When my platelet count was rising slowly but steadily over several years, my nagging concern was that the cause was either inflammation or an early sign of cancer (ovarian cancer, which my mom had), which hadn't yet been identified. So, in a way, identifying the gene mutation was a relief: for me that meant the platelet count, in itself, was the problem to treat. With HU500 the numbers started dropping right away -- & so far, so good. Learning that it's a chronic, treatable condition & that the majority live normal lives was obviously also a relief; my primary care doctor said he's had (or has) 20 patients with this & all are doing very well. I'm going to re-read that post by the guy who's had it for 30 years.

Are you tolerating the HU well? It was horrifying to read about all the possible side effects (I imagined having all of them), but I've been very lucky, none at all.

Cheers & much hope to you on your journey!

If you have ET, genetic tests help determine your clot risk. I am 70. I have the CALR mutation. CALR patients are less likely to clot than JAK2 patients. Some docs, as a result, don't prescribe HU for CALR patients until they are approaching platelet levels over 700.

In the "olden days" when my dad had ET (early 2000s), people were often diagnosed only after a clot had been found, and they were front-loaded with high doses of HU. Now that more driver mutations have been discovered, care can be more finely tuned.

At some point ask your doc about mutations and clot risks. If he looks blank, he may not be very familiar with ET, and you might want to eventually get a second opinion on your HU dosing at a bigger research-oriented hospital.

It's great that you have no HU side effects and that you are still working!