Fall 2007 - International Waldenstrom's Macroglobulinemia ...
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iwmf torch<br />
<strong>Fall</strong> <strong>2007</strong><br />
INTERNATIONAL WALDENSTROM’S MACROGLOBULINEMIA FOUNDATION<br />
RESEARCH AND CLINICAL<br />
HIGHLIGHTS OF<br />
THE 4th INTERNATIONAL<br />
WORKSHOP ON WM<br />
by Guy Sherwood, M.D.<br />
The 4th <strong>International</strong> Workshop on WM was held in June<br />
on the beautiful island of Kos, Greece, the birthplace of<br />
Hippocrates, “the father of medicine.” Despite a nearly<br />
tropical climate outside and malfunctioning air-conditioning<br />
indoors, a number of stalwart lymphoma specialists from<br />
all over the world endured the challenging atmospheric<br />
conditions to discuss and debate issues pertaining to<br />
WM research and the clinical implications of various<br />
treatment protocols.<br />
In a series of two articles for the Torch, I will summarize the<br />
numerous oral and poster presentations. The present article<br />
will review the proposed consensus recommendations<br />
for the treatment of WM and some of the oral and poster<br />
sessions. In the next issue I will complete our review of the<br />
research and clinical highlights of the Kos conference on<br />
WM, which was co-sponsored by the IWMF.<br />
Of the 25 oral presentations, 7 dealt with the genetics,<br />
pathophysiology, and staging system of WM, 6 dealt with the<br />
frontline treatment of WM, and 11 dealt with the treatment<br />
of advanced disease, including novel treatment approaches.<br />
Thirty WM research posters were also presented.<br />
Of particular importance was the last event of the conference,<br />
a special session devoted to a review of the consensus on<br />
WM treatment reached at the 3rd <strong>International</strong> Workshop<br />
(Paris, 2004).<br />
PROPOSED TREATMENT RECOMMENDATIONS<br />
At the most recent meeting of the American Society of<br />
Hematology last fall in Orlando, the IWMF Vice-President<br />
for Research, Dr. Tom Myers, and I met with many<br />
members of the IWMF Scientific Advisory Committee<br />
including Drs. Robert Kyle, Morie Gertz, Steven Treon,<br />
Research Clinical Highlights, cont on page 6<br />
MORE FUNDS, MORE RESEARCH,<br />
MORE HOPE FOR A CURE<br />
by Tom Myers<br />
Hope for a cure, the aspiration common to all members of<br />
the IWMF, is the driving force behind the IWMF Research<br />
Fund. In the following overview, the Vice President for<br />
Research describes new and ongoing research projects<br />
supported by the IWMF Research Fund in order to make<br />
this hope become reality.<br />
Fonseca Lab of Mayo Receives $74,274 Grant From<br />
IWMF - Dr. Esteban Braggio of the Mayo Laboratories<br />
in Scottsdale, Arizona, has just been awarded a one-year<br />
grant by the IWMF Board of Trustees to continue the<br />
genetic studies previously begun by Dr. Rafael Fonseca<br />
and his associates. Dr. Braggio’s study, “Genomic-Wide<br />
Characterization of DNA Copy Number Changes,” will<br />
use the latest scientific tools for identifying disease-related<br />
genes. The objective of his research is to facilitate the<br />
development of improved diagnostics, outcome predictions,<br />
and personalized approaches to treatment of the disease.<br />
More Funds, More Research, cont on page 9<br />
HOLD THAT DATE!<br />
We hope you will join us at our 2008 Educational Forum,<br />
which will be held May 16-18 in Los Angeles. Further<br />
details and registration information will be provided in the<br />
next issue of the Torch and at our website, www.iwmf.com.<br />
Inside this issue<br />
President's Corner.............................................2<br />
What Is Flow Cytometry?..............................3<br />
Medical News Roundup....................................4<br />
Administrative Matters.....................................5<br />
Treasurer’s Report............................................ 8<br />
Help Leave A Lasting Legacy........................ 10<br />
Planned Gift/Heritage Society Inquiry...... 10<br />
From Iwmf-Talk................................................11<br />
Support Group News ......................................14
PAGE 2<br />
OFFICERS & TRUSTEES<br />
FOUNDER<br />
Arnold Smokler<br />
PRESIDENT<br />
Judith May<br />
VICE PRESIDENTS<br />
James Bunton<br />
Tom Myers, Jr<br />
Guy Sherwood, M.D.<br />
SECRETARY<br />
James Berg<br />
BOARD OF TRUSTEES<br />
Arlene Hinchcliffe<br />
Elinor Howenstine<br />
Robert A. Kyle, M.D.<br />
Don Lindemann<br />
Dave Lively<br />
Roy Parker<br />
Karen Pindzola<br />
Richard Weiland<br />
Ronald Yee<br />
BUSINESS OFFICE<br />
Sara McKinnie, Office Manager<br />
Don Lindemann, Torch Editor<br />
IWMF SCIENTIFIC<br />
ADVISORY COMMITTEE<br />
David Agus, M.D.<br />
Cedars-Sinai Medical Center<br />
Bart Barlogie, M.D.<br />
University of Arkansas<br />
Morton Coleman, M.D.<br />
New York Presbyterian Hospital<br />
Meletios A. Dimopoulos, M.D.<br />
School of Medicine,<br />
University of Athens<br />
Christos Emmanouilides, M.D.<br />
Interbalkan European Medical Center<br />
Stanley Frankel, M.D.<br />
Merck & Co., Inc.<br />
Hoffmann-La Roche<br />
Morie Gertz, M.D.<br />
Mayo Clinic<br />
Robert A. Kyle, M.D.<br />
Mayo Clinic<br />
Veronique Leblond, M.D.<br />
Hopital Petie Salpetriere<br />
James Mason, M.D.<br />
Scripps Clinic<br />
Gwen Nichols, M.D.<br />
Hoffmann-La Roche<br />
Alan Saven, M.D.<br />
Scripps Clinic<br />
Steven Treon, M.D.<br />
Dana Farber Cancer Institute<br />
Mary Varterasian, M.D.<br />
i3Drug Safety<br />
Donna Weber, M.D.<br />
M.D. Anderson Cancer Center<br />
The conference attracted approximately 1,700 participants, with the first four<br />
days devoted to multiple myeloma (Monday through Thursday) and one evening<br />
and two days devoted to Waldenstrom’s macroglobulinemia. Since multiple<br />
myeloma is much more common than WM and has the interest of many more<br />
doctors and researchers, more sessions at the Kos Workshop were devoted to it<br />
than to WM. On Thursday evening a symposium on “Advances in the Biology<br />
and Therapy of Waldenstrom’s <strong>Macroglobulinemia</strong>” was attended by about 240<br />
doctors and researchers. The sessions on Friday and Saturday, however, drew<br />
fewer participants. This edition of the Torch includes Part 1 of a scientific report<br />
of the Kos workshop provided by Dr. Guy Sherwood.<br />
President's Corner, cont on page 3<br />
President<br />
Judith May<br />
Editor<br />
Don Lindemann<br />
Guest Editor (FaLL '07)<br />
Alice Riginos<br />
Medical News Editor<br />
Sue Herms<br />
PRESIDENT’S CORNER<br />
by Judith May<br />
The Fourth <strong>International</strong> Workshop on Waldenstrom’s<br />
<strong>Macroglobulinemia</strong> was held in late June on Kos Island,<br />
Greece. This workshop is held every other year in a<br />
different location to bring together the international<br />
researchers who have conducted research and clinical<br />
trials on our disease. The workshop provides a forum for<br />
sharing and discussion of new information, for forging<br />
a consensus on revisions to the current understanding<br />
of how WM is diagnosed and treated, and for reviewing<br />
responses to treatment. The IWMF Board members<br />
attending the conference were Tom Myers, VP for Research; Guy Sherwood, M.D.,<br />
VP for Member Services; Robert Kyle, M.D., Director of IWMF’s Scientific<br />
Advisory Committee, and Judith May, President.<br />
This was the first time that the <strong>International</strong> Workshop on WM and a similar<br />
workshop on Multiple Myeloma were combined. The idea to combine the two<br />
workshops stemmed from the high cost and necessarily time-consuming fund<br />
raising efforts with pharmaceutical companies in order to find support for two<br />
separate workshops. The Board is now discussing whether we will continue to join<br />
the myeloma researchers or whether a separate workshop best serves the IWMF.<br />
The IWMF Torch is a publication of:<br />
<strong>International</strong> Waldenstrom’s <strong>Macroglobulinemia</strong> Foundation<br />
3932D Swift Road • Sarasota, FL 34231-6541<br />
Telephone 941-927-4963 • Fax 941-927-4467<br />
E-mail: info@iwmf.com • Website: www.iwmf.com<br />
Senior Writers<br />
Jim Berg<br />
Guy Sherwood<br />
Support Group News<br />
Penni Wisner<br />
Talklist Correspondent<br />
Mitch Orfuss<br />
Layout<br />
Sara McKinnie<br />
IWMF is a 501(c)(3) tax exempt non-profit organization Fed ID #54-1784426. <strong>Waldenstrom's</strong> <strong>Macroglobulinemia</strong><br />
is coded 273.3 in the <strong>International</strong> Classification of Diseases (ICD) of the World Health Organization.
