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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I was diagnosed the Monday after the 4th of July 2015. I was started on Gleevac and was taken off because it didn't "work as well as they thought it should". I was then put on Nilotanib which caused me to be hospitised for pancreatitis and Liver issues after one week. I was then put on Sprycell which worked for a year but then started causing fluid on my lungs. I had to have my chest...
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