Comments appreciated....

[Guest guest]

Hi gang-

I have a concern that I wanted to run by the group and get some opinions.

Little background on me.

Dx: CML 5/13/05. Gleevec 600 mg daily.

33 years old, married with 3 kids (10, 7, 5).

My concern: I want to know what the consensus of opinion is on reducing my

dose to 400mg. Now, I would never do this without consulting my Dr, Dr.

Mauro, but wanted to get opinions of others in this group, whom I respect. I

suffer from many side effects from fatigue, nausea, hair turning white, losing

the pigmentation in my face, neuropathy at night in my hands, fluid

retention around my eyes, diarrhea, gastritis, etc.... Moreover, I am greatly

concerned with the amount of toxicity in my body that the drug is doing to my

organs. I feel like I am young and have a long time to take this drug, I am

just

wondering what kind of damage this is doing to my insides. I do however,

realize that without this drug, I wouldn't be here for long and I feel blessed

to have it as an option. I don't not have a sibling match and I have a rare

HLA typing.

From what I understand from the doctor is that if you skip or reduce the

dose you have a risk of developing a resistance to the drug. I certainly don't

want to risk that nor have I missed any doses thus far. I am just wondering

if I would feel better on a lesser dose or if its too late to think about

that since I am already on the 600mg? I I am responding well to the Gleevec

and

believe I am in cytogenic remission. (under 35%). Last testing showed 1

out of 200 cells.

I am just curious as to what others think and your opinions are just that

and would be appreciated greatly. I realize we are all individuals and our

treatments and responses are different but I would like to just get your

impressions of my personal situation. I know I am asking a real self center

question here but I am really struggling and need a little input.

Well wishes to all of you!

Hugs-