I was looking at what Maz posted 8 days ago about fundraising update March 2017, and I was looking at someone's justgiving page, they are 50 and said they have ET. They had a bone marrow biopsy in January and the good news is they have stage 1 with a lifespan of 10-12 years but if they had stage 2 would have meant 1-2 years. I have ET and was never told this. I would be interested to know if other people with ET was told this.

21 Replies

  • I have never been told any of this, mind you I have never had a BMB. All I have been told was that I would go on to lead a normal life span, and I intend to go on for many more years yet I am 67 we'll hopefully 😁

  • Hi Hannah, I myself have ET, I was diagnosed in 2003, I have been on Hydroxycarbamide since 2009, I am now 57 (don't know how that happened!) and I have every intention of being around for a long time.

    The advice we have in our booklet is that your individual situation and health history as well as the ways you respond to treatment can all affect your prognosis, the predicted outcome of the disease Your haematologist will be able to provide you with a more accurate picture. In general patients with ET without severe clotting or bleeding complications have an excellent chance of living out a near-normal life span if properly maintained and treated as necessary.

    I hope this puts your mind at rest. Best wishes, Maz x

  • Thanks Maz

  • I realise there's probably some form of natural progression in ET, albeit a very slow one - but this is the first time I've heard of stages and associated life expectancies?

    Mary x

  • Hi all , no i have never heard or read anything about life expectancy being shortend . or stages, but it would worry me if i heard this myself ,having ET and jak 2poss but i havent had Bmb yet i have had ET Only Just over 3 year im in my 60s

  • I also have not had a BMB. I was very surprised when I read this on the persons just giving page.

  • Interestingly, I've just been reading up about Essential Thrombocythemia on 'The National Cancer Institute' website under the heading, 'Chronic Myloproliferative Neoplasms Treatment.' It covers all the MPNs - so if you click on Essential Thrombocythemia and read 'Disease Overview' and criteria it states ' There is no staging system for this disease.'

    Mary x

  • Thanks Mary I will click on to that. I wonder if anybody else has read her story because she said her specialist is one of the team that discovered the mutation.


    I hope this is the link....not that tech savvy.


  • Thanks Mary

  • Thanks Mary I've just read this and it said there is no staging system for this disease.

  • Hi

    The internet has useful information, but one thing i found out when i was diagnosed was, firstly - I'd be a gonner before i was 55 and secondly, i could live a normal life did that work? Well its just stats based on averages from decades worth of data.

    Considering most people actually dont get diagnosed with an MPN until they are in their 60's, to see that the average lifespan after that is like 10-15 years is hardly suprising. If you took data for non MPN patients from the past 100 years you would say for a person in their 60 their average lifespan would be erm 10-15 years.

    The 1-2 years i understand is for patients receiving no treatment, it does state often with an MPN if its not being monitored or treated then yes of course it could easily affect your prognosis over a short period of time.

    Of course no one has a guarantee, things progress in different ways with different people.


  • Hi Hannah I have early stage MF and I've been told my life expectancy is 10 years. I haven't heard that there is a life expectancy with ET.


  • Hey Janet, sorry to hear this, how old are you if you don't mind me asking? x

  • Hi I am 66 and was diagnosed last year. X

  • Hate to think anybody would do it but do you think they could have put that on their just giving page to get more donations? Horrible thought but who knows

  • Hi, I felt I had to reply. I am 72 and have ET. Last year I abseiled down St. Thomas tower to raise money for MPN. It was fantastic. I have been on Hydroxy since 2009 and was diagnosed in 2007. I am monitored regularly and work on the basis that I will die with ET not die from it. Live life and enjoy. All the best.

  • Wow you were very brave I could not do that.

  • Was it Jak 1 Positive first person had and Et jak 2 positive the 2nd person had as I have got latter but no one has mentioned this to me

    best wishes Nicki alias Stevengeorge

  • I think prognosis is very individual and unpredictable and, if possible, it's best not to worry about it. I was diagnosed with PV after a bone marrow biopsy at the age of 46 and that was almost 30 years ago. I am JAK2 positive. The main treatment I've had is venesection and I've had a good quality of life ( despite rosacea and itch) for all those years. I did have some sort of radioactive injection in the early days but I understand that was not really a good idea. Just over two years ago it progressed to probable Myelofibrosis- it can be challenging living with uncertainty but intend to be around for many more years.

  • I had two major blood clots leading to part of my small bowel being removed, yet I've not been told I'll have a shorter lifespan. I'm 50 and was diagnosed with Pre-fibrotic Myelofibrosis but non of the doctors think I should have any problems in future.

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