be there for the good and bad times.
Debbie and Anne sharing a moment together.
It may help to know that other caregivers have felt the same way as you and the following tips
and advice are from Lymphoma carers.
Living with Lymphoma - Being a Lymphoma Carer | Page 109

There may be some challenging times when
you think there may not be a tomorrow. But
tomorrow will come and when it does embrace
the moment of each and every day...
- Tracey
Page 110 | Living with Lymphoma - Being a Lymphoma Carer
I try not to think too much about Ros having
Lymphoma as we are living our lives like it isn't
there and if the Lymphoma comes back we will deal
with it then...
- Ray
Kayleen was well for most of her Lymphoma journey but it
still didnt stop me from worrying about how she was
feeling and coping with the fact that she had cancer. I just
made sure that we lived life as if there was no cancer and
we always had the best time together and with our family
and friends...
- Gordon
As a parent I wanted to be the one who was sick so that
I could take all the pain and treatments away from my
daughter. I took each day one at a time and learnt as
much as I could about Lymphoma. By doing this we felt
that we were in some control of the decisions that we
were making...
- Gaye
Because my boy Sonny was a young man when he was diagnosed
with Lymphoma he still kept a lively, fun loving spirit throughout
his treatment. Sometimes friends become more distant because
the one with Lymphoma is not well enough to be with them and
I think Carers can help to keep them in touch. It was difficult at
times but it really helped for him to be with his friends and family
and enjoy life regardless...
- Gayle

Taking Michael the food that he was used to when
he was really sick at least helped him to eat a little
bit when he felt like he couldn't eat a thing...
NHL poses great challenges for carers, as well as
patients. For us, there was one year of bad news, awful
treatments and total preoccupation with the disease.
But we have now had four great years since then. Long
may they last...
- Graham
- Darlene
When Anne was diagnosed with Lymphoma I felt so helpless as I had
not heard of Lymphoma. Anne has always been there when I have
needed her and her friendship means the world to me. I decided it
was my turn to support Anne through her journey by attending her
appointments with her and being there should she need my help or
support. I am now along with Anne supporting Lymphoma Australia to
help others and raise awareness...
- Debbie
Everything was going along fine for us and then the
Lymphoma came and our family life was turned totally
upside down. Help came from family and friends and I am
glad I didnt say no to any of this...
- Dan
I sometimes worried about if I was doing it right when
Shirley needed me. But our family became Team
Lymphoma and between us we were there for her and
each other and enjoyed many of lifes milestones along
the way...
- Ted
Living with Lymphoma - Being a Lymphoma Carer | Page 111

Talking with the Health Care Team
One of the most important roles that you may have to undertake as a Lymphoma carer will be
going to your loved one’s treatments and doctor’s appointments. A few tips are listed below:
Getting ready for visits with the Doctor
•
•
•
•
•
Make sure all new and or relevant medical information is taken to each appointment. E.g.
latest scans, blood tests
Keep a list of doses and names of medicines that are being taken
Make a list of questions and concerns. List the most important first
If you and the patient have a lot to discuss with your doctor, ask whether you can have a
longer appointment
Talk with your loved one prior to the visit so that you are both prepared if the information
that is given is different to what you may be expecting.
Talking with the Doctor
•
•
•
•
•
•
If you don’t understand what is being said it is ok to ask for another explanation
Don’t be afraid to ask questions about treatment options or clinical trails
If a concern is not being addressed you may need to ask the question in a different way
Take notes if you need to
Talk with the doctor about any medical advice that you find. Sometimes this information
may be false or misleading or may conflict with what the doctor has been telling you
Do not take any additional medication without checking with the doctor.
Helpful Questions if Treatment is needed
•
•
•
•
•
•
•
•
What medical records are needed at the treatment
Is there anything that should be done prior to treatment
How long will the treatment take
Can my loved one go to and from treatment on their own or should someone else be there
What are the side effects of the treatment
After treatment what do we need to watch for
When should we call you or go to the hospital
If you have private health insurance check that you are fully covered for this treatment.
Page 112 | Living with Lymphoma - Being a Lymphoma Carer
Having someone with me at my appointments
made it so much easier to remember things and
discuss options with so I didnt feel as though I was
making these important decisions on my own.
- Beverley

INDEX
OF COMMONLY USED TERMS
A list of commonly used Lymphoma terms and
list of references used to compile this resource.
