10 replies to this topic

[Risen]

It's been 7 days for me of taking Gleevec. And other than a slight headache, I haven't really noticed anything in the way of them.

 

Am I just lucky, or am I going to get hit with them later on down the road?

[Billie Murawski]

Hi Risen,

 You crack me up, I did the same thing I sat around waiting for some weird side effects and nothing happened. My eyes got puffy and eventually I got a lot of gi problems but like I told you I had gi problems before cml. You're young so I think you'll handle the s-e just fine. But do be prepared for sharts,skitters,poop whatever you want to call it. At first you may not get much warning, I could have taken up to 7 immodium a day but I really thought that was extreme but if I went anywhere I learned to take one before I left home.

Try to relax you're doing great no s-e, a lot of people don't get any.

[gerry]

Hi Risen,

You might not get side effects.

I found I had nothing initially, then the rash was the first thing that turned up. I was lucky and didn't get hit by anything too hard, but as time went on I found new things would pop in. Just before I came off, the Gleevec fog started to hit, I was forgetting words and appointments etc. It took 3 years for that one to turn up.

[Antilogical]

I've had a lot of the standard side effects.  My neighbor also takes Gleevec, and has almost no side effects.

[rcase13]

CML is so rare you almost have to think something environmental for two neighbors to get it.

[Antilogical]

I'm skeptical about CML being related to environmental issues..

 

I do suspect it may be related to high intelligence, though.     Just a theory, mind you.

[rcase13]

That's it!!! I am above average intelligence!!! I think we r on2 somtjin

[Billie Murawski]

AL,  Does that mean I'm SMART!!!!!   Hot Damn

 

Yipee I'm smart  I'm smart I'm smart   la lal la la I'm smart I'm smart  Unlucky as hell but I'm smart I'm smart.

[hannibellemo]

My first side effect with Gleevec other than slight nausea the first night when I took it right before bed with no food (!) happened a month later. We were waiting in an airport to fly home after a great vacation when I developed some really interesting gas. Lots of it!

 

I had a few episodes of sharts over the next few months (don't always trust that a fart is just a fart) and then I developed high liver enzymes (very rare) and was taken off Gleevec. So that particular side effect never really had the opportunity to resolve itself.

 

Otherwise, I loved Gleevec!

 

You'll be fine!

[Trey]

My experience with starting Gleevec and the associated side effects:

 

Within the first couple weeks:  fatigue, bone and muscle pain, muscle cramps, sharts

 

Within a couple months:  low blood counts, skin rash

 

I have also noticed some odd things like trouble swallowing larger pills, narrowed ear canals.  Possibly due to soft tissue swelling in these areas. 

 

I started splitting dosage 200mg twice daily and that helped with side effects.  Most gradually subsided over time, but the cramps remained.  I dropped dosage to 200mg once daily several years ago and now just have occasional muscle cramps. 

 

You are much younger so I would expect you will not have side effects as much as many of us.

Edited by Trey, 18 March 2015 - 09:45 AM.

[chrissy778]

rcase13, I agree. I know its not important how we acquired CML as long as we are fighting it now, but I have a couple theories of how I might of got CML. I read that most all Leukemia are caused from solvents. I used a lot of fly spray pesticide on the horses we have owned for over 10 years. In the spray there is a chemical called Benzene it causes leukemia. Of course I did not know until I did research after my diagnosis. when we used the spray I would get it on my skin and inhale it with out even thinking of it. We do not use it anymore. Also I have had several venograms where they inject dye to look at your veins in a x ray. I have a venous malformation in my leg and this procedure has been used more then I can remember since I was about 15 years old. The radioactive dye was most likely not good for the blood also. Sorry for taking your post off topic Risen. Risen I did have stomach issues but I changed my pill time gradually to a few hours before bedtime so the Gleevec was not sitting on my stomach all night and that did help. Some muscle pain a year and a half in but it only lasted a few months. I do get fatigue when I do to much but l know it will pass now and wont last forever.

Try not to worry and if you do get a side effect try to get on here so we can share what worked for us or how we are dealing with it. Don't ever think you are alone, we are here for you and most likely are experiencing the same thing...