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MPN Voice
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New here and newly diagnosed (ET)

Hi, Just wanted to say Hi and what a great find this forum is.

I am 36 and have just been diagnosed with JAK2+ ET, all stemming from a routine blood test almost a year ago. Currently I am only on Aspirin as my levels are (only) around the 600-700 mark so apparently I am low risk.

I have been feeling massively overwhelmed as for almost the last year I have been feeling unwell - tiredness, migraines, and just not being able to put my finger on the cause so on one hand its great to actually have a 'thing' to explain but also pretty scary, especially as it is classed as a blood cancer.

I have simultaneously been diagnosed with PCOS and Insulin Resistance so it's all focus now on getting as healthy as I can to help all round. A huge challenge for me as I hate exercise but love cake :)

Anyway I have waffled on far longer than I meant to.

Be well

Rach

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Hi Ruby,

It sounds like we have very similar symptoms, with the migraines and tiredness. Have you suffered from migraines for long or is it new?

I've had a very similar diagnosis and although the word 'cancer' is obviously quite scary, ET does seem like one of the best ones to get (if you have to have any type)

The actual implications aren't, as far as i can tell, necessarily that serious and people seem to lead very normal lives despite the diagnosis.

There are lots of people on here with very encouraging stories so it's a good place to get reassurance and info on things.

All the best,

Tom

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Hi Rach,

Welcome from a fellow newbie. It’s a very stressful time being diagnosed but it sounds like you now have an explanation for your symptoms which might make them easier to deal with. With a bit of luck ET will be a minor nuisance you barely think about for the foreseeable - and there’s a great community here who’ve got your back with anything that worries you. Btw my monthly migraines have stopped ever since I went onto the aspirin - so that could be a silver lining too x

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Hi Ruby I’m a newbie so I haven’t got a lot to add in terms of advice but you’ve definitely found the right forum for experience, knowledge and general, all round loveliness..

Don’t forget to drink lots of water with your cake!

Stay well

Jaynie x

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Hi there Rach & welcome to this friendly forum. I have found this site invaluable for support, advice & information as am sure you will too. Check out the MPN voice website too which is great if you haven’t already. I have PV diagnosed a year ago which came as a shock but like you it at least gives you a reason behind the symptoms. Hope your symptoms begin to improve. Best wishes x

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Good that you want to get fit.

If you think of this journey as managing your condition.

Your health is an important factor of staying In the moment and becoming positive. Small changes mean difference.

You don't say where you are from. There is a health programme called Desmond which is run by people who are really understanding of diabetes.

It's free and lasts for one day.

It will help you understand why some people become insulin resistant.

Secondly on here we feel the same way at first.

The positive aspect of this condition is you are being monitored.

So any health issues mean fast response to any symptoms.

Try to ask questions at your appointments and remember that we are here to help you with emotional support.

Find your safe space and with the right information, you will start to be in control.

Best of luck.

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Hi Ruby,

I’m just a straight ETcalr. No other issues apart from an unrelated stroke 10 years before diagnosis. So with that and close approaching 60, I was classed as high risk and put on hyrox straight away.

At its worst, my platelets only went up to 822.

Hydroxicarbomide has reduced them and if they go below 400 then most of the time I I feel normal.

Keep your chin up. You will learn how to cope. Despite you hating exercise it really does help, so do try and find something suitable. Yoga is very low impact and socialising at the gym also takes your mind off your illness.

Choose your chores, enjoyment of life is No 1. If you can afford home help get it so that you can save your energy for living, laughing and eating cake.

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Hello Rach, and welcome to our forum. Hopefully you will find it helps you to be in touch with the other lovely people on here, we all completely understand how you are feeling, we've all been there, take your time to read as much as you can on our website mpnvoice.org.uk and look at the videos and read the stories, I am sure this will help you as well. If you need any information just let me know at maz.cd@mpnvoice.org.uk. Best wishes, Maz

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Hi Ruby,

Sorry you are experiencing these symptoms, but, I know just knowing what is the cause, is helpful. I am 4 yrs. in to ET and I remember thinking I was falling apart!

I have learned that exercise, as unintuitive as it seems does help immensely with the fatigue. Also getting plenty of rest, naps and sleep!

It is also important to know your driver mutations, and the "sub-mutations", as your prognosis, risk for complications is related to these.

Take good care.

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Thanks all for the very kind words :) Now the shock has worn off a bit I am feeling more positive about things - As you guys have said ET is in the 'best of a bad bunch' category as chronic conditions go!

Tom -

I started getting migraines in Nov once or twice a week which over about 6 weeks escalated to 2-3 a day! I knew I had high platelets at that point so was worried it could be related. Short answer is they still have no idea its ET related or just something else that has cropped up. I pushed for a brain scan for my own piece of mind more than anything else and am due to see a Neurologist in a few months, who my Haematologist is speaking to in the interim. GP put me on low dose Amitriptyline in Jan and so far I have been headache free for 2 months.

Roger -

I am in the UK, I had a look at DESMOND, but as I haven't been diagnosed as Diabetic I am not sure I am eligible. I am waiting for a dietician referral, (yet another specialist! I'm certainly getting my money out of the NHS!!) I will keep it in mind to mention to them. I have read the Obesity Code by Jason Fung which talks a lot about IR and it's links into Type 2 diabetes. I am starting on Metformin this week to try and help kick start things on the diet front!

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