Essential Thrombocythaemia

I know this is a grey area but I still not sure if Essential Thrombocythaemia is a form of Chronic leukemia or not.  Please could somebody clarify this for me.  Some say blood disorder other say cancer.

  • Hi,
    Are you still on this group? I have recently been diagnosed with Essential Thrombocythaemia and would like to talk to someone else who has it.

    Hope to hear from you :-)

  • FiBee said:

    Hi,Are you still on this group? I have recently been diagnosed with Essential Thrombocythaemia and would like to talk to someone else who has it.

    Hope to hear from you :-)



    Hi, 


    I was diagnosed with ET 2 yrs ago. Here to help if I can 




  • Hi Jojawi,

    Thanks for your reply. Im feeling so overwhelmed by this whole mess. Did you get overwhelmed too? Is this normal?

    I was in hospital for 4 weeks, and am now having to go back a lot, so far its been twice most weeks. Ive only been out of hospital 3 weeks. Was taken in to hospital for something else, but that was cleared after a couple of days, then it was for ET after, it felt so long, and I didnt even have any symptons, so it was frustrating not being able to be active and do stuff.

    Do you mind my asking questions? I have so many at the moment, and am interested if anyone has has similar chalenges to me.

    Thank you for replying. Maybe you know how much it helps to find someone else with the same condition as you? :-)

    Very best wishes

    Fi x

  • I too have just been diagnosed with ET but am much older than you.

    I hope MacMillan won't mind but could I recommend that you look at MPN Voice and their online support group at https://healthunlocked.com/ . You will find people there who also have ET and other associated MPN conditions and there is always someone around who is in a similar position as yourself.

  • Thank you i have had a look on the website .. how long have you had ET?

  • Sorry, only just seen your response.

    I was diagnosed 6 weeks ago but from my symptoms, which are minor, I think I may have had ET for about 3 years.

  • HI CassieSen

    What medication are you on. I've been put on Anagrelide and aspirin but getting headaches and palpation's.  Consultant said if I'm still getting them in 2 week's he'll changed my medication. X

  • I'm on 75mg Aspirin and 500mg Hydroxycarbamide as I am over 60. I do get a very slight headache which I'm not used to as I've never suffered from them in the past. However, they're not really all that intrusive.

  • Hi CassieSen, last few weeks haven't been good, my diverticulitis has flared up which raised my platelets, consultant said Anagrelide will aggravate it. Headaches have eased off but plenty of palpitations. Hope all is ok with you x

  • Hi I have just been diagnosed with ET

  • Hello Debbo - I would say 'welcome' but I guess none of us really wants to be here.

    I'm no expert on ET as so far I am very fortunate in not experiencing many side-effects either from the problem or the medication (which, in my case is hydro-carbamide and baby aspirin).  May I suggest you pop along to https://healthunlocked.com/ and their MPN Voice Community where you will find lots of people all experiencing the same health concerns and more than happy to help where they can.  

    The other site I thoroughly recommend you reading through is http://www.mpnvoice.org.uk

    as it is full of useful information about our condition.

  • Hi there,

    If you've got any problems or need any help, remember you can email community@macmillan.org.uk and we'll be able to help.

    Jess

    Macmillan Community Team

  • It is a blood disorder that in most cases can be controlled. 

    However it is still a form of bone marrow cancer,  but not chronic myeloid leukaemis which is to di with the white cells in the blood.

    Thrombocythaemia is too many platelets, also they are not prooerly formed,  they are rogue cells. They cannot do their proper  job.

    Without treatment we are liable to bleeds/stroke or clots - heart attack oy emboli.

    When I was diagnosed in May 2017, I was very shocked as I had been ckeared and discharged at another hospital the previous year.

    Bone marrow biopsy confirmed the diagnosis.  I didnt believe the consultant at first but quickky came to the realisation that he was talking sense,  when he said I had to go on chemotherapy  straight away.

    They put me on Hydroxycarbamide 500mgs daily with 1000mgs Sat and Sunday.

    At first after the disbelief had gone I was very scared, then I got angry. 

    I am still angry,  I cant believe it was missed, I cant believe its something else gone wrong with me. I get angry at everyone even God, though I know he has nothing to do with it. I am grumpy all the time.

    Anger and grumpiness is not part of my personality.  Its all very strange.

    I trust the science and the medication but Im still angry.

  • Hi Laraine

    I had a similar experience, i had been under the hospital for 2 years when i suffered a blood clot on my brain and was subsequently diagnosed with Polycythemia Vera. This was 5 years ago so its disappointing to read that Dr's aren't routinely screening for these MPN's which is a simple full blood count. I have also found that most Dr's know very little about these cancers. 

    Stay strong & positive xx 

  • A was dignosed with et yesterday how does it effect u 

  • Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that you have been diagnosed with ET

    20 years ago I was diagnosed with a rare type of T-Cell Lymphoma blood cancer but Essential Thrombocythaemia is just that touch on more on the rare side and does fall between the cracks on the cancer forums we have.

    But lets see if any of the folks who posted before will pick up on your post and also look back at the posts in this thread as there are some other information sources.

    You could also put Essential Thrombocythaemia into the Search Box - Top Right as you will pick up more information.

    Caroline - Macmillan Heamatology Nurse may be able to help you out as well as our other experts in our ‘Ask an Expert’ section but please allow a few days to get answer.

    You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be very helpful even if all you want to do is talk with friendly person that can help in lots of ways.

    We also have our Online Information and Support Section where you will find some great pages covering the cancer diagnosis, treatment and information pages covering most types of cancers - just go to the bottom of the home page and have a look through the list.

    Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.

    When you have time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you.

    Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page.

    Always around to try and help out.

  • Hello... 

    Are you still on here?