Re: [CML] Gleevec vs Transplant

[franklin]

Title: Message

Dear Jennifer, I can relate to everything you just said. I lost my PCRU status when I had to take a break because of my liver. Of course, I had no choice. My liver is calm now but I have to be on a high day low day prednisone therapy, and this may have to be long term. This brings another set of side effects to deal with. Today was one of those days when all I could hear was Dr Jurcic's words, "The transplant could kill you but the CML will kill you". I do have a perfect match sibling and I am 52. Neither doctor at Sloan seemed troubled by my age. Now I wonder if I will become zero again. Today the thought of being disease free really weighed heavy on my mind.  Lynn Franklin ----- Original Message ----- From: jennifer g To: [EMAIL PROTECTED] Sent: Friday, September 10, 2004 7:03 PM Subject: RE: [CML] Gleevec vs Transplant I don't know if I qualify as a "serious" athlete, but I can tell you that I'm now training for my fourth half-marathon. I was a runner when I was diagnosed with CML more than four and a half years ago, before Gleevec was available. I was prepared to have a transplant but unfortunately don't have a donor who's even a close match, so that is not an option for me.   Not eveyone has a "great" quality of life with Gleevec. Through my Web site, I get scores of emails every single week from people who are having trouble coping with the side effects of Gleevec. I myself have nausea, diarrhea and edema frequently. Something has happened to my eyesight. My voice has grown hoarse. I get rashes occassionally, but nothing too bad.I've gained weight that I absolutely cannot lose. I've developed compartment syndrome that I think is connected to the edema Gleevec causes (no proof, mind you). I have cognitive problems. Worst of all is probably the lack of energy and always feeling wiped out. It's extremely draining. I've been taking Gleevec for three and a half years and have only felt truly better when I have taken long breaks of three weeks or more (unfortunately, I relapsed doing that). I don't think that's a great quality of life at all.   If I had the option of having a transplant, I'd do it, even now.   Your post is going to generate debate that is not going to resolve anything. Debate is good, but as you noted, this is a highly individual decision. You'll find people who've done great with transplant and those who haven't, and those who have died. Others have died because Gleevec doesn't always work.   The prospect of having to keep taking Gleevec for many more years is very discouraging!   jennifer g. ======================================= Get comprehensive information about CML: http://www.cmlsupport.com ======================================= -----Original Message----- From: tdhollosy [mailto:[EMAIL PROTECTED] Sent: Friday, September 10, 2004 2:45 PM To: [EMAIL PROTECTED] Subject: [CML] Gleevec vs Transplant  <snip>  I am no expert on bone marrow transplants and I just wanted to get a few of your opinions on what you would give him advice to do.  I can understand that a transplant is the only actual cure, but Gleevec is a great way to keep someone in remission possibly for the rest of their life and also have a great quality of life. Is there anyone out there who is a serious athlete (or anyone else) that has some advice as to what you think he should do? Thanks for your help! Tonya Diagnosed with CML November of 2000 New! 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