Hi Everyone

I'm new to this so not quite sure what to post.

I was diagnosed with ET and JAK2 in August 2021 which came as a shock as my GP had told me for over a year that my platelets had been rising but it was nothing to be concerned about.  I'm so pleased I got a second opinion and requested a Haematology referral.

I started weekly Interferon (45mg) in Sept 2021 as there was high risk of me having a stroke (I had strokes in 2008 and  2017 due to having an ASD).

My platelet count is climbing so I've been increased to 90mg.

I've been having tingling in one hand and finger, awful migraines, itchy legs/feet at night and feeling tired nearly all the time.  Does anyone experience the same?

I've told my friends and family and they've never heard of it so they think I have Leukaemia.  Sadly some friends have not not been in touch since.

I have been reassured by my haematologist that ET will not turn into anything sinister but when reading online it could potentially progress to Leukaemia.  Does anyone know if this is possible?

Regards

  • Hi and welcome to this cornet of the community. I don't have ET but have lived and been treated for a rare type of Non Hodgkin's lymphoma for over 22 years.

    It is all very confusing in these early days especially with a condition that not many know anything about but lets look for some of the other group members with ET to come along and give you some support.

    I have been reassured by my haematologist that ET will not turn into anything sinister but when reading online it could potentially progress to Leukaemia.  Does anyone know if this is possible?

    THIS is a link to some Macmillan Information about ET and there is some information that my help you understand this condition better.

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

    Always around just to chat.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi

    Sorry that you've joined our number. I had the same diagnosis in 2019 after a blood clot. I've spent three years explaining that not all blood cancers are Leukaemia. Some of my friends did have a little trouble knowing what to say after my diagnosis but I think that those worth keeping will find a way.

    I have found that Blood Cancer UK has the best website for information, but your consultant really should answer your questions. As I understand it, we have an increased risk of Leukaemia and Myelofibrosis, but only about 5% chance of developing one of those. That is the same as the population average chance of getting bowel cancer so it shouldn't be a cause for worry.

    I have more frequent migraines than before this illness and fatigue seems to be an ongoing battle for all of us.