Thread: Venetoclax
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Old Wed Apr 24, 2019, 07:37 AM
Sue&Dave Sue&Dave is offline
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Join Date: Nov 2016
Location: New York
Posts: 50
Hi Honey - My husband started Venetoclax just yesterday. He had been on Vidaza since Feb. 2017 with stellar results. It has now stopped working - right on the '2 year' schedule. We somehow thought that because he had such a good response that he would be in remission longer than the standard 2 years that they tell you with Vidaza. He is now scheduled for transplant at the end of May. Because he will be doing a haplo transplant (no matches on the registry) they really want his blasts down to 5% or below, and they were at 6% last month. His hematologist suggested we try a short cycle - 3 weeks of low-dose 100 mg. Venetoclax, but wasn't sure if our insurance would cover it because it is not FDA approved for MDS. We were fortunate that it was covered - with a whopping $600 co-pay! but well worth it if it brings his blasts down. He is currently on his last cycle of Vidaza and taking the Venetoclax in conjunction with the Vidaza has wiped him out. We were very concerned about the tumor lysis associated with the drug, however our doc said because his blasts are so low anyhow there likely won't be a large dump of the tumor cells into his system (which is my layman's understanding of it). My best to you on this difficult road - but as many have already noted - you are a fighter and that means a lot with this disease.
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