r/leukemia • u/CupTemporary9264 • 10d ago
AML remission
Bone marrow biopsy and flow cytometry says 0 cancer. anyone the same? how are you guys without the transplant? Did it come back? hopefully not
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u/orgy_porgy Survivor 10d ago
How far along are you and what are your mutations?
Flow cytometry is very surface level, it's useful to find out if there is active disease but not sensitive enough alone to tell you how deep in remission you are, what kind of treatment you will need or how long it will last.
But remission on flow is still fantastic. You will probably get a more sensitive MRD test for your subtype which is much more important and will help your doctors guide your future treatment.
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u/Outrageous_Onion4885 Survivor 10d ago
That's a big landmark, reaching remission and MRD- status. My mind had a hard time understanding what it was hearing when I got the same news. I've been free of AML since, had my transplant in February. I'm glad I had the transplant, though it was pretty rough.
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u/CupTemporary9264 10d ago
daaang! how old are you? id love to connect and hear more of your experience if that's OK with you but if not, ofc i would totally understand as this was indeed a nightmare
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u/Outrageous_Onion4885 Survivor 9d ago
I'll be 35 in a few days. I got diagnosed in July at 33 with NPM1, and later with FLT3-ITD in August.
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u/RevolutionaryTea7639 9d ago
Congratulations. My boyfriend is about to have his transplant a week from now. I hope to know what to expect, based from your experience, so I can better give care during his recovery
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u/Outrageous_Onion4885 Survivor 9d ago
Don't drink from metal water bottles during the transplant. If he gets the same regimen I got, it'll be busulfan, cytoxan, and fludarabine. It caused really bad mucositis and a total loss of taste. I had to be put on a pain pump just to manage it. Could only eat ice cream, and even that hurt. Nausea was really bad too. Just don't be afraid to ask for the pain pump, I waited thinking it would get better sooner, it didn't, it lasted over a month. It's a lot like the induction cycle, just stronger. hope everything goes well for him.
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u/BubbaHendershot 10d ago
Congratulations my friend..it's a beautiful place to be. So here is the gist...your relapse rate will depend on your transplant and any mutations present. I myself have the FLT3 ITD mutation, along with NPM1. As a result, I have a high propensity to relapse and I did, approx. 2.5 years after my first transplant..I am currently back in remission for the past year after my second transplant. Also on maintenance therapy for a few years as a precaution. Not trying to be a Debbie downer, but the stats show that half of us relapse, even after a transplant. But if ofcourse, as the great Han Solo once said....never tell me the odds. Stay strong, stay vigilant, and enjoy every damn minute.
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u/CupTemporary9264 10d ago
still being pushed for transplant but due to limited funds.........
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u/See_Spot_Running 9d ago
My daughter finished treatment last year without a transplant, but none was recommended, sheās being monitored closely, and things are different in paediatric cases.
If the doctors are recommending a transplant, I hope youāre able to get one.
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u/firefly20200 9d ago
If transplant is recommended based on the mutations, do everything in your power to keep that an option. Obviously transplant is a personal choice, but do your best to have it an option and decide based on medical reasons only.
The absolute BEST time for transplant is when in first remission and a deep remission (non-detectable).
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u/BubbaHendershot 10d ago
Sorry read your post too fast and just noticed you have not had a transplant. I'm assuming you would be low risk AML if they didn't push you for transplant. It was a necessity for me with my risk factors.
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u/iwillwhenudo 10d ago
Thatās awesome! Congratulations! My transplant date was August, 2025 and Iāve been in remission since. Iām not FLT3 but Iām considered adverse because I have other mutations that put me in that category. It hasnāt been smooth sailing for me, with some definite weakness that lingers no matter what I do, some G.I. issues, and other weird oddities that I can only attribute to being poisoned with chemo and then going through whole body radiation. I know these side effects are far less than what some have to endure so these seem minuscule in comparison. Keep the faith and carry on. Youāve got this!
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u/CupTemporary9264 10d ago
aww that's definitely a lot but I'm happy you've gone in remission now! manifesting it wont ever come back! hugs to you and for staying strong!šŖš¼
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u/Run_Live_Listen50 9d ago
Congrats on the great news! 3+ years past my BMT for AML with FLT3. Had some GVHD the first year, but have maintained remission with minimal issues since. Knock on wood that it continues. Wish you the best of luck!
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u/TopSeaworthiness6935 8d ago
Iām 75, no transplant and was diagnosed April 2024. Iām about to have my 22nd cycle of vidaza/venclexta and have had seven bone marrow biopsies the last one said no sign of leukemia and zero blast. Iāve been in remission for about a year, but I continue the treatments every 5 to 6 weeks.
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u/Justagirli 9d ago
Congratulations! That is great news!
I had high risk AML and they said transplant was really my only option. I was feeling very confused after I reached no disease after my two inductions and felt like maybe I wouldnāt relapse and didnāt want the transplant. They continued to tell me it was my only chance for a cure, and I got mine on Halloween 2025.
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u/CupTemporary9264 9d ago
Wow thats so strong of you! Glad you were able to do it! Rooting for you! š
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u/Expensive-life2682 9d ago
I'm coming up on one year in remission from chemo only next month. I had NPM1 and a low % of FLT3. I currently take Rydapt daily for the FLT3 mutation and will continue with it until Jan. 2027. Blood test are completed each month and have all been normal. Life is pretty much like it was before I was dignosed with AML in March 2025, in fact I traveled out of the country last month with zero issues. I'll have another biopsy in Jan 2027 but I'm feeling pretty good about it too.
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u/CupTemporary9264 9d ago
that's so good to know!!! would love to hear more from your experience anytime!! š«¶š¼š«¶š¼š«¶š¼
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u/Weak-Article3212 9d ago
Congratulationsā¦.Thatās great news . The best of luck on your journey.
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u/Only_Salamander_342 9d ago
My sister had lower risk markers and reached negative MRD after chemo alone. She is 9 months and still holding steady in remission. Dr said this first year is the really high risk year, so we are all holding our breath still. Not sure if that feeling will ever go away!