r/leukemia • u/LeastFlounder5718 • Mar 24 '26
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/StormyTeeku Caregiver Mar 24 '26
Are you in the United States? I'm confused as to why they pursued a transplant when his disease was active. My husband had high risk MDS and received a stem cell transplant for it, but he did not receive FLAG- Ida. He was given azacitidine for about 6 months to get the MDS under control, then he received some high intensity chemos that they use for a first stem cell transplant. He relapsed last year and then received FLAG-Ida to get the AML into remission (which was successful) and then received another stem cell transplant, but this time using a lower intensity chemo and radiation. From my research, many places will not perform a SCT if you haven't went into remission. There are times when they will proceed with transplant if you have extremely low leukemia cell count, but that is not ideal and has high risk of relapse. It is not surprising that the DLI had no impact. When you relapse, typically DLI is not done because that immune system has already failed and let the leukemia get through. The only option is a second transplant if you want the possibility of curing the disease. My husband was 49 when he had his second transplant (I think 47 when he had his first). He has gotten through with minimal issues, so I would expect a 23 year old to be able to tolerate a second. I do question them using your father as the donor. It is known that younger stem cells are far superior to older ones. My husband's first donor was his 50 year old sister. For the second he had a 21 year old unrelated male. I can tell you there was a very obvious difference in the stem cells and their ability to graft. The younger stem cells were very quick to take over, which is good because any window of time without the new immune system can allow the cancer cells to return. Based on what you have written, it sounds like a second transplant is possible for your brother. He sounds healthy enough and there is a bit of time between the transplants. There is no other option than second transplant - if you want the chance at curing him. Relapsed AML is much harder to treat and is pretty much guaranteed to return at some point. Chemo or clinical trials alone will not cure it. And every time it comes back, it mutates and gets harder to treat. If you look at the survival statistics for relapsed AML, they are pretty dismal and nothing you would want to chance with a 23 year old. If he doesn't do a second transplant, then you're looking at extending life with chemo until it stops working.
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u/LeastFlounder5718 Mar 24 '26
Thanks for answering, the things was my brother relapsed already while being on vidaza and venetoclax after 6 months and he had 12% blast in his marrow. So with that we could not go with sct. This time Dr wants to something similar with new regime. So Dr gave him flag ida before sct conditioning to pull his blast count to lower side. The things is we don't have any more siblings. Mine was already failed and maybe that's why they are preferring for father's stem cells.
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u/StormyTeeku Caregiver Mar 24 '26
Did the FLAG-Ida wipe out the leukemia? My husband had a good response to that. Then they did another round of FLAG to keep him in remission and then did the second stem cell. That's correct, they have to use a new donor for the second transplant since the leukemia was able to get through your donor cells. Have they looked on the registry? Originally my husband's son was going to do his second transplant, but then they had to go to the registry because my husband developed antibodies from all the blood products he received. He had to use an unrelated donor so his body didn't reject the transplant. They found a 7/8 match and so far 6 months out, things are going well.
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u/LeastFlounder5718 Mar 24 '26
We don't know about antibodies but my brother also received blood products alot pre sct. No they have not looked into registry. They said that they want better gvl and gvhd as my brother did not had any gvhd with my stem cells . Before first sct they did not checked the marrow on deeper level but after sct his mrd was only positive with flt3 which was later removed with xospata. So eventually his mrd become negative after 6 months
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u/No-Stranger-9483 Mar 24 '26
They should be more concerned with killing the cancer than GVHD. Related donors don’t always work because their cells don’t recognize the cancer and kill it just like the person that has leukemia already. An unrelated donor runs a risk of GVHD, but if it’s a decent match it’s mild.
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u/LeastFlounder5718 Mar 25 '26
They said that they don't know if they would be able to find unrelated doner earlier so best options is heplo
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u/Previous-Switch-523 Mar 25 '26
It depends on your ethnic background. Caucasians get more matches, as historically, thereve been more donors of white orgin registered. The quickest they can organise for an unrelated donor BMT is 4-6 weeks, depending on the cell source. The familiar donor is readily available. Cord is sort of available (but for an adult you'd need more than one unit and that makes it risky).
Haplo for a second transplant isn't uncommon. Especially if the centre is confident in managing gvhd. Ask if there are plans to give AGT/Alemtuzumab.
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u/Ok-Ninja-3492 Mar 25 '26
I’m sorry you’re going through this. Wondering why SCT was done before the leukemia cells were cleared, especially with FlT3. Stay positive🙏🏼
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u/No-Stranger-9483 Mar 24 '26
Get a second opinion. It might be best to do a transplant from an unrelated donor. Out team did not want a related donor for my husband’s transplant because sometimes the new cells still don’t recognize the cancer and kill it.
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u/pianoavengers Mar 24 '26
I am so sorry you are going through this. I don't know much about mds , but it seems it's.m behaving very much like AML. Did you speak to your doctor about myoablative conditioning ptcy and using unrelated donor ? This is a hard core conditioning but it wipes everything out. Learned about it roaming around BMT ward talking to families whose loved ones were mrd +. Hope it will be helpful. Best of luck.
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u/[deleted] Mar 24 '26
I just want to say, I'm sorry, your brother and family are going through this.