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Jo62 - my husband was diagnosed with ET & is struggling

Jo62
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My husband was diagnosed with Essential Thrombocythaemia (ET) in April this year. It was completely out of the blue. He was diagnosed with epilepsy last year and took a heart attack just before Christmas. We knew there was a problem but no one said anything and we just assumed he was low in iron or something simple like that. He was told while at a hospital appointment and on his own that he had this blood cancer.

Life since April has been so stressful. My heart breaks for him. For the man he was and the one he is forced to be for the rest of his life.. This blood cancer is incurable but it can be treated. Chemo tablets for the rest of his life. He suffers dreadfully with extreme fatigue. He was a man worked all his life and never stopped at home and now he can walk to bathroom and get breakfast and might have to lie down and sleep for maybe 2 or 3 hours. 

I am so worried for his mental health. Like most men, he doesnt talk but he sometimes, most times,  looks so forlorn and lost. Other times  he can be quite sharp and cross. 

Is this type of cancer familiar here? I know its a very rare cancer. Id love to get talking to someone with it or someone who has a loved one with it.

  • Hi Jo, I'm so sorry for your news. I did a forum search and found one from 2 months ago. It's here  RE: Anyone living with Essential Thrombocythaemia?  and there are some links on there that you might find helpful too. Please know that we're all here to help whenever you need to talk. Gill xx 

  • Offline in reply to welshwoman

    Hi Jo I have just been diagnosed on Monday with exactly the same thing as your husband, I go back tomorrow (Thursday) to start the Hydroxycarbamide. Really anxious knowing this is it for the rest of my life and for what side effects I may have. I met with one of the cancer nurses within my appointment and I’ve been given contact numbers for any concerns, you don’t say how long your husband has been on the medication for but you should definitely speak with the haematology nurses about this issue with the chronic fatigue.

  • Offline in reply to Cocktail

    Hi Cocktail, good to hear from you and I'm very sorry for your diagnosis. It's a very scary time for you and your family. When that words Cancer and incurable are used in a diagnosis you automatically think the worst, but thankfully it's not as bad as it sounds.

    We  were over yesterday Wednesday seeing the Oncologist and was over on Tuesday for his blood test which thankfully came back looking really good. He has been reduced down in his medication now from 2 tablets to 1, 3 days a week and then continue with 2 for the 4 days. We don't go back now for 3 weeks.

    We have spoken to the Oncologist about the fatigue but he said it is a common side effect of the medication. He said through time my hubby will get to know himself the degree of fatigue he has in a particular day and be able to organise his day accordingly. E.g if he feels good in the morning time he can do wee jobs then, and rest in the afternoon or vice versa.  Unfortunately it's a whole new way of living but we are just so thankful that it's not one of the "normal" cancers.  As long as the medication brings the platelets down, the blood shouldn't clot and then the risk of a stroke, heart attack or DVT can be a lot less. 

    The wee book you would have been given on Monday, The guide to diagnosis, treatment and living with ET is very good. I just keep reading and re reading it and I always pick something up that I missed the last time I read it.

    We both wish you all the best for starting your treatment later today and hopefully your side effects won't be too bad if you have any at  all. 

    P.s It can be good to bring someone with you to the appointments, as they might hear something you missed.

  • Offline in reply to Jo62

    Hi Cocktail, I forgot to say my hubby has been on his medication from April. His platelet levels weren't as high as some people in that wee book I was telling you about. His numbers are down now to where the Oncologist want them. Thats why His meds are being reduced. 

    Your day will come. Believe that when you start your treatment today or tomorrow. and hopefully  they will never be this high again.  You might have the odd blip but you will be well looked after.

    Good luck. J

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