President's Corner, cont from page 2<br />
In the past the IWMF has always participated in the bi-annual<br />
<strong>International</strong> Multiple Myeloma Workshop by having a booth<br />
at the conference to answer questions and distribute our<br />
literature. This has proven to be a successful way to interest<br />
new researchers in applying for grants, and it is also a good<br />
way to add doctors and researchers to our mailing list and to<br />
provide them with information on our disease. Often doctors<br />
are willing to have IWMF publications sent to their offices<br />
and clinics for patient use. At previous multiple myeloma<br />
workshops we met doctors and scientists from Greece, China,<br />
India, and France who were interested and willing to work<br />
with us to develop new support groups in these countries.<br />
The booth provided a great opportunity to meet many medical<br />
professionals who often told us how impressed they were with<br />
our booklets and leaflets, many of which have been translated<br />
into other languages. (Currently publications are available in<br />
Spanish, French and German, and we are looking into further<br />
translations into Greek and Chinese)<br />
* * *<br />
A separate conference is being planned with our National<br />
Cancer Institute contact, Dr. Richard Little. This would be a<br />
one- or two-day think tank meeting of researchers to sort out<br />
the future direction for WM research and to specify where the<br />
IWMF Research Funds could have the most impact. Planning<br />
for this conference is yet in the developmental stage, and more<br />
will be announced when we have the details confirmed.<br />
* * *<br />
For all those with peripheral neuropathy, there will be a<br />
free telephone education workshop for people living with<br />
cancer, their families, friends, and health care professionals.<br />
CancerCare is the sponsor of this workshop, which will be held<br />
on Tuesday, October 30, from 1:30 – 2:30 p.m. Eastern Time.<br />
You must register in advance and can do so by calling 1-800-<br />
813-HOPE [4673], or register online at www.cancercare.org.<br />
* * *<br />
The National Cancer Institute reports two newsworthy<br />
items from the Centers for Medicare and Medicaid Services<br />
concerning premiums for Medicare Part D and a tip sheet for<br />
Medicare drug coverage.<br />
Due in large part to strong competitive bidding by health<br />
and prescription drug plans and beneficiaries’ choices, the<br />
Centers for Medicare & Medicaid Services (CMS) anticipates<br />
that the actual average premium paid by beneficiaries for<br />
standard Part D coverage in 2008 will be roughly $25. This<br />
is nearly 40 percent lower than originally projected when the<br />
benefit was established in 2003 and also lower than projected<br />
earlier this year.<br />
A new partner tip sheet, Information Partners can Use:<br />
Medicare Drug Coverage under Medicare Part A, Part B<br />
and Part D, has been developed to provide an overview on<br />
the drugs covered within each of the Medicare program<br />
components. This tip sheet helps clarify drug coverage for<br />
providers and partners assisting beneficiaries with chronic<br />
diseases and drug coverage enrollment.<br />
For more information on the above items, go to<br />
www.cms.hhs.gov.<br />
* * *<br />
The IWMF has a new Vice President for Administration.<br />
IWMF Trustee Roy Parker will be taking on the job, relieving<br />
Jim Bunton, our current V.P. for Administration and also<br />
IWMF Treasurer, of this responsibility to focus solely on his<br />
duties as Treasurer. The Vice President for Administration<br />
has an internal role as overseer of the functions and staff at<br />
our headquarters in Sarasota, Florida. We are fortunate to<br />
have Roy in this position, and certainly his background in<br />
business will be helpful. Roy will also continue as Chair of<br />
the <strong>International</strong> Committee.<br />
In closing, I would like to remind you of our ever-constant need<br />
for your support through IWMF membership dues assuring<br />
continued member services and through contributions to<br />
the IWMF Research Fund to underwrite research studies on<br />
our disease.<br />
Stay Well,<br />
Judith<br />
WHAT IS FLOW CYTOMETRY?<br />
by Sue Herms<br />
One of the most frequent uses of flow cytometry in medical<br />
diagnosis is to distinguish among the various types of<br />
leukemias and lymphomas. Flow cytometry may be<br />
particularly helpful in cases where analysis of cancer cells<br />
under the microscope is not adequate to determine the<br />
specific type of tumor present.<br />
The modern flow cytometer consists of a light source,<br />
collection optics, electronics, and a computer to translate<br />
signals to data. In most modern flow cytometers, the light<br />
source of choice is a laser that emits light at a specified<br />
wavelength. Scattered and emitted light is collected by two<br />
detector lenses (one set in front of the light source and one<br />
set at right angles).<br />
In the diagnosis of leukemias and lymphomas, usually a<br />
portion of the bone marrow or other tissue, such as a lymph<br />
node, is broken up into single cells and placed in a liquid—<br />
the cells in the liquid then flow through a chamber, one at a<br />
time very quickly, up to several thousand cells per second.<br />
At this point, the laser beam hits the cells as they pass. The<br />
way the laser beam light bounces (scatters) off each cell is<br />
What is, cont on page 20<br />
PAGE 3
PAGE 4<br />
MEDICAL NEWS ROUNDUP<br />
by Sue Herms<br />
Ruling on Erythropoiesis-Stimulating Treatment by<br />
the Centers for Medicare & Medicaid Services – The<br />
Centers for Medicare & Medicaid Services determined<br />
that erythropoiesis-stimulating treatment (Procrit, Aranesp,<br />
Epogen) is not reasonable and necessary for anemia of<br />
cancer, hemolysis, bleeding, bone marrow fibrosis, or various<br />
deficiencies related to iron, B-12, or folate. The treatment<br />
is considered reasonable and necessary for cancer patients<br />
if the anemia is secondary to chemotherapy treatment and<br />
the hemoglobin level is
Medical News, cont from page 4<br />
in infection-related deaths and a higher rate of opportunistic<br />
infections in those patients who are also HIV positive.<br />
More Results on Zevalin and Bexxar – The Mayo Clinic of<br />
Rochester, Minn., reviewed the results of four clinical trials<br />
involving the use of Zevalin at 30 U.S. medical centers for 211<br />
patients with recurring or refractory B-cell non-Hodgkin’s<br />
lymphoma. Median overall survival was 49.3 months. The<br />
patients most likely to have long-term remission had nonbulky<br />
disease and achieved a complete response following<br />
treatment. The University of Michigan Comprehensive<br />
Cancer Center followed 76 follicular NHL patients after<br />
treatment with Bexxar. Eight years following therapy, 86%<br />
of patients were still alive and 50% had not had a relapse of<br />
their disease.<br />
Blood-Forming Stem Cells Produced from Fat<br />
Tissue – Researchers from the University of Pittsburgh School<br />
of Medicine report that they have found a way to isolate and<br />
culture human blood-forming stem cells from fat tissue. The<br />
researchers are hoping that this might be a method of giving<br />
patients who need bone marrow transplantation their own<br />
blood-forming stem cells derived from a source other than<br />
their defective bone marrow.<br />
Faster Infusion Schedule for Rituximab in Canadian<br />
Study – The University of British Columbia, Vancouver,<br />
Canada, has developed a 90-minute infusion schedule for<br />
rituximab, in which 20% of the dose is administered in the<br />
first 30 minutes, and the remaining 80% over 60 minutes.<br />
The rituximab infusion is combined with corticosteroids<br />
for this protocol. Only one of 1200 patients receiving this<br />
infusion approach developed a serious reaction, and it was<br />
successfully managed.<br />
Nucleoside Analog Treatment Poses Increased Risk for<br />
Transformation to Aggressive Lymphoma or Leukemia –<br />
A presentation at the <strong>2007</strong> Annual Meeting of the American<br />
Society of Clinical Oncology (ASCO) concluded that there<br />
is an increased risk of transformation to aggressive B-cell<br />
lymphoma or development of myelodysplastic syndrome/<br />
acute myelogenous leukemia (MDS/AML) following<br />
treatment with nucleoside analogs. A total of 326 patients<br />
were investigated, with 173 patients previously treated with<br />
nucleoside analogs and 153 patients treated with other<br />
chemotherapies. Among patients treated with nucleoside<br />
analogs, 10 (5.7%) developed either disease transformation<br />
or MDS/AML at a median time of 48 months following<br />
treatment; only one patient on other therapies experienced<br />
this complication.<br />
New Proteasome Inhibitor Used for Immune System<br />
Cancers – Another report from the <strong>2007</strong> Annual Meeting of<br />
ASCO by K. A. Stewart, et al., presented information on two<br />
Phase I dose studies of a new proteasome inhibitor named<br />
carfilzomib (PR-171). A total of 54 patients with multiple<br />
myeloma, Hodgkin’s disease, non-Hodgkin’s lymphoma, and<br />
WM are enrolled. Several responses have been observed with<br />
no peripheral neuropathy and only one dose-limiting toxicity.<br />
Canadian Study of Bortezomib for WM – The National<br />
Cancer Institute of Canada has reported the results of a Phase<br />
II study of bortezomib as a single agent treatment for 27<br />
untreated or previously treated WM patients. Seventy-eight<br />
percent of these patients achieved at least a 25% reduction<br />
in IgM levels. The most common toxicity seen in this study<br />
was reversible peripheral neuropathy.<br />
The author gratefully acknowledges the efforts of Howard<br />
Prestwich, Bert Visheau, Mike Dewhirst, Gareth Evans, and Neil<br />
Schweer in disseminating news of interest to the WM community.<br />
ADMINISTRATIVE MATTERS<br />
By James Bunton<br />
<strong>2007</strong> Educational Forum DVDs We are very sorry about<br />
the lengthy delay in making available copies of the DVDs for<br />
the <strong>2007</strong> Educational Forum.<br />
Unfortunately, just as the preparation of the tapes was<br />
nearing completion, one of our volunteers had a complete<br />
wipe-out of his computer hard drive. This meant starting all<br />
over again and reloading from the raw tapes recorded at the<br />
forum, inserting the presenters’ slides, and editing the whole<br />
thing over again. This set back means the finished product<br />
will not be available until the middle of November.<br />
Once again our apologies for the inconvenience caused by<br />
this delay.<br />
Special skills Do you have a special skill or training?<br />
On occasion the trustees will consider initiating a new<br />
member service, or enhancing an existing one, but find they<br />
are inhibited in this by a lack of expertise in that area. We<br />
expect there are members with such expertise but do not<br />
know who they are. It was suggested that we would be better<br />
able to use volunteers if we had some idea of the special<br />
skills or training available among our members.<br />
Accordingly, we would like to build up an inventory of<br />