Survivor Statements
Glossary
Bibliography
09
Living with Lymphoma - Index | Page 113

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Page 114 | Living with Lymphoma - Index
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GLOSSARY
OF COMMONLY USED TERMS
A Absolute neutrophil count (ANC): The number of mature neutrophils in the bloodstream.
Neutrophils are a type of white blood cell whose function is to fight infection in the body. If the ANC
is low, the person may be at a higher risk of infection.
Acute: Sudden onset of disease or symptoms.
Adjuvant therapy: Anti-cancer treatment given after the primary (initial) treatment to increase the
chance of remission.
Advanced disease: Disease which has spread from the original site, often to multiple locations.
Aetiology: The cause(s) of disease. The cause of lymphoma is not known.
Allogeneic transplant: A procedure where a person receives stem cells from the bone marrow or
peripheral blood of a suitably matched donor, such as a sibling.
Aggressive lymphoma: Lymphomas that grow at a fast rate. They are also referred to as
intermediate or high-grade lymphomas.
Alopecia: Loss of hair, either from the head or elsewhere on the body. Alopecia during cancer
treatment most commonly occurs from chemotherapy drugs and is almost always temporary. Hair
will re-grow once chemotherapy treatment is finished.
Anaplastic: A term used to describe cells that divide rapidly and no longer resemble their original
appearance. Anaplastic cells grow without form or structure and are seen in most (but not all)
cancers.
Anaemia: A condition where the number of red blood cells is below the normal limit. The most
common symptoms associated with anaemia include fatigue, weakness and shortness of breath.
Antibody: A protein produced by mature B-cells that binds to foreign substances (called antigens)
and inactivates and/or removes them from the body. These foreign substances can include toxins,
bacteria and cancer cells.
Anti-emetic: A medication that reduces or prevents vomiting.
Antigen: A protein present on the surface of all cells that serve to identify the cell type. Antigens
are also present on the surface of foreign substances and stimulate the body’s immune system
to produce antibodies. Antibodies bind to antigens and facilitate the killing and/or removal of the
foreign substance.
Living with Lymphoma - Index | Page 115

Anti-nauseant: A medication that prevents nausea.
Anti-pyretic: A medication that reduces fever.
Apheresis: The part of a stem-cell transplantation where the stem cells are removed from the
blood.
Autologous transplant: A procedure where a person receives their own bone marrow or
peripheral blood stem cells instead of those from a donor.
Axilla (axillary): Refers to the area under the arm (armpit).
B
B-cell: Also called a B-lymphocyte, B-cells are a type of lymphocyte that produce antibodies to
fight disease in the body. Lymphocytes are a type of white blood cell and are an important part
of the immune system.
B-cell lymphoma: A type of lymphoma where the cancer affects B-cells.
B symptoms: Symptoms that some people may experience with lymphoma. B symptoms
include fever, night sweats and weight loss. They are often associated with more advanced
disease.
Benign tumour: A tumour that is not cancerous and does not spread to other parts of the body.
Benign tumours can grow large enough to impact surrounding tissues.
Beta 2 microglobulin (B2M): A protein found in the bloodstream that, if found in large amounts,
could mean a more aggressive form of lymphoma.
Biologic therapy:Treatments that stimulate a person’s immune system to fight infection or
diseases like cancer. Also called immunotherapy.
Biopsy: Removal of a small piece of tissue for examination under a microscope. A biopsy is
an effective method of determining whether a tumour is malignant (cancerous) or benign. In
lymphoma, the tissue may be taken from the tumour (e.g. lymph node) or the bone marrow.
Blood cell: A general term that describes the three major cell types that circulate in the blood:
red blood cells, white blood cells and platelets. Red blood cells carry oxygen throughout the
body, white blood cells work as the immune system, and platelets are important for blood
clotting. All are made in the bone marrow.
Bone marrow: The spongy tissue inside the large bones of the body that produces red blood
cells, white blood cells and platelets. The bone marrow contains immature forms of these cells,
called stem cells, which can be harvested (collected) for transplant.
Bone marrow aspiration and biopsy: A test routinely performed on people with lymphoma as
part of staging their cancer, to determine whether the cancer has invaded the bone marrow.
Bone marrow transplant: The person receives high-dose chemotherapy and/or radiation to kill
off all the cancer cells, and then receives healthy bone marrow cells that can come from the
person themselves (autologous transplant) or from a compatible donor (allogeneic transplant).
