Hi 😊 I'm Karen aged 50. I was diagnosed with Essential Thrombocythemia in 2009 its pretty rare so it is difficult to find anyone who has it to chat to 😞 - its great to be part of this group and I look forward to meeting you all x
Myeloprolifative Neoplasms - Has Anyone El... - Leukaemia CARE
My husband has atypical chronic myeloid Leukaemia. Not sure it fits into your group but think it might? He was diagnosed 3 years ago. He was put onto Hydroxycarbamide. That worked for 12 months but then we asked for a second opinion as he was starting to look ill again. He was taken off them and put onto Ruxolitinib which he responded to very well. Unfortunately 12 months ago he was told he had a form of Parkinson's. Again a rare version! So he has now gone down hill quite rapidly. Due to the rare form of Parkinson's rather than the Leukaemia. Sometimes life sucks?
I told the consultant that his problems were not due to Leukaemia but to his rare form of Parkinson's! He examined him and told me he thought I was right!! Wow! Shame he didn't listen to me when I asked why my husband was walking the way he was? He snapped my head off and asked me what did I expect as he had Leukaemia!!
Today he couldn't wait to shake my hand and was nauseatingly nice! Not meant of course but hey ho?
If I could just find a magic tablet for his other complaint we would be fine?
Marie x. (Thank you for asking by the way)! Off to see the Neurologist on 5th!
Thank you for joining our forum.
We have a buddy that you can talk to on the phone who has ET. I have asked her if she is happy to do this and has has agreed.
The buddy's name is Rosemary - she prefers to speak on the phone rather than use the internet.
please contact me on 08088010444 or via our live chat if you would like the phone number.
I'm doing well thank you. I take Clopidigrel every day (I am asprin intolerant) and I too have symptoms however my ET has brought on Rheumatoid Arthritis and Chronic Anaemia too so half the time I'm not sure which symptoms belong to which illness 😀 I do take a lot of natural supplements and use herbal teas to help with a lot of my symptoms.
Have a happy Friday xxxx
Hi Karen, I am another ET'er like you. I was diagnosed in 2011 after aerterial clots also at the age of 50 (is there something about turning 50). Do you know if you are Jak2 positive or CALR. I am currently on Hydroxycarbamide and interferon injections. I am based in Merseyside and know a couple of other ET'ers. Love to hear from you if you want to chat