members with special skills or expertise and who would<br />
be willing to volunteer to help IWMF. Some of the areas<br />
that come quickly to mind are legal training, website<br />
administration, computer skills, fundraising and project<br />
management. If you are interested and have a skill you can<br />
volunteer, please send your name to the business office and I<br />
will be in touch with you with further information.<br />
PAGE 5
PAGE 6<br />
Research Clinical Highlights, cont from page 1<br />
Veronique Leblond, Irene Ghobrial, and Meletios Dimopoulos<br />
(principal organizer of the upcoming Kos workshop). Dr.<br />
Myers insisted, and Dr. Dimopoulos agreed, that the workshop<br />
should include a consensus panel charged with updating the<br />
treatment recommendations for both frontline and salvage<br />
therapy from the 3rd <strong>International</strong> Workshop on WM .<br />
As we are all aware, the pace of scientific research continues<br />
unabated, and numerous new treatments have come into<br />
existence and have been evaluated in rigorous clinical trials<br />
since October 2004. The IWMF is proud to have encouraged<br />
and facilitated the updated recommendations for new<br />
treatment guidelines for WM. It is important to note that<br />
the recommendations outlined in this article have not yet<br />
been fully implemented. Drs. Treon and Dimopoulos will<br />
now present the Kos recommendations to a number of WM<br />
clinical experts for final approval; scientific publication will<br />
follow in the clinical literature. The IWMF will also update<br />
two of its most important publications, “Treatment Options”<br />
(August 2003) and “Questions and Answers” (August 2003).<br />
What follows is an outline of the proposed recommendations<br />
for both frontline (initial) and salvage (after the first failed<br />
remission) therapy, updating the previous recommendations<br />
issued following the 3rd <strong>International</strong> Workshop on WM in<br />
2004. I include as well my own comments and observations<br />
since I was privy to the interesting and lively debate which<br />
took place on the very warm island of Kos.<br />
1. Frontline therapy<br />
Frontline (up-front) therapy for WM (in never-before treated<br />
patients) includes:<br />
Monotherapy (single agent therapy)<br />
• alkylator agents cyclophosphamide (Cytoxan),<br />
chlorambucil (Leukeran)<br />
• nucleoside analogs such as fludarabine (Fludara),<br />
cladribine (2CdA), and pentostatin (Nipent), which<br />
is used more commonly in Europe<br />
• the monoclonal antibody rituximab (Rituxan)<br />
Combination therapy<br />
• (RF, RC, RP) rituximab + fludarabine/cladribine/<br />
pentostatin<br />
• (R-CHOP) rituximab + cyclophosphamide +<br />
doxorubicin (Adriamycin) + vincristine (Oncovin) +<br />
prednisone<br />
• nucleoside analogs + cyclophosphamide +/-<br />
rituximab<br />
• (DRC) dexamethasone (Decadron) + rituximab +<br />
cyclophosphamide<br />
• thalidomide (Thalomid) + rituximab<br />
Comments<br />
• Since WM patients are at increased risk of chemoinduced<br />
peripheral neuropathy, bortezomib (Velcade)<br />
was not considered upfront therapy because of the<br />
high risk of neuropathy. However, the incidence of<br />
Velcade-induced neuropathy decreases greatly with a<br />
reduced dosing schedule such as weekly versus twice<br />
weekly. New generations of proteosome inhibitors<br />
from the Velcade family show no neuropathy in early<br />
trials.<br />
• Alkylator agents are not recommended in young<br />
patients (
Research Clinical Highlights, cont from page 6<br />
leukemia (AML), or transformation of WM to diffuse<br />
large B-cell lymphoma (DLBCL) with the use of<br />
nucleoside analogs, particularly fludarabine, was<br />
felt to need more data and review before a consensus<br />
statement could be made.<br />
• It is too early to recommend rituximab maintenance<br />
as long-term data are not yet available.<br />
• Age is an important factor for deciding which initial<br />
monotherapy to use (age 65 is the unofficial cut-off<br />
point); however, the measurable Performance Status<br />
of the patient is very important (a “young” 70 year<br />
old as opposed to a very sick 45 year old).<br />
• Special attention and caution are needed when<br />
using lenalidomide (Revlimid) in WM because of a<br />
possible rapid onset anemia (this is not seen in MM<br />
or CLL).<br />
• Autologous bone marrow transplants are<br />
increasingly viewed as valuable therapeutic options<br />
for the appropriate patient as the data on survival and<br />
duration of remissions are superior to many other<br />
conventional treatments.<br />
• Allogenic transplants should only be considered<br />
when absolutely necessary and in the context of a<br />
clinical trial. See the above comments on RIC or<br />
mini-allo transplants, which may be appropriate in<br />
exceptional cases.<br />
ORAL AND POSTER PRESENTATIONS<br />
Genetics, Pathophysiology and Staging System<br />
Many new and exciting discoveries are being made in the<br />
biology of WM. To date, however, problems still arise in the<br />
accurate differentiation between WM and other similar non-<br />
Hodgkins B-cell immunoglobulin (Ig) secreting lymphomas.<br />
Of particular interest is the family tree of the WM cell and<br />
determining the cell of origin along the B cell developmental<br />
path that gives rise to the WM tumor cell. Most current<br />
research has centered on the WM cell’s inability to “switch”<br />
from the initial production of IgM to the production IgG or<br />
IgA (see the IWMF publication “Introduction to Immunology<br />
in WM”). From the study of this “class switch” phenomenon<br />
(from IgM to IgG and IgA), which is arrested at the IgM<br />
level in WM (neoplastic arrest), and from the study of the<br />
immunoglobulin gene rearrangements, mutations, and class<br />
switch recombination, scientists are gaining insight into<br />
the dissimilarities between WM and IgM-MGUS. (MGUS<br />
refers to “monoclonal gammopathy of undetermined<br />
significance,” which is specified as IgM-MGUS in cases<br />
where the monoclonal protein is IgM.) This could suggest<br />
a distinct differentiation process between WM and IgM-<br />
MGUS. Furthermore, these studies will enable scientists to<br />
identify the differences and similarities between WM and<br />
other B-cell lymphoproliferative disorders, and this, in turn,<br />
can help to explain how the WM tumor cell is produced in<br />
the B-cell differentiation process.<br />
Dr. Linda Pilarski, a research scientist at the University<br />
of Alberta Cross Cancer Institute and a recipient of a large<br />
IWMF research grant, has focused her research on hyaluronan<br />
synthase 1 (HAS1). This large sugar molecule is important<br />
in cell motility, signaling, and mitosis (cell division). Dr.<br />
Pilarski’s laboratory has identified three different gene variants<br />
of HAS1, two of which are the result of partial retention of<br />
a particular segment of DNA in the gene (an intron) that<br />
is found only in patients with WM or multiple myeloma.<br />
“Intronic splicing” is seen only in cancer cells and is not<br />
found in the cells of healthy individuals. The identification<br />
of these gene variants holds promise of the development of a<br />
DNA lab test permitting not only individual risk assessment<br />
strategies for early detection and monitoring of malignancy<br />
before, during and after therapy, but also assessment of<br />
response and prediction of relapse. Furthermore, the pattern<br />
of tumor-specific DNA mutations may provide a common<br />
marker, or ID tag, for all such patients. It may also be possible<br />
to use DNA lab testing to monitor IgM-MGUS for the early<br />
stages of emerging malignancy, response to treatment, and<br />
identification of the monoclonal gammopathies that have the<br />
greatest risk of transformation to WM.<br />
Dr. Rafael Fonseca, a clinical researcher from the Mayo<br />
Clinic in Scottsdale, Arizona, and an IWMF research<br />
grant recipient, has also focused on the genetics of WM.<br />
His prolific gene expression profile studies have recently<br />
suggested that WM shares more similarities with chronic<br />
lymphocytic leukemia (CLL) than multiple myeloma (MM).<br />
Dr. Pilarski, however, contests this observation because her<br />
lab research suggests that WM is closer to MM, not CLL. Dr.<br />
Fonseca argues that, while clinically similar, the cytogenetics<br />
and genomics underlying MM and WM are quite different.<br />
The genetics of WM appears to be much simpler than those<br />
of MM, with fewer abnormalities (the 6q deletion is the<br />
most frequent abnormality in WM, observed in 16% of<br />
WM patients). Newer laboratory tools, such as array-based<br />
comparative genomic hybridization and gene expression<br />
profile, enable researchers to realize high-resolution whole<br />
genome screenings for abnormalities and to gain insight into<br />
the consequences of genomic alterations noted in WM. As is<br />
the hope of many WM patients, future therapeutic decisions<br />
may be based solely on practical clinical tools such as<br />
genomic studies.<br />
Dr. E. Morra of Italy evaluated the existing diagnostic<br />
criteria used to separate IgM-MGUS from SWM (smoldering<br />
or asymptomatic WM). Until recently, a reliable distinction<br />
of asymptomatic populations with different risks of<br />
transformation into active disease was not available. The 2 nd<br />
Research Clinical Highlights, cont on page 8<br />
PAGE 7
TREASURER’S REPORT<br />
AS OF JUNE 30, <strong>2007</strong><br />
James Bunton, Treasurer<br />
The finances of IWMF are operated through two separate<br />
funds: the Research Fund and the Operating Fund.<br />
Research Clinical Highlights, cont from page 7<br />
<strong>International</strong> Workshop on WM (Athens, 2002) recognized<br />
that the sole parameter distinguishing SWM from IgM-MGUS<br />
is the presence, established by microscopic examination, of<br />
lymphoplasmacytic non-Hodgkin’s lymphoma cells in the<br />
bone marrow.<br />
PAGE 8<br />
The Research Fund accounts for all contributions received<br />
for research and is charged only for funds to be expended on<br />
approved research projects.<br />
The Operating Fund accounts for contributions from<br />
members that are not designated as being for research, such<br />
as membership contributions. This fund is charged with all<br />
member services expenses and all operating expenses (none<br />
of which are charged to the Research Fund).<br />
Following is a summary of the financial results for its first<br />
six months of <strong>2007</strong>:<br />
Research Operating Total<br />
Income $323,000 $128,000 $451,000<br />
Expenses 275,000 275,000<br />
Net Income or<br />
(loss) $323,000 ($147,000) $176,000<br />
Income in the Research Fund was very encouraging in<br />
the first half of the year as a result of some significant<br />
contributions, especially from our pledge contributors. No<br />
research projects were approved in the first half of the year.<br />
As a result the fund had no expenses and the net income<br />
in the Research Fund was equal to the gross income for<br />
the period. The research award approved in August to Dr.<br />
Braggio at Mayo, mentioned elsewhere in this issue, will be<br />
