The only patients I've whose docs allowed them to run platelet levels up to 1,000 were young ET-CALR patients. CALR patients like me are lower risk for clots than JAK2s. However, past age 60 or 65, everybody's considered at least moderate risk.

If I were younger and had great insurance, I would certainly try Pegasus!

However, I am 70 and have only been on HU for five years. I should be able to take it for another 15 years without problems, and I don't expect to live nearly that long due to other issues.

I totally agree that docs don't spend enough time with ET patients, and most of them don't hand out pamphlets or links to reputable Web sites. That's really puzzling now that there are so many places to get credible info. Then they complain when patients Google info.

Lack of info is among the worst "side effects" of ET.