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AML successful treatment
Happy New Year! I want to share a happy treatment update for my wonderful response to Venetoclax and Dacogen (similar to Vidaza) for treatment of my AML. When I was diagnosed 3 years ago I was considered too old for transplant at age 78 here at the Mayo Clinic. I went into remission after my first cycle of treatment and have now stayed in remission for 3 years. My treatment has been ongoing and my team here has tweaked my routine several times to reduce side effects. Currently I am on a 5 week cycle of Venetoclax for 7 days at the same time I get Dacogen infusions for 3 days (recently reduced from 5 days). I will continue on some treatment routine as long as it is working. In the meantime I am enjoying a full life with family and friends although still taking precautions (weekly blood draws, avoiding folks with colds, etc.) .
I have learned a great deal throughout this period, including the variability of patient responses that can occur due to so many factors (genetics, other health conditions, etc.). I have also learned that there is at least one other patient here who is closing in on 5 years of remission with a similar routine! I am sharing my story to encourage you and wish all of you good outcomes as you face your treatment challenges.
Linda
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That's awesome lindagi - thanks so much for sharing!
Lindagi so glad to read your success with Dacogen and Venclexta. I mirror just about all you posted!
I am on Dacogen and Venclexta drugs however mine is 1/2 down gradually from 5/7 after induction therapy. I elected to forego BMT when I was initially diagnosed in March 2024. I was 75 at the time. My weekly blood draws are now every other week and treatment is now every 6 weeks pushed out from every 5 weeks. I know I am blessed with the Hem/Onc team who oversee my treatments; they have me actively involved and give me options about treatment frequency based on my numbers and great results from special blood tests (MRD and BMB). I wish the very best to all who are living with AML! It IS something we can live with…significant improvement and outcomes over just a few years ago. The blessings continue in my life and I wish the same for everyone dealing with cancer!
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5 Reactions@lindagi would you please tell me if you take venetoclax daily ???
I also was diagnosed with AML
About 6 months ago.
I had MDS for 9’yesrs ago
And was a watch and see. My counts were stable except my platelets. We decided my oncologist and to start
7+3 if ventalex and vidaza. I web into submission after the first cycle. I think I started 2nd and third cycle which I had to stop
Because all my counts went down. Like my platelets being. 10. I have been in the hospital
Every week for platelets transfusion and bags of red cell
Tamsfusin. All chemo
Infusions have stopped. This has Been since December the 15th. Iron’s know how long I can survive ytansfudions. They talk about iron overloadi ca
N’t go
There. Just pray my counts come up
Thanks for listening.
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2 ReactionsOh golly, @jacklyn. I’m so sorry you’re having such a rough go of things lately. I was hoping, along with you, to see an improvement in your blood numbers returning to normal without transfusions. This has to be so concerning and frustrating for you and your doctors.
Having weekly transfusions is so disruptive to your daily activities. I know from experience what an impact this has on the psyche. Seems like with a snap of the fingers, the normalcy of life is being replaced by frequent trips to hospitals, doctor’s appointments and pharmacies. I’ll add some of my prayers along with yours for an added boost…to find stability in this disease so you can return to your treatments.
With excessively low platelets it’s important to be cautious avoiding nicks, cuts and bumps…all things I’m prone to anyway. I remember joking to my oncologist that “I guess I have to give up knife juggling now.” I thought he was going to pass out!! 😅 He didn’t know me well enough, at the time, to realize I was joking!
How are you feeling overall? Is the exhaustion overwhelming or can you be at least somewhat active?
Hello everyone. It's been 2 months since my father was diagnosed and he did 2 cycles of Azacitidine. No blood count recovery yet but it did bring his wbc from 27 to 1.73. Doctor said that my father looks strong enough now that we will be adding venetoclax on his 3rd cycle.
@lindagi @sonieaml may I ask what were your mutations when you were diagnosed? My dad was found negative on chromosomal aberrations using a PCR test and doctor said no mutations were found during bone marrow biopsy. I glad that there isn't any adverse risk mutations but the doctor said he's classified as intermediate risk.
The country where we live doesn't have NGS testing yet so we only rely on pcr tests and BMB.
@loribmt I also wanted to ask have you ever met anyone with the same circumstances?
Thank you
Hi jalan00,
When I was first diagnosed 4+years ago, my bone marrow biopsy (BMB) showed I had IDH2 as well as TP53 mutation. I was considered at intermediate risk.
Just had another BMB and I continue in full remission. I am now on a Venetoclax pill and weekly injection of Inqovi. I was on a weekly pill of Inqovi but my neutrophils were not bouncing back well on the 100mg pill. My Mayo team says that their patients seem to do better on a weekly injection of Inqovi. The pill can only be swallowed whole but the injection is calibrated to my body weight and reduces my dose to less than 1/2 of the pill.
So much to learn as you and your father go through this. You are seeking all the information you can get - good for you and him!
Linda
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6 Reactions@jalan00
My mutations found April 4 2024 via BMB were FLT3 and NPM1.
I received induction therapy consisting of 21 days of Ventoclax and 7 or 14 days of Azacitidine. This combination has sustained me through 17 rounds with amount of each gradually reduced until I am now on maintenance consisting of just 1 day Azacitidine and 2 days of Ventoclax. I am in deep remission. My last BMB and MRD blood test could not find either of my mutations. It did find SF3B1 which is typically a “precursor” to AML. However the mutation is so minute that my HEM/ONC said we will just watch it for now. My next MRD blood draw is scheduled for April 9th. I was initially offered a Bone Marrow Transplant and elected for maintenance (or palliative care) instead. I will keep your Dad and you in my prayers! I am a living example that prayers, gratitude and gratefulness do work!
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6 ReactionsThanks for answering @lindagi @sonieaml 🙏. It has only been 2 months since my dad started his treatment but a lot has happened even just during his first cycle that had me worried. He is still getting transfusions and will start to add venetoclax on the 3rd cycle.
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2 ReactionsHi @jalan00 Each person has a unique body chemistry so it’s very difficult to compare treatments and outcomes. The encouraging news is that your dad’s doctor feels dad is improving enough to be able to add the venectoclax. Those two drugs are often used in tandem to treat AML.
It’s not uncommon for blood levels to remain low during treatment. Optimally, doctors would like to see some blood count recovery near the timing of the next cycle. But sometimes that doesn’t happen as quickly as desired. If red blood cells or platelets get too low then there might be a transfusion to help during that time.
I’m expecting the doctor’s goal right now is to stop any progression of the AML. You mentioned your dad’s WBC is now lower. Do you recall seeing a lab result for blast cells?
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