Re: Tasigna LYNN READ!!!! anyone who has alot of Gleevec side effects

November 8, 2007

Hi all-

Just wanted to add my 2 cents to this communication as I haven't been on for

a while.

As many of you know, I had horrendous side effects with Gleevec (800 mg) but

had really good results. I stuck it out with numerous hospitalizations to

the point of IV's at home 2x weekly. I had every side effects imaginable

including losing my pigmentation in my skin as well as strawberry hair turned

platinum blonde. I was walking around trying to breath with no energy to do

simple things, like shower and retaining so much fluid. I had effusions and

didn't know it. I had to file disability and was approved quickly. All this at

34 years old. I really wanted to stay on Gleevec as it was giving me great

results and a great remission status.

However, I have switched to Spyrcel (100 mg daily). WHAT a difference!!!!

I still have side effects such as fatigue and foggy memory, mild nausea and

diarrhea (every now and then) but nothing is as bad as it was on Gleevec.

All this being said, I no longer feel like I am just " existing " I feel like I

am Living again! I also dropped 16 pounds within 2 weeks which was ALL fluid.

What I am trying to babble along and say is if you aren't handling Gleevec,

give Spyrcel a try. I was completely against changing but I am SO thankful

that I did. I was so worried about all the effusions that everyone was

talking about with Spyrcel. I haven't had any as well as a matter of fact, I

don't

have the fluid retention that I had with Gleevec and 3 months later, I am

still 16 pounds lighter then I was when I was on Gleevec. No more of all that

fluid and trying to breath with so much fatigue.

If you aren't tolerating Gleevec, switch drugs and see how you do! What do

you have to lose? Give it 90 days and see how you feel. It has giving me my

life back. I cant tell you how much I enjoy things now.

The good things about this disease is that we have choices now with these

drugs. I thought Gleevec was all I needed, but I am SO thankful that Spyrcel

has come along. Don't suffer, Live!

my 2 cents!

hugs and hope

CML 5/13/05

Spyrcel 100 mg daily

Wife and mother of 3 (12,8,6)

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