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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 started with Hydroxy 14 years ago but because of the side effects I changed to Anagrelide. It has kept my count low but I have recently had to increase to one more 3-4 days a week. I take 3-4 .5 mg. daily. On the days I take the 4th one, I am tired and my body feels aciditic. It may adjust as time passes. Best wishes to you!
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1 ReactionHello, I'm new to this group and to the ET diagnosis, although I've had high platelet counts ranging in the 400s to 700s since I was in grad school in the 1990's. I am now a fairly healthy (vegetarian, daily walks, qi gong, yoga) 64 and since the platelets climbed to 830, my other blood counts have gone haywire, hence the trip to the hematologist and oncologist. They kept testing for genetic problems until they found JAK2, darn it. (I know medical knowledge is a good thing, but fear and dread play a part in disease too, no?) So after decades of fairly* symptom free years with the problem (*I do have migraines, but docs have previously told me they were unrelated to platelets), now it is "you have cancer and probably will be put on hydroxyurea, etc." I am very resistant to this because of the side effects, particularly the sun cancer risk and even more the chance of getting leukemia from the very drug that I'm taking to keep strokes at bay. I am seeing a Chinese herbalist/acupuncturist who is dealing with my symptoms from a Chinese perspective. I have my first bone marrow biopsy on Wednesday, so I will not get the full picture until the next week. I will share results with doctor and acupuncturist and try to sort out whether I am safe to explore blood health from another angle or if I must go with the western treatment. I wish there were some acupuncturists on board this forum to discuss this with. I wonder if there are Chinese specialty clinics like that? If not, I certainly need to consult with a western medicine clinic with a LOT of experience with ET and all its side branches. Be well, my ET buddies!
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7 ReactionsHemos seem to be better at HU dosing. Someone in my cancer group years ago was hit with a high dose of HU right off the bat because his platelets were over 1,000. He had leg pains and other distress and ended up in the ER. He was fine as soon as the dose was lowered.
The thinking now seems to be to start patients on a lower dose, maybe 500 mg 3x per week, and increase as needed.
I have CALR mutation. Started HU 5 years ago. Platelets went from a high of 800s to 600s over a year at 500 mg per day. Next year it was upped to 500 mg per day plus an extra dose 3x per week. Stable in the 400s for four years now.
Less fatigue, fewer headaches and visual distortions on the HU. I do yoga and exercise bike (my bike to nowhere) to try to keep circ going. I am 68, with onset at age 55.
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4 ReactionsYes but I do crave it at times .
Colleen, I have no symptoms other than some fatigue. I am taking aspirin as prescribed by Dr. My concern about starting Hydrea is how it will affect my quality of life at this stage. If I had some other more obvious symptoms that debilitated me, I would consider it perhaps. But, truthfully, I feel very lucky to have lived to 80 with relatively good health, and I will be very thankful for whatever time I have left without taking a chemo drug that could affect my every day life. If I were in my 60s, I might feel differently.
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1 Reaction@sherna09, welcome. Are you able to wean off coffee since it is a trigger for you?
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1 ReactionWelcome, @penmueller1. It looks like you are signed in because you were able to post. 🙂
What are your concerns about starting Hydrea? What symptoms of ET do you have?
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1 ReactionHi my name is Sylvia and I also was diagnosed with high blood platelets about I think 6 months again . Dr also prescribed hydroxy urea generic brand name (hydrae)I had about 1750high platelets It’s down around 540 at one point 380 . I am so confused as to be taking this medication . I asked what caused this to appear and she said she does not know . I notice that when I drink regular sugar , coffee it triggers my body and I get pain all over like kind of swelling pain if that makes any sense . I drink baby aspirin as well . I sometimes think I need a second opinion for I’m afraid taking hydrea might give me another form of cancer … Mysty I live in Austin now but my home town is El Paso …I’m here for you all .. u all are not alone ..
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1 ReactionNot certain this is going to post as I still don’t have a password , so this will be brief. I am 80 yrs old and this year was diagnosed with ET. Platelet count has varied between 525 and 625 this past year. My hematologist wanted me to take Hydrea, 500 mg twice a day. I am hesitant to start at this stage of my life and also because my platelet count is not as high as many. I am told I have the JAK2. I have not had a bone marrow biopsy and it hasn’t been suggested. Any thoughts?
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2 ReactionsThank you....I will take your advice.
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