Daniel. Your in remission don't change drugs because if you ever need to
really change you c an"t go back to gleevec. I to am tired all the time but
since I'am retired I can nap when I want to or need it. Think long and hard
befor you make up your mind JUDY dx98
--- On Thu, 10/30/08, daniel <[EMAIL PROTECTED]> wrote:
From: daniel <[EMAIL PROTECTED]>
Subject: [CMLHope] debilitating fatigue, but good therapeutic response, with
gleevec
To: "CMLHope" <CMLHope@googlegroups.com>
Date: Thursday, October 30, 2008, 5:47 PM
hi all,
i have a dilemma with my treatment that i have been mulling over
awhile and would like your thoughts. i've now been on gleevec 400mg/
daily since being diagnosed in sept 2007 and am in complete
cytogenetic remission as of my 1 year followup last month (this was
confirmed in both peripheral and marrow fish and marrow karyotype). my
pcr results are decent/good, almost at 3log decrease and still
declining at a fast rate. so, it would be fair to say that the drug is
moderately-to-very efficacious in my case. the problem is that i have
experienced debilitating fatigue since very early in gleevec
treatment. it doesn't seem to due to low hemoglobin (~13.5 +/- .3) and
there are no detectable cellular/biochemical abnormalities in my blood
work-up. but i feel terrible--i require 9+ hours of sleep nightly and
fade dramatically after just a couple of hours of being active. i'm 31
years old and this was never an issue before i started taking gleevec.
i also look notably more wan, especially after a bit of activity. i am
currently doing post-doctoral work and can work mainly from home, but
would eventually like to work a real job, and it is difficult for me
to see how this will be possible in my current circumstance. overall,
i would rate my quality of life pretty poor.
as i see it i have a few options:
1) suck it up, stay on gleevec 400 mg/daily, and try to work around my
side-effects as best i can
2) try a 2nd generation TK inhibitor
3) wait until i hit 3log reduction and reduce gleevec dosage to 300mg/
daily
any thoughts? another complicating issue is getting insurance ok for a
2nd generation inhibitor if i choose to go that route. my doctor has
subtly implied that he doesn't feel that my side-effects warrant a
change of drug. i realize that the insurance decision will be based
largely on doctor assessment, so i didn't push as i don't want such a
discussion recorded in his notes. am thinking about switching to more
sympathetic doctor.
any thoughts would be appreciated.
best,
daniel
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