Weight/fluid

[Guest guest]

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