an expense of the last half of the year.<br />
Unfortunately, the results in the Operating Fund are quite<br />
different. Expenses for the first six months were very high,<br />
increasing $100,000 over the same period last year. The<br />
major increases in cost this year were the Educational Forum,<br />
fundraising, and especially the printing costs and related<br />
postage of three new major booklets for WM members. While<br />
the resulting net loss of $147,000 is cause for concern, we<br />
should keep in mind that our annual membership campaign<br />
is held in the last few months of year. That is when a large<br />
share of our members’ contributions to the Operating Fund<br />
are received.<br />
In the next few weeks you will be receiving a letter asking<br />
you to make a membership donation. Please consider our<br />
current net loss situation and try to increase your donation<br />
to a higher level than in the past. IWMF needs a healthy<br />
Operating Fund to continue its current member services and<br />
add new ones to assist our members.<br />
Dr. Morra’s more recent study evaluated the prognosis for<br />
patients with IgM-MGUS versus patients with SWM. She<br />
noted that IgM-MGUS patients have a slight overall survival<br />
advantage compared to SWM patients but noted as well<br />
that SWM patients have a mortality rate equivalent with<br />
that of the general population. Risk factors for evolution<br />
of IgM-MGUS into WM or evolution of SWM into active<br />
WM were generally comparable. Increasing levels of IgM,<br />
detection of protein in the urine, decreased levels of IgG<br />
and/or IgA, anemia and other red blood cell abnormalities,<br />
elevated ß2-microglobulin, and other irregularities could<br />
predict evolution into more aggressive disease. Dr. Morra<br />
concluded that IgM-MGUS may be considered as the first<br />
step of an indolent lymphoproliferative disease and as such<br />
recommended periodic bone marrow biopsy evaluations as<br />
well as the requisite blood tests.<br />
Dr. Pierre Morel of France expanded on the role of prognostic<br />
factors in WM. He reported on an <strong>International</strong> Prognostic<br />
Scoring System for Waldenstrom’s <strong>Macroglobulinemia</strong><br />
developed by a number of cooperative groups and institutions.<br />
Review of patient records, essentially retrospective analyses,<br />
identified several risk factors that were consistently associated<br />
with a poor clinical outcome. The combination of advanced<br />
age, IgM levels, low hemoglobin concentration, low platelet<br />
count, low serum albumin concentration and an elevated<br />
serum ß2-microglobulin provides a simple prognostic model<br />
for survival in WM.<br />
Part 2 of this article will be presented in the winter edition<br />
of the Torch.<br />
have your say<br />
The Torch welcomes letters, articles or<br />
suggestions for articles.<br />
If you have something you'd like to share with<br />
your fellow WMers, please contact<br />
Don Lindemann at 510-848-4069 or<br />
torcheditor@gmail.com
More Funds, More Research, cont from page 1<br />
New Classes of Drugs to Treat Waldenstrom’s<br />
<strong>Macroglobulinemia</strong> - In research sponsored by the IWMF,<br />
Dr. Constantine Mitsiades at Dana-Farber has identified<br />
several chemical agents which are effective in the treatment<br />
of WM; those agents are the foundation of research currently<br />
conducted by Dr. Steven Treon’s group at the Bing Cancer<br />
Lab at Dana-Farber.<br />
The agents studied by Dr. Mitsiades are the proteosome<br />
inhibitor PS-341 (bortezomib), thalidomide derivatives<br />
(pamilidomideor, Actimid) and heat shock protein inhibitors<br />
(hsp90). His work focuses on the molecular basis of their anti-<br />
WM activity and shows that each of these agents interferes<br />
with the signaling functions associated with apoptosis,<br />
proliferation of WM cells, and the activation of genes that<br />
cause increased production of WM cells. Dr. Mitsiades also<br />
demonstrated that these agents enhance the activity of other<br />
anti-cancer agents.<br />
Factors Regulating Immunoglobulin-producing B-cells<br />
in Patients With Waldenstrom’s <strong>Macroglobulinemia</strong> - Dr.<br />
Stephen Ansell of the Mayo Clinic in Rochester, Minnesota,<br />
had an initial IWMF grant to study the activity of B-lymphocyte<br />
stimulator (BLyS) in regulating the proliferation of WM cells.<br />
To date, progress has been made in showing which chemical<br />
parts of BLyS effect WM cell growth, and several variations of<br />
BLyS have been synthesized and are being studied for activity.<br />
Dr. Ansell also demonstrated that other cytokines (proteins)<br />
cause the growth and death of WM cells. As a second phase<br />
of his project he proposed a study focused on these cytokines<br />
and received funding from the IWMF. He has already<br />
successfully shown that cytokines previously known to be<br />
active in vitro are also active in vivo. Moreover, his work has<br />
determined that IL-6 in combination with BLyS increases the<br />
production of WM cells and that IgM production increases in<br />
the presence of the connective (stromal) cells in tissues.<br />
Molecular and Functional Sequelae of the P13K Pathway<br />
in Waldenstrom’s <strong>Macroglobulinemia</strong> - Dr. Irene Ghobrial<br />
of Dana-Farber is conducting a clinical trial in which patients<br />
are treated with perifosine, which has been shown to inhibit<br />
a molecular pathway stimulating WM cell growth. The trial<br />
has seen some success with 25 patients being treated. While<br />
11 patients dropped out of the trial for various reasons, the<br />
14 patients remaining showed no sign of disease progression<br />
after two treatment cycles. Six of the 14 have shown a<br />
reduction in IgM levels.<br />
The IWMF gave Dr. Ghobrial a research grant for laboratory<br />
work to identify the pathways signaling to WM cells and to<br />
test various agents for disrupting those signaling pathways.<br />
Dr. Ghobrial’s group is in the process of testing combinations<br />
of perifosine, bortezomib and rituximab.<br />
Genetic Characteristics of Waldenstrom’s<br />
<strong>Macroglobulinemia</strong> - Dr. Linda Pilarski of the University<br />
of Alberta and the Cross Cancer Institute received an IWMF<br />
research grant to study the hypothesis that genetic factors<br />
related to the hyaluronan synthase (HAS1) cause people to<br />
contract various blood cancers. Her studies demonstrate that<br />
mutations of the HAS1 gene can cause WM or MM. Under<br />
the grant she is conducting detailed laboratory work to<br />
determine which mutations are associated with each disease.<br />
By testing people before they contract cancer and identifying<br />
the mutations of the HAS1 gene, Dr. Pilarski believes that<br />
predictions can be made regarding the type of cancer they<br />
will develop and how severe the effects will be.<br />
Comprehensive Studies Into the Genetic Basis and<br />
Pathogenesis of Waldenstrom’s <strong>Macroglobulinemia</strong> - Dr.<br />
Steven Treon’s group at the Bing Center for WM at Dana-<br />
Farber received a four-year research grant to study the genetic<br />
and molecular origin of WM. Three main areas of research<br />
are being funded by this grant. The first area examines<br />
possible genetic predispositions to WM. Studies aimed at<br />
characterizing the blood and cheek cells of both WM and<br />
healthy patients have reinforced previous findings that some<br />
ethnic characteristics (e.g. Ashkenazi) increase the risk of<br />
WM. In addition Dr. Treon’s group has demonstrated that<br />
in family members of WM patients there is a trend revealing<br />
significant irregularities in serum immunoglobulin and<br />
cholesterol levels.<br />
The Dana-Farber group also studied the sequences of various<br />
genes that could be involved in sending messages controlling<br />
WM cell growth and death. Finally, in collaboration with<br />
researchers from the University of Arkansas, gene expression<br />
profiling was also extensively used at Dana-Farber. By<br />
considering which genes were expressed and which<br />
suppressed, the group was able to separate WM patients from<br />
the normal population. WM patients were found to have a<br />
distinct molecular signature, the implications of which need<br />
further elucidation.<br />
Dr. Treon’s second project deals with alterations in the TACI/<br />
TRAF signaling pathway and their ability to predispose<br />
a patient to WM and decreased levels of IgA and IgG.<br />
Mutations were found in TACI which correlated with lower<br />
levels of IgA and IgG. Additional studies are underway to<br />
expand these results by testing more patients, their extended<br />
families, and healthy donors.<br />
The third area of research attempts to determine the<br />
mechanisms which permit the expansion of cancer cells in<br />
the bone marrow of WM patients. The major finding of this<br />
work is that WM cells tend to secrete a soluble protein labeled<br />
sCD27 which is elevated above the level seen in healthy<br />
subjects. These cells were demonstrated to stimulate CD40L<br />
and APRIL, two factors that control growth and survival of<br />
WM cells. Additional work is required to substantiate these<br />
findings.<br />
PAGE 9
HELP LEAVE A LASTING<br />
LEGACY TO IWMF<br />
by Dave Lively and Dick Weiland<br />
At the mid-August IWMF board meeting in Chicago there was agreement among those board members present to consider<br />
a recognition society for all planned giving donors. Official action for this heritage society will be taken at our next board<br />
meeting after a special task force puts together some facts and figures, policies and procedures.<br />
One set of facts we need is a roster of all folks who have left a lasting legacy to IWMF already and of those who have<br />
arranged, or will have done so by April 1, 2008, to include IWMF in some aspect of their estate plan. These “founding<br />
members” would be recognized in a special way, probably at the 2008 Ed Forum. Each year thereafter new members would<br />
be introduced and recognized at such a special event.<br />
So, if you know of someone, or if you intend to include IWMF in some aspect of your own “planned” or “deferred” giving,<br />
such as a bequest, a gift annuity, a trust arrangement, an insurance policy, or a similar planned gift, please feel free to contact<br />
Dave Lively at livelyfish@aol.com or call him at (608) 783-4552. Or complete the Inquiry Form below and return it in the<br />
enclosed envelope with your membership dues, and Dave will get in touch.<br />
PAGE 10<br />
The following is a brief set of definitions of some of the options for easy admission to the IWMF lasting legacy program.<br />
A Bequest through your Will or a Codicil to your Will provides for a percentage of your estate, a fixed amount of money,<br />
or a specific item going to IWMF.<br />
A Charitable Remainder Trust provides income to the donor’s beneficiaries and the remainder to IWMF. Payments are<br />
determined annually and depend on the value of the trust assets as recalculated yearly.<br />
A Gift Annuity provides the donor with a contractual promise of fixed income each year. The payout rate depends upon the age of<br />