Page 116 | Living with Lymphoma - Index

Bone scan: A procedure where the bones of the body are viewed. The person is injected with a
radioactive substance that is absorbed into the bones allowing them to be viewed during a scan.
The procedure is commonly performed to determine if the cancer has spread to the bones.
C
Cancer: Abnormal, uncontrolled growth of cells. Cancer cells can multiply and form a tumour
that can spread throughout the body.
Carcinogen: A substance that is known to cause cancer.
CAT scan or CT scan: A series of X-rays that provides detailed, three-dimensional images of the
inside of the body.
Catheter (see also venous catheter): A device, usually a flexible tube, which is used to transport
medications into the body (through a vein) or take fluids (e.g., urine) out of the body.
CD5 antigen: A protein on the surface of some B-cells. This protein can be found during the
biopsy procedure and, if present, is used to confirm the diagnosis of certain types of NHL.
CD20 antigen: A protein found on the surface of B-cells. The CD20 antigen is used as a target
for monoclonal antibody therapy with MabThera (rituximab) in certain types of NHL.
CD30 antigen: A protein found on the surface of some T-cells. This protein can be found during
the biopsy procedure and, if present, is used to confirm the diagnosis of a certain type of T-cell
NHL: anaplastic large cell lymphoma, primary cutaneous-type.
Cell: The building block of all living tissues, it is the most basic structural and functional unit of
life.
Central line: An intravenous catheter that is inserted into a large vein, usually in the neck or
near the heart. It is used to administer medication or withdraw blood.
Cerebrospinal fluid: Watery fluid that surrounds the brain and spinal cord. In lymphoma, it may
be examined to determine if the cancer has spread to these areas.
Chemosensitive: A term used to describe a tumour that responds to chemotherapy.
Chemoresistant: A term used to describe a tumour that does not respond to chemotherapy.
Chemotherapy: Treatment with drugs that kill rapidly dividing cells. The type of chemotherapy
given depends on the type of cancer and the health status of the patient.
Chemotherapy cycle: A term used to describe the method of administering chemotherapy (it
may also be called a “treatment round”). Its duration includes the time treatment is given and
the rest period for the patient to recover and this cycle is often repeated for three or more
cycles.
CHOP chemotherapy: A combination chemotherapy treatment that consists of three individual
chemotherapy drugs (cyclophosphamide, doxorubicin and vincristine) and a steroid medication
(prednisone). CHOP is one of the most common chemotherapy regimens used in lymphoma.
Living with Lymphoma - Index | Page 117

Classification (of lymphoma): The determination of the exact type of lymphoma. There are
many different types of lymphoma (e.g. Hodgkin lymphoma, non-Hodgkin lymphoma and its
sub-types such as follicular lymphoma, mantle cell lymphoma, etc.) and it is important to
classify the tumour in order to choose the most appropriate treatment.
Clinical trial: A research study performed on volunteer patients under strictly controlled
conditions to evaluate a new treatment. The ultimate goal is to find the most effective, least
toxic treatment for a specific disease.
Combination chemotherapy: The use of a number of drugs together to combat cancer.
Complete blood count (CBC): A routine blood test used to determine the number of blood
cells (red blood cells, white blood cells and platelets) in the bloodstream. A CBC is commonly
done during a normal check-up with a doctor, and is often done during cancer treatment to
determine if the person can go ahead with their chemotherapy treatment.
Complete remission: Also called complete response, it means that all signs of the cancer have
disappeared following treatment. Partial remission/partial response means that the tumour
has decreased in size but is still present.
Cure: The term used when no signs or symptoms of the disease have been present for a certain
period of time. The longer a person is in remission (absence of signs or symptoms of cancer)
the higher the likelihood of cure.
CVP chemotherapy: A combination chemotherapy treatment that consists of two chemotherapy
drugs (cyclophosphamide and vincristine) and a steroid medication (prednisone). CVP is a
common chemotherapy regimen used in lymphoma.
D
Debulking: Treating cancer to reduce the size of the tumour. Debulking is usually achieved via
surgery or radiation.
Diaphragm: The thin, dome-shaped muscle below the heart and lungs that separates the chest
from the abdomen.
Disease progression: A term used to describe a worsening of the disease despite treatment.
The term is often used interchangeably with treatment failure.
DNA (deoxyribonucleic acid): The building block for all genetic material. It is a molecule inside
cells that carries genetic information and passes it on from one generation to the next.
