Hello everybody ,
I have been told i have ET I was wondering if anyone can tell me what it is like living with this ?
I may have to have medication . Any info would help me understand this condition.
Frances
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Hi Frances, welcome, there is information on the Blood Cancer UK website plus other information that might be of use to you, it is under understanding blood cancer.
If you would like to speak to someone you can contact the wonderful Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
We are here to support you and perhaps write a list of all the questions you would like to ask your medical team and these can include your fears, thoughts, symptoms, practicalities etc.
We are here to support you and I am sure there are other posts on this site regarding ET.
Take care of yourself and I look forward to hearing more about you.
Hi Erica
Thank you for your reply. It’s really helpful to read about all the lovely people on the site and how they cope with their diagnosis.
I now have my first face to face appointment with my specialist and have already started my list of questions.
I have also started my healthier diet and new exercise regime .
I think I will feel more confident in coping once I have spoken to my specialist and receive all the information I need. Until then I’m trying to remain positive .
Frances
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Hi @Macymae123 - Lovely to hear from you. I have ET, I was diagnosed with it in June 2019. I have a rare liver condition and DVTs in my leg too: my body likes to go for it 100 percent. If you ever have any questions please feel free to ask, I’m no medical professional but more than happy to share my experience with you. Good luck with the appointment and well done for writing a list; I always forget to ask things whenever I meet the haematology team! Lou
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Hi @Macymae123, I am eating a slightly healthier diet now but also have the odd treat.
I really find just going out in the fresh air really helps me and I go out for an early morning walk every day, there is always something different to see but When I was totally in lockdown I tried to do some exercise every day either a pilates dvd or just sitting in a chair moving my limbs about, usually to music.
When I feel better about myself I think I actually gain confidence and feel more positive.
Keep going with your list of questions, they are all valid.
It sounds as if you are doing brilliantly.
Let us know how you are getting on.
Hi Frances, just in case it’s helpful at all, here’s our booklet on MPNs - https://media.bloodcancer.org.uk/documents/Myeloproliferative-neoplasms-Blood-Cancer-UK-info-booklet.pdf The information on ET is on pages 39-47, but there’s also information about day to day life with MPNs in the booklet too. Do let me know if you’d like a copy posted to you.
Really good to hear you’ve started your list of questions for your specialist, I hope it’s a really useful meeting for you. Do let us know how it goes if you feel up to it.
We are only a phone call away if there’s anything we can do to support you, at any point. Take care, Alice
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Hi Frances
I was diagnosed almost 10 years ago, yes you may need meds at some stage, this will depend on a number of factors, we are all different. I would recommend looking up MPNVoice website, lots of tailored info there, also there is a buddy system, ideal for someone just starting on their journey. My advise is this, make sure your heamatologist monitors your bloods regularly, listen to your body, don’t panic. Honestly don’t, the management of ET nowadays means most of us have a near normal life expectancy, so although it is very scary at the beginning life is very much NOT over for you.
Take care and good luck
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@Janet thank you so much for your supportive and reassuring comment to @Macymae123. The MPN Voice buddy system sounds really good. Hope you’re doing well! All the best, Alice
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Hi @Janet, thanks for your post, it was really helpful and supportive, just what this forum is all about.
What was lockdown like for you and how are you doing now?
Hi
I want to thank everyone for there support and help with the info you are giving me. It’s helping me to cope with everything. I will update as I go along my journey
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Hi Erica
I am doing ok thanks, platelet count has been elevated during shutdown, I do believe it is stress affecting it. I feel as though I have coped fine through shutdown generally but maybe the body is showing through the platelet count. Shielding was fine as I tend to live quietly anyway, Am still using supermarket deliveries and still nervous about large supermarkets. Other than that just pottering on, currently fighting with GP over removal of B12 injections so at least I have some meshing to stop me getting bored 
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Could I possibly have a booklet posted to me please Alice? On MPNs. I have ET and this would be an interesting read.
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@Emmaco Hi there Emma, just picking up your message as Alice is away today. But of course, that will be no problem at all. Please feel free to email your details to the Support Services Team: support@bloodcancer.org.uk. at any point, and we shall get this arranged for you 
any questions, do give us a bell!
Su
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Hi Francis,
I also have ET, this was first diagnosed when I was 18 I am now 46.
I think I lead a normal life I take medication called Interferon, which I seem to get on fine with. I had a successful pregnancy and I did up until the pandemic work as a feeelance dental nurse. I am shielding now, until 31st and get my second vaccine in April. After that I have to make a decision of what I do for work after this time. Dentistry is higher risk but it is all I know. I think if you are managed well and use all the tools like BC uk etc there is always advice right there.
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Hi all,
I was diagnosed with Essential thrombocythemia (ET) in May 2024. Still getting used to it. Glad to know everyone here. Feels a bit less lonely.
Thank you
Ellie
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Hello there @Ellie, welcome to the forum. I’m glad you found it here, but so sorry you had reason to. How have you been getting on so far? It can be a lot of sudden blood-related info, right?!
It’s great that you’ve already found this thread of others living with Essential thrombocythemia (ET). When I was diagnosed last year with Polycythaemia vera (PV) I remember how comforting it was to find others here who reassured me of my early experiences of it and its treatments.
Perhaps have a further look around as there are many of us living with Myeloproliferative neoplasms (MPN) such as Essential thrombocythemia (ET) and Polycythaemia vera (PV), sharing all sorts of wisdom and lived experiences. Maybe you’d like to read the Blood Cancer UK information on Essential thrombocythemia (ET) if you haven’t already: Essential thrombocythaemia | Blood Cancer UK
I just wanted to say how brave it was for you to post on the forum and that hopefully you won’t feel so alone with that Essential thrombocythemia (ET) now you’re here! Do keep us posted about how you get on @Ellie.
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Hi Duncan,
Thank you so much for your kind message! Yes, I am still sort of finding my feet with it all. In the beginning I red everything I could find. Now I am sort of trying to figure myself into it. I guess it will be step by step.
Hope you are keeping well!
Best regards
Ellie
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Oh you’re most welcome @Ellie, it’s great that you’re here now! Looking forward to hearing how you settle into living with your diagnosis.
If I may be so bold, perhaps we will always be kept on our toes with these sorts of diagnoses!
Definitely a lot of reading out there when we have the space for it. I’d say be mindful of how reliable it can be—Dr Google can stir up a lot of outdated nonsense.
Thanks for asking after me. Saw my haematologist this week and we had the shortest appointment yet as he said all is well with my blood cells and treatments. Nice sort of relief that I’m sure you’ll come to experience too.
So I’m relaxing a little bit and treating myself by heading out for a hike to break in my new trail shoes 
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Hi @Ellie a great big welcome and now that you are part of our forum family I hope you will feel a bit less lonely.
I see @Duncan has given you a great welcome.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
I really look forward to hearing more about you.
Be ever so kind to yourself I know my diagnosis took ages to get used to.
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Thank you so much Erica!
My platelets are okay now. I was on interferon first, but because there are stock problems with it at the moment I was put on Besremi. Probably the same as Duncan. Have amazing doctors caring for me.
Unfortunately at the moment I need to navigate heavy menopausal bleeding, and planning a hysterectomy on top of just settling with Essential thrombocythemia (ET) and medication.
Never before it happened to me I have heard of Essential thrombocythemia (ET), or heavy menopausal bleeding, or pelvic organ prolapse… Just made me realise how much we don’t talk about, and in result we just suffer in loneliness.
It is amazing finding this group, considering how rear Essential thrombocythemia (ET) is.
Thank you all for being so kind to me!
Ellie
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