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Dacogen/Venclexta not working?

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

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@loribmt

Steve, you’re talking to a high risk, three mutation, AML bone marrow transplant survivor. I’m 5+years post and at 70 years young, I feel like I’m in my 20s, in a durable remission with no sign of relapse.
In Connect’s BMT/SCT/CAR-T Support Group is an active, growing number of members who have gone through the allogenic stem cell transplant journey. Some as recently as a few weeks ago to 10+ years post transplant. Not sure how recent your research articles are, but I think most of us would encourage you to opt for the BMT if you have the option. The survival rate over the years has increased dramatically and while there can be some graft vs host issues, new medications and interventional therapies have reduced those side effects as well. Sure, there can be some risks, as with any medical procedure. But the quality of life and rewards for having a 2nd chance at life outweigh those slight risks of failure. The first month or so after transplant can be a rough recovery but after that there’s usually a slow, steady progress towards a new future.
AML can be challenging to treat. Some of the cells can elude chemo or basically go dormant during treatment only to resurface later. At some point the chemo will no longer be as affective. A bone marrow transplant remains the only potential cure for long term remission because it gives you an all new immune system which will again recognize the cancer cells and destroy them. Your old immune system with the mutations can no longer do that, allowing for the blasts to continue to proliferate over time.

To put it into perspective, I had 85% blasts in my blood at the time I was diagnosed with AML 5.5 years ago. The odds were definitely not in my favor. But 3 rounds of inpatient chemo with cytarabine and idarubicin got me to remission. My BMT with an unrelated donor has me enjoying my 2nd chance at life and ‘living like they left the gate open”. 😅

Not sure what your age is, but I’ve personally mentored patients who are 75+ and are now in their 80s having a fantastic 2nd chance. You had a 2nd opinion at Moffit, which is a noted cancer center where they also do allogenic transplants. Was a transplant encouraged for you?

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Replies to "Steve, you’re talking to a high risk, three mutation, AML bone marrow transplant survivor. I’m 5+years..."

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...