Dose intensity: The total amount of a chemotherapy drug delivered to a person in a certain
period of time. The ultimate goal is to reach the highest dose possible where the side effects
remain at an acceptable level.
Drug resistance: Occurs when cancer cells do not respond to chemotherapy.
Durable remission: The term used to describe cancer that has been in remission for many
years.
The longer the remission, the greater the chance for cure.
Dysgeusia: An altered sense of taste.
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E
Echocardiogram (ECHO): An imaging technique where an ultrasound machine is used to
visualise the heart. Some chemotherapy medications can affect the heart and as such, some
people receiving this treatment may require an echocardiogram.
Extranodal disease: A term describing lymphoma that has spread outside of the lymph system.
F
Fatigue: Excessive tiredness and lack of energy, with a decreased ability to perform everyday
activities.
Flow cytometry: A laboratory procedure that examines the cancer cells and their DNA. It is
helpful in the diagnosis of cancers where a mediastinal mass (a mass/tumour behind the
sternum [breastbone] in the central area of the upper chest) is present.
Fraction: A single dose of radiation
G
Gallium (radioisotope) scan: An imaging technique to detect cancer. Gallium is a chemical
which is absorbed by some cancer cells. In this procedure, a safe amount of radioactive gallium
is injected into the person, after which the person undergoes an x-ray procedure where the
radioactive gallium makes the tumour(s) visible. Gallium scans are performed in the nuclear
medicine clinic in the hospital.
Generalised disease: Cancer that has spread throughout the body.
Genes: Made up of DNA and found in all cells, genes contain the information to determine an
individual’s unique characteristics. Errors in genes may predispose a person to cancer.
Genetic mutation: A permanent change to the normal sequence of a gene, often caused by
external agents such as chemicals or radiation, or inherited from birth. Genetic mutations may
cause certain cancers.
Grade (clinical grade): NHL can be classified as low, intermediate or high-grade depending on
how fast the cancer is growing. The term indolent is often used to describe low-grade or slowgrowing
NHL, whereas aggressive denotes a higher grade or faster growing NHL.
Graft-versus-host-disease (GVHD): A complication that can occur after a person has received a
bone marrow or peripheral blood stem-cell transplant from a donor (an allogeneic transplant).
The immune cells from the donor (the graft) react to the person’s body cells (the host) and
mount an immune response against them.
Living with Lymphoma - Index | Page 119

H
Harvesting: A procedure in which stem cells are removed from the bone marrow or the blood of
the patient or a donor. The harvested stem cells are transplanted to the patient following highdose
chemotherapy.
Haemaphagocytic syndrome: A serious condition in which there is uncontrolled activation
of certain parts of the immune system. It can occur in certain types of NHL: subcutaneous
panniculitis-like T-cell lymphoma and extranodal T-cell lymphoma of nasal type.
Haematologist: Doctor specialising in diseases of the blood. As lymphoma affects lymphocytes
(a type of white blood cell), haematologists are usually involved in the care of lymphoma
patients.
Hepatosplenomegaly: Abnormal enlargement of both the liver and spleen.
High-grade NHL: An aggressive, fast-growing form of NHL.
Hodgkin lymphoma: One of the two main types of lymphoma, Hodgkin lymphoma is
distinguished from NHL by the presence of Reed-Sternberg cells. It most commonly occurs in
people aged between 15 and 35 years and, if caught early, has a high rate of remission.
Hyperviscosity: Abnormal thickening of the blood.
Hypogeusia: A reduced sense of taste.
HTLV-1 infection: HTLV stands for human T-lymphotropic virus. It is a family of viruses that
infects T-cells and can make people more likely to develop a certain type of NHL: adult T-cell
I
Immune system: The body’s defence system against infection and disease.
Immunosuppression: Suppression of the immune system due to the side effects of medications
or illness.
Immunotherapy: Treatments that stimulate a person’s immune system to fight infection or
disease (also called biologic therapy).
Improvement: The term used when the tumour size has decreased but is still larger than half
of its original size.
Indolent lymphoma: A slow-growing form of NHL. Indolent NHL and low-grade NHL are terms
often used interchangeably.
Induction therapy: Cancer treatment used as the first step towards shrinking the tumour(s).
If necessary, induction therapy is followed by additional therapy to treat the remaining cancer
cells/tumours.
Intermediate-grade NHL: A form of NHL that is growing at a moderate rate. It is often
considered an aggressive form of NHL that usually requires prompt treatment.
