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Is Essential Thrombocythemia a blood disease or cancer?

Blood Cancers & Disorders | Last Active: Jun 19 10:43am | Replies (97)
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@williamsjen

I agree with you, I call it a blood disorder, i just hate the cancer word. I have been on HU since October PLT went up to 1000 after I had my covid vaccine, my platelets have been down for the last 3 blood draws now at 333 I feel back to my old self with lots of energy and wanting to run again. I take 1500 of Hydrae a day, aspirin not every day. I feel much better i just have the problem with my feet like pens sticking in them some nights. I just wonder if I will ever stop worrying about this blood disorder and where I will go from here. I have not told anyone of this issue as I do not want my children to worry as they loss their father 4 years ago to a stroke.

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Replies to "I agree with you, I call it a blood disorder, i just hate the cancer word...."
janemc | @janemc | May 10 6:20am

You're so brave, Jennifer. I am so sorry about the tragic loss of your children's father.

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nohrt4me | @nohrt4me | May 10 7:11am

You might want to tell your family when the time is right. I told my son and brother to keep an eye on their platelets. The driver mutation isn't inherited, but researchers think a tendency to mutate may be. There are "family clusters" of the disease. I have ET, Dad had it.

Great to hear you are feeling better! I find that my stationary bike helps with foot pins and needles and tingling in fingers. Anything that gets your blood circulating helps. Happy running!

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christina3444 | @christina3444 | May 10 7:20pm

It is a nasty word, isn’t it. Call it whatever makes you feel more in control of things.
I take 1000 mg HU daily for PV for the last 5 years or so.
I have numbness in my feet and legs up to about mid calf. For maybe the last 6-8 months I have been getting weird sharp pains and what I think must be Restless Leg Syndrome.
I received a gift of peppermint tea at Christmas. I had never had it before. One night a couple of months ago I decided to try it and dropped some pieces of crystallized ginger in it to sweeten it up. After a week of the tea I realized my legs weren’t bothering me as much at night. I’ve kept up that nightly cup of peppermint tea with ginger and it is, I think, helping the pains in my legs and making it easier to fall asleep. Just an idea for you.
I am sorry for your and your children’s loss.

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