Long-term survivors with CML
I joined this group because I am wondering how many other long-term survivors are out there. Everything I read says "three to five years" and some longer since Gleevek came along. Not sure how to spell that--I didn't take it. I am one of the old-timers who took Interferon, I mean "injectable hell." But after three years, I went into remission! Had one short relapse about five years ago; negative BCR/ABLs since then, so I am fourteen years out at this point. The other CML vets I knew who took Interferon have died. I do know one person who is doing well on Gleev. The Interferon spiked my cholesterol and trigycerides to astronomical levels, and I had eight or ten attacks of pancreatitis in six months--that alone should have killed me, but noooo. Would really like to talk with another person who is just too darned stubborn to die.
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Diagnosed 9 years ago and put on Gleevec. Been in full remission per the fish text for a few years now. I'm 51 years old male and wanted to know 2 things. Are these side effects of the disease or medicine and should I try getting off of Gleevec. My body hurts daily like having the flu. Vision has decreased, memory is bad, muscles hurt, cramps, tired, getting out of bed hurts but body...
I was diagnosed with CML 18 months ago. I am on Gleevec and it has my numbers cancer cell numbers at less than .003 and the doctor is pleased. 2 months ago I went from 300 mg to 200 mg and feel much better...but have only 8 good hours a day. My endurance for any exercise is about 1/2 hour and can't begin to do what I used to do. Not finding any information about how I might feel and the Doc...
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It's so hard dealing with pain especially when you don't get any support from the person who your supposed to be closest to. So hard when your trying to deal with pain and that person treats you worse than the pain. Having hard time understanding why. unless you are having a good Day you are treated like crap and they make you feel worthless.