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J
Lactate dehydrogenase (LDH): An enzyme found in the blood that indicates damage to cells. If
elevated, it may indicate a more aggressive form of lymphoma.
Lacteals: Small lymphatic vessels found in the digestive tract. They collect digested fat from the
intestines and transport it to the blood.
Leukaemia: A cancer of white blood cells. In leukaemia, the cancerous cells are in the blood,
whereas in lymphoma the cancerous cells are primarily found outside the bloodstream (in the
lymph nodes).
Leukopenia: A low level of white blood cells. Since white blood cells are the main cells of the
immune system, low levels leave a person at increased risk of infection.
Localised disease: A cancer that is contained in a certain area of the body and has not spread
throughout the body.
Local therapy: Treatment that only affects a small area of the body.
Low-grade NHL: Also referred to as indolent NHL, low-grade indicates a slow-growing
lymphoma.
Lymph (lymphatic fluid): The watery fluid contained in lymphatic vessels. Lymph circulates
lymphocytes throughout the lymphatic system.
Lymph nodes: Small, bean-shaped organs that contain lymphocytes. Lymph nodes filter the
lymphatic fluid and remove any foreign or faulty cells (e.g. bacteria, cancer cells). There are
over 100 lymph nodes throughout the body located in clusters in the lymphatic system. The
major lymph node clusters are found in the neck, under the arms, and in the chest, abdomen
and groin.
Lymph node biopsy: Usually the first step in the diagnosis of lymphoma. Either a section or the
entire lymph node is removed (by a surgeon) for examination under a microscope. A lymph node
biopsy is an effective method of determining whether a lymph node is malignant (cancerous) or
benign.
Lymphadenopathy: Swelling or enlargement of the lymph nodes due to infection or cancer.
Lymphatic system: The network of lymphatic vessels, lymph nodes and other organs that
transport lymphocytes throughout the body to fight infection and disease.
Lymphatics: Lymphatic vessels and channels that carry lymphatic fluid and lymphocytes
throughout the body.
Lymphoblast: An immature lymphocyte (B-cell or T-cell).
Lymphocytes: A type of white blood cell found in the lymphatic system and the bloodstream.
Lymphocytes fight infection and disease and are an important part of the immune system.
Lymphoma: A cancer of the lymphatic system. There are two major types of lymphoma:
Hodgkin lymphoma and non-Hodgkin lymphoma (NHL).
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M
Maintenance therapy: Extended treatment, usually given after the original treatment has
brought the cancer under control. It is done to prevent the disease from relapsing or to keep
the cancer in remission.
Malignant: A malignant tumour is a cancerous tumour. Malignant tumours have progressive
and uncontrolled growth and they can invade surrounding tissue and spread to distant areas of
the body. Benign tumours are not invasive and do not spread.
MALT: Mucosa-associated lymphatic tissue. Extranodal marginal zone B-cell lymphoma of
MALT-type is a certain type of NHL that can affect the lymphatic tissues of the gastrointestinal
tract, eye, thyroid, salivary glands, bladder, kidney, lungs, neurological system or skin. Mucosaassociated
tissue means tissue that is lined with a moist, mucous-producing layer of cells.
Mediastinum: The central area of the upper chest, located behind the breastbone.
Medical oncologist: A doctor who is specially trained to diagnose and treat cancer and who
specialises in the use of chemotherapy, biologic therapy and hormone therapy.
Metastasis: The spread of cancer within the body from the original tumour site to other sites or
organs.
Monoclonal antibody therapy: A type of biologic therapy (or immunotherapy) used for cancer
treatment. A synthetic antibody is created to target a specific antigen (a protein on the surface
of cells). For the treatment of some forms of NHL, monoclonal antibodies target B-cells
(the cancerous cell in many NHLs ) and facilitate their removal from the body. For example,
MabThera® (rituximab) is a monoclonal antibody targeting the CD20 antigen on B-cells.
MRI (magnetic resonance imaging): A technique used to obtain three-dimensional images of
the body. While similar to a CT scan, an MRI uses magnets instead of X-rays.
Mucositis: Inflammation of the lining of the digestive tract, most commonly of the mouth,
causing painful sores.
Myeloablative chemotherapy: High-dose chemotherapy that destroys the blood cells growing
in the bone marrow. This is performed prior to a bone marrow or peripheral blood stem-cell
transplant.
