← Return to Essential Thrombocythemia: Looking for information and support

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@treeore

Hello, 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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Replies to "Hello, I'm new to this group and to the ET diagnosis, although I've had high platelet..."

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!

@treeore how did the bone marrow biopsy go? Have you heard of integrative medicine?

How was your biopsy ? I was wondering about acupuncture ? Or Chinese herbs .. You have the same concerns as I do wish you all the best !!!