Greetings,
I am happy to find this support group.
I am newly diagnosed and have been on Gleevac for one week. After an initial WBC count of 146K I was down to 133K with one week of hydroxyurea. I am trying to cope with the side effects...nausea and inability to sleep. Do the side effects get easier to manage? Do you stop feeling so fatigued as the blood counts normalize?
Hi and welcome to the club no-one asked to join. The range and duration of side effects of the drugs varies hugely between people. Many people on Glivec/Gleevac/Imatinib do at least ok and a lot fairly well. Some people have such major issues with side effects that they need to change drugs, but pretty much all find a drug that works OK. Imatinib is the generic drug name which you will most often find used on here. Most of the worst side effects improve significantly in 4-6 weeks, but some (in my case cramp, some fatigue and flatulence) persisted. To give you hope I can tell you that having been on imatinib for 10 years, I am now 11 months into treatment free remission (TFR); I last took imatinib on 22 October last year, and my counts are low and stable. You will find it easier to deal with the whole thing of you learn a bit; start with the "just diagnosed" tab under "about CML" above. I'd also recommend you look at the template questions for your doctor - take them with you to your next appointment, and get the answers. If there is anything you don't understand - look it up on here or ask us.
The vast majority of CML patients will (eventually) die with it, and most after a pretty normal lifespan; very very few will die as a result of CML devloping into accelerated phase and blast crisis.
Thanks for your reply. I have done extensive reading, and also consult with the docs about my questions. I have a health care background, which helps with reading the information. It is so wonderful that you are drug free now. I hope that continues for you.
It is hard to think about living a normal life with the constant fatigue and side effects. I am hoping that after a month on the drug, I will have some changes. Or at least be able to talk to the docs about these. I do have meds for nausea.
I am looking forward to the support from this group.
Hi Sd,
It will get better I promise!!!I am on nilotinib and had some side effects including muscle pain headaches hair loss etc but after third month of medication I started feeling better.Everyday I drink some freshly orange juice and take vitamin D twice a month.I would advise you to eat as healthy as possible in order to help your system recover more quickly.
All the best.
Vicky
