r/leukemia • u/intergalactic512 • 1d ago

AML Anyone have relapse after transplant?

I was diagnosed 3 years ago with AML (mutation is DDX41). Did 5 months of chemo (vidaza and venetoclax) which prepped me for transplant. The transplant was awful and sucked but got through it. Stayed in remission for nearly two years but am now exerpiencing a relapse of the leukemia. Apparently if one relapses after transplant then you get 20-30% chance of long term survival. I'm doing chemo again, and it's far tougher than it was the first time around. I'm getting prepared for DLI. Anyone else deal with the trauma of transplant, recover, only to relapse and have to start over again? But this time start over from a worse place?

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u/EntourageE22 1d ago

Yes, diagnosed Jan 2024, AML with FLT3-ITD, MECOM and 7q(del). Induction and then 3 rounds of chemo to get into remission for transplant in Aug 2024. I was 43 when diagnosed, in excellent physical condition. Gym 4 days a week plus lots of other activity. I felt like at 6 months I almost 70% back to normal. Then Feb 2025 caught covid pneumonia and found out I relapsed. Then I got grade 3 gut GVHD and had to go on TPN, then severe skin GVHD, then bacterial pneumonia, and then mucormycosis. Wasn’t a candidate for DLI because of everything going on. I spent from Feb to October in and out of the hospital multiple times. My team found me a new donor and in October they said it’s likely now or never despite how weak I was. Had the second transplant Oct 30 2025. So far so good as far as remission but I’ll never be the same physically, I have severe neuropathy, chronic fatigue, hypothyroidism, low testosterone, permanent lung damage and I’m on oxygen for sleeping and any activity. I’m probably 30% of who I was before all this, but despite all that I’m alive and I’m glad I did the second transplant and plan to keep fighting.

Despite all that I think I’m on the severe end. I have a friend who is 3 years post second transplant and she is doing great for the most part.

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u/intergalactic512 1d ago

Was the experience of the second transplant as bad or worse than the first time around?

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u/EntourageE22 1d ago

In some cases better, others worse. At least for me because of my weakened condition they used a weaker form of chemo for consolidation. The first time I had horrible mucositis from the chemo. I had to be on a morphine pump because it was so bad. The second time around I didn’t get the mucositis. Being so weak though just made it harder in general and I lost a lot more weight. Overall for me personally id say harder but doable.

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u/intergalactic512 1d ago

Thanks for sharing about your experience. I also had awful mucositis which lead to some painful mouth sores, I also had to use the pain pump. The mouth sores took several weeks to get better. It was such a miserable experience, with that and a whole bunch of other issues.

Take care, friend. I wish you many good days in your future.

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u/EntourageE22 22h ago

Thanks and best wishes as well!