Hi, Rose, I am 70 and have had ET, CALR mutation, for about 15 years. Been on hydroxyurea and aspirin for 6 years. ET is rare, and the CALR mutation is even rarer. So, yes, it is easy to feel alone and uninformed.

Everyone here offers good info, so I'll just add that it took a year for me to get platelets from 800s to 400s. They've been stable there for 5 years with just a couple spikes into the low 500s. Platelet levels fluctuate in "normal" people, and ours will too.

I have sensitivities to skin and hair care products that seem to have worsened with time. I think the hydroxyurea is a factor (but not the only one). I avoid sun exposure, use unscented, hypoallergenic shampoo and soap. Aloe vera gel, Benadryl/hydrocortisone cream cream, and moisturizing lotions (I use the drugstore brand substitute for CeraVe) are my friends.