Re: Ongoing Edema/Swelling with Gleevec for

[Guest guest]

Hi ,

Thanks for the hints on what is working well for you. I have always

taken the full dose with dinner, but I think I " m going to switch it

up a bit and split the dose during the day and see how it goes.

Yes, the water aerobics sound great. I'm going to look into it at

our local high school during the summer. Anything for relief.

Thanks again for your great advice. I sincerely appreciate your help

with this.

Lynn from WA

> > >

> > > Hi Lynn. You describe exact same problem I have. I was dxd in

1/03

> > and I kept putting weight. To fight the weight gain, I end up

eating

> > one meal 500 cal a day, still couldn't loose. Water pills lower

my

> > blood pressure to a critical condition, which I had to stop

taking my

> > water pills. At one time I read that Novartis are doing some

research

> > to find out if Gleevec is slowing our metabolism and this may be

the

> > case. Some other CML patient has lost weight on Gleevec. It may

be

> > our genetic which play a role with fat Gleevec. But I guess to

stay

> > alive has a price. I am trying to exercise for my heart to stay

> > healthy if I am not tired. I am not sure if we can take any

additives

> > without side effect such as diarrhea. I wish I had an answer.

> > >

> > > T

> > > Dxd 1/03

> > > Zero club #764

> > > -------------- Original message --------------

> > > From: snickersunny <no_reply >

> > > Hello fellow CML'ers,

> > >

> > > Has anyone had experience with major swelling/edema and huge

weight

> > > gain while on Gleevec? I was dx'd 12/03 and this problem just

keeps

> > > getting worst and worst.

> > >

> > > I have ruled out any possible secondary problems, and all of

the

> > tests

> > > have come back normal. Thyroid, heart, kidney, diabetes, eating

low

> > > sodium, low fat, etc. My body has just ballooned and I'm

extremely

> > > frustrated.

> > >

> > > I am PCRU and on 400 mg Gleevec. I also take 80 mg Lasix along

with

> > > Potassium, but I am not getting relief. I may go alot, when the

> > lasix

> > > kicks in, but it doesn't make a visual difference... and when I

go

> > to

> > > bed and I get up the next day, I'm all swelled up again, and

the

> > > process continues.

> > >

> > > When I was dx'd, I had a huge spleen and very high white count

and

> > I

> > > wonder if I really screwed up my body and it's ability to

release

> > > fluids. I hardly urinate if I don't use diuretics. Could I have

> > > Lymphedema caused by Gleevec?

> > >

> > > I know my Hem/Onc is frustrated by it as well, but with Sprycel

> > causing

> > > more edema issues, and Plural Effusions, I would definately NOT

be

> > a

> > > good candidate.

> > >

> > > Does anyone know if the AMN107 causes edema? I get a great

response

> > > from Gleevec, but this problem is really getting difficult to

live

> > with

> > > and be happy.

> > >

> > > Does anyone do Accupuncture? Body wraps, and/or lymphatic

massage?

> > > These are some things I'm thinking about. Are there any safe

herbal

> > > additives that can be taken with Gleevec?

> > >

> > > If there is anyone with CML that is experiencing this same

problem

> > or

> > > has any suggestions, please feel free to share. I would

sincerely

> > > appreciate any input.

> > >

> > > Sincerely,

> > >

> > > Lynn from WA

> > >

> > >

> > >

> > >

> > >