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My AML has been in remission for a year: Will it relapse?
Blood Cancers & Disorders | Last Active: 21 hours ago | Replies (17)Comment receiving replies
@sonieaml
You and I had similar stories with highly elevated blast % at diagnosis with yours at 90 and mine at 85. Those are some astronomical counts to overcome and survive! It is truly amazing what our bodies can endure and recover from, isn’t it?
You and I also shared a couple of the mutations responsible for a more aggressive form of AML. I also had one more genetic mutation tossed in for fun. 🫤 Like I mentioned before the FLT3 put us at a higher risk for relapse (during the period we talked about) and that’s what makes your story so incredibly impressive without having gone forward with a BMT.
I’m really just blown away with how successful your treatment has been. Were you receiving any other chemo besides the V&V such as Rydapt (midostaurin) which targets the FLT3 mutation?
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@loribmt
Like you I also had a 3rd mutation. Mine was DNMT3. Also at the time of my diagnosis I presented with pneumonia.
As for AML treatment initially they hit me with days 1-5 of Hydroxyura. Simultaneously along with Azacitadine days 1-7 and Venetoclax days 1-21. The Decitabine (Dacogen) and Venetoclax have continued throughout until the change this year in June to INQOVI for the MDS mutation found.
Miracle for sure; angels have been with me during what initially was a very rocky journey with platelet transfusions and bags of potassium as well as struggles with very high (209/164) blood pressure because of one of the drugs and more trips to the ER than I care to count. Things settled down dramatically and stabilized about October of 2024 even tho my key numbers WBC/RBC/Hem/Platelets/Neutrophils have never all been in the normal range at the same time. Funny how we learn our bodies. I do not need a CBC to tell me my platelets are low…mysterious bruising does that for me! Still I will take my journey and give thanks for the beautiful life I have been given to enjoy every day! We are so blessed!!!