Essential thrombocythemia (ET)

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Hi Everyone

just joined this group today I’ve been living with ET since I was diagnosed in 1999 I have become more anxious about it during Covid since only have telephone consultations with Haematology now instead of face to face. My main symptoms are fatigue & dizziness would love to communicate with someone else who has this rare disease

  • Hi Jan I’m Peter and I’ve just been Diagnosed with essential thrombocythemia , just wanted to say hi and wondered if you can give me any tips on coping with it , I’ve only been on the tablets for 8 days now x

  • I was diagnosed in January 2020 and been on tablets for 4 days a week for the last year and I still have the occasional blip and anxiety and it doesn't seem to get any better

  • I have ET.  How do I meet or talk to others with the same to get support?

  • Hi  and welcome to this corner of the community. As you see ET is rare m, so rare we don’t have a specific group but there are a good few post in this group so let’s see if they are looking in.

    You may also want to check out MPN Voice a support network for people with MPNs (myeloproliferative neoplasms) providing information and support.

    Do also check out for a local Maggie’s Centre as these folks are amazing. We have a few folks in our Heamatology Support group with ET at our local local Maggie’s (Inverness) so worth checking out that route.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks. I have had this ET blood cancer for more than 1 year. They foun out after I got bloodclot and my platelets was 1200. I was put on chemotherapy - Hydroxycarbamide - and it take them down to 400 but last week after blood test it show the drugs are not working anymore and are now in 600.

    The platlets are now going up and red bloodcells going down so I am out of breath if I walk short way. I am waiting after seeing the doctors at St. Richards Hospital in Chichester to get new chemotherapy drugs. 

    I am so worryed -  It is the reason I google ET support and found you online. 

    Thanks for running this webpage. 

  • I have been on my Lymphoma journey for over 22 years now so have went through all the various treatments and I am still around doing great - it just takes time to get everything into a good place.

    Google will give you a 1000 answers and most are just not helpful with many way out of date. The folks with ET in our Heamatology Support group have very different journeys but goid you are being seen, make sure you are ready for your appointment with all the questions you want to ask in a note book ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi I been with E.T for the past  6 years  I get hot sweaty nights I. Get dizzy  and sometimes feel sickly  at the moment cos of covid  just calls  from hospital  hate what I have  never find answers for it  so at times pretend am normal  do my workouts  only  one thing I miss my marathons cannot do long distance any more which makes me angry  so to others with E.T try keep going take care  

  • Am here if needed got E.T for the past 6 years can relate stay strong

  • Hi Linda, I was attending haematology for two years before they diagnosed ET. I have now been on hydroxycarbamide for several years and it took til last year to get the dose right. I have not seen my specialist in nearly two years and now she has left. The stand-in has also left and the next appt is with a dr who has also left. Not sure who I will speak to now. I too, get tired and breathless but was coping until I got a virus last December leading to post viral problems. Just keep trying to do what you can and know when you have to rest. Trust this site (other cancers) and MPN. I had not heard of Maggie’s Centre, I will look that up, thank you Thehighlander. Also note that platelet readings can change if you have been unwell. Good luck with the new level or change in drugs. Janet

  • Hi,

    I'm new to the group.

    My husband is currently undergoing tests. He has a high platelet count, fatigue, dizziness, tingling hand/fingers, headaches, difficulty concentrating etc and has recently has a stroke and recurring gout. Dr Google suggests that it could be ET although his consultant hasn't mentioned this. He has another haematology appointment for more blood tests and possible bone marrow tests.

    If this does turn out to be his diagnosis, what are the prospects? He's currently signed off work and doesn't feel like he can return any time soon. 

    Thanks for reading.