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

[Guest guest]

Wow! I almost thought i was reading about myself ! Too

similar even down to the age and 3 kids . I was dx'd June 20/05-not

long after you. Many of the same issues on Gleevec, so I switched to

Sprycel-again same thing. Now I am on Interferon and doing

wonderfully! Unfortunately everyone reacts differently to these

drugs and you may or may not have the same reaction if you switch to

Sprycel, or something else. In the end you need to decide if you

want your QOL to change-hopefully for the better and try something

else-you will never know unless you try- certainly am glad I did, but

again this is a personal decision, and one that should be made along

with your Dr. All the best-if you have anymore questions feel free

to ask!

ne

>

> 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

>

>

>