[Alicia44]

I posted last year after my husband was diagnosed with MDS in April 07. My post was regarding remission or misdiagnosis. From April to October 07 he had bi weekly blood transfusions and then in October his RBC started coming up and he remained well and needing no transfusions until a month ago (first of August). In total he has had 6 BMBs and no definite diagnosis. The initial diagnosis of MDS 5q- done in Dallas was changed to Lymphoma (at MD Anderson) but a repeat BMB said no it was MDS but not 5q-. Given no specific type but changed to high grade. Subsequent BMB was inconclusive, next one said low grade MDS and the one he just rec'd last week didn't give the doc a clue. Through all this he has never had any treatment because they were going to try something last year when his counts returned to normal. The oncologist said that she sees no dysplasia, no blast, no sign of Lymphoma but she is clueless as to what is wrong other than hypercellular bone marrow and has no idea how to treat it. He is now having a 2 units tranfused every week. Last year was 2 units bi weekly. The oncologist can't explain why his Hemoglobin returned to normal for 9 months with no treatment. Has anyone heard of or experienced this? He is 56 and has other health problems including diabetes, Hep C and Cirrhosis of the liver due to the HEP C. He has had the HepC since serving in the military over 30 years ago. His liver though 90% cirrhosis is doing ok at this time. The doc attribute this to the fact that he doesn't drink and has always been reluctant to take any meds that affect the liver. In 2005 he took Interferon for 6 months to try and cure the HepC and had to take Procrit then because low Hemo is a side effect of the two meds he was on to try and cure the HepC . The doc says there is no connection to the bone marrow failure ?????

Right now his Hemglobin goes down to around 7 between transfusions. His platelet count is not normal but not horrible either.. around 100,000. His WBC count is low.. I think the last one was 2.1. 18 months and 6 BMBs later we really don't know anymore than we knew in April of 07 when all of this started out of the blue.

Any advice or information is very much appreciated.