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Essential Thrombocythemia: Making treatment decisions
Blood Cancers & Disorders | Last Active: 11 hours ago | Replies (403)Comment receiving replies
I am 73 years young! In April, 2024,I was diagnosed with ET, CALR positive, JAK2 negative. My initial platelet count was 646. At that time, I decided not to take the recommended hydroxyurea, but after a bone marrow biopsy confirmed the diagnosis, I decided to take the medication in March, 2025. After 9 months on the medication, my PC is down to 447. The medication has worked to lower my count. However, I have lost 2 teeth and have had tremendous hair loss. So I have decided to stop taking the medication and am utilizing acupuncture and Functional Medicine alternative treatments. I have agreed with my hematologist to have monthly blood draws to check my status, and will meet with her in February to assess my situation. I have never had any symptoms from ET, take no other medications, nor have any other co-morbidities. To control arthritis I eat an anti-inflammatory diet, work out at the gym 5-7 days/week, take my supplements, and have maintained my weight from the 25 pounds I lost 9 years ago. I feel all of the things I do regularly make me a lower risk for a stroke because any pharmaceuticals I have ever taken cause serious side affects, especially hydroxyurea.
Replies to "I am 73 years young! In April, 2024,I was diagnosed with ET, CALR positive, JAK2 negative...."
Hi@lehall125,
I, like you, have CALR mutation and do not care to take Hydrea. I also have no symptoms and feel that I am healthy taking no meds. I do check my BP each morning and it is normal at home, but my systolic pressure spikes at doctor appointments and my primary doc said I have White Coat syndrome and just to take my BP at home daily in the morning like I am doing to make sure it stays normal which it has. I exercise daily, weigh 107 which I have weighed for 30 plus years, and do stretching and yoga often so I am very flexible with no pains. I am 66. I do have high platelets so I take low dose aspirin daily but was told not to while I had my facial surgery recently for another skin cancer. I am tapering back up to daily as I did notice my facial wound had a small area bleed when I took the aspirin right after the surgery. I imagine if I did take Hydrea, I would have even more skin cancers and I just do not care to have that happen.
Thanks for sharing.
Happy New Year 2026!
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@lehall125
You and others might find my experience informative. I was diagnosed with essential thrombocythemia about 10 years ago (JAC 2). Hydroxyurea worked well for me for about 8.5 years, until suddenly a painful ulcer appeared on my ankle. For six months, it would not heal, despite much testing, visits with specialists and treatment at a wound care center. After eight months, I stopped the hydroxyurea, at which point it immediately began to heal.
Four months ago, I began with Besrimi (bi-monthly injections., 150mcg). I have had no side effects and with with minimal dosage have been able to reduce my platelets to about 300.