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Will ET Ultimately Always Progress To PV.

A myMPNteam Member asked a question 💭
Wilkes Barre, PA
May 7
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A myMPNteam Member

No. ET will not inevitably progress to PV or any other MPN. The vast majority of people with ET will always have ET. Having said that, i am one of the people who di progress from ET to PV. I was diagnosed with Et over 30 years ago. It progressed to PV about 11 years ago. Note that in addition to the JAK2v617f mutation, I have a non-driver mutation (NF1).

There are a number of factors that can influence progression. The issue is complicated by the fact that some people diagnosed with ET actually had PV all along (Masked PV). It is important to consult with a MPN Specialist rather than a regular hematologist to ensure an accurate diagnosis and optimal treatment.

All the best.

May 7
A myMPNteam Member

Progression to MF is more likely with PV than ET. Still, most people with PV will not progress to MF.

Note that you cannot have both PV and ET. You have either one or the other, or possibly MPN-Unclassified. You can have PV with both erythrocytosis and thrombocytosis (and possibly leukocytosis).

Good news that you are relatively stable and only needing a rare phlebotomy. I am on a similar plan with Besremi. I am averaging about 1 phlebotomy per year. Betternews, I feel better now than I did 10 years ago.

Wishing you all the best.

May 9
A myMPNteam Member

For someone who has been dealing with this for a long time, imo, I don’t think so. There are definitely similarities. I was diagnosed with ET in 2008. In 2016, my hematologist said I was progressing to PV. However, when I did my research, I had my doubts. the only number that was increasing were my platelets. My hemoglobin was dropping and I became anemic. My Hct was normal. I eventually found my way to a mpn specialist who did a BMB and extensive bloodwork and she diagnosed me with MF intermediate 1. Based on my records, she said I never had PV.

May 7
A myMPNteam Member

From my experience of reading and connecting with people who have an MPN, I say no. That being said,
I was diagnosed with ET in 2007. I now have grade 2 reticulin fibrosis so my progression is towards MF. I wonder how the percentage of ET people progress to MF compares to those that progress to PV.

May 7 (edited)
A myMPNteam Member

Not sure Mark, am seeing my hematologist next week and will ask that question and let you know, Antoinette (Ireland)

May 7

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