each beneficiary at the time the gift is made and when the payments begin. Payments can be deferred for several years.<br />
A Life Estate provides IWMF with a gift of residence or farm while allowing the donor the right to continue to live there<br />
for the remainder of his or her life.<br />
A Charitable Lead Trust provides IWMF with income for a term of years and leaves the remainder to the heirs of the benefactor.<br />
Life Insurance designations allow a charity to receive benefits upon the death of the insured.<br />
Be sure to see your attorney or tax adviser as you put your plans on paper.<br />
PLANNED GIFT/HERITAGE SOCIETY INQUIRY FORM<br />
I would like to support IWMF in one of the following ways. Please contact me about:<br />
❏ A Bequest in my Will or making a Codicil ❏ A Charitable Remainder Trust ❏ A Gift Annuity<br />
❏ A Life Estate or Real Estate Gift ❏ A Charitable Lead Trust ❏ Life Insurance<br />
❏ Other_ ____________________________________<br />
___________________________________________________________________________________________________________<br />
Signature<br />
Name (please print)<br />
___________________________________________________________________________________________________________<br />
Address/City/State/Zip<br />
___________________________________________________________________________________________________________<br />
Telephone Number<br />
E-mail Address
FROM IWMF-TALK<br />
by Mitch Orfuss<br />
Over the summer months the IWMF-Talk participants aired<br />
their views on many topics concerning treatment options<br />
and coping with the side effects of WM. Some of the livelier<br />
discussions are revisited below.<br />
Is there a “magic” PN drug?–Dianne Perry writes that<br />
Mayo Clinic’s web site recommends B-12 for PN. Guy<br />
Sherwood talked about four candidates for treating PN:<br />
L-glutamine (if taken before chemo); B-6 (with caution not<br />
to exceed 50 mg/day); lysine; and what Guy called the clear<br />
winner for him–morphine after Velcade a few years ago.<br />
Ann Tygart wrote about B-12: not just for PN but perhaps<br />
for memory problems as well, especially when taken in<br />
combo with other B vitamins. However, Liane Cochran-<br />
Stafira raised the possibility that B-6 actually makes PN<br />
worse. And Patti takes the supplements acetyl l-carnitine<br />
and alpha lipoic acid in search of better skin, only to learn<br />
that they are both good for PN.<br />
Shingles–Since WM patients are susceptible to Herpes<br />
zoster, commonly known as shingles, there is frequent<br />
discussion on IWMF Talk about this extremely unpleasant<br />
condition. Rob Selden wrote that though shingles is<br />
contagious only through direct contact with open lesions,<br />
such contact does not result in shingles—it causes chicken<br />
pox and does so only if the receiver never had chicken<br />
pox previously. Minnie Hattori sent several short notes<br />
to shingles newcomers describing the symptoms of this<br />
numbing, tingling, burning, itching, eruptive, blistering and<br />
in all ways relentless illness. Fay Langer emphasized that<br />
while shingles did not cause her pain, it did cause constant<br />
itching severe enough to keep her up at night. June Canter<br />
had another take on how sly shingles can be. When June<br />
came down with shingles during Rituxan treatment there<br />
was no rash at all—so no one immediately recognized<br />
her symptoms as a case of shingles. The result was that it<br />
became too late to make use of an antiviral, leaving June to<br />
three months of pain meds to help her get to sleep. Laure<br />
Van Kerkhove told a story of having shingles along with<br />
spinal encephalitis at age nine, causing pains in her side<br />
that she remembers nightmarishly almost four decades later.<br />
Sybil Whitman recounted having suffered from shingles<br />
four times, occurring both before and after her autologous<br />
SCT last year. After five rounds of chemo Gerri McDonald<br />
attempted to wean herself down to a half dose of the antiviral<br />
Famvir and, sure enough, it was weak enough to allow for<br />
a shingles outbreak. Once the outbreak had passed Gerri<br />
went back to the dose of Famvir which had originally been<br />
prescribed for prevention of shingles. There was also<br />
discussion on how long to keep taking a preventive antiviral<br />
after treatment, and our participants reported a range of<br />
directives from their physicians.<br />
Velcade, Leukeran, Campath–Ellen writes that though<br />
she experienced unpleasant side-effects from Velcade with<br />
cortisone–head and neck ache, sleeplessness, shortness of<br />
breath, and edema in the legs–her blood work did improve,<br />
with hemoglobin and WBC back to normal and a 50%-<br />
reduced monoclonal spike. Ron (The Hermit) Romeis,<br />
for a variety of reasons, elected a 13-month course of daily<br />
Leukeran (chlorambucil) in pill form starting in 2004, with<br />
very satisfactory results—but Ron mused on how difficult<br />
it is to know when sufficient treatment crosses over to too<br />
much. Frank Citrone, Jr., enjoyed a partial remission<br />
from Campath (with hydrocortisone) prior to a SCT. Guy<br />
Sherwood wrote that he had a result similar to Frank’s<br />
except that he had Velcade after Campath at Dana-Farber<br />
before his successful auto transplant. Mike writes that he<br />
was diagnosed at 32 and had Campath as a first treatment<br />
with mixed results: a seven-month partial remission but a<br />
knocked-back immune system.<br />
About Rituxan–After Peter DeNardis referenced an article<br />
about fast-infusion of Rituxan, many replies and comments<br />
were received on IWMF Talk. Corinne wrote that she is<br />
given her Rituxan infusions very slowly. During treatment<br />
she tends to get an itchy head and a puffy, red face, and she<br />
has trouble breathing with a heavy feeling in her chest—plus<br />
“restless leg” from the Benadryl. She actually starts taking<br />
prednisone, Benadryl and Zantac the day before treatment.<br />
Her infusion crew adds Atavan to the IV cocktail along with<br />
the Benadryl, and Corinne sleeps for the entire 12 hours.<br />
Maria writes that she didn’t have side effects after the<br />
treatment—just during. Her blood pressure would drop to<br />
a dangerous level. She could not sit still–it felt like “being<br />
plugged in to a wall socket.” So Maria went to the hospital,<br />
the staff infused her over a 24 hour period, and the problems<br />
evaporated.<br />
From IWMF-Talk, cont on page 14<br />
PAGE 11<br />
How to join the IWMF-TALK<br />
Here are two ways to join:<br />
1. Send a blank e-mail to: iwmf-talk-subscribe-request@lists.psu.edu<br />
Make sure to enter the word subscribe as your subject, and do not sign or put anything in the message area (make sure you<br />
do not have any signature information in there). Also, do not put a “period” after “edu” or it will reject. Once approved<br />
you can post by sending e-mail to iwmf-talk@lists.psu.edu<br />
2. Contact Peter DeNardis at pdenardis@comcast.net and provide your full name
PAGE 12<br />
ALABAMA<br />
Mal Roseman<br />
770-392-1255<br />
malroseman@comcast.net<br />
Ann Gray<br />
501-915-0825<br />
anngray1@suddenlink.net<br />
ARIZONA<br />
Phoenix<br />
Ed Nadel<br />
480-502-5045<br />
EnadeL63@aol.com<br />
Tucson<br />
Jackie Smith<br />
Winter-520-299-5470<br />
Summer-605-717-2862<br />
(Nov. 1 – Apr. 1)<br />
ARKANSAS<br />
Eastern<br />
Bill Paul<br />
901-767-6630<br />
biLLpauL1@juno.com<br />
Western<br />
(area not currently served by<br />
support group)<br />
General Contact:<br />
Ann Gray<br />
501-915-0825<br />
anngray1@suddenlink.net<br />
CALIFORNIA<br />
Los Angeles<br />
Kathie Coen<br />
310-454-7127<br />
kdcoen@roadrunner.com<br />
Orange County<br />
Emil Parente<br />
949-388-9666<br />
pnepar@cox.net<br />
Marty Glassman<br />
949-951-6903<br />
mglassman@cox.net<br />
Sacramento<br />
Cynthia Nicholson<br />
916-852-6012<br />
nicholson26@comcast.net<br />
Santa Barbara<br />
Ceci Menchen<br />
805-687-1736<br />
cici@menchen.sbcoxmail.com<br />
San Francisco<br />
Penni Wisner<br />
415-552-6579<br />
penniw@pacbell.net<br />
IWMF SUPPORT GROUP CHAPTER LISTINGS<br />
COLORADO<br />
Bill Bass<br />
303-753-4006<br />
wmbass@ix.netcom.com<br />
Cindy Furst<br />
970-667-5343<br />
cindyfurst@msn.com<br />
CONNECTICUT<br />
Francoise Lampe<br />
203-431-1455<br />
wmfgL@sbcglobal.net<br />
Bob Hammond<br />
203-426-2772<br />
Rhamm17@aol.com<br />
Linda Mc Intosh<br />
860-460-6445<br />
lynmac47@aol.com<br />
DELAWARE<br />
Karen Pindzola<br />
717-845-5937<br />
karenpindzola@yahoo.com<br />
FLORIDA<br />
Treasure Coast<br />
Gail Murdough<br />
772-564-9910<br />
Golphin1@comcast.net<br />
Ft. Lauderdale Area<br />
Charlie Koch<br />
954-476-8726<br />
Bonnie143@bellsouth.net<br />
Tallahassee<br />
Doris Mathis<br />
850-545-5529<br />
dmathis521@aol.com<br />
West Coast<br />
Herb Kallman<br />
239-466-6911<br />
margerina@aol.com<br />
Tampa<br />
Linda Rothenberg<br />
352-688-0316<br />
A1pets@tampabay.rr.com<br />
GEORGIA<br />
Atlanta<br />
Mal & Judy Roseman<br />
770-392-1255<br />
malroseman@comcast.net<br />
HAWAII<br />
(Nov – Apr)<br />
Sandy Skillicorn<br />
808-891-2882<br />
jLsLs@aol.com<br />
IDAHO<br />
Eastern<br />
John Stanger<br />
208-529-4462<br />
johns@dolefresh.com<br />
Barbara Britschgi<br />
208-522-2130<br />
cbrits@cableone.net<br />
Northern<br />
Judy Clark<br />
208-888-0346<br />
jzclark@cableone.net<br />
ILLINOIS<br />
Chicago<br />
Don Brown<br />
630-323-5894<br />
Ldonbrown@msn.com<br />
INDIANA<br />
Ron Payne<br />
937-349-4344<br />
revrpayne@embarqmail.com<br />
Marion Petry<br />
937-438-8850<br />
mLpetry123@earthlink.net<br />
KENTUCKY<br />
Northern KY<br />
Ron Payne<br />
937-349-4344<br />
revrpayne@embarqmail.com<br />
Marion Petry<br />
937-438-8850<br />
mLpetry123@earthlink.net<br />
LOUISIANA<br />
(area not currently served by<br />
support group)<br />
Regional Contact:<br />
Ann Gray<br />
501-915-0825<br />
anngray1@suddenlink.net<br />
MARYLAND<br />
Catherine Naylor<br />
301-229-0319<br />
catherinenaylor@verizon.net<br />
MASSACHUSETTS<br />
Boston<br />
Lynne & Joe Mara<br />
781-749-0204<br />
jmara@nordicgroupusa.com<br />
MASSACHUSETTS<br />
Judy Christensen<br />
781-335-5698<br />
MICHIGAN<br />
Peter & Barbra Boyse<br />
989-415-9936<br />
peterdboyse@earthlink.net<br />
baboyse@earthlink.net<br />
MINNESOTA<br />
Minneapolis/St. Paul<br />
Michelle Blazek<br />
651-730-0061<br />
mandsblazek@comcast.net<br />
MISSISSIPPI<br />
Bill Paul<br />
901-767-6630<br />
biLLpauL1@juno.com<br />
Ann Gray<br />
501-915-0825<br />
anngray1@suddenlink.net<br />
MISSOURI<br />
Nancy Gerhardy<br />
417-889-2461<br />
Gerhardy2000@yahoo.com<br />
MONTANA<br />
John Stanger<br />
208-529-4462<br />
johns@dolefresh.com<br />
Barbara Britschgi<br />
208-522-2130<br />
cbrits@cableone.net<br />
Cindy Furst<br />
970-667-5343<br />
cindyfurst@msn.com<br />
NEBRASKA<br />
(area not currently served by<br />
support group)<br />
Regional Contact:<br />
Cindy Furst 970-667-5343<br />
cindyfurst@msn.com<br />
NEVADA<br />
Eastern<br />
Gerri McDonald<br />
804-484-0360<br />
gerri-sLc@comcast.net<br />
NEW ENGLAND<br />
Boston<br />
Lynne & Joe Mara<br />
781-749-0204<br />
jmara@nordicgroupusa.com<br />
Judy Christensen<br />
781-335-5698
NEW ENGLAND (cont.)<br />
Western MA, VT & CT<br />
Mel Horowitz<br />
