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Essential Thrombocythemia: Looking for information and support
I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!
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I am looking at surgery to repair a faulty mitral valve (heart). We are all hoping this can be done trans catheter (by snaking a repair tools thru the groin and avoiding open heart surgery). However, if open heart surgery is indicated, the cardiologists tell me that they prescribe enough heparin so that aspirin will not be needed. My oncologist seems to think that as long as I stay on the HU, my stroke risk won't be any higher than anyone else in my age cohort (65+).
My main concern is that these hot shot doctors talk to each other and take the complexities of having surgery with ET seriously.
Talk to your oncologist and alert him/her to impending surgery.
That said, I have talked to other ET patients who have had no problem with joint replacement. The only one who experienced difficulty was a woman who had declined HU therapy and got an orthopedic surgeon who refused to operate until her platelet count was in the normal range. So she broke down and took the HU, and hip surg occurred without incidence some months later.
Hi Lynn, welcome. Both @nohrt4me @huronshores have ET and have had joint replacement therapies. They may be able to share their experiences in preparing for surgery, reducing clots and stroke risk, and temporarily going off aspirin.
Is your surgeon aware that you have essential thrombocythemia?
Been taking Hydroxyurea for 1 year. My wife says my hair isn’t as thick, but I can’t tell.
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1 ReactionDid you need to stop taking Hydrea in order for your hair to grow back?
I did for a brief period...then it stopped and grew back
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1 ReactionI have been on hydrea 500mg for the last 3 years . It is chemo but really has no side effects and my platelets have dropped from 700 to 425 which cuts the risk of stroke down. I do have to take asprin along with the hydrea.
hope this helps you.
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3 ReactionsMy hair is thinner but I am not sure it is due to the Hydrea. It could be aging or hormones.
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2 ReactionsI would like to know if anyone lost hair when you started taking Hydrea?
Yes, it is a chemo drug.
I never touch the capsule. I slide out a capsule onto another lid. You need to take with a full glass of water. I squish some of the water around my mouth first and then slide capsule into my mouth and drink the rest of the water.
To avoid the toxic effect you should drink minimum of 64 ounces of fluid daily.
Eileen
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1 ReactionHi Everyone, I have ET for 20yrs. On Hydrea and aspirin for 10 years. Triple negative for mutations. Side effects for Hydrea and asprin were gut issues. Heartburn and some mild esophagus and constipation. Now I drink 100 oz of water daily, take meds with food in the morning and went gluten and dairy free and am doing much better. I am 68 yo female and doing pretty well. Yes I do worry about thrombosis and stroke snd PE. But overall doing well.
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