English - International Waldenstrom's Macroglobulinemia Foundation

From IWMF-Talk, cont. from page 17
Bob Reeber said that he doesn’t have knee pain or at least not
more than the occasional ache. He does, though, have weaker
knees, which he’d noticed when the weather became colder.
When working outside he uses kneepads to help protect the
knees. Whether his weaker knees come from WM or statinrelated
cholesterol treatment is hard to say. “I do know,”
says Bob, “that since I have gone on Niaspan, red yeast rice
and green tea extract, my knees have been better. Part of it
probably is owed to reduced muscle strength with age: “If
you don’t use it you lose it.”
Gerry Wergland said she does not have knee pain yet but
has experienced severe back pain (not WM related). Gerry’s
PCP prescribed a Lidoderm Lidocaine patch 5% and that
worked immediately to ease the pain, where Tylenol and
Advil did not. The patch was 10cm x 14cm and may come
in other sizes. They can be easily cut with scissors. The only
downside is that they can be left on no longer than 12 hours
in a 24-hour period.
Sandra Adamson added that she is experiencing knee ache
for the first time. Sandra said that she has been receiving IVIg
infusions for the past five months and notices that following
an infusion her knees feel much better.
PORT-A-CATH
Steve Baylus asked if anyone would share experiences with
a Port-a-Cath. His oncologist had suggested it as a possibility
after having enduring arm pain following two Treanda
infusions. Dr. Tom Hoffmann replied that the advice to get
a Port-a-Cath must be tempered with the reason for the arm
pain and the planned number of infusions left to go. Steve
clarified that he believes his arm pain was from the Treanda
infusions, which were painful even during the infusion. Steve
was at that point scheduled for four more monthly infusions.
Sarah offered that she had a port-a-cath for about a month
to six weeks when she first began treatment. It was used for
plasmapheresis prior to CRP (Cytoxan/Rituxan/prednisone).
Sarah did not like the cath: she was aware of its presence
in her body, it was physically uncomfortable, and she was
unable to swim which along with yoga is how she manages.
She noticed that the veins in her hands suffered from the IV.
Sarah advises that if one’s treatments are painful or harmful
to the veins and are scheduled to be long term, the cath might
be a good choice, if one’s doctor concurs.
Bob Kallish cautioned that not every ache and pain can be
blamed on WM. Bob said we get older and wiser but crankier.
SUPPORT GROUP NEWS
e d i t e d by Penni Wisner
Please note: contact information for all support groups is printed on pages 21-22.
IWMF CHAPTERS – USA
ARIZONA
In March, approximately 50 people attended a session on WM at the Lymphoma Research Foundation (LRF) Regional
Workshop in Scottsdale, AZ. Dr. Joseph Mikhael of the Mayo Clinic gave a two-part presentation and answered many
questions. IWMF partnered with the LRF to coordinate this special session
and attendees were treated to a delicious breakfast and lunch.
CALIFORNIA
Orange County
“Real Life WM experiences” will be the theme of the Saturday 24 April 2010
meeting from 2 to 5 pm held at the Hoag Cancer Center conference room.
This will be an opportunity for each attendee to share his/her experience
with WM, provide support to others, and hopefully learn something of
benefit from the exchange. In addition, members who attended this year’s
IWMF Ed Forum, April 9-11, in Las Vegas, will share their “best of ”
recollections.
Sacramento and Bay Area
After ten and eight years, respectively, Penni Wisner and Cynthia
Nicholson are stepping down from their facilitation of the Northern
From left to right: Dr. Joseph Mikhael of the Mayo
Clinic and IWMF member John Dethloff with Ed Nadel,
AZ support group leader.
Support Group News, cont. on page 19
18 IWMF TORCH Volume 11.2