u/LeastFlounder5718

My brother 's mds has become AML with many high risk mutations post sct 9 months.When he relpased with 10% blast on marrow he was given DLI with aza ven and later he was given second dose of DLI but he had 25 % blast in blood after that. So his relapse was full blown.

Currently he is being given a regime containing clad+ etoposide+ cyclophosphemide. Which might have chance to control the disease.

I want to know can his second sct be avoided, our Dr is saying to for haplo with father (55 age) . We don't have time to look into registery. Can DLI or any other things cure him id disease burden become very less with this regime

My brother relpased post sct 9 months. His MDS transformed into AML. He had a matched sibling transplant with gvhd even after AZA + DLI after molecular relpase.

He has many high risk mutations like ntas, dnmt3a, ptpn11, runx1, asxl1, ezh2 and 25% blast in blood.

Dr are not sure which chemo to give him for disease Control before second sct as most of things already tried pre sct last year like FLAG-ida, 7+3 , Aza- ven, decogen- ven even DLI post sct.

Dr said he has been exposed to all available options.

They proposed a regime - cladrabine + etoposide + cyclophosphemide .

Please let me know if any one had this regime to control. What are it's side effects on patient and how harsh it is.when count recovery happened for this. What did you had after your relapse post sct.

My brother 's mds has become AML. Earlier he had four mutation when he relapsed post sct 9 months but after giving two escalated dose of DLI with azaven. He is now having 40% blasts in blood. There are two new mutations also present in his ngs report.

He now has - nras, ezh2, asxl1, runx1, dnmt3a, ptpn11 mutations with mds nature with AML behavior.

Drs had said that haplo is the only way left for us but even with that relapse risk is a lot. My father age 54 is the doner since we don't have any more siblings.

The biggest challenge for drs is to control the disease before SCT. But many chemo regimes were already used pre SCT so they are not sure what would work for him. Already Used regimes before SCT are

- 7+3+midostaurine

- AZA +ven

- Decitabine +ven

- Flag ida

Post SCT

DLI + AZa +ven

They said that they are thinking of using this regime Cladrabine + etoposide + cyclophosphemide for him to control the disease before sct please let me know if anyone has any experience with this regime how this worked for them. Even drs have not used this.