Re: Barb and Burning

[Guest guest]

Hi there I was interested to read this statement in Barb's post good

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

The last 2 day I have felt like I was burning in various parts of my

body. I was gonna ask if anyone had felt this or if its a sign of

something bad??

Regards

Donna

--- In , " Barb Stanley " <barbarastanley@...>

wrote:

>

>

> 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!

>

[Guest guest]

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!

> >

>

[Guest guest]

Barb

Yes this sounds like it although mine is under the bust and down the

tops of my arms but then occasionally in my thighs???? What a carry

on???

Regards,

Donna

> > >

> > >

> > > 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!

> > >

> >

>