I have been diagnosed with pre myloid fibrosis, JAK2 positive, so what have I got ,not Essential thrombocythemia ('ET') not MF I am so confused, is there not a name for it
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Hi @Littleone, welcome to the Forum.
The confusion you’re feeling makes sense as pre-fibrotic myelofibrosis (which is what I think you’re referring to) sits in its own category, and because it can look very similar to Essential thrombocythemia ('ET'), the two can be tricky to tell apart. It’s part of the same family of blood cancers (myeloproliferative neoplasms, or MPNs), and the JAK2 mutation is very common across all of them. Our myelofibrosis information page also covers pre-fibrotic MF and might help.
If you’d like to talk it through with some actual experts (which I’m definitely not!), you can call our support line and speak to one of our nurses on 0808 2080 888, or email support@bloodcancer.org.uk.
Keep posting whenever you need to, we’re here.
Take care,
Ceri - Blood Cancer UK Support Services
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Hi @Littleone and welcome to the forum.
It can be so confusing can’t it. I like to know exactly what I have and where it sits so I understand your frustration.
I think it would be useful to give the helpline a call as they may be able to help.
How are you doing at the moment? Diagnosis can be a difficult time as it’s a lot to process.
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Hello there @Littleone, welcome to the forum. I’m glad you found us!
All this really is confusing, I feel for you. In 2023 I was also diagnosed with the JAK2 gene mutation, which people with Myeloproliferative neoplasms ('MPN') often have, like dear @Ceri_BloodCancerUK says. I went onto being diagnosed with Polycythaemia vera ('PV').
To be honest, I hadn’t heard of Prefibrotic Myelofibrosis before you joined the forum, it sounds like it’s similar to Essential thrombocythemia ('ET'). Here’s some information about it researched by Blood Cancer UK: What is myelofibrosis? | Blood Cancer UK
Here’s information about testing for Myelofibrosis (‘MF’) which gives an idea of the kinds of testing you might expect: Tests for myelofibrosis (MF) | Blood Cancer UK
Here’s the Blood Cancer UK information about Myeloproliferative neoplasms ('MPN') for when you fancy reading more about our family of blood disorders: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I wonder if you have the contact details for the doctor who diagnosed you? You could contact them directly to ask for more details when ready. I always keep a notepad nearby these days as there’s bound to be lots of medical language used by our specialists. I’d also suggest having a loved one with you during appointments to help take notes and offer support.
Once you’re sure what you’ve been diagnosed with I bet it’ll feel a bit less confusing. It helped me get some ideas of ways to deal with my diagnoses once I could read about what to expect.
Do please let us know how you get on @Littleone.
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I spoke to the doctor and she said I have pre myloid frombosis and I asked ( as I have read) if she could tell me life expectancy and she said No 2 medium if that means anything to anybody x
Hello @Littleone and thank you for sharing. I think it is myelofibrosis that your doctor is talking about. Hopefully it will encourage you to know that I have lived with myelofibrosis for over thirty years. I was diagnosed at the age of thirty five. Much more is known and understood about this blood cancer these days and there are many more new treatments for it. I have learnt over the years that it seems to be a variable condition and no two patients are going to be exactly the same. You refer to it as ‘pre myloid frombosis’ but, as I say, I guess it is actually myelofibrosis. Anyway, I am happy to share my experiences if it would help you, but obviously I am not a doctor and can only speak from the perspective of a fellow patient. Thinking of you and wishing you well. Willow x
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Thankyou so much Willow and that is very encouraging news, I accept that no two people are the same but here’s hoping x
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