Hi,

Thank you very much and I hope you are doing well! 

How long did you stop the aspirin for before you started again, if you did at all? 

Kind regards

Hi from Ireland.

Great thread here. I’ll post my story later, just wanted to say hi for now.

Hello ETGOHOME  Share away.  There is lots of reassuring info from various people about ET, so I hope you continue to find it all useful.  It's nearly Spring!  Maureen x

Thanks Maureen,

I’m male, 45. Routine blood tests showed a high platelet count late last year. Various other tests ruled out secondary causes and I was diagnosed with ET 4 days ago. I’m on 500mg of hydrea and aspirin. My last blood test showed a playlet reading of 690. 

Its a bit early for any side effects to show as yet but my biggest fear is I’ll have to stop running. I run at least 10k a day. Anyone else here have any experience with running whilst taking these meds?

Another question. What’s people’s thoughts on actually telling people about your illness. Has anyone actually kept it to themselves?

Hi ETGO HOME   My ET was also discovered by a routine blood test 21 years ago.  Unfortunately, I was put onto a trial drug, which affected my heart (people on it now have regular heart checks), so I was changed to hydrea (hydroxyurea) after 2 years and I don't think it has stopped me doing much, (although I now also am on permanent heart medication).  I was 60 when I was diagnosed, but still worked and ran a Guide unit (taking them to camp) and exercising every week, as well as seeing my children and my grandchildren.  I am not really aware of any side effects, except that unfortunately, it doesn't stop me getting older and a little fatter as the years go by!  My feeling is that, if I had to get something that permanently affected me, ET was much better than a lot of other cancer-type illnesses.  Because the ET was found in me and because of the drugs I take, I am much less liable to heart attacks and strokes than a lot of other people.  Let your body get used to the medication and perhaps to start with, keep a note of how you feel.  Check with your GP re running 10k daily.  If, for a period of time, something then seems different from before, it is good or worrying?  If it is worrying, talk it over with your GP or Consultant.  You will be monitored regularly - I now see my Consultant every 4 months to get more tablets.  My close family know I have ET, but it is invisible - we cannot give it to others and I don't need special consideration for anything (my heart problem and consequent breathlessness sometimes needs explaining!).  Be glad it was diagnosed, monitor yourself for a while and just get on with living the next 50 or so years - I intend to get to 90 at least!  Cheers! xx

Good one - positive thinking!  Enjoy! Maureen

Hi ETGOHOME,

Maureen has summed everything up really well.

ET has never stopped me doing anything in the last 20 years and like Maureen if I was going to get something that permanently affected me I’m thankful it was ET and not anything more sinister.

My family and close friends know I have ET and when I was working I had to tell my employer (because of hospital appointments). Apart from that nobody really needs to know unless you want to tell them.

Welcome to the club and keep on doing what you enjoy!

Vanessa

Hi ETGOHOME,

I'm female, 67.  Diagnosed with ET just over 2 months ago. At present I'm on 500mg/1000mg hydrea on alternate days and daily asprin.  At first I was panic stricken about it and had many questions but am now feeling so much better especially with the help of the lovely people on this forum.

Like you I worried about telling other people, mainly because I am a private person by nature and we live in a village where rumours fly so it was important that it was explained to our children first.  Once that was out of the way I told my closest friends and it got easier everytime I talked about it.  So now I'm happy if my husband mentions it in the pub because he is the opposite of me and needs to talk about things, ( he finds it impossible to keep a secret for long)  but we don't mention the word cancer, it is my blood disorder.  I think it helped me to get used to it before telling others.

Again, like you, I am a runner but not in your league, I do 3 5k runs per week and have just celebrated my 100th park run.  I continued my runs without a break after diagnosis.Unfortunately, not long after I had a chest infection and didn't run for 5 weeks.  It was the first time in over 3 years that I'd had more than a week off running so when I started back I found it hard and my timed runs were slower so I was worried that ET or ET meds were affecting me, but that may be a psychological thing  because every week there is an improvement.  So I would say so far the meds are not affecting me. Like you I shall monitor myself but believe that running is beneficial to me physically and mentlly.

Good luck to you.

Thanks for your response Jrunner.