@nohrt4me As we have learned, MPNs can affect us all differently. After my ET diagnosis at 50, it was 18 years later before I was diagnosed with Secondary ET Myelofibrosis after my routine 6 month CBC showed my hemoglobin level at 6.4. When I got a second opinion at MD Anderson, my doctor there told me that my conversion was not surprising given the length of time I had ET. I ultimately had an allogeneic SCT at age 69 in October 2024.

Before my SCT and probably 30 transfusions to manage my anemia, I took the blood test results I had accumulated and prepared a spreadsheet of results in chronological order. While my platelets were kept in the normal range during my ET journey with anagrelide and then Jakafi, I noticed from my spreadsheet that during the last 7 years before my SETMF diagnosis, my hemoglobin levels had been in steady decline. Because my platelets were under control, I rarely saw my hem/onc, instead seeing his NP. I was never alerted to the decline in Hgb during my 6 month checkups. I am not sure it would have changed my treatment, as I was already on Jakafi. Maybe it was just a watch and wait situation.

Was my steady decline in Hgb an indicator of my ultimate conversion - I don’t really know. My then hem/onc left the practice right before my SETMF diagnosis. I had not had a bone marrow diagnosis during that 7 year period of decline, which would maybe have been the real indicator.

All of that said, you might want to track your HGb levels for any noticeable decline. And, maybe more frequent BMBs.

Good luck to you!