ET and PV

Hello there @Helenw, welcome to the forum. Wow what an unusual diagnosis you have! Quite the double-whammy as either diagnosis alone is a big deal and both are rather rare from what I’ve read.

I was diagnosed with Polycythaemia vera (PV) last year and at a recent blood cancer conference that I attended MPNs such as ours were described by a specialist as being something of a family of progressive disorders, in that Essential thrombocythemia (ET) can progress (“transform”) to Polycythaemia vera (PV) which, rarely, can transform into myelofibrosis. This is a slow transformation over decades. Essential thrombocythemia (ET) can be considered “masked Polycythaemia vera (PV)” in some cases. There was no mention of us being able to have both types of blood cancer at the same time, but I am not a medical expert.

I’d be very inclined to ask for a second opinion if possible. May I ask what procedure was used to diagnose you? My Polycythaemia vera (PV) was found after a complete blood count caught the JAK2 gene mutation, whereupon I had a bone marrow biopsy to confirm the overall diagnosis. Bone marrow biopsies don’t always seem to be done or needed from what others on the forum have said about their diagnoses.

Anyway, I’m really sorry you have either of those diagnsoes, but you’ve come to the right place! Should you be interested, here’s my notes from the blood cancer conference: Northern California Blood Cancer Conference

Please keep posting. I hope you’ll find some answers to your situation!

1 Like