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Dacogen/Venclexta not working?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (35)Comment receiving replies
Lori, my MDS treatment was watch and wait from April 2022 from a local private oncologist. After reaching out to Moffett for a second opinion in April 2024, after becoming PLT TX dependent, their biopsy showed 15% blasts and five genetic mutations: AML. The V/V has put it into remission, but since after extensive research I opted to not do a BMT (too much risk and poor QOL for too little reward and limited CR), the V/V is currently my only option until it stops working.
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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?