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I was diagnosed with ET (Jak2), about 2 years ago. My platelet count was 550 and doc put me on low dose aspirin and wanted me to start Hydroxy. After I did much research, and hearing some of the side effects of this chemo drug, I decided not to take it (probably much to the chagrin of my doctors). I am 81 yrs. old and otherwise in good health. Since my diagnose, my platelet count has stayed in the mid 500s. I have traveled extensively, enjoyed my grandchildren, and have not been sick, other than a case of covid. I am wondering if anyone else with ET has chosen not to take a chemo drug, especially if platelet # isn’t excessively high (i.e., 500s to 600s). I am not advocating that one should not take hydroxyurea, as it is a personal decision. I am just curious to know if anyone else has chosen not to take it, and how they are doing.

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Replies to "I was diagnosed with ET (Jak2), about 2 years ago. My platelet count was 550 and..."

I was diagnosed with ET in May 2023 with a platlet count of 556. I am 66 and asymptomatic.
My Dr advised 81 mg aspirin along with Hydrea 500mg twice a week ( a baby dose according to him ).
After doing my research I have decided to adhere to the daily aspirin, eliminate certain foods and refrain from regular alcohol consumption.
I am taking the management of ET in direct relationship to my blood platlet count every 8 weeks - a wait and see attitude.
I am also fearful of Hydrea and at this point in my diagnosis I do not agree the therapeutic benefits outweigh the carcinogenic impact.

I was diagnosed a year and a half ago with ET, Jak 2 positive, and platelets in the high 400’s. Because of my age (69 at the time) the hemo tried to put me on Hydroxyurea right away-with not even mentioning aspirin. I refused and found another hemo who put me on 2 low-dose aspirin a day and no Hydroxyurea until I reach the 600 mark. I’m doing fine and just living my life! I’m also trying to drink pomegranate juice (although difficult for me), eat cucumbers, and other platelet-lowering foods (?) After numbers climbing over the last year, my most recent CBC showed that my platelet count went down from 567 to 524!
Hang in there and do your own research. Blessings and best of luck to you.

I was diagnosed with the same jak2 positive and my platelets are in the 500’s. Hydro was prescribed, and I decided not to take it. I am currently on a low dose aspirin and monitoring my platelets. It’s very discouraging that diet is never brought up as an alternative. What are some of the foods that help lower platelet count?
I’m 78 and am feeling good which is why I don’t want to start on hydro.

I am on HU, at one point my count went up (maybe 600) and Dr wanted to increase my HU, I resisted ...said let's wait for next blood work......and sure enough it went down into normal range without increasing HU dose

I’m a 71 yo female in good health. My count was initially in the 900s by the time I was tested and diagnosed. Prescribed 500mg/day. I got a second opinion. We dropped dosage to every other day. ~45 days later my numbers came down to about 800. I’ll have another reading ~45 days later. Side effects: hot flashes 🙁 again) and I have noticed itching on forearms—tubing alcohol fixes it.

Hi Pumpkin1,

Me, too, ET w/ JAK2. My primary sent me to a heme doc at the beginning of the year when my platelet count kept creeping up. Within 2 months numbers went from 481 to to almost 580.

I’m 71, female, petite and otherwise quite healthy. So, the heme doc said let’s try 81 mg aspirin and the supplement Nattokinese. The second one is tricky, you have to take it away from food. I started w/one at night, then he increased me to twice/day. For me, that’s first thing in the morning and just before bedtime.

He said he’d prefer not to put me on the heavier drugs if they could be avoided. I’ve had no real issues w/the Nattokinese. I did look it up online, of course!

Several blood counts later and again last month confirmed numbers are holding in mid-400’s. Maybe it will work for you? Ask your doc before trying this on your own.