Essential Thrombocythemia: Looking for information and support

Thanks for the encouragement! I'm just worried because I fear that I've had this for a long long time. I had a hemorrhagic stroke when I was 24 caused by a vertebral dissection and we never knew why it happened and I've always had chest pain ect and then in 2018 I had another dissection of the vertebral artery and didn't know why. Then 2 years ago I was diagnosed with CAD and had 2 stents placed in my LAD and still have 50% in my RCA and was recently diagnosed with the cardiac microvascular disease which is the slow flow of blood into my heart. Now I am short of breath constantly and have chest pain pretty much all of the time. I've always been on a full adult aspirin and had previously taken plavix for my stents. So hopefully with knowing what we know now I can get on the right meds. I just hope it's not to late for me....

Hi I was newly diagnosed with this and am waiting to start on medication. I am symptomatic with constant chest pain and shortness of breath though. I am JAK2 negative as well. I was just told by my mom's close friend and her daughter that this is not a cancer and that it is a disorder and that I need to except responsibility for the things that have happened to me and basically to loose weight and eat healthy, exercise and take my meds and I will feel better. I told them both to say that to the others that have been diagnosed with this cancer. I'm scared but remaining positive. I never had thrombocytosis my platelets have always just been elevated. Good luck with everything!

Hi @cweible19782006 I just read through your reply and my first thought was, “Wow…with friends like that…”. You can fill in the blanks! 🙃
They’re not very empathetic to their friend who was just diagnosed with a blood disorder…and for the record, it is also a blood cancer. Technically, Essential thrombocythemia is an example of a myeloproliferative neoplasm. These are blood cancers that happen when your body produces too many blood cells. In your case it’s too many platelets which can cause some serious health risks such as blood clots.
So, for you, this diagnosis is a life saver! The medication you’ll be given will help keep reduce the platelets and sustain them at a healthy level.

While we can all benefit from a healthy life style and exercise, thrombocythemia is not a result from anything you’ve done. I really am sorry you were the recipient of your friends’ callousness. You are not deserving of comments like that.

Good reply. It is a chronic blood cancer, no denying. My doctor told me that as long as I take medications, I should have a normal life expectancy. But it is a VERY SERIOUS disorder, not to be taken lightly. Without medications stroke or heart attack could result, and it can affect your immunity and general well being.

See my post above. I’ve had ET for at least 30 years with no symptoms of any sort. I believe it is a cancer but your hematologist will take blood tests and will adjust medication to control platelets and red blood cells. I wonder about chest pains and shortness of breath though. They don’t seem to be symptoms of ET. Good luck and you’ll see it’s not so bad.

Is it safe to use the Hot Tub when taking Hydroxyurea?

Yes, people will say cruel things sometimes. I chalk it up to their being so afraid of illness themselves that they are in denial about the inevitability of anything happening to them. I guess they think that if they do everything "right" they'll live forever.

Take care of youself, do what the doctors recommend, and never treat other sick people that way yourself.

Thanks for your reply. My shortness of breath is a complication from my cardiac microvascular disease which I have read can be a complication of essential thrombocythmia. How high were your platelets when you were first diagnosed if you can remember and did they ever go up and down?

with ET taking HU, I found my skin got very dry and itchy if I took hot showers, so my showers are less hot now, and my skin not as dry and itchy......my 2 cents
So while hot tub might feel good, your skin might not like it.....

When I was first diagnosed last autumn, my platelets were 760. In a couple of months they dropped to 630 but since have increased to 830. My Hydroxyurea was recently increased to try to bring them down. I'll know soon whether the increased medication is enough. I'm been taking 325mg of aspirin daily since I was diagnosed. I'm 74 years old.