Just been diagnosed with ET

Hi there, I have just been diagnosed with ET (this week). I don't know much about it but have read load of stuff on the internet and getting a bit confused. I have been put on Hydroxycarbamide and Aspirin. I go back to the hospital next week to see how it is working. I don't think it has sunk in yet. I would be most grateful for any info and support about this condition.

13 Replies

  • Hi sjdard, Try not to fret, you will find a lot of info today on the internet, i was diagnosed in 2007 and have just learnt to live with the condition, you really need to google to educate yourself about the condition. If there are any of the MPD forums in your area...Do attend, they are a fantastic event for learning more and meeting people just like yourself, i am due to start the drug Hydroxycaramide myself shortly ( depending on my blood counts ) so we can swap notes on that one, i keep telling myself that this is not a ideal condition to have, BUT it could be a lot worse...Good luck...Patrick.

  • Thanks for you comments, will keep in touch how I'm doing on the Hydroxycarbamide....

  • Hi sjdard, I was diagnosed in February this year and whilst it was a shock initially you just get on with it. Upto now I had the weekly visit to the hospital for regular inr checks and "donating blood"!! Started the hydroxyurea last month and get quite tired at night. The web is a good place to get information but I've found this website really good as it all about real people with ET telling you about their experiences. Also don't be scared to ask questions. Good luck..Andy

  • Hi sjdard, I know how you are feeling and wish all the information on this site was available 12 years ago when I was diagnosed with ET.I was on Hydrea & aspirin for 10 years.There is a lot to take in and the journey you are about to embark on will be different yet similar to others,please remember there is no such thing as a stupid question there are just questions you need answered! We are all in the same boat and deal with things in different ways.Some times too much information is not good and can be misinterpreted,I wish you well and hope you can find some solace in this site.

  • Hi sjdard i have ET in 2005 it was a big shock as i felt ok just had routine blood test ,then GP wow then my journey started i also had hydra then anagrelide always asprin my platelets were over a 1000. I found loads of info on the web i did read to much can lead you down wrong path try to stay with ET only?.i planing to attend a forum.in time i have learn to except & live to my limits mostly fatigue. Margaret

  • Hi i have had ET for 25 years and have been treated with HU and aspirin for 16 years. It doesn't stop me doing much but I do have to rest. I am now 67 retired but still pretty active with Britain in Bloom mowing ,dragging water about and town crying. i also cyle and walk abit . Do get night sweats ans nd swollen ankles sometimes. Not everybody is so lucky as me but many are.


  • Hi, I was diagnosed with ET in 2004 following pre op blood tests. My platelet count was over 1600 but I had no symptoms. The surgery was cancelled and I had spleen check and bone marrow biopsy and then placed on hydroxyurea. I see my consultant every 3 months for a check on my levels but other than that I do not think about it and lead a normal life. Exercise is good, but isnt it anyway. It is not a death sentence and research is being done all the time so try not to dwell on it.

  • Thanks, your comment about not being a death sentence and not to dwell on it is spot on

  • Hi ,I was diagnosed with et in 2006, was very scared, didn't know anything and felt very much in the dark. It was only until I attended a forum in London last November did I start to feel better about things. I have been experiencing symptoms such as nausea, dizzyness, itching, migrane, fatigue. I have seen doctors but they seem clueless. I have only just discovered this site today and I am so grateful for it, it's nice not to feel so alone.Thank you MPD.-Jase

  • Hi sjdard

    I was diagnosed 4 years ago and the initial information overload can be a bit much but it helps to understand the condition. I have been on Hydroxycarbamide with no major issues, I'm now on Interferon and Anagrelide.

    I find I can still do all the things I want to do but it takes a little more time due to lower energy levels.

    Don't be afraid to question Doctors and the Haemotologists if your not sure about the information they are giving you.

    You will no doubt have a lot of appointments at the start but it will settle down I now attend the Heamotologist every 6 months for a check up.

  • Thanks Steve, any info or advise is much appreciated

  • It is scary and confusing at the start, with the terminology and long tablet names with masses of unpleasant side effects. I was diagnosed 14 years ago and just like every one else it doesn't have much of an impact on living a full and normal life.Except on life insurance costs! Stay well

  • Well it been 3 weeks now since being diagnosed. My counts have come down which is good news, but at the moment I am like a roller-coaster with my emotions, don't no if I come or going at time. I am so tired, but can't sleep. I have no energy and don't want to do anything, work is a big struggle, I work on a checkout in a busy supermarket and I completely shatter after my shift. It hard to explain to people that you have a condition that can't be seen and you feel unwell. Have made an appointment with occupational health hopefully they will be able to help me as I struggle to explain and make myself herd at work. Also going to see my GP about the mood swings I am getting. Hopefully I will start to feel better soon.

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