Newly diagnosed and overwhelmed

Recent diagnosis
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Hi I am totally new to this forum as have only recently been diagnosed with Essential Thrombocythaemia ('ET') with the JAK gene. I am 68 and usually very sporty and active but have quite bad anxiety. This diagnosis hasnt helped! I had a blood test by chance, the platelets were high and well I am sure you know what happened next! I started the Hydroxycarbamide and Allopurinol this week and have been on enteric aspirin for 10 days. Unfortunately the aspirin irritates my hiatus hernia so I am also on lansoprazole daily too. Has anyone else had this problem by any chance? It all seems so overwhelming at the moment and I have to say that there have been many tears.

Friends are very kind but they all seem to think I am lucky as only have a tablet to take instead of chemo cycles. This is obviously partly true, but there is a lot more to it than just one tablet a day. I find it hard to get my head around the fact that is is for life and not end once the “more typical” chemo cycle is finished. Do the side effects last continually? What can I expect?

So far my side effects are nausea and dizziness with some fatigue and headache. My consultant said it should improve after the allopurinol is halted in a months time.

Sorry to moan on and on but it is just nice to know there are some others out there with the same thing and can perhaps help with some advice. Thankyou for listening, a very tired and confused newbie!!

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Hi @Judi and a warm welcome to the forum.

I was sorry to read about your recent diagnosis.

The initial period after diagnosis is very difficult.

You will find on the forum people who really understand the realities of living with blood cancer.

My diagnosis was with a different blood cancer and there’s many others living with Essential Thrombocythaemia ('ET') including the wonderful @Erica who regularly offers wisdom, experience and support.

There’s a really good forum post titled Essential Thrombocythaemia ('ET') Diagnosis Finally Sinking In that you might find helpful too.

Take care

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Thankyou very much for those wise and kind words. I will look at the relevant posts

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Hello @Judi

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

I’m sorry to learn about your diagnosis, my heart goes out to you

You mentioned things seems overwhelming at the moment, and that is understandable.

If i may - you may find the section Blood cancer: mind and emotions | Blood Cancer UK helpful, and I encourage you to take a look at this section of our pages.

Beyond that 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 and bank holidays: Closed

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

Kind regards

Mike

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thankyou Mike, there is so much to take in

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@Judi

Hi and welcome to the group no one wants to be part of.

I was diagnosed 2 years ago currently on aspirin but going onto interferon next year. I didn’t want to go on the chemo tablet, purely because of what it is.

This group is really good and very friendly

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Hello there @Judi, welcome to the forum and may I say I’m sorry to read of your diagnosis with Essential Thrombocythaemia ('ET'). It’s a lot to take in, isn’t it? I was diagnosed in 2023 with closely related Polycythaemia vera ('PV'), take hydroxyurea, and also tolerate nasty anxiety. Not a fun combo!

I’ve taken daily aspirin without any side effects since a heart attack many moons ago, so I’m sorry to read it’s irritating for you. Do keep looking around the forum for others dealing with this, maybe using the search box at the top, as you won’t be alone with taking lansoprazole.

I remember the flood of information after my diagnosis with Polycythaemia vera ('PV') in 2023 and would say try to take your time, read up at a pace that doesn’t overwhelm. Something my haematologist tells me might help you feel like there’s not a rush—he reminds me that we are likely to live into normal old age with Myeloproliferative neoplasms ('MPN') like Essential Thrombocythaemia ('ET') and Polycythaemia vera ('PV'), and to pass away from something unrelated. I’d say there’s no hurry right now to understand it all.

Something else I can speak to is people downplaying Myeloproliferative neoplasms ('MPN') and their treatments. Essential Thrombocythaemia ('ET') is considered a chronic type of blood cancer, as in it develops slowly if at all. From my point of view there’s nothing lucky about living with any illness, chronic or otherwise, and certainly any cancer. This thread is full of forum members who know exactly what you’re talking about: Dealing with friends that say "you look fine"

Personally, I had anxiety blow up at the thought of having to tolerate Polycythaemia vera ('PV') for life, but 3 years after diagnosis there are days when it is not at the forefront of my thoughts at all, and occasionally I forget altogether! I hope it can be like that for you too.

It’s worth bearing in mind that hydroxyurea is a type of ‘mild’ chemotherapy and so you are actually taking chemo every day rather than in cycles. I wouldn’t say one is better than the other, but aren’t we lucky to have options for well-researched medicine? Maybe you’d like to read more about hydroxyurea, or have this to share with friends: Hydroxycarbamide | Macmillan Cancer Support

From my experiences of taking hydroxyurea it’ll be you and your haematologist following along with your blood test results to see how the dosage brings down blood cell overproduction. Sounds like it’s your platelets that were higher, so I hope they’re coming down nicely already.

