's response....Re: G. sideeffects vs. change to sprycel

[Guest guest]

Hi ,

Have you ever tried Imodium for the gastric side effects of Gleevec?

There are other more potent drugs that work as well but you need a

prescription for them. I find Imodium works very well for me and

lasts for days so I only need to take it once or twice a week now.

Some people swear by exercise as a means to increase stamina although

I admit, when you're dead tired, it's very difficult to get up and

move.

Tracey

dx Jan 2002

>

> Hey all-

> I see Mom's response to my drugs and recent labs so I thought I

would pop on

> and answer.

>

> - My side effects have been everything from skin and

pigmentation

> changes (strawberry red hair now platinum blonde and freckles

fading) to massive

> diarrhea, gastritis, extreme fatigue, SOB, muscle and bone pain,

neuropathy,

> scalp tenderness, edema (pedal and peri-orbital), low endurance

just to name a

> few. The extreme fatigue and gastritis seem to be the biggest

players as

> they affect me daily in how I feel. I can deal with the cosmetic

changes.

>

> Working full time and raising 3 young children while trying to

maintain a

> relationship with a spouse, juggling medical bills and dealing with

cancer is

> something I guess I haven't really learned how to balance yet. We

are looking

> into me not working at all so that I can regain some quality of

life.

> Working causes me to be physically " done " with everything by 3 PM

therefore by the

> time I get home at 5-5:30 PM, I am not use to my hubby or kids.

>

> I was about to switch to the new drug when my labs came back the

cytogenics

> were negative and my PCR showed a 3 log reduction. So now I feel I

should

> stay on Gleevec as it seems to be working. There is no guarantee

that I

> wouldn't have the side effects on the next drug either. I am not

sure what the

> answers are, just trying to take it day by day and make the best

out of everyday

> that I have. I am thankful for all the drugs coming and hoping

that one day

> there is a vaccine that does the trick for all of us.

>

> I am always on here lurking and reading so I appreciate all of the

CMLers

> that offer there input. They are the ones walking in the shoes as

we are and I

> feel they are a wealth of knowledge. Its nice to know that there

are others

> out there going through the same things.

>

> Stay healthy-

>

> CML 5/13/05

> 34. wife and mother of 3

> Las Vegas, NV

>

>

>