Chronic Myelogenous Leukemia (CML) Support Group

I was diagnosed and started Gleevec on 3/13/09 and I still have frequent muscle aches. At times, it is a cramp but more often than not, I feel like I have arthritis. If you are having fever, I would definitely discuss with your doctor, especially now that we are in flu season. Also, I have noticed that six months into CML, some side effects have settled down, less swelling around the eyes, my stomach is fine when I take the Gleevec, but the biggest issue is that I am always tired. I have not found how to conquer that. Best of luck to you.

Thansk for your response but do you ever feel strong physically? Cos i don't. Its like I dont have any strength.

I was diagnosed a year ago. It took me about 8 months to get enough strength back to start exercising again. Now, if I am consistent with exercise, the fatigue isn't as noticeable. Fatigue is a side effect of Gleevec. I experience muscle and leg pain every now and then, but not much to speak of given that for the first several months I had severe pain. It does get better. It takes time for the bone marrow to heal, and everyone's process is different. Are you drinking enough water? I've found that drinking a lot of water helps with the fatigue and the leg pain. Also, I took pain pills for the pain when it was really difficult. That made a huge difference and gave me my life back, so even though I had resistance to taking pain meds I'd do it again if I had to do it all over again. I'm in a much different place at the one year mark than I was even at the 8 month mark. Best of luck!

P.S. the high fever doesn't sound right. I sometimes feel (by touch) like I have a fever when I don't and I think that's the Gleevec. So, I agree that you should check with your doc about the fever.

I can't say that I feel 100% but it seems that I am getting better going into my seventh month of CML. I find that I need to get alot of sleep every night or I cannot function the next day and about every five or so days, I just get wiped out - totally stopped in my tracks. I really do encourage to speak with your doctor about the fevers. I feel like a furnace after I take my Gleevec which is in the evening with dinner. I live in Baltimore and it is pretty cool at night but I need the window open and sometimes a fan! Hang in there.

Thanks. Will definately check with my doc. Is just that i feel like crap and i need my life back.
My next question is: Does glevec affect your ability to gain weight besides the side effect of water retention? I mean gaining weight normally.

I am on the small side to begin with and I had 10 lbs from my normal weight at the time I was diagnosed. In my nearly 7 months, I have put back most of that weight and it is not fluid retention. I think the Gleevec is working, my appetite is better and I look much better than I did at diagnosis. I guess it just takes a long time for the body to "settle" in and it is no doubt different for each patient. I am tired alot and I get muscle aches and I have needed infusions of red cells but in the scheme of things, I know it could be worse. It is the not knowing that I find hard - what will the next blood work show, the next bone marrow, am I going to pick up an infection that will really get me sick - so I try not to dwell on it and just make sure I constantly wash my hands.