Hello Everyone,
I am new to the list. I have some questions I'm hoping to get answered. I have CML and was originally diagnosed with a white cell count of 331,000, May 8th of 2000. I went to MD Anderson and got in on the tail end of the Glevec study (then called STI-571). I went into remission very quickly after starting Gleevec. I have always taken 400mg each day with breakfast.
I'm wondering a couple of things and will start with side effects. First of all, muscle cramps. I do tend to get these (severe) especially if I don't drink enough water. I've never gotten any good advice from anyone on how to treat these? I do seem to be hungry all the time and I am not grossly obese but probably 40 pounds heavier than I should be. But, I carry it well as I'm 6'3". Also, I have fairly severe joint pain in my right knee when I sit down. But, am not sure if this is just arthritis, old age or what (I turn 46 next month). I don't seem to have great deal of energy. I have sleep apnea which doesn't help much either. But, I do use a cpap machine which does help but I still like I get a decent night's sleep. Most days, I don't feel like doing much besides going to work and doing a few "chores" around the house in the evenings.
Another thing that I want to mention that really chaps me is the cost of the Gleevec. When I first started on it, it cost around $2,000 per month. I was lucky to get my first 2 months free on the tail end of the study. Well, I went to pick up my new 30 day supply today and my pharmacist had gone up almost $200 over what it was last month! He went up almost $200 this past February as well. But, I know that I'm still getting a fairly "good" deal at $3,800 for 30 days worth. This is still so wrong and I get sick every time I go to the pharmacist wondering when the next price hike will be. I am fortunate in that my insurance covers my Gleevec at 100% after I meet my deductible ($3800).
Last year, I had to get a loan to pay this amount and will probably have to do so again this year as I don't have that kind of money just lying around. It is so frustrating to have that bill facing us each January (right after Christmas!) Also, our health insurance premiums keep going up up and up. We are now paying almost $1,600 per month for my family of 4. As you all know, I can't just drop this and shop for a cheaper premium!
Well, I am sorry to have gone on so long but would appreciate your comments about the side effects like the muscle cramps, fatigue, joint pain and how to deal with them. Also, one more question. I have found several Canadian pharmacies offering "generic" Gleevec for very "reasonable" for what I pay. The last time I checked, I could get a generic for $1600 for a 3 month supply! Is anyone here on this "generic"? Can US residents legally order from Canadian pharmacies? It is my understanding that the company making the "generic" is based out of India and Novartis is suing them for infringing on their patent. I worry about the safety, quality control, etc from something made in India. Am I crazy in thinking that way?
Would appreciate your input.
Dave