Chronic Myelogenous Leukemia (CML) Support Group

I have been with CML and with Gleevec for 4 years. My only side effects are Anemia and big circles under my lower eye-lid. But I heard that many other people do have problems with Gleevec.
If after 6 months those side effects don't disappear, your oncologist should give you another treatment.

Hi! I was diagnosed with CML in feb. and started taking Gleevec. I wake up with puffy eyes, am anemic and in the beginning had severe joint, bone and muscle pain. It has gotten better but I still have cramping and get charlie horses. Sometimes I feel like I have restless leg syndrome. My doctor has told me this is normal andwill get better with time. It has definatley gotten better but I still suffer from the effects of the Gleevec. There was a point that my doctor gave me pain killers because it was so bad. all I can tell you is it will get better and I am still waiting for it to go away. Most people I talk to say it takes a good year. Just keep in mind that if the Gleevec is getting your blood counts to the right levels than Its worth dealing with the side effects. They do have other meds but Gleevec if it works is best. Hope this helps:)

I've been on Gleevec since 10/08. I've had a lot of edema, nausea, muscle cramps... you name it. For the muscle cramps try some calcium and magnesium supplements. I have a very sensitive stomach, so I always take it with food. I still get the edema, mainly around my eyes. It's just a roller coaster ride of side effects for me. They seem to rotate. After a few months you'll even out with the side effects. When I went back to see my oncologist in June, he said the side effects I have would be the ones I would keep until it was time to come off the Gleevec. It does get better, it just takes time. Patience is definitely a virtue! lol

Thanks you guys for giving me some hope that it will get better!!! Best wishes to all..

I haven't been on in a while. I have had a roller coaster of side effects as well. It seemed like I went down the list of possible side effects in the beginning. The pain was horrible for a while so my doctor had me stop Gleevec for two days and start back and take Aleeve with the pain. It worked better. The leg cramps come and go in waves. I have had cramps in parts of my body I didn't even know could cramp. (p.s. Thigh cramps hurt the worst) They still come and go. I have been on the Gleevec since Feb. I am already in remission with my blood levels per my doctor but I still have to take the medicine. I have really bad swelling in my legs and sometimes my eyes. My GI issues some and go. But for the most I feel like the side effects have gotten better. My doctor seems to think these are side effects that are manageable and aren't important. I feel they are because I didn't have them before. But whatever. They are just annoying. Good luck hope it gets better for you. It will just cope as well as you can and you will see the difference in a few months.

I was dx a year ago. I had terrible leg pain for the first 7 months and had to take vicoden and ibyprofin. I think part of the reason for the intense pain was the sloughing off of the excess white blood cells that had built up in my system. I'm pretty much pain free today as long as I keep to a very healthy health regime. Careful with my food, lots of water and I have found that yoga helps my system to burn out the residual toxicities that I ingest with medication. I've noticed some elbow pain at night when I sleep which must be a new side effect. Yoga, or exercise, helps with the "Gleevec eyes" too. It gets a lot better over time. I've recently learned that it is important to have bone marrow tests every 6 months for the first 2 years. If you want more information re: this, write. Good luck and hang in there. The newest research indicates that normal life spans are indicated especially when philadelphia chromosome levels decrease to low relapse risk levels within the first two years.
Take care!