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I had my first bone marrow biopsy in 2007 and the second in 2012. My oncologist at that time told me that I had TLGL, which is a T-cell large granular lymphocytosis (a form of chronic leukemia). She did not tell me that the low-risk myelodysplasia was showing up at that time. She was only interested in watching my neutrophils. We now have an oncologist in town so I took it upon myself to get another opinion. His diagnosis after another biopsy was the myelodyspasia, or MDS. I believe I have had this disease for many years dating back farther than 2007 because for as long as I can remember, my blood counts, especially my Hgb and rbcs have been low. I only remember one time that my Hgb was 10. For the most part, it has been 9.9 and below with the lowest being 8. I have had 4 Aranesp injections with no real change in my counts. I too get more tired than I used to but that is probably contributed in part to getting older (72 this year). I still work as a school secretary when my services are needed as it gives me something to look forward to. I see my primary care doctor in May and hopefully I will have some more answers.Marcy BohannonParticipant
I was diagnosed with MDS in December by a bone marrow biopsy. That was my third one since 2007. The MDS was showing up slightly in my earlier biopsies but I was not told about that. I just found it out when I was reviewing my old biopsies, 2007 and 2012. My white count has always been low, with the lowest being 1.1. It is now 3.3. My red blood cell count is 2.7. My hemoglobin is 9, up from 8.9. I have pancytopenia – low white cells, red blood cells, and neutrophils. My neutrophils are 20. I am getting Aranesp injections every 3 weeks. The first one improved the levels a bit but after the second shot, they are back down again. Just got my third injection. Since EPO injections and stem cell transplants are the only treatments, I am very concerned, especially since I may have had this disease for many, many years.