Re: To Debbie Seger Sharon S

[Guest guest]

Sharon- And really others who are on Gleevec.

I just wanted to say that even though I did very well on Gleevec (PCRU and

more then a 3 log reduction) my side effects never lessened. (2 years on

Gleevec) I had every side effect you mentioned and more including severe GI

effects that would leave me chronically getting IV's for dehydration. I also

lost

all my pigmentation in my hair and skin. My once strawberry blonde hair is

now platinum blonde (almost white).

I didn't want to switch to spyrcel because I was doing so well (medically

with CML) although the side effects where horrendous. I was worried that my

response with the next drug (spyrcel) maybe wouldn't work as well as the

Gleevec. I was wrong however, the spyrcel has worked every bit as well as

Gleevec

as I have been PCRU with maintaining my log reduction and with that I have

much, much less intense side effects. Don't get me wrong, I still have the

side effects but much less degree then when on Gleevec. My main issues are

bone/muscle pains (more good days then bad), nausea (less intense then Gleevec)

and fatigue. I would say the fatigue/SOB is as bad as the Gleevec was. The

diarrhea is almost a non-issue on Spyrcel. My counts have been better on

Sprycel as far as the cbc's go. (more normalized CBC)

Just something to think about as you more forward in your CML life. The

next generation drugs at least Sprycel, (to me) seem to be as potent but with

less side effects maybe for some people then Gleevec.

Whatever drug you choose, hopefully they will continue to get the job done

in there fighting the CML.

Hugs & Hope

36

Wife and mom to 3 (13,10,8)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since 9/07

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[Guest guest]

,

Thanks for the reply.See text below for my comments..

In , vegasrnjen@... wrote:

>

> Sharon- And really others who are on Gleevec.

>

> I just wanted to say that even though I did very well on Gleevec

(PCRU and

> more then a 3 log reduction) my side effects never lessened. (2

years on

> Gleevec) I had every side effect you mentioned and more including

severe GI

> effects that would leave me chronically getting IV's for

dehydration. I also lost

> all my pigmentation in my hair and skin. My once strawberry

blonde hair is

> now platinum blonde (almost white).

====================

I have GI issues as well and just assumed they were due to my gastric

byppass surgery..HUm...My hair color is changing as well,I am blonde

but have some areas now that are whitish and even gray that is new

and not normal for me(age 40).Never gray before or white patches.My

skin color is very pale but contributed that to being anemic and

needing infusions..Hum..

> I didn't want to switch to spyrcel because I was doing so well

(medically

> with CML) although the side effects where horrendous. I was

worried that my

> response with the next drug (spyrcel) maybe wouldn't work as well

as the

> Gleevec. I was wrong however, the spyrcel has worked every bit as

well as Gleevec

> as I have been PCRU with maintaining my log reduction and with

that I have

> much, much less intense side effects. Don't get me wrong, I still

have the

> side effects but much less degree then when on Gleevec. My main

issues are

> bone/muscle pains (more good days then bad), nausea (less intense

then Gleevec)

> and fatigue. I would say the fatigue/SOB is as bad as the Gleevec

was. The

> diarrhea is almost a non-issue on Spyrcel. My counts have been

better on

> Sprycel as far as the cbc's go. (more normalized C

==================================

I have diahrea on occasion with no rhyme or reason to it as I

normally suffer with constipation from IBS w/constipation and

Diverticulosis (treated w/meds)

I also have extreme bone/joint,muscle pain and nausea w/eye pain

and headaches(never get headaches.

My Dr. has not even mentioned any other form of treatment other than

gleevec.I know it exsists because of this group.My last Dr. told me

gleevec was the ONLY drug to treat and I better prey it worked.I

switched Dr.s.I will ask my Dr.

>

> Just something to think about as you more forward in your CML

life. The

> next generation drugs at least Sprycel, (to me) seem to be as

potent but with

> less side effects maybe for some people then Gleevec.

> Whatever drug you choose, hopefully they will continue to get the

job done

> in there fighting the CML.

>

> Hugs & Hope

> 36

> Wife and mom to 3 (13,10,8)

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since 9/07

====================

I will definately talk to my Dr about other options at my next

visit.Thanks for sharing.

SharonS

#1226

> **************You're invited to Hollywood's biggest party: Get

s

> updates, red carpet pics and more at Moviefone.

> (http://movies.aol.com/oscars-academy-awards?

ncid=emlcntusmovi00000001)

>

>

>