Post PV Myelofibrosis - One Year Update

[marlenablue]

PV diagnosis - 2010Post-PV MF diagnosis - 2022

Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s, red blood cells almost 6 and white blood cells were 17,000. I need a phlebotomy due to a high HCT! Perhaps others can understand that I find this comforting - to go back to results I experienced before this latest diagnosis. Anyway, I'm finding peace that my drop in counts was due to Besremi and not quickly progressing MF. I do not know what my journey will be like in the future but I will try to avoid the catastrophic thinking that I indulged in this past year.

[saltmarsh]

Appreciated your comment about catastrophic thinking. I do that to myself every time I go for monthly blood work. Really glad you found some solace in your numbers. It is an interesting journey and I wish for you good "numbers" as we get into 2024.

[marlenablue in reply to saltmarsh]

I wish you good numbers too, saltmarsh!

[hunter5582]

While the progression to MF is disconcerting, it is relieving to hear that the progression is not as bad as you were thinking. There are expanding treatment options for MF. Wishing you success in finding the right path in this stage of your journey.

[lizzziep]

I think we all have the “thoughts” and scare ourselves, I’m afraid I do it far too much.

[KLCTJC]

I completely understand the “catastrophic” thinking. I stress myself out for what my husband says is nothing. I dissect even the labs they say are fine but I know they aren’t normal for my age. So I get it. I am trying to be more like the “stoics” and live for today. Another thing my husband turned me on to. The future I think has changed to no longer be something I look forward to but something that scares me. So I get it and I have to work hard everyday to change that! I pray a lot and I am so grateful I have today. Will add you to my prayers, but you are not alone. I hope you have wonderful holidays!!