Need a little moral support

[Guest guest]

Happy New Year and good health to all. No more C-diff; no more kidney

stones; no more bad medication side effects!

I wonder if any of you can suggest something for me when I go see the

hemonc on Jan 9 and have the next scheduled PCR. I was bumped up to

600 mg Gleevec at the end of September, and am not liking it one bit.

The side effects that I was tolerating reasonably well on 400 mg are

all increased enough to make me moderately (but not severely)

miserable. Enough to make me cut back on what I do and how long I can

concentrate on my research (shortness of breath, some nausea almost

every day, eyes are puffier, more eye bleeds, more aches and muscle

cramps,....)

Here's the history:

-Dx April 2008

-hydroxyurea and allopurinol for just long enough to bring those WBC

down into reasonable territory

-400 mg Gleevec starting in May 2008

-Blood counts all (boringly) normal since at least July

-PCR test in early September showed at 3-log reduction (Hooray!), but

not PCRU

-BMB in October " looked good " (I haven't actually seen the report yet).

-CBC in November showed no anemia; echocardiogram in December shows

normal heart function.

But my hemonc is on an aggressive schedule here, and because I wasn't

PCRU in September, he upped the dosage to 600 mg based on the

September PCR, even before the BMB.

I've done some literature searching, and I thought I was making good

progress, and wouldn't have been concerned unless there wasn't

continued good progress by the time of the 12-month check. I did find

a paper in the Blood journal about an Australian study that showed

better prospects with larger doses of Gleevec, but I didn't think that

the difference was statistically significant.

I plan to ask for the dosage to be scaled back to the 400 mg that I

know I can handle. Is this a reasonable request? Is my understanding

about reasonable progress OK?

Thank you all for all your encouragement!

Martha B