My original MDS diagnosis indicated a higher level of risk. My local hematologist suggested treatment with Vidazza. Before treatment she used neupogen to raise wbc. Multiple cbc’s indicated that neupogen worked but the effect disappeared after 2 days with wbc falling back to low levels. After visiting an mds expert at a center of excellence my risk level of adjusted downward to low risk and all treatment halted. I have not suffered any significant infections although my wbc hovers around 1.5 and anc is nearly always less than 500. I’ve asked my drs. why not neupogen on regular basis in my situation and they indicated the no indication of overall survival benefit, high cost and possibility of enlarged spleen/ evidence that long term use of neupogen in my situation could promote AML. I’ve been living life for 3 years post MDS diagnosis without issue. I have monthly cbc’s and annual bone marrow biopsies which so far indicate no progression of my disease.

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