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Hi Tonya / Meghann,
I just turned 33, and was diagnosed 1 month ago, so
I am right in there with you. Here is how I am dealing with it now.
After meeting with the BMT specialist two weeks
ago, I have decided to take his advice and stop trying to make up my mind
immediately on the "right" thing to do as it is too early. He recomended me the
following:
1. He wanted a confirmation that I was
definetly in the chronic phase and not in the accelerated phase, or moving along
an accelerated phase. Thus, wait for the results of the BMB.
2. Have all your sibblings tested for a
match.
3. Start taking Gleevec to see if it works for
you.
Although I am being followed weekly by my onc, I
will meet with the BMT specialist again in 2-3 months. By then we will see
"which doors are open and which doors are closed". Based on all the
results, for example, if I am in chronic phase, with no sibbling match and
doing well on Gleevec, he did NOT recommend the BMT. However, if I am in an
accelerated phase with or without a sibbling match although doing well on
Gleevec he recommended a BMT. His recommendation varied depending on the results
of the three elements above.
So, ultimately what I am saying is that rather than
getting myself all worked up about what to do, I concluded that there
might not be any decision to make and I am just waisting good energy, and
if there is a decision well, I'll cross that bridge when it comes. Particularly
in this case, time does answer lots of questions...
Let us know, how it turns out!
Jos.
Dx Aug.12/04
----- Original Message -----
Sent: Friday, September 10, 2004 4:44
PM
Subject: [CML] Gleevec vs
Transplant
Hello Group!
I have been
on Gleevec now for about 2 years and am doing great! I
am in
molecular remission and other than a little fatigue and stomach
ailments
things are really good. My doctor is Dr. Brian Druker and I
am very
much an advocate of Gleevec even though I have a perfect
match (my sister)
for a bone marrow transplant.
I just met a guy who is my age (32) and
he was just diagnosed a week
ago with CML. He is having his sister
tested as a match but he is
still doing his research on what to do.
Of course I am 100% behind
him trying Gleevec and telling him just how
great it is, but I know
that it is his decision. He is a triathlete
and also a cyclist and
also is a personal trainer. His thought
process is that if he does
the bone marrow transplant that it would be the
only way to "have it
over and done with" and get back to his life of being
an athlete.
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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