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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
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!
Replies to "Hi I was newly diagnosed with this and am waiting to start on medication. I am..."
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.
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.
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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.