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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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Always so helpful xxx
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1 ReactionIt has been a while since I left a comment here
Why?
Because of the love and support I received from this forum
Always remember slow and steady wins the race.
There are no quick fixes in this life.
Today I have booked into my first “Craft Fair “in my local area
I have come from dealing with my dear husbands traumatic life.
35years in a wheel chair after a tree felling accident. Only 36
4little girls
anxiety,depression heart problems for me,
getting a defibrilator fitted, for my heart and now dealing with the death of my husband after being diagnosed with oesophageal cancer ,3years ago on December 3rd.🙏💙
Now thanks to this group and the support given to me ,I have started my own business
Pixellilywreaths 💐on instagram now.
Follow ,if you wish
It has been a life saver,
Things will improve for you all
My motto is
Keep Talking
Keep Walking
Have a positive day xxx
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1 ReactionGood morning, Ms Heart. It always warms my heart when I see you doing so well and it’s wonderful to have you drop by for a chat!
I certainly remember our earliest conversations. You were so overwhelmed with sadness, depression, anxiety. But also being incredibly brave to keep holding your head up and pushing forward through some pretty challenging obstacles throughout your life. We all need extra help sometimes and I’m so happy that you reached out for a lifeline with Connect!
After your sweet Michael passed away…well…that was the ultimate test of your strength and resilience. Your story of growth after that was nothing short of miraculous! How your long, daily walks to the cemetery not only saved your life and mental health, but inspired an entirely new direction for you with the gorgeous wreaths that you started making! I feel like it was a final gift from Michael.
Your wreathes are stunning and I’m so proud of you. Keep walking, Keep talking…that mantra has served you well, my friend. Hugs! 💖
I am a 79 year old male who was exposed to agent orange having bolunteered for vietnam in 1969. I have FIVE mutated chromosomes!!! And to old for stem cell transplant.
I was diagnosed with MDS/AML in May 2023 which blasts of 13% and OS of 12 months. By Dec blasts increased to 26% so was put in hospital as my blood # were in the gutter. I had 50 % chance of survival. I wrote my obituary in my down time .... worked on a book.
My blood work was awful during this time. Chemo was vidaza and ventocolox (sp) over 21 days. Within a week of treatment starting on Xmas Day all my # s got to normal and was released from hospital.
I am in my 11th cycle of vidaza/Vento, have had NO transfusions since July 2024, no blasts, while hemoglobin has reached 12.5 while platelets appear the most impacted so vary alot in and out of acceptable levels.
Oncologist is very happy with my body response to treatment. I get lab work every Monday morning to assess marching orders for rest of week. I've edited my diet to help my condition and am starting to exercise more.
I am grateful to all who have contributed to my progress in care and prayers. Best to all in their journey....don't ever EVER give up.
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3 ReactionsI use ventoclax 7 days at 400 mg with vidaza 3 days seems to be my sweet spot.
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