Hello all

Recent diagnosis
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Hi all.

My name is Kevin Farmer now aged 70. I was diagnosed with Essential thrombocythemia ('ET') in December 2025. My diagnosis came about after a blood test to monitor my health following a 2021 minor stroke. Presumably if I hadn’t had the stroke I wouldn’t have had a blood test. Funny how things work don’t you think. I couldn’t understand what the fuss was about because I felt fine, however my platelets were over 1300. I have been taking hydroxy carbamide 500mg, started off at 1 per day. Now I’m on 11 pills per week and platelets are down to 500. Apart from tiredness, especially January/February time I still feel fine. Although Essential thrombocythemia ('ET') is an illness I feel lucky, when I go for my regular monthly blood test I see much younger people than me who are obviously struggling. My glass is definitely half full.

That’s a whole lot I’ve gotten off my chest, just typing this out feels quite emotional. If you’ve gotten this far, thanks you. It’s always good to know we’re not alone.

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Hello @klf1956

Thank you so much for taking time to send your post into the forum

I’m sorry to learn about your diagnosis, it is clearly something that must have come as quite a shock to you, especially getting the diagnosis by chance.

I can relate to this myself after going for a PSR test to check for prostate cancer (being a man in my late 50’s and also having a friend of a similar age having just been diagnosed with the condition) and my wife (a former nurse) suggested I ask the doctor for a full blood count.

Thankfully the PSR showed no issues with the prostate but did indicate further investigation required - eventually getting a diagnosis of Chronic lymphocytic leukaemia ('CLL').

Like you fatigue is a factor - but an afternoon siesta is often the solution to that i find. Being semi retired, I do have the option of a nap.

Its lovely to read how positive you are about your circumstance, and I hear what you say about younger people, as I am closing in on 59 myself and i attend a coffee morning at a local charity where is live in York and a number of patients who come along are in their late 20’s or 30’s.

I’m confident that others who read your post will, like me, take comfort from your words - showing such strength and positivity, and thank you again for posting on the forum. As you stated it can be quite emotional to type everything out, but again you are correct, we are not alone, none of us, we have our family our friends our medical experts and we have this forum.

Always remember you can 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:

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Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.

Do please feel free to let us know how you get on

Take good care

Kind regards

Mike

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Hi Mike thanks for your reply, I’m feeling fine.

ATB Kevin

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Hi @klf1956 and welcome to the forum.

Good to hear you’re looking positively at things despite your Essential thrombocythemia ('ET') diagnosis

Whilst my diagnosis was a different blood cancer, there are many others here on the forum with Essential thrombocythemia ('ET') who are always happy to share their experiences.

All the best :+1:

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Hello @klf1956

Welcome to the forum and I’m glad you are feeling positive despite your diagnosis.

I have a different diagnosis to you (I have Polycythemia vera) and I also found that posting on this forum helped a lot to share and engage with other folk who understand how you feel.

Everyone here is lovely and as @DuncanB mentiions there are others with Essential thrombocythemia ('ET') who can share their experiences and feelings as well as the wonderful medical experts.

Take good care and best wishes.

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Hello there @klf1956, welcome to the forum. I’m really sorry to read of the stroke and the eventual Essential thrombocythemia ('ET') diagnosis you’ve experienced. Hopefully your stroke recovery has been very successful?

Like others have kindly said, you’ve found the right place to find out more about Essential thrombocythemia ('ET'). There are many of us around the forum who live with Myeloproliferative neoplasms ('MPN') like Essential thrombocythemia ('ET') and Polycythaemia vera ('PV'), so I hope you come to feel you’re in great company like I do. Here’s the Blood Cancer UK information about Essential thrombocythemia ('ET') for your reference: Essential thrombocythaemia | Blood Cancer UK

Some of us with Myeloproliferative neoplasms ('MPN') have had a clotting incident before diagnosis, myself included. I was one of those youths in hospital wondering what had gone wrong in my body—thank goodness we survived and can tell our tales, no matter our ages! I’ll share the Blood Cancer UK information about Myeloproliferative neoplasms ('MPN') as we tend to have similar and overlapping treatments and symptoms: Myeloproliferative neoplasms | Blood Cancer UK

May I say I’m really pleased to read how well the hydroxycarbamide has brought down your platelet numbers, great stuff. I take hydroxyurea too and it took much longer to stabilise my blood cells. Lower platelets will help defend against further risky clotting, I’ve been told by my haematologist, so hopefully that’s a relief for you.

Anyway, you’ve got the number for the specialist Blood Cancer UK nurses that @GenesisDevice shared above, so do give them a call if there’s anything medical you’d like to talk about with an expert.

If you’d like to find others around the forum living with Essential thrombocythemia ('ET') then you can use the search box at the top using terms like ‘Essential thrombocythemia ('ET')’ or ‘Myeloproliferative neoplasms ('MPN')’ and to start you off here’s a thread full of lovely folks who live with Essential thrombocythemia ('ET'): ET diagnosis finally sinking in

Hope that helps a little @klf1956, I’ll look forward to hearing how you get on. Do please keep us posted.

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