Essential Thrombocythemia: Looking for information and support

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!

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!

Hi Lydia,
Thank you for your response and personal statement about ET. I have no gene mutations and am wrestling only with the elevated platelet issues. I am continuing to seek out information and like you, was encouraged to get a 2nd opinion by a friend and have been in contact with Sloan Kettering. I am not sure about the value of another opinion, because over the years, my numbers have been consistently elevated. It was important for me to hear from someone who has taken Hydrea, to hear about a personal experience, so thank you for that.
Would you be open to sharing what your side effects are/have been and, is it expected that you'll be taking Hydrea for life? Also, are there any limitations that you're aware of, while on this drug? I'm working to stay positive, but my diagnosis is new enough for me to still be rattled.
Thanks again for your kindness. Good luck to you, too!

I was diagnosed with ET (CALR mutation) and acquired Von Willebrand Syndrome in July of this year. After a routine wellness apt with my primary care doctor, my platelets were almost 2900. I had no idea what it even meant. After all the tests and bone marrow biopsy came the first diagnosis of ET. In retrospect, I was having symptoms but didn't make any connections...weird bruising, nose bleeds, tingling and numbness in my hands, swelling in my lower legs, headaches, etc. After my bone marrow biopsy bled for two days at the site. Not just slightly but continual bleeding and non stop. A trip to the ER was told to apply continual pressure. The next day, still the same continual bleeding. Went back to the ER (it was the weekend and we don't have an urgent care) and finally they sutured it closed. This all didn't make sense. I was given a diagnosis that was supposed to cause clotting, why am I bleeding so much??? Two weeks later I had to have a bc implant removed. The same issue, excessive bleeding and needed sutures to stop it. More testing and it turns out that I have acquired Von Willebrand Syndrome as well. WHAT? A clotting disorder with an excessive bleeding disorder made no sense. I lack a protein that allows my blood to clot. SOOO counter intuitive. Fast forward to 5 months later and I've been on Hydrea for 4 months now. Starting with 500mg, then 1000mg and now at 1500mg plus iron supplement to combat the caused anemia. My platelets are down to 1000 now but probably won't go any lower with meds because my wbc have dropped too low. It's a weird dance now to keep all my numbers in check. We're not quite there yet. I have a great doctor that I am confident with but it has taken a lot of patience. Blood draws every two weeks for the forseable future and trying to stay away from anything where I might injure myself. Hydrea does cause a lot of fatigue and my GI tract is definitely not happy but I guess it's a small price to pay for keeping my numbers (close to being) in check. Two rare chronic cards (cancer??) but fortunately neither were passed on to my kids since one is a mutation and one is acquired. Staying positive and appreciating all the good in life 🙂

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.