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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 have been taking .Hydrea for 4 years, for ET. My Hematologist said to take them before bedtime and it would lower the risk of nausea. It has worked well for me. Good luck
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2 ReactionsI have been on hydrea for three years now. My platelet count went from 676000 down to 426000.
The medication causes no side effects . It works.
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1 ReactionI just found this 'connect'. I am 63, was diagnosed with ET when 58. Took low dose aspirin for a couple of years. Then, I developed a clot in my femoral artery. I am now on 1000mg of Hydroxurea 6 days a week, and 1500mg, 1 day a week. Platelets are under 300 and stable. Very few side affects on meds for me. discolored nails, fatigue, so I feel lucky. Also taking 325 mb of aspirin to keep blood from getting sticky. The clot was very scary. It dislodged, and went down my leg and landed in the top of my foot where it was stuck. My foot was changing colors......... Again, I was very lucky. Went to ER and then Vascular surgeon who did testing. He prescribed and Xarelto in two weeks it dissolved. Now, I watch for symptoms all the time. I'd guest I'd rather have med side effects, than the unwanted chance of another clot somewhere. Appreciate you all.
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2 ReactionsYes, and I'm positive.
I’m 63. Did you get tested for Jak-2 mutation?
You and I are pretty much in the same place I also take 1500 mg of hu daily and a full dose aspirin. I was diagnosed last October. My platelet count is almost the same as yours. I am 74 years old.
Need to say they were in the 900’s
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1 ReactionEveryone, I learned years ago that platelet level was not the most important factor in deciding if you needed to start meds. I know it seems weird, but any elevated platelet count is a concern if you are over 60, double concern if you are JAK2, triple concern if you've had a clot in the past.
I am CALR and didn't go on HU until I was 63 and platelets hit 800s. Someone who is JAK2 with a prior clot might need to go on HU in their 30s, even if platelets are in the 500s.
Platelet counts measure whether meds are working and indicate progression.
Doctors use your IPSET score to make HU decisions. Here's the test: https://thehematologist.org/ipset-thrombosis/
Ugh I was put on 500 mg. To start more labs,1000 mg… now on 1500 mg daily. Platelets at 774 now!
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1 ReactionYes, I’m taking a low dose aspirin. Am going for a blood test next Tuesday. I have made up my mind am not going on the medicine unless they start rising, and even then definitely not starting at 1000 a day.
Thank you!
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