Myelosuppression: A reduction in bone marrow activity resulting in decreased numbers of red
blood cells, white blood cells and platelets being produced.
N
Nausea: A sensation characterised by an urge or need to vomit.
Neutropenia: A reduction in the number of neutrophils, the white blood cells that fight bacterial
infection. This may place a person at a higher risk of infection.
Neutrophils: The most common type of white blood cell in the body.
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Non-bulky tumour: A tumour that is small in size.
Non-Hodgkin lymphoma (NHL): A group of related cancers that affect the lymphatic system.
There are many different kinds of NHL and although they have similarities, they differ in many
ways including how they develop and how they are treated.
Night sweats: Extreme sweating during sleep at night. Night sweats are considered a B
symptom in lymphoma, which may be associated with more aggressive disease.
Null: In a certain type of NHL called anaplastic large cell lymphoma, the cancerous cell can be
either a T-cell or a null cell. The null cell is a cell of unknown type.
O
Oedema: Swelling caused by excessive amounts of body fluid.
Oncologist: A doctor who specialises in the treatment of cancer. There are different types of
oncologists who specialise in certain treatments including medical oncologists (specialising in
medical treatment of cancer e.g. chemotherapy), radiation oncologists (specialising in radiation
therapy) and surgical oncologists (specialising in cancer surgery).
Oncology: The branch of medicine that focuses on the diagnosis and treatment of cancer.
P
Palliative: Treatment that is designed to relieve symptoms rather than cure disease.
Partial remission: Also called partial response. The term used when a tumour has decreased in
size by half or more, but has not been completely eliminated. The cancer is still detectable and
more treatment may be necessary.
Pathologist: A doctor who specialises in identifying diseases by examining and studying cells
under a microscope.
Peripheral blood: Blood circulating in the blood vessels and heart as opposed to the bone
marrow.
Peripheral blood stem-cell transplant (PBSCT): A procedure similar to a bone marrow
transplant. Healthy stem cells are harvested from the bloodstream of a donor (allogeneic
transplant) or from the patient themselves (autologous transplant). The patient then receives
high-dose chemotherapy and/or radiation to obliterate the cancerous cells, after which time
the harvested stem cells are re-infused into the patient’s body to repopulate the body with new
blood cells.
Performance status: A term describing how well a person is able to perform daily tasks and
activities.
Peripheral neuropathy: Altered nerve sensations in the hands and feet, including numbness,
Living with Lymphoma - Index | Page 123

PET scan (positron emission tomography): A way to visualise cancer in the body. Radioactive
glucose (a sugar molecule used as the energy source for cells) is injected into the person and is
taken up preferentially by cells with a high metabolic activity, such as cancer cells. A scanner is
then used to visualise the areas of the body where the radioactive glucose is concentrated.
Pleural effusion: An accumulation of fluid inside the chest cavity around the lungs.
Planning Visit: A session with technicians, nurses and oncologists to simulate radiation
treatment.
Plasma cell: A mature B-cell. The main function of plasma cells is antibody production. Thus,
they play an important role in the defense against infection and disease.
Primary therapy: The first treatment given after a person is diagnosed with cancer.
Prognosis: The prediction of how a person/cancer will progress after diagnosis i.e. the outcome
of the cancer and the likelihood of the person’s recovery.
Psoralen: A drug that is part of a therapy called PUVA, used for a type of NHL called cutaneous
T-cell lymphoma. Also called photochemotherapy, PUVA consists of psoralen plus ultraviolet A
(UVA) light. Psoralen makes the skin more sensitive to the healing effects of the UVA light.
R
Radiation field: The area of the body that receives radiation therapy.
Radiation oncologist: A type of oncologist (cancer specialist) specialising in treating cancer with
radiation therapy.
Radiation therapy: A type of therapy where high-dose radiation beams (X-rays) are carefully
focused on a tumour site. Exposure to the X-ray beams kills the cancer cells.
Radioimmunotherapy: A highly specific therapy where a radioactive isotope (a molecule
that emits radiation) is attached to a monoclonal antibody. Once injected into the body the
radioactive monoclonal antibody attaches to tumour cells and kills them.
Reed-Sternberg cell: A type of cell found in Hodgkin lymphoma but not in non-Hodgkin
lymphoma (NHL). It confirms the diagnosis of Hodgkin lymphoma.
Refractory disease: A cancer that does not respond to treatment.
