5 replies to this topic

[alexamay09]

Hi everyone, I've been on sprycel since February. I find the side effects cycle but wondered if anyone has experienced the same side effects. I have a feeling of fullness/bloating in the abdomen

and get out of breath quite easily on exertion.  I have had gastric issues from time to time, and fatigue which I expect, but also get a lot of pains which I think are 'nerve' pains in my shoulder and down my arms into the fingers. They come and go and are like toothache. I also get other pains around my ribs. I had nausea the last few weeks too, though it has passed now.

I have been anxious as it is nearly six weeks since my last bmb (1 year) and no results yet! Thanks.

Alex

[Trey]

It sounds like you have abdominal edema (water build-up).  It is like pleural (lung) edema except around the diaphragm area, which would push on the stomach and other organs, and maybe the lower lung area and ribs.

[alexamay09]

Thanks Trey. I am seeing my doc on Friday and will ask.

Alex

[mdszj]

Alexamay9

That sounds like what I have, fluid in the abdom area.  I have been on 100 mg S for about 1 year.  I seem to get full very quickly when I eat, definitely quicker (after less food) than I used to pre-sprycel/pre-cml.  But the crazy thing is that I am always still hungry despite being full.  All I could figure is that excess water was squeezing on my stomach so I could not fit as much food in, and my brain never gives me the signal that I have eaten enough.  This is all my own doctoring - not sure if this is actually the case or not.  I also often have a bit of numbness in my fingers when I wake up, not sure if that is from the S though.

One thing I have found, at least in my case, Sprycel seems to have a revolving set of side effects that come and go.

Good luck, hopefully it will work well for you!!

Mike

[Elizablest]

I've been taking Sprycel for two years. Had a lot of nausea in that first year. So much so, that I lost a quarter of my weight. Okay by me because I was overweight to begin with. Don't get the nerve pain, except rarely, and there is a question as to it being nerve damage due to spine issues related to arthritis. Bumpy sandpaper rash on face which never goes away entirely. Pounding pulse in head most of the time. Recently diagnosed with urinary bladder stones which probably aren't due to Sprycel or CML. However, they weren't there two years ago! So... who knows?

[CallMeLucky]

I have very similar side effects.  I notice the abdominal issues most when laying down in bed.  I was concerned it was pulmonary but I have been checked over and over and there does not appear to be an issue.  I also dodn't feel like I can't breathe in my lungs, I just feel like I have pressure in the chest cavity.  All along my Dr's have been leaning towards a GI cause.  A few months back I discovered that Sprycel has lactose in it.  There is actually a warning for people who are allergic to milk.  I am allergic to milk, have been my whole life.  I knew if I drank milk I would get sick, but I could cheat with things like cheese and not have much of a problem.  Ever since I started Sprycel I have had the abdominal issues (note I am not talking about Gi issues related to lactose intolerance).  This is not about having to go to the bathroom all the time.  Anyway, I have cut dairy pretty much completely from my diet and my symptoms have lessened quite a bit.