I am 4 years out from AML remission. I haven't taken Dacogen, but have been on Nexavar. Perhaps they are similar. I was originally on 4 tabs of 200mg a day...but that totally ripped up my IG tract! Been on 2 tabs for about 3 1/2 years and just recently went down to 1 200mg tab a day. My bone density scan about 2 years ago was fine...although since then, I have had a total knee replacement due to the drugs I was on after my BMT in Mar. 2009. My orthopedic surgeon said it was not unheard of since where I was treated (and had the new knee replacement) is a transplant facility and the drugs often do that to patients. Swell, huh?! My other knee has pain...but xrays showed minimal deterioration. My oncologist and ortho both recommended D, Calcium and aspirin as supplements for the rest of my days. And...probably the Nexavar too. BTW...the Nexavar's benefit is to block the mutation on my DNA that caused my AML.
Acute Myeloid Leukemia (AML) Questions
Asked by ShirleyJZ on Sunday, May 19, 2013
I have been on Dacogen chemo for ten months since my relapsed AML. My dr. Says I can continue indefinitely as long as it is working. Has anyone out there been on it for years? Side effects? (I have 50% bone loss and lots of joint pain, otherwise feel fine)
2 Answers from the Community
Thanks for your response. Am I to assume your bone marrow transplant cured your AML? When I research Nexavar it says it is a drug to treat liver and kidney cancer. I realize drugs are used for multiple cancers. Do you have another cancer stemming from the leukemia? The Dacogen drug (decitabine) I take, IV five days a month, is a cancer drug that is keeping my leukemia from showing its ugly face. This, after induction and three consolations did not keep me in remission....