It took about 2 years for hydroxyurea and phlebotomy to stabilise my blood cells. I don’t need blood removing anymore and only have CBCs every 3 months now, while I still take aspirin and hydroxyurea daily. Like you I get a bit dizzy and nauseous even now but it’s pretty mild. The fatigue though was no joke and took about 3 months for mine to fade to a tolerable level.

You’ll find many other folks around the forum living with Myeloproliferative neoplasms ('MPN') like Essential Thrombocythaemia ('ET') and Polycythaemia vera ('PV') and we do seem to have similar and overlapping treatments. So I’d say you’re not moaning at all, but already very aware of some of the things we face while living with Myeloproliferative neoplasms ('MPN'). Maybe you’d like to read more about Myeloproliferative neoplasms ('MPN'): Myeloproliferative neoplasms | Blood Cancer UK

Here’s some great information from Blood Cancer UK about fatigue: Fatigue | Blood Cancer UK

And may I just say, please don’t feel like you’re moaning. Being diagnosed with Essential Thrombocythaemia ('ET') is a big deal and if we didn’t have strong feelings about it then I don’t know what else could elicit them! We really can say how it is for us in a place like this so I hope you feel like you can share what you need to.

Perhaps you’d like to reach out too others living with Essential Thrombocythaemia ('ET')? There’s this lovely thread full of folks who I’m sure know how it is for you right now: ET diagnosis finally sinking in

Hope that helps a little @Judi, do please keep us posted about how you get on.

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Hello Judi, my name is Trish - welcome to the forum, which can be invaluable in sharing experiences and concerns with others in the same boat. I was diagnosed with Essential Thrombocythaemia ('ET') in March this year at 71 - my platelets started rising steadily from early 2024, I had a series of blood tests and other investigations at my GP practice until July 2025, then was finally seen by a haematologist in February this year. So I had a long wait for the diagnosis, which showed I had Essential Thrombocythaemia ('ET') JAK2 and MPL. By that time, my symptoms and a process of elimination led me to think I probably had it so I wasn’t that surprised. Even so, it’s still unnerving to be told you have a lifelong form of chronic blood cancer, and its rarity makes it difficult to explain to others what’s going on as hardly anyone has ever heard of it!

I’ve been taking low dose aspirin and Hydroxycarbamide since my diagnosis- at the moment I’m on 500mg per day on weekdays and 1000mg at weekends. I took Allopurinol at the beginning for 2 weeks. The aspirin for me was a blessing- I’d been having very severe burning pains in my feet for months which literally vanished within a couple of hours of taking the first tablet but I seem to tolerate the aspirin well and the foot pain hasn’t returned. The only noticeable side effects from the Hydroxycarbamide so far have been bouts of fatigue (had that anyway from the Essential Thrombocythaemia ('ET')) and quite dry skin and hair. I still do plenty of exercise on days when the fatigue allows because it really helps my mental health. I know that there’s a very wide range of responses to this drug so it’s probably just a case of seeing how it goes for you, and don’t hesitate to contact your specialist if you’re experiencing difficulties. Wishing you all the best, and keep using the forum, it really helps to know you’re not alone! Trish x

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This is lovely Trish @PatriciaBetsy, thank you so much for offering support and welcoming @Judi so kindly.

May I welcome you too, although I see other forum members have beaten me to it! I’m sorry to read of your own diagnosis with Essential Thrombocythaemia ('ET'), and the long wait to find out. This seems an unfortunately pretty common experience from what other forum members have said about their testing to diagnosis timelines. Better to be thorough and accurate I’d say, after also going through a long, anxious diagnosis process myself.

You’re so right about the rarity of Essential Thrombocythaemia ('ET') and other Myeloproliferative neoplasms ('MPN') making it difficult to explain to others. I can barely even pronounce the Polycythaemia vera ('PV') I live with, so I often just tell others I have a weird rare blood disorder and that’s usually enough information for them! When people want to know more, and I feel like sharing, then I try explaining in more detail. It’s a steep learning curve, isn’t it?!

Really glad to read that you don’t get the burning pains anymore—sounds like another of the sadly common aspects of Myeloproliferative neoplasms ('MPN'), the dreaded itchy skin AKA pruritis: Itching | Blood Cancer UK

I’m really glad you’ve found the forum @PatriciaBetsy and I’ll look forward to your posts.

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Patricia, thankyou so much for such a lovely message. It is so comforting to hear others are experiencing similar effects, I mean that in the nicest possible way!

The nausea is pretty bad at the moment and ginger biscuits have become a good friend along with fresh ginger tea. I am still in the “suddenly becoming tearful” stage, and feal very weary as opposed to fatigued. I hope your journey is smooth and that I hear from you again.

Judi

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Hi Judi, the one thing that calmed me, was being told to think of Essential Thrombocythaemia ('ET') in similar terms to diabetes, it isn’t terminal, but it is controllable

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