Anyone have MDS too?

Has anyone else been diagnosed with MDS? (Myelodysplastic Syndrome) A side effect of MDS is chrinically extremely low platelets. My dad was diagnosed with MDS (mild) with 3.5% blasts in his bone marrow biopsy. His platelets are 10 now and we will be doing Nplate next, if needed. But that's for ITP and we are doing it. So I'm confused and just wondering if anyone else was diagnosed with MDS with super low platelets. Anyone else in the same boat?

3 Replies

  • I have cmml, chronic myelomonocytic leukaemia. Classified as mpn/mds overlap syndrome. It has a tendency to bring on autoimmune disorders. I was diagnosed with cmml type 1 last summer, after a year of testing. It is very difficult to diagnosticise. Along with cmml I got Polymyalgia Rheumatica and ITP. My only treatment so far is Prednisolone for the ITP and polymyalgia. My haematologist won't give me N-plate, as it might exacerbate the cmml. (Cmml sometimes developes into AML, acute myeloid leukaemia.)

  • Thanks for responding. I hope the pred is helping with your platelet levels. It didn't do much for us but is apparently maintaining the red cells. Platelets are the problem...

  • I have been diagnosed with Idiopathic Cytopenia of Undetermined Significance. 80 percent chance that this will eventually develop into Myelodysplastic Syndrome from what I have read. My understanding is that there is a latency period that can be a few years or decades. My platelets remain stable in the 45 to 65 range. So far I have avoided any steroids or any other treatment. Have an appointment with a cancer specialist in two weeks for further discussion and plans. Been watching diet closely and eliminating foods or beverages that could cause problems. Just read that coffee decreases your hemoglobin. I stopped drinking coffee six weeks ago and last blood test two weeks ago hemoglobin increased from 11.4 to 12.4 - have also recently eliminated all dairy and fruit juice from diet which is supposed to help platelets. See what happens with next blood test in two weeks. Other than fatigue I feel great most of the time other than the aches and pains of someone who is 70.

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