ET: What are acceptable platelet numbers?

Does anyone experience platelets that have dramatic swings from 1k to 900k? I am having a difficult time finding articles on this. I've seen a few articles calling it cyclic thrombocytopenia,but very little infirmation out there.

Hi @rola. That is quite a wide swing of platelet counts from 100,000 to 900,000. Both are outside the low and high ends of ‘normal’ blood results. Do you have any other fluctuating blood numbers? What does your hematologist say about this?

Loti, I'm concerned for my brother, his oncologist/hematologist, who has been in practice over 40yrs, never saw anything like it. He is bringing it up for discussion when he meets with a group of physicians in NJ. I'm searching for anything to get answers. Yes, so rare they have no idea how to treat it.

Thank you for asking.

Hi @rola, That is a rare one! I’d done some quick research after I saw your post and it is really unusual to have such high swings. It sounds like your brother has a great doctor who is taking this seriously and trying to find answers. Best wishes to him!
Will you let me know what he finds out please?

Yes, I will. Ty

My doctor says platelets should be between 140 - 450. I have heard different ranges but they are all close. I have been a member of the Polycythemia Vera JAK2 V617F club since 2018. After high platelets (658) in a blood test, my doctor had me do a whopper blood test that cost me $1,200.00 out of pocket after my insurance paid. That is when I had the official PV verdict. I have been on Hydra for 6 years now with minimal side effects. Just get tired in the afternoon. I wish you the best, watching the grass grow in Kentucky, the heartland of America.

Sounds like me. I had a bone marrow biopsy that showed my platelets at 672. She put me on hydra 500mg. They went down to 521, 493, 542, 521. She said to take 2 tablets (1000mg/day) & retest blood 1X week for 4 weeks. No side effects.

I am 66. Years old and my dr is happy with numbers under 600. I started at 1.5 mil
I am also in agreement to not take more Medicine (I’m on Anagrelide)
I have no other medical issues other than ET

I haven't been under 600 for four years, over a mill a couple times, ever increasing doses of hydra. I get 100 count monthly variations inexplicably. I'm on a blood thinner and lo dose aspirin, upper 70's.

Just curious if your doc has suggested trying something other than hydroxyurea? Dad also had ET, and his platelets ran high and fluctuated a lot. He was put on a HU/anagrelide combo that was somewhat more effective. There really weren't any treatments other than that at the time. I have talked to ET patients who progressed to myelofibrosis (MF) and did well on Jakafi. It isn't used much for ET, but might be indicated when HU just isn't doing the job very well. In Europe, interferon/Pegasys is more commonly used, especially for younger patients, than in the U.S., where cost of newer drugs puts them out of reach for some.