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Essential Thrombycaemia

Jojoviking
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Hi

I was diagnosed with this blood cancer on 16 December 2021 after a year of ill health blood tranfusions for chronic anaemia & various symptoms. I am due too have my bone marrow biopsy & aspiration. At the moment I am just on aspirin as I'm quite young don't smoke & basically lead a healthy lifestyle. What's crippling me is the tiredness I'm suffering, I suffer terrible night sweats & have a lot of joint pain & numbness in my hands which was always put down too issues with my neck. My orthopaedic surgeon has now said after a recent scan that there is no nerve impingement in the neck or from metal work. I feel slightly alone & a bit lost as I haven't been able too see my haemotologist face too face. She assigned me a support nurse which I've had no contact from. I don't like being a nuisance to people but just would be grateful for a little advice as to what I can expect to happen & to what will help with symptoms. 
Any advice would be great thank u in advance. 

  • Hello and thank you for your post.

    I am sorry to hear about your diagnosis of essential thrombocythemia (ET) and the symptoms you have been having. While I cannot say for sure why you are have fatigue, night sweats, numbness and pain in your joints and hands it is possible that they could be caused by ET.  So I would try to contact your haematology team and let them know. If you have not left a message on the specialist nurse's telephone then please do and someone will get back to you. If this does not work you could also try contacting your haematologist's secretary via the hospital switchboard and ask if a message could be passed to your doctor. If this does not work then get back in touch with your GP to tell them about your symptoms.

    We have information about ET on our website, this includes information about the symptoms it can cause, you can see it here 

    You might also find the information and support from another charity called MPN Voice is helpful, you can see their websbite here https://www.mpnvoice.org.uk/

    I hope this has been of some help and that you will be ok. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline

  • Offline in reply to CRUK Nurse Caroline

    Thank you so much Caroline for taking the time to reply with this information. 

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