Barb as the Tasigna Poster Child

March 17, 2008

Hello All

Been a while since I have been here. Lots has happened too. Let me bring

you all up to date.

I was diagnosed 5/5/02 after losing my mom to CLL in Nov. of 01. I

reached PCRU 5 years ago TODAY and have remained there since. I took 400

mg gleevec and had initial side effects that were hard but they

subsided. Then about two years ago, they began to gear up and I had so

man of them, wood legs, joint pain and crippling cramps, that I thought

I was going to quit work. I took a gleevec break for 10 weeks, ( in

consult with Drucker and my oncologist). I went back on at 300 mg a day

and the side effects returned. I finally switched drugs to Tasigna on

Dec. 26 of last year. I began at 800 mg and for two weeks, begged for

gleevec again. I had pain, complete body rash, and thought I was going

to go crazy. Then we broke for 5 days. In that short time, all side

effects went away. I began again on Jan. 28 at 400 mg. The side effects

there but mild. I seem to be doing well. The PCRU continues - thanks be

to my God. I have more energy than ever before. My rash is gone. I have

good SKIN - - know how Gleevec makes it tear easily and you burn so bad?

I am working on a tan now!! I do have some water retention and some

joint pain but NOTHING like before. I am a pretty happy camper on this

stuff. So the oncologist says go it this way until August and see if I

do well, then maybe, just maybe we will up it to 800 again. I think I

will try to talk him out of it though.

I am well, happy and about to take a group of 18 from the school I teach

at to Tijuana Mexico for mission work next week on spring break. It

should be fun.

Hope all are well and I give you all my best.

Barb in AZ

PS: HI SUSAN!! GOOD TO HEAR FROM YOU!

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