Anxious

[Family-man]

Hi there.

[Jlah]

Hi family man. Are you ok? Jx

[Tico]

Hi Family-man. You don't say why your anxious? Is their anything worrying you in particular? Atb, tina.x

[Lifam]

Hi, what made you anxious? Are you ok?

[Family-man]

I’m 43 years old. Just diagnosed with ET. Waiting for JAC2 status. Platelet count was incidentally 511 during a routine health check. The rest of CBC was entirely normal. I have some numbness and tingling in the hands and feet. No other symptoms. Did you guys undergo bone marrow biopsy? What’s the prognosis like with my condition. Entirely unexpected since I’ve lead a very healthy lifestyle, mind you, I’m an interventional cardiologist, so my work involves radiation exposure.

[JOG1976 in reply to Family-man]

Hi Family-man my name is Jayne and I am 44 and have ET, CALR positive. My platelets are currently 1365. I only take aspirin and I am closely monitored because of the high platelet count.

Try not to worry, the biopsy really isn’t that bad, feels weird but it’s fine and is a fairly quick procedure.

Jayne xx

[mhos61]

Hi, I was diagnosed with ET based on a positive Jak2 test. Like yourself, my increased platelet count (500) was picked up on a random blood test.

In 2016 WHO made changes to the former criteria of having a bone marrow biopsy from a ‘minor criteria’ to a ‘major criteria’ for a diagnosis of ET. This is basically to differentiate true ET from Pre- MF. Not every haematologist follows this advice though, including mine.

I take hydrea, as I was aged 60 at diagnosis. You’re young, so aspirin alone is probably the only medication you will be prescribed, unless you have high counts (you don’t), certain comorbities or, are particularly symptomatic.

ET has a good prognosis in the majority of cases, as long as you’re monitored well. However, it would be worth your while having a consultation with an MPN Specialist.

Take a look at the following link

mpnvoice.org.uk/

[Mazcd Partner MPNVoice]

hello Family-man, welcome to our forum. We all completely understand how you are feeling, it is very scary when you are told you have a MPN and then waiting for further test results. I would suggest that you read as much a you can on our website, I see that mhos61 has given you the link, you will find lots of information on there which will help you understand more about ET. It is very difficult coming to terms with a diagnosis of ET and wondering what the future holds, but as you will see from the lovely people on this forum, there are many many people who have a MPN, and we are all here to help and support you. I myself have ET, I was diagnosed in 2003 and currently take Hydroxycarbamide and aspirin every day. Take care and best wishes, Maz

[PrinceA]

Hi there, so how the DR made the ET diagnosis ? you said you are still waiting for JAK2 status? as my understanding there could be other reasons that would cause elevation in the platelets . I'm as well, during routine exam my platelets were little bit elevated and I tested positive for JAK 2, still trying to get some answers myself and waiting to see MPN specialist. Hope all turns well with you.

[Family-man]

Thank you guys for all the comforting words. My platelets were 403 in may 2018 and the most recent count was 511. The rest of my CBC counts are entirely normal. The haematologist made a diagnosis of ET on the basis of increased platelets number on the blood film. My spleen size and texture is entirely normal too. Other secondary causes of thrombocytosis have been ruled out. I’m considering a bone marrow biopsy at some stage. The ET diagnosis is petrifying as one reads more into it, especially with pre MF etc. I have a young family and can’t help feeling anxious about this entire situation. I’m sure time will heal.