RE: Barb as the Tasigna Poster Child

March 17, 2008

hi Barbara

it is interesting that my mother was also diagnosed with cll 1 year ago. i was

diagnosed with cml 8 years ago

best regards

giora

[ ] Barb as the Tasigna Poster Child

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!

March 18, 2008

Giora

Hi and good to see your post. I will tell you, I have my own theory

about this. I was raised in Iowa and my home town is full of cancers of

all kinds. It was a farming community that used pesticides and

herbicides in the local crops, and the rain runoff always went into the

same river we got our water from. Union Carbide had a plant right on the

river as well. All the carbon and all the farming chemicals are full of

benzene. I have no doubt that she and I were affected by that in some

small ( or big) way. There is testing going on in the Missouri river at

the four corners Missouri, Nebraska, Iowa and Kansas to test the water.

I will be interested to hear about the results.

I am sorry to hear about your mom. What is her treatment protocol?

Be well,

Barb

>

> hi Barbara

> it is interesting that my mother was also diagnosed with cll 1 year

ago. i was diagnosed with cml 8 years ago

> best regards

> giora

> [ ] Barb as the Tasigna Poster Child

>

> 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!

>

March 18, 2008

Barb very interesting,. I lived on the Great South Bay on Long Island, where

they sprayed every year for mosquitos. My niece used to hitch a ride on her

bike, at the back of the truck and not knowing it well may have been the cause

of her death years later, along with many other people in the area. We never

closed the windows, or stayed inside, and this would be back in the 50's, have

no idea what they used then to kill mosquitos, but I am sure they no longer use

it. What we don't know will kill us...Bobby

Barb Stanley <barbarastanley@...> wrote: