Essential Thrombocythemia

[Wilma66]

Hi,

I'm Wilma and I have Essential Thrombocythemia

I was diagnosed in 2013. I still don't know very much about this disease.

I know I sweat a lot. Get hot fast. Feel tired all the time!

[francesb]

Hi Wilma, you will find loads of useful information on the MPn Voice website and the editor Maz will send you information if you ask her, she can also pair you up with a buddy, someone with the same diagnosis as you. You'll also get lots of information and support from the nice people on this site so you've come to the right place. If you don't already see an MPN specialist it might be a good idea to find one in reach of where you live as some doctors don't know a lot about MPNs. Best wishes, Frances.

[Mazcd Partner MPNVoice]

Hello Wilma, welcome to our forum. I would advise you to have a look at our website mpnvoice.org.uk which has lots of really useful information about ET and the other MPNs, medications, side effects and how to cope with them, and lots more. There are also lots of videos of patients talking about their MPN

mpnvoice.org.uk/about-us/vi...

and also haematologists talking about MPNs, treatments, studies etc. There are also some very inspiring real stories on there you can read

mpnvoice.org.uk/living-with...

and as Frances has said, I can send you information in the post if you email me at [e-mail] with your details. You can also read and download all our information booklets from the website

mpnvoice.org.uk/about-mpns/...

Best wishes, Maz

[Wilma66 in reply to Mazcd]

Thank you for your reply and the web page. I need all the info I can get.

[lizzziep]

Hi Wilma, I have ET too. I've found lots of good information and help from this site. There are lots of other people on here who have had ET for a long time as well as newly diagnosed sufferers, we're all looking for information all the time, trying to find out what is "normal" for ET sufferers - although it seems many of us are different!! I get tired, have night sweats, occasionally feel dizzy/light headed. I took Hydroxy for over 3 years then developed side effects to it, I'm on Anagrelide now, as well as aspirin. There's always somebody on here who can answer your questions, or give support when necessary.

Best wishes for the future

Lizzie

[Superwoman]

Hi Wilma,

Welcome to MPN Voice, I have ET JAK 2 + when I was told I must admit although devastated was pleased that at long last all the problems I had in the past were not in my head but this was the route to all my health issues for many years, so like many on here I have come to terms with ET and get on with my life and never feel the need to PHONE HOME !!!! Just come to our forum and if I have any problems someone on here has always got good advice as we are all in the same boat, great site to be on.

I have take Hydroxycarbamide, Asprin, and a few other tablets, and for the last few years all has been well long may it last. What I find is that I do need to drink plenty of water each day, eat a well balance diet with lots of fresh fruit and veg, and take plenty of exercise, mind you having grandchildren keeps me on my toes.

We all know how you feel, we get our good days and some bad, but we are all here for one another if we need to let off steam, or to just to talk to someone this is the place to be.

So welcome.

Jean

[Alexabbie]

Hi Wilma hope you are well,I have had essential thrombocythemia for 16 years,I was on hydroxyurea for about 3 years but after a lot of studying the hydroxyurea long term what I read was it can have the opposite effect and there is 10% chance of getting leukaemia and as a have a young daughter to think about I am on intron A injections which take a couple of weeks to get into your system

[Wilma66 in reply to Alexabbie]

Thank you Alexabbie, for your reply. I do have concerns about Hydrea but, I'm trying not to think about it. My hematologist keeps checks on my CBC and says everything looks good. When you are faced with something like this first, you trust The Lord and hopefully your Dr. I have gotten mad at my dr. for not telling me what I want to know about this disease. He did tell me it was not cancer. He said, with this disease we have to worry about blood clots. That is a worry!! I saw my mama sulfur with blood clots. She was in and out of the hospital with blood clots. I don't know if she had ET or high platelets. Take care and God bless you