Hello, my name is Trish and I have just been diagnosed with Essential thrombocythemia ('ET'). I have had high blood platelets for at least two years but was only referred to a haematologist last year. Although I waited 8 months for an appointment, following genetic tests my Essential thrombocythemia ('ET') has now been confirmed and I am now in the system. I’ve been taking low dose aspirin for about 6 weeks. Prior to taking it, I’d been experiencing extreme burning pains in the soles of my feet, to the extent that it was painful to walk around the house in bare feet or socks, and the pain would wake me in the night. Within a few hours of starting the aspirin, the pain disappeared like magic, which has been a huge relief! I will shortly be starting hydroxycarbamide and would appreciate insights from other people in the forum who take it. There seems to be a very long list of potential side effects although I know these can vary from person to person- but I do feel quite nervous about it. I am 71 and my latest platelet count was 620. I think my age puts me in the high risk category although I do have a healthy diet and lifestyle.To date I haven’t had any thrombosis issues. I suffer from fatigue, especially when walking but find using the bikes and other equipment in the gym (3 to 4 times a week) lets me exercise without getting too exhausted. The diagnosis wasn’t a big surprise to me, I’d done a lot of research (I was a librarian!) but nevertheless I do feel a bit scared by all this. One strange thing is that my brother died age 22 from chronic myeloid leukaemia- clearly there’s no actual link between my condition and his but just on a personal level it feels strange that 2 siblings should have diseases involving MPNs . Anyway, any advice or comments would be most welcome!
Hello @PatriciaBetsy
Thank you for taking time to send in your post, and welcome to the forum.
Im sorry to learn about your diagnosis.
I’m sure receiving the diagnosis was scary, I know when i got my Chronic lymphocytic leukaemia ('CLL') diagnosis I was very scared and confused and lots of other emotions, and I’m confident you have lots of questions
It goes without saying, your medical experts are the first and best point of contact all be it we have trained nurses on the forum and on the phone who are able to communicate with you and provide medical sound information. I am the other forum support volunteers cannot give you medical advice.
I’m also confident you will find others on the forum in not dissimilar circumstance who will communicate with you.
You may find the link Newly diagnosed with ET - #8 by Modesigns and Essential Thrombocythemia good places of information where others have posted their comments and experiences to date.
If you prefer, please remember, you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
-
Monday, Wednesday, Thursday, Friday: 10am – 4pm
-
Tuesday: 10am – 7pm
-
Saturday: 10am – 1pm
-
Sunday: Closed
-
Bank holidays: Closed
Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.
I do hop you let us know how things go
Kind regards
Mike
Hi Wendy here I am 75 and living with Essential thrombocythemia ('ET') and Jak2 .I was diagnosed 3 years ago after suffering TIA momentarily losing speech.Apparently my platelet count had been raised for many years but not picked up.I was put on hydroxycarbamide straight away with 3 Monthly blood tests.started over 750 now down to 398. Major issue is fatigue but you get used to it.I do aquarobics which I find helps but do have to recognise when to give in and just rest.i counteracted the sickness by taking my tablets in the evening just before bed with a drink and snack.currently walnut cake!! Find I am very susceptible to tummy upsets with bouts of diarrhoea. Have family in Saudi and Vietnam.managed long haul trip last October to Vietnam and planning trip to Saudi hopefully in October. Just accept that exercise followed by nap is the order of the day. Feel free to keep in touch
Hi
I was diagnosed with Essential thrombocythemia ('ET') two years ago and have been taking Hydroxycarbamide for two years - tiredness is the biggest side effect but I have found that if I pace myself I can still do all the activities I did before - I’m a keen swimmer and walker and still manage to do both of these daily but build in rest periods during the day and if I do a very long walk ( over 10 miles) I have a day off the following day. I have also found my absorption of B12 has been poor since on the medication and so have that checked regularly ( low B12 also causes fatigue) and now have injections to keep levels in normal range. Hope this helps I know how worried I was when I first started taking it.
