I
don't know if I qualify as a "serious" athlete, but I can tell you that I'm now
training for my fourth half-marathon. I was a runner when I was diagnosed
with CML more than four and a half years ago, before Gleevec was available. I
was prepared to have a transplant but unfortunately don't have a donor who's
even a close match, so that is not an option for me.
Not
eveyone has a "great" quality of life with Gleevec. Through my Web site, I get
scores of emails every single week from people who are having trouble coping
with the side effects of Gleevec. I myself have nausea, diarrhea and edema
frequently. Something has happened to my eyesight. My voice has grown hoarse. I
get rashes occassionally, but nothing too bad.I've gained weight that I
absolutely cannot lose. I've developed compartment syndrome that I think is
connected to the edema Gleevec causes (no proof, mind you). I have cognitive
problems. Worst of all is probably the lack of energy and always feeling
wiped out. It's extremely draining. I've been taking Gleevec for three and
a half years and have only felt truly better when I have taken long breaks of
three weeks or more (unfortunately, I relapsed doing that). I don't think that's
a great quality of life at all.
If I
had the option of having a transplant, I'd do it, even now.
Your
post is going to generate debate that is not going to resolve anything. Debate
is good, but as you noted, this is a highly individual decision. You'll find
people who've done great with transplant and those who haven't, and those who
have died. Others have died because Gleevec doesn't always
work.
The
prospect of having to keep taking Gleevec for many more years is very
discouraging!
jennifer
g.
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-----Original Message-----<snip>
From: tdhollosy [mailto:[EMAIL PROTECTED]
Sent: Friday, September 10, 2004 2:45 PM
To: [EMAIL PROTECTED]
Subject: [CML] Gleevec vs Transplant
I am no expert on bone marrow transplants and I just wanted to get a
few of your opinions on what you would give him advice to do. I can
understand that a transplant is the only actual cure, but Gleevec is
a great way to keep someone in remission possibly for the rest of
their life and also have a great quality of life.
Is there anyone out there who is a serious athlete (or anyone else)
that has some advice as to what you think he should do?
Thanks for your help!
Tonya
Diagnosed with CML November of 2000
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