Randomised controlled trial: A clinical trial which tests an experimental drug treatment by
comparing it to another (control) treatment.
Regimen: The administration of a specific combination and dose of cancer medications,
following an arranged schedule planned by the doctor.
Relapse: The return of cancer after a period of improvement. Lymphoma may recur in the same
area as the original tumour or it may relapse in another body area.
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Remission: A person is said to be in remission if the tumour has diminished in size by half or
more (partial remission) or is undetectable (complete remission). For some types of lymphoma,
for example an aggressive lymphoma, a remission period of five or more years may be
considered a cured. However, remission does not always imply that the cancer has been cured
- indolent lymphomas are not commonly considered cured because these cancers can relapse
even after a long period of remission.
S
Salvage therapy: Treatment that is used when the cancer has not responded to standard
treatments or after the cancer has relapsed.
Single-agent chemotherapy: Chemotherapy treatment that uses only one chemotherapy drug.
Spleen: An organ that is an important part of the lymphatic system. The spleen is located in the
top left-hand corner of the abdomen, below the ribcage. The spleen is involved in lymphocyte
production and storage, and also works to store and filter the blood and remove ageing blood
cells from the circulation.
Splenectomy: Surgery to remove the spleen.
Splenomegaly: Abnormal enlargement of the spleen.
Stable disease: A term used when the cancer does not get better or worse following treatment.
Stage: Describes the extent to which a cancer has spread within the body. There are four
stages of lymphoma: stages 1 and 2 are limited (involving a limited area) and stages 3 and 4 are
advanced (more widespread).
Standard therapy: Treatment that has been proven effective and is widely used as primary
therapy for cancer.
Stem cell: A precursor (or immature) cell produced in the bone marrow that gives rise to all
different kinds of blood cells (red blood cells, white blood cells and platelets). Stem cells are
often harvested (collected) for transplantation.
Stem-cell transplant: A procedure that replaces diseased stem cells with healthy stem cells.
The patient receives high-dose chemotherapy and/or radiation to kill off all the cancer cells,
and then receives healthy stem cells that may come from the patient themselves (autologous
transplant) or from a compatible donor (allogeneic transplant). Stem cells can be harvested
from either the peripheral (circulating) blood, called a peripheral blood stem-cell transplant
(PBSCT), or from the bone marrow, called a bone marrow transplant.
Synergism: A term used in cancer treatment when two or more drugs given in combination
provide a more beneficial effect than either drug alone.
Systemic: Affecting the entire body.
Systemic symptoms: Symptoms that affect the whole body rather than just one area or organ.
Examples of systemic symptoms include fever, night sweats and weight loss.
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T
Tattoo: In radiation therapy, the term used for the ink markings made on the body to clearly
outline the radiation field. This ensures that the appropriate area is targeted for radiation and
that the same area is treated each time.
T-cell (T-lymphocyte): A type of lymphocyte that recognise and destroy abnormal body cells
(e.g., virus-infected cells and cancer cells) and play an important role in fighting infection. The
“T” stands for thymus, the gland where T-cells mature.
Thrombocytopenia: A lower than normal level of platelets in the blood. Platelets are important
in blood clotting, such that a shortage may result in increased bleeding or bruising.
Thymus gland: A gland that is part of the lymphatic system where T-cells complete their
development. The thymus is located behind the sternum (breastbone) in the chest.
Toxicities: The unwanted side effects of medications. Common toxicities of cancer treatments
include hair loss, nausea and vomiting.
Transformed NHL: The term used when an indolent NHL changes, or transforms, into a more
aggressive form of NHL.
Transplant: The transfer of healthy tissue to replace damaged tissue. The healthy tissue can
come from the patient themselves (autologous transplant) or from a matched donor (allogeneic
transplant).
Treatment failure: A worsening of the cancer despite treatment. The term is often used
interchangeably with the term disease progression.
Tumour: An abnormal mass of dividing cells that serves no useful bodily function. Tumours can
be either benign (non-cancerous) or malignant (cancerous).
Tumour burden: The amount of cancer cells present in a patient’s body.
V
Vaccine: A substance used to stimulate the body’s immune system to respond to a specific
invader. Vaccines can be used in cancer to stimulate an immune response against cancer cells.
Lymphoma vaccines are made using a sample of the tumour obtained from the person’s lymph
nodes.
Venous catheter: A device, usually a flexible tube, which is used to transport medications into
the body (through a vein) or take fluids (e.g. urine) out of the body.
