ET Jak2 diagnosis

Hi all,
I have recently been diagnosed with Essential thrombocythemia (ET) Jak2 which is an Myeloproliferative neoplasms (MPN). My platelet levels have ranged between 700-900 and i have been prescribed aspirin. They have advised this medication wont change till my levels reach 1500+. Theres 2 things coming up which are scaring me and i have reached out to my haematology consultant but i just wanted to hear others opinions and experiences that suffer with this or something similar.

  1. I am being referred for partial hysterectomy due to an endometriosis encased cyst. With every surgery there is a risk of clotting but add in my condition, the risk goes even higher. Has anyone has this surgery?

  2. I am flying to Australia in August and i will be there for 2 weeks so thatll be 4 flights totalling 49hours. Any suggestions to reduce chances of clots other than the obvious flight socks and regular movement?



Hi @Vdb88 great that you have found us and our forum.
Firstly I will attach the Blood Cancer UK information on Essential thrombocythemia (ET)
Essential thrombocythaemia (ET) - what is it, symptoms, tests and treatment | Blood Cancer UK
I have a different blood cancer, but I ensured that before I had a hysterectomy and bladder prolapse op a few years ago that the urological department were well aware of my blood cancer and my haematologist’s details. I also told the urologists at every opportunity. I also wore a Blood Cancer UK tee shirt as often as I could.
Sorry, I am not a flyer but perhaps doing suitable leg exercises whilst seated as well.
I hope others can share their experiences
Look after yourself and please do keep posting

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Hey there @Vdb88, welcome to the forum. I’m so sorry to read of your diagnosis with Essential thrombocythemia (ET). I was diagnosed last year with a similar Myeloproliferative neoplasms (MPN), Polycythaemia vera (PV), after a blood test found I have the JAK2 gene mutation like you.

After a heart attack many years ago I was prescribed daily aspirin and so far so good, no more clotting incidences or any aspirin side effects. It’s meant to be tolerated pretty well in the long-term.

I’m sorry to read of the partial hysterectomy you’ve been referred for, that must be an entire other level of worry. While I don’t have a womb, I have shared your concerns about long-distance travel. I was going to fly a similarly long way last summer, not long after diagnosis with Polycythaemia vera (PV), and actually decided against it due to the potential clotting issues. I just couldn’t face the potential complications should they occur mid-flight or at some random airport far away from home. That was separate from any insurance concerns which sound like a complicated, expensive nightmare.

While I’m not a doctor, I’d be concerned about travelling so far by air so soon after a big operation. I get the impression that any kind of healing when we have these clotting-related blood disorders can be slower and have added complications. Thinking about ailments and bumps and bruises I’ve had since starting treatment for Polycythaemia vera (PV) reminds me that it now seems to take longer to recover while knocking my immune system out of sync in between, like the basic RSV I had late last year that took weeks to fade, or a bruise from phlebotomy that was really colourful and sore for over a week. I imagine internal injuries from major surgery will take even longer to heal.

This is just my opinion, although I know how wanderlust can overpower logic or medical advice! What does your haematologist say?

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Thank you Erica, i have emailed my consultant and i am waiting for a response. The risk of blood clots following an operation is making me incredibly nervous. Ive had operations before, so the operation itself isnt worrying me but now with the Essential thrombocythemia (ET) its added an extra level of concern. I have also visiting blood cancer website and ordered a couple of tshirts and a pin for my work lanyard x


Hi @Vdb88,
I got diagnosed with Essential thrombocythemia (ET) on 10/1/24, which is naturally scary. Something that has given me huge comfort is this. I’m an insurance broker, so I plucked up the courage to contact insurers and see if I could still get life insurance with my diagnosis and treatment (Interferon Alpha and Rivaroxaban).
The answer is yes but with a premium increase, which shows that even insurers class Essential thrombocythemia (ET) as a chronic and manageable, relatively low risk condition whereas something as common as poorly controlled Type 2 diabetes will be refused cover. I hope this offers you similar comfort to me.
Take care,


Thanks @Warrenand welcome to posting very useful information.
How are you doing?
Look after yourself and please do keep posting.

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