Hi all I was diagnosed with Essential thrombocythemia (ET) JAK2+ earlier in the year and I’m new to the forum. I’ve recently had a pulmonary embolism and am now taking Enoxaparin twice daily until February ‘25.
I see my haematologist soon and I’m in a bit of a kerfuffle with the PE and its impact on future treatment. I was on Aspirin beforehand.
I’m looking to see if anyone can help me with any questions I could ask him.
Looking forward to hearing from you
Hi @Red I am so glad that you have found us, welcome.
It sounds as if you have a good basis for your questions.
Not exactly a question, but I always take responsibility for telling everyone about my diagnosis and treatments, that includes other clinicians, dentists, opticians, hairdressers etc.
As you say you will probably want to ask about the impact of your pulmonary embolism and medication might have on your Essential thrombocythemia (ET) and treatment now and in the future.
Options available now and in the future.
Prognosis
My questions always include my fears and practicalities.
I write all my questions down as my mind goes blank when I enter a medical environment.
I have learnt to be ‘pleasantly assertive’
No questions are off limits.
The Blood Cancer UK support line is there for you on 0808 2080 888
Look after and take lots of care and please let us know how you get on.
Hello @Red - sorry you have had a rough time lately - it will be good to have your haem appointment and be able to chat it all through in respect of the PE- you don’t mention if you have been on treatment yet for the Essential thrombocythemia (ET) so I would be asking about that with the consultant - looking at your pattern of platelet counts and now you have had an embolism is it a good time to start treatment and what options of treatment are suggested - as Essential thrombocythemia (ET) makes blood “sticky” and causes higher platelet cell production those two elements do put a higher risk on embolisms and can also contribute towards a decision being made for treatment starting so all of that is probably what you need to be talking about with the consultant - I have Essential thrombocythemia (ET) too diagnosed 18 years ago and been on various treatments since diagnosis so do feel reassured that treatments are good and for our benefit to keep us safer and work well over long periods of time so it’s not a negative if you do need to start treatment now - let us know how you get on
Thank you @Jilly20. I was on Aspirin before PE. I’ll keep you updated 
Thank you @Erica. Such a relief to have such support from others 
Hello there @Red, welcome to the forum. I’m really sorry to read of your diagnosis with Essential thrombocythemia (ET) and your recent experience of a PE, how terrifying! Glad you’re here to tell the tale.
Last year I was diagnosed with the JAK2 gene mutation and then Polycythaemia vera (PV), another Myeloproliferative neoplasms (MPN) closely related to Essential thrombocythemia (ET), so can perhaps empathise with what you might be experiencing now.
I remember so well how it felt after receiving the JAK2 test result as I’d read about what it usually related to, and in fact the period between that and being tested for and diagnosed with an Myeloproliferative neoplasms (MPN) was horribly anxious.
With some hindsight I’d say I got through the waiting in between tests and appointments by getting my anxiety out, expressing it in whatever ways that felt apt at the time. I did a lot of writing, furious hikes feeling sorry for myself, reading as much research as I could, and yet it was still very stressful.
Perhaps you have loved ones you can share the diagnosis with if you haven’t already? I’d say finding someone to talk to about this would help share worry. Finding this forum is a great step as there are plenty of folks here who know what you’re living with and going through who you can ask directly about lived experiences. Seeking therapy might help too, if it’s accessible where you are. Your GP can help refer you, and there’s plenty of private therapists available via BACP and Mind.
Maybe you’d like to read the Blood Cancer UK information about Essential thrombocythemia (ET) if you haven’t already, I think it’s well researched and written: Essential thrombocythaemia | Blood Cancer UK
Purely anecdotally and from a non-medical perspective but I’ve noticed others on the forum who live with Essential thrombocythemia (ET) plus another diagnosis and treatments still seem to match those for Essential thrombocythemia (ET), namely blood thinner (usually aspirin) and a cytoreductive medicine like hydroxyurea or interferon. The PE will likely have its own treatment running concurrent to that for Essential thrombocythemia (ET). I’m sure your haematologist will explain which treatment/medicine is for which health concern, but make sure to ask how long each may be prescribed, any changes to medicine dosages to expect, and maybe even how having the PE might affect long-term treatment for Essential thrombocythemia (ET).
