Allogenic SCT for RAEB-2

[fmuto2000]

Thank you for sharing your experiences with MDS. I’d like to ask if anyone might be able to relate to our current experience. My wife was just diagnosed with RAEB-2. She’s 37 years old and otherwise very healthy and fit. We live in the Czech Republic. My wife’s first bone marrow biopsy revealed 18% blasts. We’re still waiting for the results of the second exam. Cytogenetic testing revealed a deletion (14%) on chromosome band 5q31. Also, AML-1 and MLL-1 were amplified (3xAML-1 in 20% and 3x MLL1 in 13%). The results of her bloodwork were mostly lower than normal but not extremely low so she does not need any medications or transfusions. Her doctor wants to move forward with an allogenic SCT next month. We are still waiting to see if her brother is a perfect HLA-match. If not, the procedure will have to be postponed until a suitable donor is found. Her doctor believes that the allogenic SCT is the best option for my wife as she is a younger patient and the disease appears to be clonal. I’m concerned because allogenic SCT seems to be a rather drastic treatment that carries significant risks. I would like to ask if anyone has a similar experience, particularly if they were treated for RAEB-2 with allogenic SCT and what to expect.

Thank you very much

[rar]

I had MDS RAEB2. I was diagnosed about 3 years ago. I was told 3 year survival rate with transplant was 30%, without transplant was 4%. I was 73 at that time. For a much younger person odds are better. 30 is a whole lot better than 4. I had the transplant with no real problems. Since then i have had problems with GVHD. My team of specialists are doing a pretty good job of mitigating the symptoms. I made the right decision about having the transplant.

Ray

[Author]

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