Myelodysplasia Support Group

The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified within the hematological neoplasms.

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Advice on non sibling transplant risks/timing

Hi,

I have MDS level 1 with only low platelets and no blasts etc. I have had low platelets for years but was just diagnosed 6 months ago .The counts vary from 29K to 65K now. I just found out my only brother is not a match. Should I take a chance with all the risks involved of getting a transplant with a non sibling before I progress to level 2 or higher??? I am very worried the Drs are looking to solve my problem and the minute a donor is found I will have to make a bad/ fatal decision. VERY WORRIED. Any advice from survivors or others in my situation?

Replies

Moore40
Moore40

Hi Sundco,

My sister was diagnosed with MDS at 41 years of age. She had a very aggressive form of MDS and was diagnosed with AML Jan. 2011 and was told she had to have a Stem Cell tranplant for survival. My brother and I both were tested and were not matches. They did find her a match on the registry and she had her stem cell transplant on May 5, 2011. She has had some bouts of GVHD (Gvhd of the Gut, eyes and skin) ; however, she has overcome most of the problems and is coming up on her 1 year birthday May 5, 2012. For the most part she is doing great. Every situation is different so, if you think you might go that route you might want to have them start looking for a donor on the registry. There are several individuals who have had stem cell transplants on the AML site. That support group might be good for you to review before you make a decision. I hope this helps and if you have additional questions please feel free to ask.. I will be praying for you-Sherry