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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
Replies to "Hello everyone. It's been 2 months since my father was diagnosed and he did 2 cycles..."
Hi @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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@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!