Slow Responder

[Guest guest]

My heme/Onc has told me I am a " slow responder " to Gleevec, but not

to worry--it is working. I am wondering if I need to be on a higher

dose or what? I don't like the slowness of the response--it worries

me that somehow I am resistant to the good effects of the drug.

I was diagnosed 10/04/06 and have been taking 400 mg of Gleevec since

that date. My counts are gradually drifting downward, sometimes

upward, then back down again--and I am still not at normal wbc counts

(that is mainly what I watch). Does anybody else have experience

like this? Should I ask to be on a higher dose? My doc says that

even if it takes 4 years to get to normal counts--people who take

that long do just as well long-term as people who respond quickly. I

have not read enough to know if that is true, and thought I'd ask

around this group to see if anybody knows if that is the case?

I don't want to develop a resistance to the Gleevec, and if taking it

at higher doses would make it work better and faster, and if over the

long run that is a good thing, then I want to do that. Also, what

about clinical trials? I am seeing a doctor in a smaller suburban

heme-onc practice. Should I go for the big downtown practice which

has the clinical trials or stay where I am care-wise? It is very

much a dilemma for me since I love my doctor and she seems quite

knowledgeable, although she admitted to me that she only had 5 CML

patients, and I am one of the 5.

Thanks for your input. It really helps to hear somebody's opinion

who has been through similar things. I am battling lots of side

effects and depression, and members of the group have helped me

tremendously in terms of seeing that this disease is more manageable

than I had dreamed, and truly not an " end of life " kind of

situation. How magnificent a gift that was and is every single day!

Thank you so much to all.

Vicki