Hi again,

sorry my first reply was so long and wordy.  Please click on the 'read more' because the second part is the more interesting bit.

Hi I was diagnosed 2 days ago. I am now on a tablet chemo hydroxycarbamide. It was originally found through a random blood test revealing high blood platelets.I was told it was a switch in the chromosome that doesn’t switch off when you have enough. I’m 70 and have been very active and travelled extensively .T he high level of platlets means my blood is thick and sticky and prone to clotting and I,m very lucky I haven’t had a blood clot before now.or a stroke. I now have to wait to see what the travel insurance say. Anyone else had any problems with travel insurance,or the chemo drug? 

Did you have a bone marrow test?

sabie

Hi I feel the same swap one issue with the possibility of others. I , m 72 and only had one dose of hyroxycarbamide. When did your  reactions start to the drug..

Not sure what it,s all about. Apparently I ve had high platlets for 17 years. It only recently they discovered the JAK2 chromosome 2013 I think. I feel quite bewildered

by it all. 

Dear Sabie,

Don't panic! After all we're still here and have served our three-scores-and -ten without conking out.

I'm 77 and I've no idea how long I may have had this ET.  At least two years judging by the symptoms, but who knows.  Medical research is only just getting to grips with our particular problem (it's pretty rare after all).  It's amazing to be around when so much is being discovered.  The CALR mutation that I have was completely unknown 6 years ago.  I was thrilled to find out about the link with slow-healing fractures and tell my haematologist and the orthopaedic guy about it and I hope I find more news to pass on to others.  It makes having the ailment sort-of 'useful'.

 I've been taking hydroxycarbamide since June without ill effects so far, tho as you know I have worries. When I first saw the haematologist and she urged this drug on me, here's what she said:

"If this treatment works, you'll die of something else!" 

I loved that, it still makes me laugh and I love the way people I like laugh when I tell them.  But of course I wonder, in the wee sma' hours, if something else would be better or worse.

All we can do is live for the moment and that's what I'm doing, for the moment of course . . .

Cheers. folk

hi I was diagnosed in 2008 with a count of 1778 !! I took angrelied then Hydroxyurea n finally interferon injections 

in 2011 my count was down to 722 but wouldn’t come down anymore I decided against my oncology consultant to stop medication since it’s not got any higher so for 8 years it’s stayed at that I just now have my bloods done every 6 months will it rise again or stay in this surprrssed state ?

Hi Everyone, I am new to this page. I was diagnosed with ET last year, at first it was very difficult but I'm slowly coming to terms with it, I'm on a low dose of aspirin per day. 

Hi - it is a shock when first diagnosed, and we all spend time trying to find out why we have this. I was diagnosed 8 years ago. I’m a retired teacher so have never worked in any industry using dangerous products. I did wonder at one point if I developed this from the fall out of ionising radiation as my husband died from lung cancer and had many scans to check the cancer hadn’t spread (my consultant actually wrote in my notes that my husband died of lung cancer, which is what made me think this might be of some significance). I’ve also read that ET is more prevalent in the Ashkenazic Jewish population. I didn’t think that this related to me as my family are all CofE or RC. However, I’ve recently started on my family tree and have found that some direct ancestors were Jewish immigrants who left Prussia to escape persecution. The ET hasn’t really caused me significant problems. I just have three monthly blood tests and take 500mg hydroxicarbarmide daily for 5 days a week a 1000mg for 2 days a week, and 75mg aspirin daily. This controls my platelet levels very well. My spleen is enlarged which caused very bad acid reflux that actually damaged my vocal chords, so I also take omoprazole to stop that happening again. It took me some time to stop being angry that I had this, but I’ve adjusted now and tbh apart  from blood tests and medication my life has hardly changed. I hope that you’ll be lucky enough for that to be the case with you too. 

hi. Just been diagno wit ET today. How do you get your head around things.?

I  am a 73 year old reasonable fit and love travelling.I was diagnosed last November. I m on hydroxycarbamide aspirin and omeprozole ( to protect stomach).Though a lot of information on the ET and drugs to treat it seems over whelming and frightening, the thought of having a stroke or heart attack is even more scary especially if you could lose your independence. I can report that I have had no issues with the drugs or ET (spleen ok) and lead a very active life. Must be good even my health insurance gave me annual insurance cover for long haul flights including America. Keep positive .

Hi Sabie, welcome to the club.

I'm 78, very active like you and on hydroxycarbamide and omeprazole (not aspirin though as I have a stomach history).  The issue I've had mind problems with is the drug, feeling uneasy, wrongful really, about attacking my own immune system - a kind of felo di se. And the drug seems to put one in the wholly unwished for situation of choosing one's fate:  strokes and heart attack vs skin cancer etc!!

 I've been hoping that the platelet count would come down enough for me to cut down the dose, but it hasn't so far.  I'll have my routine blood test next week but I'm not hopeful.  In fact after a year of this I'm pretty resigned to the situation.  One gets used to it and after all the bottom line is not to become a burden to other people if at all possible. 

Best wishes