Fall 2007 - International Waldenstrom's Macroglobulinemia ...

FROM IWMF-TALK
by Mitch Orfuss
Over the summer months the IWMF-Talk participants aired
their views on many topics concerning treatment options
and coping with the side effects of WM. Some of the livelier
discussions are revisited below.
Is there a “magic” PN drug?–Dianne Perry writes that
Mayo Clinic’s web site recommends B-12 for PN. Guy
Sherwood talked about four candidates for treating PN:
L-glutamine (if taken before chemo); B-6 (with caution not
to exceed 50 mg/day); lysine; and what Guy called the clear
winner for him–morphine after Velcade a few years ago.
Ann Tygart wrote about B-12: not just for PN but perhaps
for memory problems as well, especially when taken in
combo with other B vitamins. However, Liane Cochran-
Stafira raised the possibility that B-6 actually makes PN
worse. And Patti takes the supplements acetyl l-carnitine
and alpha lipoic acid in search of better skin, only to learn
that they are both good for PN.
Shingles–Since WM patients are susceptible to Herpes
zoster, commonly known as shingles, there is frequent
discussion on IWMF Talk about this extremely unpleasant
condition. Rob Selden wrote that though shingles is
contagious only through direct contact with open lesions,
such contact does not result in shingles—it causes chicken
pox and does so only if the receiver never had chicken
pox previously. Minnie Hattori sent several short notes
to shingles newcomers describing the symptoms of this
numbing, tingling, burning, itching, eruptive, blistering and
in all ways relentless illness. Fay Langer emphasized that
while shingles did not cause her pain, it did cause constant
itching severe enough to keep her up at night. June Canter
had another take on how sly shingles can be. When June
came down with shingles during Rituxan treatment there
was no rash at all—so no one immediately recognized
her symptoms as a case of shingles. The result was that it
became too late to make use of an antiviral, leaving June to
three months of pain meds to help her get to sleep. Laure
Van Kerkhove told a story of having shingles along with
spinal encephalitis at age nine, causing pains in her side
that she remembers nightmarishly almost four decades later.
Sybil Whitman recounted having suffered from shingles
four times, occurring both before and after her autologous
SCT last year. After five rounds of chemo Gerri McDonald
attempted to wean herself down to a half dose of the antiviral
Famvir and, sure enough, it was weak enough to allow for
a shingles outbreak. Once the outbreak had passed Gerri
went back to the dose of Famvir which had originally been
prescribed for prevention of shingles. There was also
discussion on how long to keep taking a preventive antiviral
after treatment, and our participants reported a range of
directives from their physicians.
Velcade, Leukeran, Campath–Ellen writes that though
she experienced unpleasant side-effects from Velcade with
cortisone–head and neck ache, sleeplessness, shortness of
breath, and edema in the legs–her blood work did improve,
with hemoglobin and WBC back to normal and a 50%-
reduced monoclonal spike. Ron (The Hermit) Romeis,
for a variety of reasons, elected a 13-month course of daily
Leukeran (chlorambucil) in pill form starting in 2004, with
very satisfactory results—but Ron mused on how difficult
it is to know when sufficient treatment crosses over to too
much. Frank Citrone, Jr., enjoyed a partial remission
from Campath (with hydrocortisone) prior to a SCT. Guy
Sherwood wrote that he had a result similar to Frank’s
except that he had Velcade after Campath at Dana-Farber
before his successful auto transplant. Mike writes that he
was diagnosed at 32 and had Campath as a first treatment
with mixed results: a seven-month partial remission but a
knocked-back immune system.
About Rituxan–After Peter DeNardis referenced an article
about fast-infusion of Rituxan, many replies and comments
were received on IWMF Talk. Corinne wrote that she is
given her Rituxan infusions very slowly. During treatment
she tends to get an itchy head and a puffy, red face, and she
has trouble breathing with a heavy feeling in her chest—plus
“restless leg” from the Benadryl. She actually starts taking
prednisone, Benadryl and Zantac the day before treatment.
Her infusion crew adds Atavan to the IV cocktail along with
the Benadryl, and Corinne sleeps for the entire 12 hours.
Maria writes that she didn’t have side effects after the
treatment—just during. Her blood pressure would drop to
a dangerous level. She could not sit still–it felt like “being
plugged in to a wall socket.” So Maria went to the hospital,
the staff infused her over a 24 hour period, and the problems
evaporated.
From IWMF-Talk, cont on page 14
PAGE 11
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