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.

Hi Cheryl,

I've been diagnosed with ET CARL+ in 2022.
Since then my plt are swinging between 1 mln an 1.1 mln.
Since I'm low risk I'm without medication, I've been on pegasys for one year (without effects) for my pregnancies (all terminated with miscarriages), thus I've suspended.

They are keeping my coagulation under control mostly, since I've a deficit in XI factor and this elevated count might activate the acquired von willebrand.

They said that the limit should be 1.5 mln/one of risk element present or symptoms burden increasing.