Newly diagnosed. ET jak2+

Hi all, I'm a 43 year old male, and only got my diagnosis on 21/3/2016.

I must say that I went straight home and worried myself half to death by reading all sorts of things on the internet about the condition. I'm so glad that I have found this community early. As I have only just had my diagnosis and am not quite sure what to expect in the future. I'm just looking for information. MPN Voice has already been a source of much needed comfort, and has helped me to calm down and not to believe all you read online.

12 Replies

  • So pleased you found us and you will get loads of info and support here welcome

  • Hi Rob - welcome on board - inevitably it's worrying for us all when first diagnosed. I was 47 when first diagnosed and 13 years on I've learned that ET is something that isn't too difficult to live with - I've been lucky to be symptom free and was on aspirin only till last October, when counts consistently over 1,000 plus approaching 60th birthday led to me starting treatment with Pegasys, which has worked really well. As you've already found, this site and MPN Voice are a great source of  information, advice and support so use them as much as you can. What sort of level is your platelet count running at currently and what are your doctors suggesting as a treatment plan..? All the best, Andy

  • you will find some nice people here Rob. We have all had support from each other and are all ready to give it. It is a bit frightening to be told your condition is incurable and you are very young. However you will find that when your bloods are stabilised you, like most of us if not all of us on this website live a next to normal, happy life. We all have moan now and then and get moral support from each other. We can also have a laugh and empathise with each other in our daily lives. Keep us posted with how you are doing. We really are interested. X

  • Welcome to this wonderful forum! All of us have gone  through that bewildered stage :-) the oddest thing I think is that so many medical people don't really know what these conditions are or mean - I have ET too diagnosed 4 years ago and it's great to have access to the fantastic advice available here.  

    Ask loads of questions & be reassured that by looking after your diet & exercise & doing the things we need to do to live with ET life is good :-) we share stats here which is quite helpful to see his others are managing with similar stats & there's fantastic support whenever you need it.  


  • Hi Rob, welcome to the forum. It's natural to worry at first but the support you will find here will help you through. I know it did me when I was first diagnosed 3.5 yrs ago. Hope you keep well.

    He's wishes, Karen 

  • Hi Rob! I have ET, diagnosed about 5 years ago. I was just on aspirin until I got to 60 when my counts jumped so I've been on Hydroxycarbamide for nearly 3 years now. Like you I Googled ET and scared myself to death! Fortunately I also found this site which has been such a help when I've been worried about things which usually turn out to be "normal"!

    My ET doesn't affect my life like my arthritis does! In fact most of the time I hardly know it's there. It was found on a routine blood test, the symptoms I had I didn't realise were symptoms - tiredness, itchy hands and feet.

    The Hydroxycarbamide isn't too bad - I don't glow in the dark - yet!! 

    You'll find any questions you have can mostly be answered on here.

    Best Wishes


  • Hi Rob,

    Welcome to the forum. Dr Google has a lot to answer for at times.

    I was diagnosed with E.T. In November and like you and lots of others here, went straight on the Internet. Luckily the dedicated nurse they gave me suggested this site and it has been very reassuring. You will get lots of information and support here, it is a great community to belong to.


  • Hi Rob, welcome to our forum, I can see you have had lots of lovely replies to your post, the folks on here are a really supportive bunch.  We all know how you feel, it is a very scary time when you are first diagnosed but at least you have now found our website and this forum.  Best regards, Maz

  • Glad you have found us. We are a friendly bunch and with a great deal of shared experience so feel free to ask questions. The Internet can be a scary place. In fact I was talking to someone yesterday who said he googled his condition and was convinced he was going to die before he had a chance to turn the computer off! You have defin found a good place to come

  • Hi Rob ,

    I was diagnosed with ET at 47 and I am still hereat 71 living a fairly active albeit retired life. I did engineer it to retire at 55 as I wanted to maximise the use of my life.

    all the best Town crier

  • Welcome to the group Robert, as you will see, everyone is very supportive and more importantly very positive.  It is 4 years since I was diagnosed but think I had it for a few years before that judging by the symptoms I had. I am 77 years old and am asked where I get my energy from, I am constantly travelling and refuse to give in even though I also have heart failure. I am booked to go to Paris in 2 weeks time, May I am touring Italy and July cruising to Spain and Portugal. My GP told me (with a laugh) the powers that be have assessed me for "Home Care". As he said, they would be hard pressed to find me in!!! So, you see, it is easy to live with MPNETJak2. You just have to ignore it, eat well, take gentle exercise. take your pills and keep your hospital appointments. Love Elsie xx

  • Hi Rob, glad you have joined this merry band. We are a very rare bunch but at least we have each other, so you will never be alone, I feel like most of us that we just get on with our lives, take our pills if we have them and if you have any worries we are all hear for each other they are all great.

    So look on the bright side of life and enjoy it to the full.


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