Re: Weight/fluid

May 16, 2008

Patti and Jen:

i have not posted in awhile. i was on gleevec until july 07 when i took myself

off of it. i am on sprycel 70mg twice a day since and have developed pain in my

left lung area and tingling and numbness in my feet and hands. my left lung was

drained and i was given a nerve block of my left quad. my doctor states that

patients with leukemia develop nodules on their nerve endings. mine were

aggravate by the swelling in the lung and trying to breath. they put me on

neurotin 300mg 3x a day for the numbness i was developing. i do believe that

all of this has to do with the swelling in my body. i don't have the pitting

but just the heaviness. it hard to explain to doctor because they look at you

like you a crazy. cml patients are not the majority we are the minority in who

these doctors see. we are setting a new standards for care. hang in there and

if it gets worse, especially in the lungs get help.

ann grimm

dxd 10-02

[ ] Weight/fluid

Jen,

Wow, reading your post was like looking in a mirror. I too am on Sprycel and

am ecstatic with the response. I am in a complete molecular response and have

been PCRU since October. The only complaints are major fatigue, weight gain and

SOB on exertion. I am also on 50 mg daily because I was having real problems

with SOB at 100 mg. At 70mg my SOB was better but my fatigue was horrible so I

am on 50 mg and doing pretty good. I have always had a weight problem and when I

was diagnosed I was actually doing Weight Watchers and had lost 20 pounds. As

the disease progressed I was losing weight pretty quickly and ended up down 50

pounds within 5 months of my CML diagnosis. My metabolism was really going wild

and the weight was just dropping off. Then when I got to PCRU the weight started

to creep back and has kept on until now I've gained the 50 pounds and am

starting to gain more. I was really beating myself up thinking it was because I

was not eating

properly and not exercising but when I really stopped to think about it I

wasn't really eating that much and with the extreme fatigue it has been hard to

continue working part-time and still have the energy to exercise. It helped

reading your post and seeing that others were experiencing the same problem and

that it is really connected with Sprycel. I also have the bloated middle and my

thighs are getting really heavy. That's not something I had noticed before I

lost the weight. I really wish I could go off the drugs but I know that isn't a

good idea. I do have a question though. I have read some other posts where

someone had said that if they stay in a complete response PCRU for two years

they can stop taking the meds. Is this true? Has there been any studies to

support this? I can only hope!!

Patti

May 16, 2008

Ann

I have the tingling in my hands too! I told the doc and he said we don't see

that in sprycel. I thought some really sarcastic comments but only replied...

Well I still have it.

I am on 100 mg a day and swelling can be bad but...... Since I havd gone vegan

and mostly raw veggie, nuts and seeds.... Its way way way better.

I don't drink soda tea or coffee but I do drink lots of lemon water with agave

or stevia. I add cilantro or mint and sometime even add cucumber and it tastes

like a mohito!!!

Raw vegan food can be good but it takes spices and some creativity to make it

fun. I also have sprouted grain breads, beans, and a big glass of green juice

at least once a day.

There are times for treats and cheats but trying to keep it rare. I have lost

50 lbs but still have 150 to go!!!!!

Good luck!

Sent from my Verizon Wireless BlackBerry

Re: [ ] Weight/fluid

Patti and Jen:

i have not posted in awhile. i was on gleevec until july 07 when i took myself

off of it. i am on sprycel 70mg twice a day since and have developed pain in my

left lung area and tingling and numbness in my feet and hands. my left lung was

drained and i was given a nerve block of my left quad. my doctor states that

patients with leukemia develop nodules on their nerve endings. mine were

aggravate by the swelling in the lung and trying to breath. they put me on

neurotin 300mg 3x a day for the numbness i was developing. i do believe that all

of this has to do with the swelling in my body. i don't have the pitting but

just the heaviness. it hard to explain to doctor because they look at you like

you a crazy. cml patients are not the majority we are the minority in who these

doctors see. we are setting a new standards for care. hang in there and if it

gets worse, especially in the lungs get help.

ann grimm

dxd 10-02

[ ] Weight/fluid

Jen,

Wow, reading your post was like looking in a mirror. I too am on Sprycel and am

ecstatic with the response. I am in a complete molecular response and have been

PCRU since October. The only complaints are major fatigue, weight gain and SOB

on exertion. I am also on 50 mg daily because I was having real problems with

SOB at 100 mg. At 70mg my SOB was better but my fatigue was horrible so I am on

50 mg and doing pretty good. I have always had a weight problem and when I was

diagnosed I was actually doing Weight Watchers and had lost 20 pounds. As the

disease progressed I was losing weight pretty quickly and ended up down 50