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W
Watchful Waiting: Also called the Watch and Wait approach, it is an approach to cancer where
no immediate treatment is given following diagnosis. The person is closely monitored to ensure
the cancer is not progressing. This strategy is often appropriate for people with indolent (slowgrowing)
NHL.
X
Xerostomia: A reduction in the production of saliva resulting in a dry mouth. It can be a side
effect of cancer treatment.
X-ray: Radiation beams that are used in two ways: in low doses to provide images of the inside
of the body for diagnostic purposes and in high doses to treat cancer (radiation therapy).
Living with Lymphoma - Index | Page 127

GRAHAM’S
STORY
In late April 2011 I was diagnosed with Burkitt’s
lymphoma. A shock to say the least. At 28 cancer was far
removed from my consciousness, never thought about it,
never wanted to know anything about it, then bam! The
worst train ride of my life followed the news that I would
have to be treated with chemotherapy for the next 6 to
8 months. I just sat there in disbelief watching people
mundanely preparing for home after a day at work. All
the while thinking upon how so much time in oblivion
would affect my goals, dreams, and aspirations. At the
time I thought it would affect everything a hell of a lot, but you find things to do. I am a musician, and being in
hospital has actually improved my playing quite a lot (there is really not that much else to do), and I am reading
all the classics that I will need to get through for my literary degree (which I deferred till next year).
My symptoms started late in 2010, about 6 months before my diagnosis, and consisted of daily stomach pain
and general fatigue. To tell you the truth I honestly thought I was just living a bit hard, drinking and smoking
too much. I actually went to my GP because I had some sort of chest infection. While I was there though I
thought I would knock everything on the head in one swoop, so I got myself an STD check and told him about
the stomach pain. This is when the testing began, ask any cancer patient about the testing they went through,
it requires patience.
My first test was an ultrasound of my belly, a funny experience getting lubed up and prodded like a pregnant
lady. That was inconclusive, so I had my first CT scan with radiation dye, although injected; it feels like you
have just munched on a AA battery that warms up your stomach all the way down to your testicles. From the
results of this test I heard the first talk of cancer. I was referred onto a haematologist where I am currently
sitting in a single room writing this. He organized for me to get a biopsy of an enlarged lymph node on my neck
and a PET scan. The biopsy wasn’t too bad, I don’t remember any of it and have gained a wicked neck scar.
Getting the PET scan showed that the lymph nodes were cancerous and helped with the diagnosis. Thankfully
mum was able to take the time off and be with me through a lot of the scans and tests. She has been a
complete rock and extremely supportive.
I started my first bout of chemotherapy at the end of April and have just started my first B cycle. I found the A
cycle difficult. I was on a lot of pain killers at the beginning, and I honestly can’t remember the first 4 or 5 days
I was in hospital that well at all. The pain killers and chemotherapy made me very ill for a few days, which has
been the worst of my side effects thus far.
I lost my hair the first weekend at home after my A cycle. I cut my hair short (down to a number 4), but not
short enough. I teased it out as much as possible but it didn’t all come out, so I ended up looking like a sick
camp dog. That’s when the razor made an appearance, it’s far cleaner, and apparently I don’t look to bad as a
thug with a neck scar, although my friends and family are just a tad biased.
Another aspect of the chemotherapy is loss of fertility. After my A cycle I went to see a fertility doctor about
getting some sperm frozen. He laid down some harsh truths about what could happen due to the drugs that
will be entering my body for such a long period of time. Basically he told me that my sperm count will never
be what it was and that I needed to get a sample in for freezing before I started the B cycle, as after that
there would be little point, as the samples would just get progressively worse. I think one of the strangest
experiences of my life was timing “it” so I could make a train, to get into the fertility clinic, with sample, and
all the while being paranoid that the specimen jar wasn’t screwed on properly and was leaking all over my
jacket. That evening I received a phone call from the clinic telling me that my sample was not usable due
to dehydration. I ended up having to repeat the same process a couple more times in the last days I had off
before heading back into hospital.
I am certainly in the right place with the right specialized staff (who are all extremely nice!!! I still have six
months of treatment in here) to conquer my condition. My life has changed considerably, being bound to a
hospital room is sometimes debilitating, but your wellbeing becomes priority number one. Having a positive
attitude, learning new things, and enjoying the company of family and friends fills my days now, well that and
the odd vomit.
- Graham
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