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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 don't know yet. I just started 1000mg a day two days ago. I had been taking 500mg then 1000mg alternately. My doctor doesn't think the issues I've been having are anything to be concerned about. I had intestinal pain with bloody diarrhea ( might be IBS?) 3 weeks ago that a gastroenterologist is? looking into and 10 days later swollen legs. I'm fine now.
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1 ReactionThen don’t worry about needing a bone marrow biopsy...they aren’t always necessary to aid with a diagnosis. Your doctor is getting all the information they need from the blood work. Are you tolerating the higher dosage of hydroxy ok?
I’ve been taking Anagralide for a year or so after 30 years of HU. For high platelets. My bone marrow has stopped making red blood cells. Both Anagralide and HU tend to lower red cell counts but I need them to lower platelets. No change in heart problems as I’ve had Afib for years and take Furosemide for that. I’m 87 years old.
No, it was not mentioned. I did have three different blood tests done which showed I was JAK2 positive and not CALR positive. I do have regular (every 2-4 weeks) blood work done to check my platelet etc. numbers to see how my HU is helping.
I am sorry your husband has had heart trouble. I have a bad heart mitral valve, and asked my cardiologist to tell me whether anagrelide or hydroxy would work better for me due to heart issues.
He reviewed side effects and said hydroxy because anagrelide does cause some heart problems in some ET patients.
Many patients are fine on anagrelide, but oncologists probably should be more alert to those cardiac side effects. It seems to be pretty common.
Whether the anagrelide caused or aggravated your husband's problems is something his cardio and oncologist could discuss. If you can get them to. Specialists can have a lot of tunnel vision and are sometimes not inclined to go outside their bailiwick.
Hi @jewelfaux A bone marrow test is a valuable tool for your hematologist. Since you have a blood disorder, a bone marrow biopsy (and exam) (BMBX) goes right to the blood manufacturing center of your body. A small sample of your marrow and the surrounding peripheral blood will be analyzed and examined to give your doctor a clear view of the health of your bone marrow, its ability to form healthy blood products and also check the condition of your specific blood cells.
You can often choose to have this done under a general anesthesia similar to what’s used in a colonoscopy. I’ve had 13 bmbx done…3 without anesthesia and 10 with…for the record, I’ll always have anesthesia from now on. 😉 It’s a fairly quick procedure with very little discomfort after.
Has your doctor recommended a biopsy for you?
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2 ReactionsIs a bone marrow test necessary? I was diagnosed with ET through blood tests. I'm JAK2 positive. I am taking a 1000 mg of HU a day. My platelets were 700 but this higher dosage I hope will improve that. I've never had a bone marrow test.
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1 ReactionI think you need to drink more water. To avoid kidney problem
bec. of the medication.
eGFR is a kidney function test.
My husband was diagnosed w/ ET. It's been 4 years. His RBC and Hgb are low. So by October last year, his doctor added Anagrelide everyday and HU every 3rd day After taking Anagrelide for 2 months, then he developed shortness of breath. Then I took him to ER, and was diagnosed heart failure . His lungs was accumulated w/ fluids and his heart ejection fraction is low By Echocardiogram) I have read from online that one of Anagrelide side effects could cause heart failure. It has been reported . So he stopped taking Anagrelide. It happened to my husband after taking 2 months of Anagrelide . So I wonder if it's just coincidence
After two weeks on one pill of HU my eGFR went from 82 to 52. Has anyone else had any similar results. I’m being treated for MPN/ET/JAK2