Something my lovely haematologist told me that may give you some hope is that folks with Myeloproliferative neoplasms (MPN) like Essential thrombocythemia (ET) and Polycythaemia vera (PV) tend to live long normalish lives and pass away from something other than the Myeloproliferative neoplasms (MPN). We’re more likely to die with the Myeloproliferative neoplasms (MPN) than from it, which gives me hope at anxious moments.
Keep us posted about how you get on @Red now that you’ve found the forum. Thinking of you at this stressful time.
Hi @Red, I’m sorry to hear of your diagnosis & PE.
I have also recently been diagnosed with Essential thrombocythemia (ET) JAK2+ (mid August) a massive blow to me after spending 3 years really focusing on my fitness, following a heart attack in Nov2021. Which they initially said was likely Familial Hypercholesterolemia as my Dad had a heart attack at the same age, though I’m still awaiting the tests I was promised to see if my daughters may also be at risk…
Fast forward 3 years & they are saying the heart attack was likely due to my high platelet count which is visible on my blood tests at similar levels as far back as 2020. My previous blood test back in 2012 had platelets in the normal range so it looks like the JAK2+ gene mutation has occurred sometime between 2012 and 2020. Anyway, I had been on Aspirin since my heart attack in 2021 plus other heart related drugs and am now on Hydroxycarbamide 500mg capsules once daily with double doses Mondays, Wednesdays, and Fridays. The initial daily doses weren’t having quite the hoped for impact, lowering my platelet levels but not by enough. They have currently dropped to 500 but need to be below 400 to be considered in the safe zone as I’m considered “high risk” following the initial heart attack. Not high enough risk for my GP to do anything about these high platelet counts when I questioned him on them after each blood test and I was labelled as having “health anxiety”… nice one Doc!
So initially, when I was told this was a form of Chemotherapy and I read the list of side effects I was a bit horrified and thought the worst. The internet didn’t help matters. But Having had a fairly upsetting time of it in the 1st couple of weeks I’m now 8 weeks in and can honestly say so far the drug has had little physical impact on me. I’m still training really hard, I’m an endurance cyclist, I also do strength and conditioning sessions weekly, run and rock climb, and right now there has been no effect on this, if anything my numbers are currently on an upward trend. Maybe because I refuse to be beaten so I’m just pushing harder? or just the feeling that I have got something to prove to myself and to everyone who knows about my diagnosis?. I’m not sure, but I am hopeful that I can carry on pushing myself and the numbers don’t start going the other way.
I run a business and work has coincidently been quiet since all this kicked in, normally I’d be beside myself with worry about this but having this diagnosis does make you realise there are more important things in life so I have been a little selfish and put more emphasis on myself and my exercise regime. Every time out on the bike or out running with my dog I am just so grateful that I can still do this, it certainly helps you put things into perspective. Thank god I have a very supportive wife!! She’s been a lifesaver.
Anyway, I guess I just wanted to share my experience so far, to say don’t be scared to do everything you used to do or still want to do. And also try not to worry too much about whatever drugs they put you on. There will be good reason for their choices, and they can always change paths if they are not right for you.
I see other people with the same condition are on different drugs to me and that makes me wonder if I’m on the right thing, but thats just a question I will take to my next Haemo apt early November.
Take care & be good to yourself.
Dave
Hi @DavidG welcome to our forum and great to hear a bit about you medically and your philosophy for life, although to me your fitness routine seems gruelling.
You also show what unique complex beings we are.
Please do let us know how your appointment goes in early November and what answers yoy get to your questions.
Yes, take care and be good to yourself