Hi JockL  I am so glad you have decided to take the Hydroxyurea.  The advantage is that you will probably be able to walk down the road of life much longer, than someone who has an undiagnosed high platelet count, as they will be more liable to heart attacks and strokes.   The magic of your body is that, once the count is down to a good figure and you continue to regularly take the tablets, it does not go on going down - it levels (mine is mid 300 which it has been for years) .  So job done - on with the rest of your life. Cheers Maureen

Hi JockL

Firstly thanks to everyone on this chat forum great help . I got my consultant on Thursday I will then know if I am going to be put on chemo tablets . Don't feel as bad about it as I did last October when first diagnosed because of support from chat forum 
Plaetlets were still up last time despite healthier diet and plenty of exercise in the gym so Thursday I will know more . Keep spirits up everyone and again thanks to all  Maureen Vanessa and jock L

Michael

Yes, thanks Maureen! You are right of course! The most important thing, which both you and Michael have both mentioned, is the bit about just getting on with your life. Cheers J

Hello NM9309. HMD, and everybody else contributing to this discussion.  Thank you so much for your responses and for sharing your own experiences, the positive feedback is very supportive, it has certainly helped during a few sleepless nights. 

It is now almost 2 months since my diagnosis and I am feeling so much better, especially as I am over the cold and chest infection. I did have a course of antibiotics from my GP and wish I'd gone to see her earlier, she was sympathetic and gave me a thorough examination.  I have also seen my consultant again and my platelets are slowly coming down, a scan has shown that my spleen has not been affected by ET.  Just awaiting the bone marrow biopsy now.

Day to day life is feeling as if it is getting back to normal as I make the adjustments of taking extra care of myself. Fortunately, I have always enjoyed cooking healthy meals for my family and love walking and jogging, even thought energy levels have gone down ( I was putting that down to old age pre diagnosis). The itching has gone so that is another reason I am feeling so much better but that is probably down to the light therapy, it may or may not return in the future but I'll cross that bridge when I come to it.

Whenever I start worrying I read the literature that says my condition is not life threatening and visit this forum . It is all very reassuring and helps to know I am not alone learning to live with ET.

Thanks everyone .

Hi Michael 

How did your consultant visit go yesterday?  Has he prescribed tablets to control the platelets?  I am sure you will feel better when all is sorted and normal again - just keep taking the tablets!!   Spring is on its way - our roses are showing leaf buds!  Cheers!

Hi Maureen 

seen consultant yesterday she gave me a load of information to read about  Hydro chemo tablets which I will be going on 

I had a little bit of panic set in when reading info but then realised I will be on very low dose so side effects hopefully won't be to bad  it is what it is as the saying goes . Thanks again for encouraging posts and when in waiting room yesterday seen some people who would gladly swap their illness for mine so looking forward to flowers of spring and summer breezes 

Thanks Michael 

Hi all,

I was diagnosed a couple of weeks ago thanks to a dodgy gene showing up in the bloods (47 year old male).  Have my first appointment at the myeloid clinic in about three weeks so will see what's what after that, but at the moment I'm just carrying on with the low dose aspirin.

Symptoms wise, I've been much luckier than some here and sheer tiredness has been my main issue.  I can now get through the working week but am pretty drained all weekend; the old social life over the last 9 months or so has taken a bit of a hit as a result. Sometimes, the exhaustion can hit me out of nowhere though and I'll suddenly have a day or two mid-week where I can barely think straight, does anyone else experience that?  That can very diffcult to manage in a demanding job and it leaves me feeling rather low.

Still, if those are the worst of my symptoms, I can hardly complain.  As Michael says above, looking around he haematology waiting room, I could see a lot of poeple in a much worse position than I. That said, despite working in healthcare, the diagnosis has taken a bit of getting used to psychologically, but onwards and upwards as they say!

This forum has been a great find and very helpful to me, so thanks to you all!

Hello Sootie

Answering your last question first - obviously my GP knew about it and I am sure that most of them do.  However, I believe it is often detected by chance, when having blood tests for other reasons.  High platelets are noted and, if occuring again with the next tests, presumably the GPS do further checks.  I take the hydroxycarbamide with most of my other drugs in the morning - I can then forget them for the rest of the day, until bedtime, when I need to take a statin and the second half of my heart drug dosage.  I don't have to watch the time then or bother to take them with me, if they are due in the middle of the day etc.  Life feels more normal that way.  I don't think I have any particular symptoms through taking them, just a mental relief that I have been diagnosed - that there is a known treatment which works - and it is not life-threatening!  Good luck with your thesis. x

Hey S, 

Welcome to the club!! 

I found taking HYrdocarbamide at night best time or split between lunch and night depending on tablet dosage. I took 3 tablets to 2 tablets over two  years with injections. The tablet only medication does leave you. Fatigued and minor joint pain usually sorted with paracetamol. Aspirin I take now at night with my current angralide medication or take first thing in morning. 

Good luck! 

N