518-449-8817<br />
wmcure@yahoo.com<br />
PENNSYLVANIA<br />
Philadelphia<br />
Karen Pindzola<br />
717-845-5937<br />
karenpindzola@yahoo.com<br />
UTAH<br />
Gerri McDonald<br />
801-484-0360<br />
or 801-232-5811<br />
gerri-sLc@comcast.net<br />
CANADA (cont.)<br />
Alberta<br />
Stu Boland<br />
403-281-0271<br />
Stu_boland@hotmail.com<br />
NEW MEXICO<br />
Bill Bilbro<br />
505-642-4987<br />
wbilbro@gmail.com<br />
NEW YORK<br />
Albany<br />
Mel Horowitz<br />
518-449-8817<br />
wmcure@yahoo.com<br />
New York City<br />
Neil Massoth<br />
201-444-6253<br />
nmassoth@aol.com<br />
Rochester, Central & Western<br />
Gail Burgie<br />
585-248-3609<br />
ghburgie@mymailstation.com<br />
NORTH CAROLINA<br />
David Hibbs<br />
919-563-3852<br />
dhibbs1@triad.rr.com<br />
Bob Zehner<br />
804-796-3571<br />
bobnbetsz@comcast.net<br />
NORTH DAKOTA<br />
(area not currently served by<br />
support group)<br />
Regional Contact:<br />
Cindy Furst<br />
970-667-5343<br />
Cindyfurst@msn.com<br />
EASTERN OHIO<br />
Shariann Hall<br />
330-533-4921<br />
shari19@juno.com<br />
Marcia Klepac<br />
412-421-2437<br />
marciaklep@hotmail.com<br />
WESTERN OH, E. IN<br />
Ron Payne<br />
937-349-4344<br />
revrpayne@embarqmail.com<br />
Marion Petry<br />
937-438-8850<br />
mLpetry123@earthlink.net<br />
OREGON<br />
Joan Berglund<br />
503-668-5037<br />
rjbergie@verizon.net<br />
Harrisburg<br />
Terrie Eshleman<br />
717-665-7393<br />
tmeshleman@paonline.com<br />
W. PENN, E. OH, WV<br />
Shariann Hall<br />
330-533-4921<br />
shari19@juno.com<br />
Marcia Klepac<br />
412-421-2437<br />
marciaklep@hotmail.com<br />
RHODE ISLAND<br />
Linda Mc Intosh<br />
860-460-6445<br />
lynmac47@aol.com<br />
SOUTH CAROLINA<br />
John & Paula Austin<br />
803-644-6002<br />
jhaustin@bellsouth.net<br />
SOUTH DAKOTA<br />
(area not currently served by<br />
support group)<br />
Regional Contact<br />
Cindy Furst<br />
970-667-5343 Cindyfurst@<br />
msn.com<br />
TENNESSEE<br />
Central & Western<br />
Bill Paul<br />
901-767-6630<br />
biLLpauL1@juno.com<br />
(area not currently served by<br />
support group)<br />
Regional Contact:<br />
Myrna Daniel<br />
706-539-2866<br />
mdmermer@yahoo.com<br />
TEXAS<br />
Dallas<br />
Jerry Fleming<br />
972-867-5102<br />
NTWMSG@verizon.net<br />
Houston<br />
Barbara & John Manousso<br />
713-840-0828<br />
manousso@hal-pc.org<br />
Western<br />
Bill Bilbro<br />
505-642-4987<br />
wbilbro@gmail.com<br />
VIRGINIA<br />
David Hibbs<br />
919-563-3852<br />
dhibbs1@triad.rr.com<br />
Bob Zehner<br />
804-796-3571<br />
bobnbetsz@comcast.net<br />
WASHINGTON<br />
Peg Horton<br />
253-874-8820<br />
Peggy.horton@comcast.net<br />
WASHINGTON D.C.,<br />
NORTHERN VA<br />
Catherine Naylor<br />
301-229-0319<br />
catherinenaylor@verizon.net<br />
WISCONSIN<br />
Dan Lotts<br />
920-295-3018<br />
danltts@aol.com<br />
Fon Du Lac<br />
Cheryl Callahan<br />
920-921-4854<br />
chercal@charter.net<br />
Western WI<br />
Michelle Blazek<br />
651-730-0061<br />
mandsblazek@aol.com<br />
WYOMING<br />
Roy Parker<br />
303-470-6699<br />
roypar@comcast.net<br />
Bill Bass<br />
303-753-4006<br />
wmbass@ix.netcom.com<br />
Cindy Furst<br />
970-667-5343<br />
cindyfurst@msn.com<br />
INTERNATIONAL<br />
AUSTRALIA<br />
Gareth Evans<br />
WMozzies-owner@<br />
yahoogroups.com<br />
CANADA<br />
Alberta<br />
Cam Fraser<br />
403-281-8278<br />
cmfraser@shaw.ca<br />
Halifax<br />
Susan Gagnon<br />
902-446-9533<br />
sgagnon@eastlink.ca<br />
Montreal<br />
Sandra Proctor<br />
450-672-4336<br />
sandra.proctor@sympatico.ca<br />
Ottawa<br />
Terry Cherry<br />
613-596-1413<br />
terry@tccherry.com<br />
Toronto<br />
Arlene Hinchcliffe<br />
905-337-2455<br />
wmfc@noco.ca<br />
Vancouver<br />
Charlene Kornaga<br />
604-487-1100<br />
dennischarlene.kornaga@<br />
shaw.ca<br />
FINLAND<br />
Veikko Hoikkala<br />
+35 8500 48 4864<br />
veikko.hoikkala@<br />
finnforest.com<br />
UNITED KINGDOM<br />
Nigel Pardoe & Cheryl<br />
Luckie<br />
+44 020 8579 8120<br />
info@septemberservices.com<br />
Sussex<br />
Mike Dewhirst<br />
+44 1323 841735<br />
mkdewhirst@yahoo.co.uk<br />
Birmingham & West<br />
Midlands<br />
Geoffrey Willsher<br />
+44 0121429 1038<br />
willsher.s@btinternet.com<br />
INDIA (area not currently<br />
served by support group)<br />
Regional Contact:<br />
Sanjeev Kharwadkar<br />
swkharwadkar@yahoo.co.in<br />
PAGE 13
PAGE 14<br />
From IWMF-Talk, cont from page 11<br />
Betty McPhee writes regarding the phenomenon of<br />
Rituxan flare to remind us that not everyone experiences<br />
it. Guy Sherwood says that many oncologists recommend<br />
plasmapheresis before Rituxan therapy when IgM reaches a<br />
certain level, though this level varies by doctor. Matt raised<br />
the issue of one downside to a great treatment result: after a<br />
course of fludarabine and Rituxan no less than eight years<br />
ago that brought his hemoglobin and IgM all the way back<br />
to normal levels, Matt’s IgG worsened with every blood<br />
work report. Could the combo treatment have caused that<br />
negative despite the positive results with other important<br />
blood readings? Should Matt seek the fludarabine/Rituxan<br />
combo treatment again if it becomes time to treat?<br />
Jeff Atlin writes about Velcade and Rituxan in combo,<br />
referencing a Phase-II trial in which the amount of Velcade was<br />
halved. The result: excellent response—and fortunately without<br />
the PN previously associated with higher dose Velcade.<br />
Another thread of Talk that sparked interest concerned a<br />
rapid-infusion test of Rituxan. The standard infusion rate<br />
for Rituxan, established empirically taking potential adverse<br />
reactions into account, is slow, ranging between 4-7 hours.<br />
But, as recently reported, 1200 patients in British Columbia<br />
tolerated Rituxan delivered by a severely compressed<br />
infusion schedule in which 20% of the total drug was infused<br />
in the first 30 minutes and the remaining 80% in the next<br />
60 minutes. What a potential improvement in resource<br />
utilization! Betty McPhee said that she had recently had a<br />
rapid infusion of Rituxan without problem.<br />
Finally, there continues to be considerable passionate<br />
discussion on IWMF Talk about the many unknowns<br />
concerning maintenance Rituxan. Bob Bent, Ron Draftz,<br />
Dave Johnston, Dr. Tom Hoffmann, and this writer, among<br />
many others, weighed in with a wide array of thoughts and<br />
speculations. Though the evidence does not now exist to<br />
show that maintenance-R is or is not a treatment approach<br />
superior to Rituxan-As-Needed, this topic continues to<br />
excite the imaginations of the readers of Talk as much as,<br />
if not more than, any other topic that pops up. There have<br />
been many reports from patients who say they were, or are,<br />
on maintenance-R schedules, with spirited responses from<br />
others. Perhaps Guy Sherwood has the last word-–for now,<br />
anyway!–with a reminder from the scientists working so<br />
hard for us. A panel of experts at the recent 4th <strong>International</strong><br />
Workshop on WM on Kos Island, Greece, addressed the issue<br />
of maintenance Rituxan, and there was a virtually unanimous<br />
decision that the recommendation in favor of maintenance<br />
(every 3 months for 2 years or similar protocol) could not<br />
be made at this time because of lack of data. By the time<br />
the next <strong>International</strong> Workshop on WM is held in two years,<br />
Guy expects that sufficient data will be available to make a<br />
confident, fact-based recommendation, be it for or against<br />
maintenance Rituxan. In the meantime, we can expect this<br />
topic to continue to surface again and again.<br />
SUPPORT GROUP NEWS<br />
edited by Penni Wisner<br />
New support groups continue to blossom and expand.<br />
Here in California, in the south, a new group formed, and<br />
the Orange County group is very active. One of the most<br />
exciting developments for groups has been the visits of<br />
Drs. Irene Ghobrial and Steven Treon, both of Dana-Farber<br />
Cancer Institute. Their cutting edge research and clinical<br />
expertise is very much on display in their presentations at<br />
these small (compared to the annual IWMF Educational<br />
Forum), meetings. And summer appears to be a social<br />
season for support groups as many host annual barbecues<br />
and picnics. A recent post to IWMF-Talk concerned research<br />
into what patients wanted from support groups. Run by and<br />
for WM patients and their families and friends, they reflect<br />
our unique concerns. Read on to discover what the groups<br />
in your area are discussing.<br />
CALIFORNIA<br />
Los Angeles<br />
Katie Coen organized the Los Angeles support group which<br />
met for the first time in July. They had a good turnout and<br />
plan to continue to meet regularly. Occasionally, the group<br />
will join with its neighbor in Orange County for programs<br />
such as the October 6 presentation of Dr. Irene Ghobrial.<br />
Orange County<br />
Marty Glassman, co-leader of the Southern CA support<br />
group, organized the October 6 meeting featuring Dr. Irene<br />
Ghobrial at the Hoag Cancer Center in Newport Beach.<br />
Sacramento and Bay Area<br />
Does it count as a meeting when two members meet? Talk<br />
on the telephone? Perhaps the most important—and most<br />
enjoyable—role of support group facilitators is that of “first<br />
responder.” Newly diagnosed patients find the name of the<br />
local group leader on the web and call or email. Hopefully,<br />
after that initial call, patients can more easily navigate the<br />
often confusing path before them. At first some patients are<br />
reluctant to attend a meeting: they are afraid a room full of<br />
WMers will be a room full of sick people. Or they just do not<br />
want to think about their disease. But then, gathering their<br />
courage, they show up. And discover homemade cookies and<br />
a caring group of active, intelligent, curious, dedicated peers.<br />
And from these, they can learn what lies ahead after diagnosis,<br />
the subject of the group’s fall meeting October 14.<br />
COLORADO & WYOMING<br />
The Colorado-Wyoming support group (also known as<br />
the Rocky Mountain support group) enjoyed a wonderful<br />
presentation in September by Dr. Irene Ghobrial. She spoke<br />
to a joint meeting of the IWMF group and the local chapter<br />
of the Leukemia & Lymphoma Society. The winter meeting<br />
will feature Dr. Steven Treon on February 9.<br />
Support Group News, cont on page 15
Support Group News, cont from page 14<br />
FLORIDA<br />
South Florida<br />
Dr. Daren Grosman fielded questions in an “Ask the Doctor”<br />
format for the summer gathering of the South Florida IWMF<br />
support group. Each patient was able to discuss his or her<br />
status and treatment. Dr. Grosman discussed the various<br />
options available to patients including when to start with<br />
Rituxan, Rituxan maintenance, use of Velcade, identifying<br />
the monoclonal spike, peripheral neuropathy, plasmapheresis,<br />
and treatment side effects. Handouts of the new IWMF<br />
publications were also provided. The next meeting is being<br />
planned for early December and the hope is to have another<br />
guest speaker.<br />
GEORGIA<br />
The Georgia and South Carolina support groups will meet<br />
