Six months ago I was diagnosed with ET Jak2. I’m high risk (age, prior stroke) and I started Hydroxyurea 500mg/day. All my counts came down nicely and my main symptom (brain fog) resolved. I had minimal HU side effects (a bit of initial hair thinning. dry skin/hair, a few mouth ulcers easily managed with Lysine).
So.., I’m a perfect HU success story, right? My counts are perfect, minimal side effects, and I feel great! BUT.. I have history of basal cell cancer x3, the most recent a month ago and represented by a 2.5” facial scar. In the past two weeks I’ve met with the dermatologist, the Moh’s surgeon, and the plastic surgeon and sought their recommendation on whether HU was accelerating my already high risk for BCC (blond, blue-eyed, excessive sunburns as kid, family history). The Moh’s surgeon was the most ardent, saying if I stayed on HU I should get “skin checks every 6 months, so they don’t grow so big so fast”. My most recent lesion grew from a pinpoint on biopsy to a 1.2 x1.2 cm lesion in 4 months on HU.
Today I met with my hematologist , to discuss HU vs Pegasys in relation to my skin cancer risk. She agreed that switching to Pegasys was “a very good choice” for me. So next week I’ll start the switch with a start dose of 45 mcg every other week. We’ll monitor bloods every 2 weeks and adjust dose as needed. Since I’m starting from a baseline of completely normal blood counts (thanks to the HU), I hope I can stabilize on a low dose of Pegasys. If I can’t tolerate the Pegasys, I’ll gladly go back to HU, as I know it worked well for me once; and I’ll just be super vigilant about the skin checks.
Thanks to members of this group, who gave me the information and resolve to be an advocate for myself. I realized that, for me, the risk of further facial disfigurement from skin cancer was a quality of life issue. I needed my care team to factor that into the medication choice. You guys made a difference ! Thank you!