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

[Guest guest]

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

[Guest guest]

Hey:

How long have you been on Gleevec? The side effects seem to lessen with time.

It took almost a year for me to adjust on Gleevec. I have been switched to

Sprycel because I became Gleevec resistant. The side effects are markedly less

with the sprycel but I am going south with my blood counts. When my blood goes

bad I get the fatigued badly. I also work full time and raise teenagers. When

I was on Gleevec I ended up getting transfusions and that seemed to pull me out

of this. I am not sure what they will do to correct it with the sprycel. I

need to keep working right now, I am the only income in the family and the bills

need paid. Good luck with this.

T Stone

vegasrnjen@... wrote: 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

[Guest guest]

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

>

>

[Guest guest]

Been on Gleevec since May of 2005. Counts seem to be holding steady.

I can tolerate the side effects. I thing the trouble is that I feel good

for a week or two, so I think the worst is over and then wham, reality sets

back in and I am down for a day or two so its a constant roller coaster ride.

It makes it very emotional and hard to manage a life not knowing how you are

going to feel from one day to another.

I am grateful to have the days to wake up no matter how I feel, so I have

learned that I have to take the good days with the bad and appreciate the life

that I have. Hopefully things will settle down eventually and these little

" gold " pills will continue to work for as long as possible.

Jen