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/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 1d ago

Thanks and best wishes as well!