You are not whining, your quality of life has been significantly diminished by these side effects and you're fed up with it. My husband has CML and has many of your side effects, although not quite as bad, and I think they can really wear on you when you have to deal with them day in and day out. Anjana's suggestion to consult Dr. Druker's nurse on dealing with side effects is a good one. There may be some things in her list that you haven't tried yet. The other thing to keep in mind is that the new BMS drug should be on the market this year (at least in the U.S.). Many people in the clinical trials have reported fewer side effects than Gleevec and better quality of life. However, it's not a panacea. Other people have experienced worse side effects. But soon there will be a choice and you might be one of the people who does very well on the drug. Something to consider and talk about with your doctor when it's finally available. I know my husband is going to investigate possible switching when the time comes. Good luck.
Adrienne [EMAIL PROTECTED] wrote: > I am a 47 y/o male who was diagnosed with CML in the summer of 2000 and > started on Gleevec (clinical trial) October 2000 and have been on 400 > mg daily ever since. I am in cellular and molecular remission > (cellular since 2001 and molecular since 2003 - took a long time to > gain full response, but I'm there). I'm VERY thankful for the last > few years that I've had with my wife and kids. When I was originally > diagnosed I was told my life expectancy was only three to five years > which I've already exceeded thanks to Gleevec and hope to be around for > a little while longer. I just would like to have better control over > the side effects which are at times disabling. > > My side effects have never really gone away and in the past few weeks > have intensified to where my wife took me to a local ER last night > since my oncologist was out of town (my next appointment is 5/15 and > due pcr or possibly a bmb at that time) and my internal medicine > physician was unavailable. She (and I) were worried that my counts had > started to go up again, but they and my electrolytes were relatively > unchanged from the most recent results beyond being more anemic than > usual. > > I have had and still have significant bone, joint and muscle pain along > with muscle cramps/spasm along with 'charlie horses'. In addition I > have frequent episodes of nausea, diarrhea and loss of appetite. I > also have frequent episodes of insomnia and fatigue. (Hair loss and > periorbital edema is there too!) That's enough isn't it?...LOL. > > I'm getting very tired and frustrated and have discussed with my > oncologist about discontinuing the Gleevec to see what happens. He has > explained to me that the evidence currently leans to the expectation > that if I do stopped the drug that the CML will reoccur and my wife > (I'm sure in frustration) tells me that I should '...just live with > it...'. Maybe I should and I don't really have anything to complain > about. I don't mean to complain but this has been going on for years! > > I'm EXTREMELY happy for those whose side effects have reduced or > subsided, I just wonder if there is something I'm doing wrong? I stay > active and work full time but do have to miss work and family > activities due to the side effects on a relatively frequent basis. I > take daily multivitamins with minerals and had taken extra calcium and > magnesium until I started to get kidney stones...ugh! > > Any ideas or suggestions? Maybe I'm just getting old...LOL. I just > would like to stop having to take pain medications just to be able to > sleep for a couple hours before I awaken with pain, spasms, cramps or > all three. I don't like missing work or family activities. I feel > like I'm just such a burden on my family and my co-workers. > > I appreciate the postings which I recieve via this group and thought > I'd post this to at least 'vent' a little which might make me feel a > little better at least by sharing. THANKS! --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