on Saturday, October 20, to hear the latest from Dr. Steven<br />
Treon. Anyone who would like to attend, please contact Mal<br />
Roseman by email.<br />
IDAHO<br />
The Eastern Idaho support group is quite small with just four<br />
patients and four caregivers. We welcome all WM patients<br />
in the Snake River Valley as well as patients in Western<br />
Wyoming and Southern Montana. Despite thin population<br />
density and great distance, in June the group held its third<br />
annual barbecue at a member’s home. Proving that “the third<br />
time’s a charm,” it did not rain. We traded WM-educational<br />
DVD’s from our group library. A new addition this year is<br />
the “Weeds in the Garden” DVD by the Mayo Clinic’s Dr.<br />
Morie Gertz. In August the group met informally for lunch<br />
at a local restaurant. Since three out of the four patients are<br />
in treatment, the group feels it is important to meet, or at<br />
least communicate by telephone/email, as often as possible.<br />
The next meeting will be during the holiday season. We<br />
continue to reach out via IWMF-Talk and the Torch as well<br />
as through the local newspaper and with notices placed at<br />
cancer centers and oncology offices in our area.<br />
MINNESOTA & WESTERN WISCONSIN<br />
Plenty of laughter, feasting, playing games, and getting to<br />
know one another better were the featured menu items for<br />
the Minnesota/Western Wisconsin support group’s first<br />
annual summer picnic. Sixteen members frolicked through<br />
the lovely afternoon. A nutritionist spoke at the group’s<br />
September meeting.<br />
SUPPORT GROUP LEADERS<br />
TALK LIST<br />
This list is only for support group leaders to use in<br />
communicating with each other about support group<br />
issues. It is used by the leaders to share their experiences<br />
and ideas for facilitating our IWMF support groups.<br />
Please email Support Group Coordinator, Karen<br />
Pindzola at kpindzola@yahoo.com if you would like to<br />
participate.<br />
NEW YORK<br />
Rochester, Western and Central NY<br />
In July the group enjoyed a good turnout and lots of great<br />
conversation and food at the annual summer picnic. Pam<br />
and Frank Fox-Ferro were perfect hosts. Usually meetings<br />
are held at the Albany Medical Center where the free parking<br />
is greatly appreciated. At the September meeting the group<br />
was particularly excited about the upcoming October 13th<br />
Regional Lymphoma Research Foundation (LRF) Ed Forum<br />
in Brooklyn, at which Drs. Ghobrial, Coleman, and Nichols<br />
will give presentations during the WM sessions. The support<br />
group meets next on November 17.<br />
OREGON/SOUTHWEST WASHINGTON<br />
The Oregon and Southwest Washington WM support group<br />
meets quarterly. At this summer’s meeting two members and<br />
their spouses who had attended the IWMF patient education<br />
forum in Atlanta shared their impressions. Following their<br />
presentation, the group broke into two small groups (patients<br />
and caregivers) for sharing and Q&A. The patient group was<br />
moderated by IWMF support group leader Joan Berglund,<br />
RN, MSN. The caregiver group, including spouses and<br />
friends, was moderated by Sue Sumpter, RN, MS, Patient<br />
Services Manager, The Leukemia & Lymphoma Society,<br />
Oregon and S.W. Washington Chapter. The feedback from<br />
this meeting, our fourth, indicated that it was one of the best<br />
so far. Attendees felt they learned from the presenters and<br />
also had an opportunity to get better acquainted in the small<br />
groups. They were able to ask questions and learn from each<br />
other and to get ideas by group brainstorming. The group<br />
plans to meet the 4th Saturday of every third month (January,<br />
April, July and October). Our next meeting will be October<br />
27. This is a change from the previously published date. The<br />
January meeting will be postponed until February 2.<br />
PENNSYLVANIA<br />
Philadelphia<br />
Sixteen Philadelphia-area folks and Heidi, the Pindzolas’<br />
white dog, met in August at the Bryn Mawr Hospital for a<br />
wonderful session of sharing and discussion. We covered<br />
people’s experiences with many of the current treatments,<br />
various symptoms and how they were handled, and a couple<br />
of more serious problems that were perhaps in need of a<br />
second opinion. In addition, the group discussed the whys<br />
of support group attendance and came up with quite a little<br />
list including:<br />
1. Feels good to see old friends and keep up with WM<br />
acquaintances.<br />
2. Hearing firsthand experiences of symptoms and treatments<br />
is very educational. The group decided it is particularly<br />
encouraging to hear about people who are doing well.<br />
3. Gathering feedback for managing new symptoms.<br />
Support Group News, cont on page 16<br />
PAGE 15
PAGE 16<br />
Support Group News, cont from page 15<br />
The group is fortunate to have a good joke teller (not the<br />
dog) and good snack providers, Jim and Betty Orteleva.<br />
The next meeting will be the second Sunday of November<br />
(instead of October): 2 pm Sunday, November 11.<br />
SOUTH CAROLINA<br />
The South Carolina WM support group will join with<br />
the Georgia support group on Saturday, October 20, for a<br />
joint meeting in Atlanta, where we are fortunate to have<br />
Dr. Stephen Treon of Dana-Farber joining us to provide an<br />
update on the latest advancements in WM treatment. Please<br />
contact the SC support group coordinators, John and Paula<br />
Austin, if you would like to attend.<br />
TEXAS<br />
Dallas & Northern Texas<br />
The North Texas support group is enjoying a new relationship<br />
with several other organizations. In May we co-sponsored a<br />
meeting with the Leukemia & Lymphoma Society hosting<br />
Marvin Stone, MD, Chief of Oncology at Baylor University<br />
Medical Center in Dallas and Steven P. Treon, MD, Program<br />
Director, the Bing Center for Waldenstrom’s Research, Dana-<br />
Farber Cancer Institute. In September the group participated<br />
in the Lone Star Blood Cancer Conference sponsored by the<br />
LLS at the University of Texas Southwestern Medical Center<br />
in Dallas. During the break-out session time, the group had<br />
its September meeting. On Saturday, November 17 at 10:30<br />
am the group will host Dr. Ghobrial, Instructor of Medicine,<br />
Dana-Farber Cancer Institute. She will speak on “Novel<br />
Therapeutic Options for Waldenstrom’s <strong>Macroglobulinemia</strong>”<br />
at the Baylor University Medical Center. The meeting will<br />
be co-sponsored by the LLS of North Texas and the Baylor<br />
Charles A. Sammons Cancer Center at Dallas, Baylor<br />
University Medical Center.<br />
Houston<br />
Drawing on local expertise, the Houston support group had<br />
a wonderful program with M.D. Anderson’s Dr. Sheeba<br />
Thomas on a Sunday in August. Dr. Thomas gave a very<br />
informative overview on the molecular basis of WM. The<br />
group proclaims her a most welcome addition to the cadre<br />
of caring WM expert doctors. On Sunday, November 11,<br />
at 3 pm Houston will have their meeting with guest speaker<br />
Dr. Ghobrial. This program will again be coordinated with<br />
the LLS. The location will be at the home of group leaders,<br />
Barbara and John Manousso. RSVP by November 9.<br />
VIRGINIA<br />
Central Virginia<br />
Bob Zehner hosted a cookout in August for the Central<br />
Virginia support group at his home in Chesterfield. Attendees<br />
arrived from Virginia Beach, Middlesex, Portsmouth, and<br />
the Richmond area. Three members of the group are, or<br />
have been in, clinical trials, and the rest were eager to hear<br />
about personal experiences in the trials. Member Arno<br />
Muller shared some of the things he learned at the IWMF<br />
Atlanta forum.<br />
THE LIFELINE<br />
If you can’t get to a local support meeting, use our IWMF<br />
Telephone Lifeline to call a WM veteran.<br />
The lifeline is seeking volunteers who speak a language<br />
other than English. If you would like to volunteer, please<br />
contact the IWMF business office at 941-927-4963 or<br />
info@iwmf.com.<br />
2-CdA<br />
Norm Spector 858-454-6313<br />
2-CdA WITH RITUXAN<br />
Bernard Swichkow 305-670-1984<br />
CAREGIVING<br />
Lynn Bickle 805-492-4927<br />
Brad Alexander 972-529-2002<br />
CHLORAMBUCIL<br />
Dave Lively 608-783-4552<br />
Ronald Romeis 610-724-3481<br />
Jerry Berman 416-925-6715<br />
CLINICAL TRIALS<br />
Tom Hoffmann 501-868-8305<br />
Guy Sherwood 765-282-4377<br />
CRYOGLOBULINEMIA<br />
Fay Langer 973-464-6696<br />
FLUDARABINE<br />
Peg Horton 253-874-8820<br />
Dave Lively 608-783-4552<br />
FLUDARABINE with Rituxan<br />
Marty Kopin 310-390-1546<br />
Jerry Block 301-460-9799<br />
LATEST RESEARCH<br />
Bert Visheau 905-528-1789<br />
NEWLY DIAGNOSED<br />
Guy Sherwood 765-282-4377<br />
Norm Spector 858-454-6313<br />
Sallie Moore 516-795-3746<br />
ORAL CYTOXAN<br />
Lou Birenbaum 314-961-5591<br />
PLASMAPHERESIS<br />
Fred Bickle 805-492-4927<br />
Arlou Brahm 203-264-7995<br />
RITUXAN<br />
Charles Vassallo 201-947-6977<br />
James Townsend 352-376-3664<br />
Allen Weinert 603-863-5347<br />
760-568-2918
SOCIAL SECURITY DISABILITY<br />
Howard Prestwich 815-233-0915<br />
SPLENECTOMY<br />
Kathleen Ugenti 631-470-0971<br />
STEM CELL TRANSPLANT<br />
Howard Donley 307-587-3397<br />
Davell Hays 530-295-1344<br />
Sybil Whitman 506-450-3970<br />
THALIDOMIDE<br />
Mel Horowitz 518-449-8817<br />
VELCADE<br />
Jeff Atlin 905-731-7756<br />
VETERANS<br />
Jerry Fleming 972-867-5102<br />
WATCH AND WAIT<br />
Mel Horowitz 518-449-8817<br />
Renee Paley-Bain 203-744-7851<br />
Polly Oldberg 513-932-7486<br />
YOUNG WM<br />
Nobby Riedy 650-879-9104<br />
Bob Bailey 770-664-8213<br />
Betty Mc Phee 905-775-3413<br />
HEARING IMPAIRED TTY FACILITY<br />
SWEDEN/NORWAY<br />
Anne Odmark 46 018-14 05 13<br />
anneodmark@privat.utfors.se<br />
GERMAN SPEAKER<br />
Roy Parker (Colorado, USA)<br />
303-470-6699<br />
Rnvp38@hotmail.com<br />
Sybil Whitman (New Brunswick, CANADA)<br />
506-450-3970<br />
hcouture@nbnet.nb.ca<br />
DUTCH SPEAKER<br />
Lia van Ginneken-Noordman<br />
Ginneken.noordman@wxs.nl<br />
SPANISH SPEAKER<br />
Peter Mitro<br />
440-247-3460<br />
stonehill@earthlink.net<br />
Betsy Beazley<br />
510-527-5827<br />
betsybeazley@gmail.com<br />
SPANISH SPEAKER (cont.)<br />
Gladys Mendieta<br />
215-860-9216<br />
Gladysmendieta@aol.com<br />
FRENCH SPEAKER<br />
Guy Sherwood<br />
765-282-4377<br />
guysherwood@comcast.net<br />
Sybil Whitman (New Brunswick, CANADA<br />
506-450-3970<br />
hcouture@nbnet.nb.ca<br />
UNITED KINGDOM LIFELINE<br />
2Cda<br />
Roger Brown +44 01285 650107<br />
roger@bookworm.uk.com<br />
CHLORAMBUCIL<br />
John Povall +44 1606 833022<br />
jpovall@mmm.com<br />
FLUDARABINE<br />
Ken Rideout +44 1278 782108<br />
ken@4rosetree.fs.co.uk<br />
FLUDARABINE AND CYCLOPHOSPHAMIDE<br />
John Povall +44 1606 833022<br />
jpovall@mmm.com<br />
FLUDARABINE AND RITUXIMAB<br />
Mike Dewhirst +44 1323 841735<br />
dewhirst_6@hotmail.com<br />
OPTHALMOLOGY<br />
Terry Betts +44 01992 583643<br />
tjb-planning@freeuk.com<br />
PLASMAPHERESIS<br />
Roger Brown +44 1285 650107<br />
roger@bookworm.uk.com<br />
RITUXAN<br />
Nigel Pardoe +44 0208 326 3270<br />
pardoe@aol.com<br />
UK WEBSITE/CHAT ROOM<br />
Raphael Altman<br />
