Essential Thrombocythemia

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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 :wink:

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