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Dacogen/Venclexta not working?
Hello,
My name is Melissa. I'm a 47-year-old wife and mother of two living in Alabama. Some blood work related to a recent bout of pneumonia revealed I have AML. The diagnosis was 8 weeks ago. The plan was to do 5 days of chemo (Dacogen) with three weeks off, until I reached remission. My doctor in Huntsville and the transplant doctor at UAB (Birmingham) seemed confident three rounds would do it and by then a donor would have been found for a BMT.
With no family matches, we're putting our hopes in the registry. Ironically, I was in the registry as a donor and matched with someone last year. Fortunately, they found a slightly better match to go with. I shudder to think what might have happened if they got my janky bone marrow.
Unfortunately, I'm finding cancer and cancer treatment don't always go according to plan 😏 After one round of Dacogen a bone marrow biopsy showed no change in the level of cancer. We had to delay treatment due to my counts being too low but eventually round two was also in the books - and my awesome doctors added Venclexta to the mix.
Today, I found out there's still no change. It's not getting worse. But, it's not getting any better. Since remission and transplant are the goal, they're now talking about forgoing anymore Dacogen for a hospital admission and more intensive chemo.
There are a few support groups in Huntsville but most seem to be devoted to breast cancer and/or meet during the day. I work full-time, am trying to keep things as normal as possible for my 7 and 11-year-old, and doing some caregiving for my mom who has Alzheimer's. Basically, I am losing my mind.
So - that's where we're at. My question (buried in all this) - is this normal? Has anyone had the Dacogen/Venclexta combo fail to make a dent? If so, would anyone be willing to share their experience with the more intensive chemo for AML? My brother-in-law underwent incredibly powerful chemotherapy for a rare and aggressive cancer (not leukemia). While he did live another 10 years, the treatment left his kidneys and heart severely damaged.
Thank you in advance to anyone who made it this far. I am not known for brevity 😉 Pics of my crew who are my reason for reaching out (serious introvert) and for fighting this with everything I've got 🧡
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Thank you so much. I recall my Onc/hem mentioning my treatment so far wasn’t targeting the FLT3. They “save” that until they try other treatments. If the other treatments do not get results they will then target the FLT3 mutation. I will post updates as they become available. Thanks again!
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2 ReactionsI see your reply was to Melissa however I wanted to wish you well on your upcoming BMB. I am sorry that you are not a candidate for BMT. I will keep you in my prayers that remission is next for both of us on our shared journey!
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3 ReactionsHi, Thank you so much , I will be doing the same for you. This has definitely been a different journey for me compared to my LTP.
💚😊❤️
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1 ReactionMelissa, i am not a doctor, but i can share what I've been doing:
1. sudden diagnosis of AML (quickly ramped up from MDS) in April 2024
2. biopsy showed 15% blasts (very bad)
3. after round one Vidaza/Venetoclax next biopsy showed blasts less than 1%, and formerly in-the-tank platelets (became transfusion dependent) came back up close to normal (no transfusion since)
4. still dealing with super low WBC count, but managing with anti-fungal, -biotic and -viral; and avoiding crowds, sick family, cuts, etc.; just finished round 5 of the V/V
5. I've done a ton of research as a layperson, and have heard nothing about Dacogen: the medical papers and journals i read praise the Vidaza/Venetoclax regimen
6. i have also discovered there is a subset of oncologists who are not well-informed, and it is CRITICAL to get a second or third opinion; i went from a private oncologist, to Moffitt, and eventually to Sylvester UM to find the best expert
7. lastly, you mentioned being an introvert: either that has to change now (sorry) - you must advocate for your self and ask questions - or find someone who will be your strong and outspoken advocate. Now is not the time to worry about offending the doctors; i am always respectful but i pushback firmly if i am not getting the answers i need, or want to know "why" a certain drug or action is recommended. i cannot emphasize this enough...
Melissa, happy to add more details if you wish, and I will add you to my very long prayer log for wisdom, patience, a strong advocate to come along side you, and of course healing.
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7 ReactionsWelcome to Connect @stevefenton. Thank you for sharing your experience with Vidaza/Venetoclax for AML. Sounds like the combo brought your blast count down from the initial higher count.
You mentioned that you were diagnosed with MDS. Were you being treated for MDS and it morphed to AML?
Does your oncologist feel that the V/V will put you into remission or will you require a bone marrow translant?
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1 ReactionLori, 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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2 ReactionsSteve, 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?
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...
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1 ReactionHi 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!
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2 ReactionsHi Lori,
Do you know of anyone who has AML with the mutation RPN1(GATA2)MECOM fusion, inv(3)? I was diagnosed with MDS in April ‘24. June BMB showed it had morphed to AML. I have had 3 rounds of Decitabin/Venetoclax, and my blasts have been 15-19, 9, and now 11. Am having trouble with low neutrophils, been at 0 or just a hair above for the last couple of weeks. I am going into the hospital for 10 days to get 2 new drugs, along with the Venetoclax, hopefully to get to remission! I was scheduled for a transplant but had to postpone it because of the low WBC. There are also 2 donors who are a perfect match for me, which is unbelievable! Was just wondering what others have used for medications, and how long their process was to get to transplant? Thanks so much!