arty@aranti.freeserve.co.uk<br />
PAGE 17
PAGE 18<br />
Since June, <strong>2007</strong> the<br />
following contributions<br />
to the <strong>International</strong><br />
<br />
Waldenstrom’s<br />
<strong>Macroglobulinemia</strong><br />
<br />
Foundation were made in<br />
memory of:<br />
In memory of Martin Baer:<br />
Jess & Lauri Rosenthal<br />
<br />
In memory of Michael Baranski:<br />
Delores Baranski<br />
Sam & Lindsay Moucha<br />
In memory of Evelyn Beattie:<br />
Angelo & Mary Jane Hernandez<br />
Frank & Carol Rockwell<br />
In memory of Paula Myra Boelts:<br />
Kerry, Denise & Jim Armstrong<br />
Leo & Yoli Bounds<br />
Dennis & Diane Giuliano<br />
John & Judy Giuliano<br />
Tom, Nina and Bruce Giuliano<br />
Jim & Doris Pool<br />
In memory of Bob Botwen:<br />
Noah & Phyllis Fields<br />
In memory of Kay Bruce:<br />
Sam & Doris Mathis<br />
In memory of Robert G. Bryans:<br />
Richard & Barbara Bonnardel<br />
In memory of Bud & Edna Carpenter:<br />
Ed & Idalee Carpenter<br />
In memory of Sophie Clemenza:<br />
Noah & Phyllis Fields<br />
In memory of Lucille Dettore:<br />
Don & Lillian Colavecchio<br />
In memory of Jay Fitts:<br />
Edith Haffner Fitts<br />
<br />
In memory of Sally Frankel:<br />
Dassault Systemes Americas Corp.<br />
In memory of Manny Friedman:<br />
Esther Mann & Family<br />
In memory of Irene Hagland:<br />
Patricia Massett<br />
In memory of Lucille Harris:<br />
Sam & Doris Mathis<br />
In memory of Bernice Katz:<br />
Noah & Phyllis Fields<br />
Herb & Judy Fuchs<br />
In memory of Raymond Kuehn:<br />
Roberta Kuehn<br />
In memory of John Lane, Jr.:<br />
Caroline Herr<br />
Lauren Wendel<br />
Mary Wendel<br />
Steven Wendel<br />
Whitney Wendel<br />
In memory of Michael Lesmister:<br />
Gay Lesmister<br />
In memory of Lillian Lillemoe:<br />
Alden & Doris Halloran<br />
In memory of Lachlan Macphail:<br />
Friends & Colleagues at StreetForce<br />
In memory of Catherine Mc Gee:<br />
L. Allan<br />
Gini Bethell<br />
Big Brothers & Sisters Board of<br />
Directors<br />
Monique Brazeau<br />
James Carroll & Family<br />
Eleanor Chase<br />
Terry & Janet Cherry<br />
Eloise Colson<br />
William Henneker<br />
David Hoodspith<br />
Jan & Frank Jones<br />
Rosemarie Komm<br />
Pauline Levean<br />
Darquise Moore<br />
David & Marie Norlock<br />
Chantal Sayde<br />
<br />
In memory of Jerold R. Peterson:<br />
Ruth Kinka Beile<br />
Paul & Gloria Carter<br />
Check ‘n Go<br />
Kenneth & Jane Cihon<br />
Clingen, Callow & McLean, LLC<br />
The Dorr, Sullivan & Fleming<br />
Families<br />
Donald & Hildegarde Duval<br />
Al & Carolyn Fulton<br />
Jack & Lorraine Kull<br />
Warren & Helen Petersen<br />
Corinne Schaer<br />
Patricia Wadsworth<br />
Dick & Janice Wilson<br />
Craig & Jan Zaleski<br />
<br />
In memory of Peter G. Pfendler:<br />
Peter Hardin & Karen MacPherson<br />
Tom, Barbara & Amy Pfendler<br />
In memory of Neil Rehrer:<br />
Bruce & Joann Binkley<br />
Lawrence & Arelene Marsh<br />
In memory of Alfred Sfreddo:<br />
Michael & Jo-Ann Killeen<br />
Donald Sfreddo<br />
In memory of Russell F. Smith:<br />
Ed & Idalee Carpenter<br />
Helen Cernauskas<br />
Robert & Carol Dawson<br />
Sue Eichhurst<br />
A. Hinz<br />
Joanne Hughes<br />
Sue Iona<br />
Arlene Kucaba<br />
Mr. & Mrs. Dean Lindemann<br />
Mr. & Mrs. Ed Mazurowski<br />
Mr. & Mrs. Rich Morrow<br />
Mr. & Mrs. Charles Plasil<br />
Betty M. Prochazka<br />
Mr. & Mrs. Donald Sikorski<br />
Dorothy Smith<br />
In memory of Jenni Stone:<br />
Jerry M. Fleming<br />
In memory of Mari Ellen Stoddard:<br />
Judith Workman<br />
In memory of Paula Sweeney:<br />
Peyton & Emily McLamb<br />
In memory of Diane Taylor:<br />
Ruth A. Bourdelais<br />
David & Joanne Cross<br />
Janet Delani<br />
Beverly & Lester Hall<br />
High Plain Elementary School<br />
Sunshine Fund<br />
Bente Lupion<br />
John & Delcie Myatt<br />
Ann Tarr<br />
In memory of Edward Wubbins:<br />
Bob & Sue Morris<br />
In memory of Harold Zfaney:<br />
Jeff Baer<br />
Jim & Peggy Belmonti<br />
Ben & Joan Bishaf<br />
Marvin & Gail Boehm<br />
Joel Fenchel, Fischel & Kahn<br />
Sergio & Edna Garcia<br />
Scott & Lori Goldberg<br />
Susan Gradman & Jeff Gourdji
In memory of Harold Zfaney (cont.):<br />
Nancy Kohn<br />
Gerald Leeb<br />
Max & Sondra Lorig<br />
Colleen Lowmiller<br />
Joseph & Phyllis Meltzer<br />
John & Frances Moore<br />
The Nadig Family<br />
Sy & Miffie Nagorsky<br />
Richard & Marsha Newman<br />
Jonathan Paluga<br />
Robbie & Bunny Polovin<br />
Michelle Prettyman<br />
Fred & Brenda Turner<br />
Leslie & Jo Turner<br />
Mark & Barbara Turner<br />
Robert Wagman<br />
Since June, <strong>2007</strong> <br />
the<br />
following contributions<br />
to the <strong>International</strong><br />
Waldenstrom’s<br />
<strong>Macroglobulinemia</strong><br />
Foundation were made in<br />
honor of:<br />
In honor of Dr. Ashraf Badros:<br />
The Washington DC Area Support<br />
Group<br />
In honor of Fred & Lynn Bickle:<br />
Cars 4 Cash Charity<br />
In honor of Ross A. Bielenberg:<br />
Mark, Julie & Kaitlyn Sintkowski<br />
In honor of Erna Brout:<br />
Marcia Heisler<br />
In honor of the wedding of Melissa<br />
Brown to Aaron Tieman and in honor<br />
of Donald Brown, Father of the Bride:<br />
Rev. & Mrs. Ralph E. Robrahn<br />
In honor of Jim & Barb Bunton:<br />
Jack & Joan Hill<br />
John Wilson<br />
<br />
In honor of Susan Burns:<br />
Avon Products<br />
In honor of Joy Dulin:<br />
Michael & Jan Dulin<br />
In honor of Jeffrey Eickhoff:<br />
Carolyn Moser<br />
Bob & Tara Vincent<br />
<br />
In honor of Jerry Fleming:<br />
John & Marie McCann<br />
In honor of Dr. Irene Ghobrial’s<br />
research:<br />
San Francisco Bay Area Support<br />
Group<br />
In honor of Dave Heiser:<br />
D. Neil & Maddie Gissler & Family<br />
In honor of Leslie Herzog & Steven<br />
Blum:<br />
Warren & Holly Rosencranz & Gang<br />
In honor of Helena Hollitscher:<br />
Pete Hollitscher<br />
In honor of Bill Howanski:<br />
Kristine Howanski<br />
In honor of Elinor Howenstine:<br />
Thomas C. Howenstine<br />
Monte Robison<br />
In honor of Catherine James and the<br />
Wedding Day of Jimmy & Tricia<br />
Wells:<br />
The Borchardt Family<br />
In honor of Mrs. Brent S. James:<br />
Jim & Sheila Denes<br />
In honor of Cyrus Karper:<br />
Betsy, John, Jonah & Maggie Brais<br />
<br />
In honor of Dr. David B. Kirby:<br />
Nancy Fisher<br />
In honor of Steve Kirsch:<br />
Robert, Sara & Elsie Benjamin<br />
In honor of Dave Lively:<br />
Minnesota-Wisconsin Support Group<br />
In honor of Catherine Mc Clounan:<br />
Elizabeth Rudolph<br />
In honor of Sheila & Everett McGinn:<br />
Colleen & Brian O’Neill<br />
In honor of E. Lynn Overboe:<br />
Edwin & Helen Overboe through<br />
the Fargo-Moorhead Area<br />
Foundation<br />
In honor of Karen Pindzola:<br />
Marcia Bosswick<br />
In honor of Alice Riginos:<br />
Gus & Linda Swift<br />
In honor of Ada Royce:<br />
Lloyd & Mary Elizabeth Josie<br />
In honor of Jeffrey & Susan<br />
Rubenstein:<br />
John & Christina Hatherly<br />
In honor of David Smith:<br />
William & Marjorie Foss<br />
In honor of Peter Steel and The Mills<br />
& Reeve Coast to Coast Cycle Ride:<br />
Rachel Birks<br />
Linda Cusack<br />
James Hiscock<br />
Matthew Pearce<br />
Neil Sleat<br />
Jonathan Smart<br />
In honor of the wedding of Aaron &<br />
Melissa Tieman:<br />
Don & Mary Brown<br />
In honor of Dr. Steven Treon:<br />
Anita Nelson<br />
In honor of Charles Vassallo’s 60 th<br />
Birthday:<br />
Linda Bohdan<br />
Michael Burke<br />
Joan Cioffi<br />
Brad & Serina Dansker<br />
Charles & Maryann DiMaggio<br />
Joseph & Ann Grippo<br />
William & Maria Grohskopf<br />
Maria Hellen<br />
Christopher Kearns<br />
Vittoria Massari<br />
Mark & Christina Nissen<br />
Norma Pallares<br />
Mark Petrone<br />
Paul & Mary Petrone<br />
Eric & Eileen Plasa<br />
Anna-Maria Rothenberg<br />
Bill & Janet Ulbrich<br />
Vincent & Rosemary Vassallo<br />
<br />
In honor of Ubaldo Vitali:<br />
The Family of Michael Arace<br />
Bruce & Judy Bernbaum<br />
Jennifer Bernbaum<br />
Celeste & Phyllis Fasone<br />
Val & Yolanda Iacovantuno<br />
Timothy & Gina Monahan<br />
John & Diane Vantuno<br />
Ralph & Nicole Wagner<br />
PAGE 19
Non Profit Org<br />
US Postage<br />
PAID<br />
Manasota, FL<br />
Permit No. 133<br />
<strong>International</strong> Waldenstrom’s<br />
<strong>Macroglobulinemia</strong> Foundation<br />
3932D Swift Road<br />
Sarasota, FL 34231-6541<br />
Telephone 941-927-4963 • Fax 941-927-4467<br />
E-mail: info@iwmf.com. • www.iwmf.com<br />
IWMF is a 501(c)(3) tax exempt non-profit organization<br />
Fed ID #54-1784426<br />
PAGE 20<br />
What is, cont from page 3<br />
picked up by the detectors and provides information about the cell’s characteristics.<br />
Light that bounces forward (called forward scatter or FSC) gives information about the cell size. Light that bounces off the<br />
side (called side scatter or SSC) provides information about the inner structure of the cell, such as the shape of its nucleus<br />
or the amount and kind of granules present. Each type of cell in the immune system (lymphocytes, monocytes, neutrophils,<br />
etc.) has a unique combination of forward and side scatter measurements, allowing the instrument to count the number of<br />
each type of cell present in the sample.<br />
Flow cytometers can also use antibodies tagged with fluorochrome stains that bind to specific antigens on the cell surfaces.<br />
In the case of leukemias and lymphomas, these fluorochrome-tagged antibodies bind with and identify protein surface<br />
markers on the immune cells called cluster differentiation (CD) markers. When a fluorochrome stain is added to the cell<br />
sample, a laser beam excites the cells so that they fluoresce and emit a specific color of light, depending on the type of<br />
fluorochrome stain used. Color detectors collect the different colors of light and send the data to the computer.<br />
Modern flow cytometers usually have multiple lasers and fluorescence detectors. Increasing the numbers of lasers and<br />
detectors allows for multiple antibody labeling and can more precisely identify a target population of cells.<br />
The computer attached to the flow cytometer tabulates the data from the light scatter measurements and the fluorescing cells<br />
and can plot the data in several ways. The most common plot is a graph called a histogram, where fluorescence intensity<br />
or the degree of scattered light (x-axis) is plotted against the frequency at which this type of event occurs (y-axis). From<br />
such a histogram, the population distribution for the particular cell(s) of interest can be determined. Other types of plots are<br />
called dot, density, or contour plots. The operator of the flow cytometer can select certain cell populations based on their<br />
characteristics in order to refine and further analyze the data—a process called gating.<br />
Flow cytometers can also be configured as sorting instruments. As the cells pass through, they can be electrically charged<br />
selectively and on their exit can be deflected into separate paths of flow. It is therefore possible to separate several defined<br />
populations of cells from an original mixed sample with a high degree of accuracy and speed. Sorted cells can be further<br />
examined microscopically, re-stained for additional analysis, or put into tissue culture for research purposes.