← Return to MDS and Neupogen

Discussion
jeremy88 (@jeremy88)

MDS and Neupogen

Blood Cancers & Disorders | Last Active: Mar 1, 2019 | Replies (7)

Comment receiving replies
@shammer

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.

Jump to this post


Replies to "My original MDS diagnosis indicated a higher level of risk. My local hematologist suggested treatment with..."

We visited a specialist in San Antonio, Tx, and he raised her risk from low to moderate. Said it was based on a new formula. That set her back emotionally. We changed Onc's again because that one didn't seem to listen very well. He's a researcher and we were afraid that he was more interested in data than patients. That may have been unfair after just two visits but we now have one that's in the same city as where we live (short drive) and seems to listen and have compassion. Mind if I ask where your "mds expert at a center of excellence" was located?