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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 could not take the Hydroxyurea either. I am now getting injections of Besrimi every other week. So far no side effects to it. I have had 5 injections so far. All we have is the Lord to help us through these uncharted waters.
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4 ReactionsI hear you loud and clear on August 15. I was diagnosed with ET also with no symptoms. Yesterday I had the bone marrow test and waiting for results. My thoughts are very similar to yours. I did the hydroxyurea for a little while, but it did not agree with me at all. I’m not sure what the next steps are hang in there My, Lord, and my God is keeping me calm I have a tendency to have anxiety. Many blessings to you on your journey.
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2 ReactionsI also had side effects of fatigue, itchy skin and much longer recovery time after a work out. Any one tried Pegasys interferon? I heard some benefits with that treatment.
I was diagnosed back in May 2023 and am on 500 M-T and 1000 F-S-S, my platelets have come down but I am also suffering a great deal from fatigue and shooting pains, bad aches in joints especially at rest and at night. It's all very tiresome.
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3 ReactionsI also started on 1,000 mg per day in February of this year. I have really bad aches and pains. My legs are the worst. It is also worse at night. I haven’t said anything to my Oncologist but I will at my next appointment.
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3 ReactionsWinmil99,
Please see my reply below.
Eileen
It seems that hematologists have different opinions on platelet count and doses of HU. I have held my ground about not taking two a day. I personally feel best taking one 500 mg M/W/F. My next CBC/appointment is November 12.
When I told my GP that she would like to get me to below 400, he simply said that is ambitious!
Best wishes, Eileen
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4 ReactionsI started gradually with HU, 500 mg, 1x week for a month, then increased over 6 months to 4x week. The adjustment has gone well. I also need daily iron for low iron but not anemic and daily baby aspirin. Could a lower dose of HU benefit you w/o side effects. Claritin is supposed to help with pain. Also, are you hydrating have your body weight? I find hydration is so important to my health and ET journey. Consult with your doctor first about Claritin and other changes to your plan. Also, are you seeing a hematologist/oncologist vs just your internist? They know more about MPN's over regular doctors. Wishing you brighter days in the future!
Karla
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3 ReactionsBecky has been on 500mg of Hydroxy for about 3 weeks now with no side affects. As we try to figure out the correct dose, her platelets are currently at 629 with another blood test this Thursday to see if they are still rising.
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2 Reactionsmy plts run between450-650 my hematologist said not to use HU until they hit 1000 just on asa I was diagnosed 1.5 yr ago
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