Hello Wendy, thank you so much for replying, it really helps to hear from people who are going through the same thing, given that it’s quite a rare disease. I feel very encouraged by your experience, especially when it comes to travel and exercise. I have certainly been experiencing bouts of fatigue from the Essential thrombocythemia ('ET') alone so I think I’m learning to pace myself a bit better. I’m still waiting for my hospital pharmacy to issue my Hydroxycarbamide- they assured me it would be today - so I still don’t know how I might react to it, but you’ve been very reassuring and I really appreciate it. Am so glad you’re managing to travel too - I think our holidays this year will be in the UK but we do hope to travel to Australia at some point. Best wishes, Trish
Hello Annemarie, thank you very much for your encouraging reply! I’m glad you’re managing to do plenty of exercise- arthritis meant I had to stop running and I have to limit the amount of walking I do, , but I’ve established a good gym routine and go 3-4 times a week, which keeps me sane! I love swimming too. Thanks also for the information about B12 - I’ll bear that in mind. It really helps to hear from others going through the same thing and I’m grateful you took the time to reply. Best wishes, Trish
Hello
I also have Essential thrombocythemia ('ET') having been diagnosed when I was 65 in 2022. I have been taking hydroxycarbamide since then, and as the other members say the side effect that is the main problem is fatigue but a nap works miracles. I also take Clopidogrel as a blood thinner and since I had a TIA I have been prescribed statins. I am now ‘living well’ with Essential thrombocythemia ('ET') and hope you will too
Thank you so much for your reply, it’s good to know that you are living well with Essential thrombocythemia ('ET') and the medication, I’ve found the comments on here very helpful and reassuring, feeling much more positive than I was! Best wishes, Trish
Hi @Pollyp great to hear from you again and living well sounds good to me.
Really look after yourself
Hi Trish
It was quite a shock when I was diagnosed and told I would need chemotherapy,especially when told it was not just a course but lifelong. I found the fatigue hits you suddenly and I just have to give in and nap.However as my Doctor niece said “ Tante Wendy at least it is not life limiting “ She is half Norwegian ! Take care Wendy
Hello,
I was diagnosed with Essential thrombocythemia ('ET') last year and I’m also in my 70s. Like you I was prescribed aspirin daily to thin the blood and also a daily 500g hydroxycarbamide tablet. I have to say that I have had no side affects so don’t worry…I was anxious at first but don’t overthink it! I am told by the hospital that it is a small dose and it has brought my platelets down from 880 to 260 in a few months. I don’t feel particularly tired so don’t worry…I think at our age it’s a good idea to pace yourself anyway! Good luck!
Thank you Jan, I’ve actually just taken my first dose of Hydroxycarbamide, plus Allopurinol to prevent gout. So fingers crossed, am really encouraged by the positive stories in this discussion - obviously few of us will actually know anyone with Essential thrombocythemia ('ET') so it’s an enormous help to be able to connect with people on here. As the treatment progresses I’ll write an update. Many thanks for taking the time to respond! Best wishes, Trish
Hi Wendy, your niece sounds very kind and sensible! Like you, I do find the thought of lifelong chemotherapy medication a bit alarming, but if it does the trick in taming our wayward bone marrow it’s a small price to pay I think. Many thanks for your comments,and take care.
Hello there folks, just wanted to greet you Trish @PatriciaBetsy, Wendy @Whitewitch, @annemarie1936 and @Jan51, welcome to the forum, fellow survivors of Myeloproliferative neoplasms ('MPN'). How lovely that you’ve found each other here.
Apologies for the group welcome but it’s so heartening that all of you have found the forum and are here sharing your experiences of being diagnosed with Essential thrombocythemia ('ET'). Hello again too @Pollyp, thank you for sharing that tip about taking a nap when fatigued, which I would second. So glad to read you’re doing well a few years since diagnosis!
I see dear Mike @GenesisDevice has shared some great links to others around the forum living with Essential thrombocythemia ('ET'), the free number to call should you like to speak with the expert nurses is 0808 2080 888.
I’ll add the Blood Cancer UK information about Essential thrombocythemia ('ET') for anyone who’d like to read more or wants to follow its links to further information: Essential thrombocythaemia | Blood Cancer UK
May I just say that it’s really heartening to read the activities you’ve shared and actually the amount you do might put some of us younger survivors of Myeloproliferative neoplasms ('MPN') to shame—swimming, attending gyms, and hiking 10 miles at any age is very impressive, long may your physical abilities continue folks!
Do look further around the forum as there’s a lovely bunch of us living well with Myeloproliferative neoplasms ('MPN') here. Just use the search box at the top, typing in Essential thrombocythemia ('ET') or Myeloproliferative neoplasms ('MPN') and you’ll find many more interesting threads full of lovely support.