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Dacogen/Venclexta not working?

Blood Cancers & Disorders | Last Active: 3 days ago | Replies (35)

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@mary612

Hi @stevefenton
Thanks @loribmt for the introduction!
My 65 yo, healthy and robust husband is 4 months post his stem cell transplant. He was diagnosed with a secondary AML with a high risk mutation in January of this year. He was lucky to have found it during a routine check up and had less than 10% blasts but was told the high risk nature of the mutation (secondary to having treated with chemo drugs for throat cancer 5 years ago) meant he had maybe 12 months to live. The team at Northwestern in Chicago treated him with 3 cycles of Venetoclax and Azacitadine. He was in complete remission after 2 cycles. The only chance of a cure was a BMT, which he was fit enough to endure. They found 3 perfect matches for him (all international). His labs show the transplant successfully grafted and the last biopsy shows no evidence of disease. He is now 4 months post transplant and on monthly maintenance Aza/Ven to keep him in remission. All other lab values are also normal and steady. He is only struggling with some clotting issues and gaining back some weight. After 2 years of remission they will start using the word “cured.”
We consulted at MD Anderson before the stem cell transplant at Northwestern and they concurred that this plan was the best option for long term survival.
We are newly retired and love to travel. He loves to fish and spend time on the water in Florida. We felt sucker punched at this news and want to return to our old life as best we can. We have new grandchildren we want to enjoy too. So for us, this was the best option. Even now, the doctor advises that the leukemia, if any cells somehow avoided the Aza/Ven cycles and strongest conditioning chemo prior to SCT that they can possibly give a patient, the cells can become resistant to the maintenance chemo Venetoclax. So we assess monthly now how is tolerating the maintenance meds and will recalibrate if necessary.
Sounds like you do your research and try to make informed decisions, bravo!
We do too. If you ever want to ask any questions about the BMT experience, let me know.
So happy for you that you recently were able to travel again and enjoy your life. One day at a time, as many of us say here in this group!

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Replies to "Hi @stevefenton Thanks @loribmt for the introduction! My 65 yo, healthy and robust husband is 4..."

Hi Mary,
How soon did the conditioning start after the last round of chemo? And was there 5 days of chemo before the transplant? So happy for you and your husband that he is doing so well! I hope that I can see the same results!!