My AML has been in remission for a year: Will it relapse?

@loribmt thank you so much for the hug and for sharing in my excitement. Just to clarify I was also told the only “cure” for my AML (blasts at ~90%) was a bone marrow transplant (BMT). I have mentioned before they found 5 matches for me however the process wasn’t anything I wanted to endure. At that time, my survival prognosis was listed as 12 months. My chart showed elected “palliative care” and thus my journey began.
Your BMT journey is a miracle too and this site is blessed to have you as a mentor.
You and I come from each end of the AML treatment spectrum and there is SO MUCH more in the middle for patients and care givers to learn about and pursue as every journey is an individual one! Knowledge is power and as I say “every day is a school” day.

@loribmt .....i am so happy for sonieaml...unfortunately I have mutations that are not targetable yet....i hope some research medicine will come out soon to cover my mutations..Found out yesterday my oncologist told me I was mrd positive. Hoping for the best and so happy for the ones who can beat aml......all our in my prayers

@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?

@bettersleep68 Some mutations, even if not directly targeted, can respond well to the chemo treatments. Do you know which mutations you have?

@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!!!

@sonieaml. This has really been so interesting to realize how similar our AML journeys began and how using two entirely different treatments plans both met with positive outcomes. Though I was 65 at the time and Venetoclax wasn’t on the market yet. I wonder if my treatment may have been different if it had been available. There were no other options ahead for me besides the BMT. So it’s a revelation, given the similar circumstances, how much value the introduction of Venetoclax brought to the AML treatment table! It offers hope to patients where a BMT might not be a viable option.

Like you, I also presented with pneumonia after 3 weeks of rapidly declining health. I’d been to my PCP three weeks in a row with a horrible, non-productive cough, and she kept saying I was fine. Didn’t bother with blood work even though I had a sustained fever of 102+ for 2 weeks, losing weight and the continually worsening cough.
The 3rd week, my husband literally carried me into my appointment. Doctor still told me I looked great and why was I not in Florida.
I did not look great. I was pale as a ghost…which wasn’t far off the mark. LOL. My husband refused to leave the office until she ordered labs and a chest X-ray. Results came back later that day with a hemoglobin reading of 4.7, chest Xray showed pneumonia, had a neutropenic fever and about 24 hours left on the planet. Rushed to the hospital, had 2 transfusions, copious bags of antibiotics to stabilize.
Took a week to get the BMB genetics results. Then chemo for 7 days of cytarabine + 3 days of idarubicin. I was in the hospital for 5 weeks the first time. Then a week as inpatient every 28 days for 7 days with two consolidations of cytarabine. Between cycles I was taking midostaurin, which was a targeted drug for FLT3. Subsequent BMBs showed I was in an initial remission but it would be tenuous. Diagnosis was February, BMT was in June of 2019.

I think when we’ve been handed this second chance, no matter how we got here, we are so grateful for every single day of life! ☺️ We are indeed blessed.

Again, thank you so much for sharing your story. Knowing the full extent of how well the Dacogen and Venetoclax worked to clear your body of the FLT3 mutation, which is a hard nut to crack, is so inspirational! I wish you continued success with this next step!

@loribmt
Your journey has been a lot tougher than mine. Thanks for sharing how similar we are!
I was fortunate to have had blood work 6 weeks before I wound up in the ER with what I thought was just pneumonia I couldn’t shake. It was the Saturday night before Easter. They did the blood draw, came back and did a 2nd one and when they came in for the 3rd the ER Doc came in too. She said we suspect you have acute leukemia. Unfortunately our Hematologist will not be in until Monday since tomorrow is Easter so we will admit you. Well to everyone’s surprise their Hematologist showed up at 9am Sunday (Easter) morning. He looked at the blood work from 6 weeks earlier and said “I could run more tests but there is no use, you have Acute Myeloid Leukemia and we are transferring you to UCSF in San Francisco”…thus my AML journey began!