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Re: Re: Barb and Burning

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Hi Barb

I was very interested to hear about your 'hot spots', it sounds just

like what I suffered with whilst I was on glivec and dasatinib. I am

in the Uk and I couldn't find anyone else who had this. I used to

describe it a funny skin feeling, like a flash or flush, lasted

anywhere from minutes to hours at varying intervals on varying parts

of my body. Interestingly I also developed severe pain in my feet,

(improved with steroids) which was worse when I first got out of bed

and then got a bit better. I didn't link the 2 things but maybe they

are related.

My consultant hadn't heard of this side effect but maybe there are

more people with it. It is so hard to describe. I had other side

effects and I eventually went on to have a transplant, which so far

has been very easy. I hope that tasigna works well for you and that

you don't get this skin problem.

All the best

www.caringbridge.org/visit/susanleigh

skype ID: susan-leigh

On 17 Mar 2008, at 23:24, Barb Stanley wrote:

>

> Donna

>

> On gleevec I had 'hot spots' sort of. I would flush in the face and

> then

> it would subside. Then I would burn in the shoulders, then it would go

> away. The soles of my feet would do the same thing too. I don't

> know if

> this is what you are speaking of or not.

>

> Does this sound familiar?

> Barb

>

> > >

> > >

> > > 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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