Hello again Cheryl,
From what I've read, your mutation is indeed rare and you should definitely be seen by an MPN expert, even if you have to wait until January.
Like Arie, my hematologist isn't concerned about my platelet counts (which have stayed in the 900,000s), but doesn't want to see them cross the 1.5 million mark.
Hang in there and try not to worry. 🙏

My platelets reduced quickly after taking agrelide. I am Jak617

Hello Cheryl,
I was diagnosed with ET in 2011, with platelets at 1.2 million. Since then, I've experienced a lot of variation in platelet counts (low of 92,000; high of 1.6 million). In 2021, my CALR mutation was diagnosed. CALR is associated with very high platelets but a lower thrombotic risk.
Do you know whether you have a mutation? It makes a difference.
I'm being seen at Stanford both for regular hematology visits and as part of a clinical trial for CALR. In my opinion, you can't do better than Stanford, even if you have to wait. (And long waits to be seen are not uncommon.)
I've also heard good things about UCSF.
Good luck. And no such thing as too many questions here.
Best, Alyce

thanks! The only mutation I tested positive for was MPL W515. Seems it is the rarest of these rare MPN's.

Mine are over that mark now. I don't know if I really can physically tell a big difference from when the count was less.
In my case the doctor said that she is more concerned if they cross over 1.5 mil, apparently the 1 mill threshold for treatment is from a bit older standard. I'm not a doctor so it may be different for you, but in my case the doctor is more concerned about watching other blood factors as long as I'm below 1.5 mil.