u/LeastFlounder5718

▲ 5 r/mds+1 crossposts

Second sct as haplo for my brother

in my previous post I told how my brother relapsed after 9 months post sct with nras, dnmt3a, runx1, ezh2 mutations. I talked with Dr he suggested for a haplo transplant with my dad.

I don't have option for clinical trials on the place we live in.

I tried to second opinion from another Dr but they also told same I am being hopeless now. I don't know what should do.

our Dr said he would give FLAG-GO as preconditoning chemo and later would do FLU+mel+ radiation to clear the marrow for second sct. but there is a lot of risk of VOD and organ toxicity. and then he would do second sct for my brother.

I don't know what can be. did anyone faced similar situation and how you guys were able to go through with it.

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u/LeastFlounder5718 — 24 days ago
▲ 5 r/mds+1 crossposts

brother relapsed post SCT

my brother had HR mds. he had sct last year in may 2025.he was given Flag ida pre sct. his sct was done on day 14 of flag as his disease was active. post sct he only had flt 3 positive which was later cleared with xospata.

he was on continuous maintenance with aza but after 9 months his mrd became positive on molucular level with same mutations that was there pre sct. he did not had any gvhd even after dli.

I don't know what do now everything was given to him .

he was given DLI last month but it had no impact . his reports showed 30% blast in his blood the day before yesterday. he had overt relapse now .

his muatations are Nras, runx1, dnmt3a, ezh2. Dr said there is not any targated drug for this .

Yesterday when we dicusssed this with Dr he said we don't have any option left. he said chances are very low to save him. he is only 23 years old. I don't know how much toll second sct takes on body.

when we forced he suggested very aggressive approach to eaither use CLAG-IDA or Flag-GO(which I don't know why he suggested as I read that is only effective with cd33 positive blast, correct me if I am wrong) .

he said he will start heplo sct conditioning on day 14 of regime with flu+mel + tbi. for this my father would be the doner.

I don't know if feels to far to be done and our family is in fear. I want to know if someone else also faced this similar.

does second sct with Heplo can be done for PT who relapsed in 9 months

what can be done ? is there any option left for him. we don't want to go to the route of second sct.

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u/LeastFlounder5718 — 27 days ago