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Dacogen/Venclexta not working?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (35)Comment receiving replies
yes Moffit was where I met the BMT team. i am 67, otherwise good health, and my research included recent studies and statistics. i switched to UM Sylvester because i researched Dr. Sekeres after reading one of his books, noted his extensive research background (versus none with the Moffitt oncologist) and closer proximity to Stuart FL (1-2 hours versus 4 hours) and made the switch. he reminds me to keep the BMT open as as option, which I will but not now. every decision is complicated, influenced by multiple factors. perhaps i will change my mind when the V/V stops working, or i am admitted due to a serious infection (very low WBC and NEU counts). but for now, we just enjoyed our first travel in two years - which was the direction we were starting to go when the brakes came on two years ago - and have plans for more trips now that I am aware of and know how to control the risks, down to blood tests twice monthly versus twice weekly, and a 7-day chemo cycle every 5 weeks versus 4 weeks. would enjoy hearing current BMT stories of those in a similar situation as mine. thanks for listening and your valued input...
Replies to "yes Moffit was where I met the BMT team. i am 67, otherwise good health, and..."
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!
Steve Fenton Thanks for sharing I was dx with AML/ mutation with chromosome 11. not a good prognosis. I to went to Moffitt for second opinion due to a liver transplant and ckd. I was denied.
I went into remission with decitabine/ventoclax for a couple months now I am on carbine/ventoclax 10 days w/2week break. Hearing your story gives me encouragement as I will not be able to have the BMT. but hoping there are other meds for AML. I am waiting for results on my BMB like you I have a very low wbc.
Sounds like you have done a lot of research . I hope you continue to stay in remission/ enjoying living your best life to.
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Hi Steve, I completely understand your hesitancy and decision hold off on a BMT. But having gone through this life saving experience, I agree with your oncologist to keep it open as an option.
Since you’re interested in current stories of members in similar situations here are a couple of links to shared experiences with BMTs.
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
You’ll meet some of the other BMT members such as @alive @edb1123 @kt2013 @jenmkr63 @timt347 @jrwilli1 @tkidd51 @dwolden @graycoose @katgob @mary61 @maryb13350 @lschmeit @tkidd51 (AML 5 mutations) @avaleir @clock45 @caregiverx2 @ marylou329 @sennep and many more…
This is another great discussion started by a member whose husband was about to receive a BMT…meet @mary612
Struggling with decision to move forward with Allogeneic Transplant~with @deb913 @katgob and others.
https://connect.mayoclinic.org/discussion/struggling-with-decision-to-move-forward-with-allogeneic-transplant/
And, here’s my story merged with a young BMT patient, Sky (and family) whom I helped mentor with her AML/Transplant:
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Don’t hesitate to pop into any conversations with any questions or concerns. We’re all here to support each other. It can be very helpful to speak with others who have walked the same path. Enjoy your travels!