Hi all, Just an update to my Besremi adventure. After a few months off Besremi, my liver enzymes returned to normal. A few months later I had bad rib pain on the liver side that urgent care might be due to liver enlargement. The oncologist thought not, and an ultrasound of the abdomen confirmed it was normal in size at least. I also had a mysterious bruise which came only after a few days of pain in my inner calf. I don't recall hitting it, etc, but the bruise was enormous. Oncologist though that perhaps I'd taken too many blood thinning supplements, but he did not seem worried. (I switched from a doctor who did not like Besremi, was very afraid of its side effects, and really pushed HU. I'm hoping that moving to someone with more familiary with PV will help.)
Right now I'm waiting for financial aid approval from the pharmaceutical manufacturer. Otherwise the drug would cost me over $3000 a month for two shots, if I understood properly; I'm on Traditional Medicare plus Plan G plus Plan D. So the saga continues. I did not love being on the drug, but it did seem to bring down the HCT nicely, and did not do badly improving Platelets too. The cancer center which mistakenly gave me the drug in-house for 6 times, thus incurring a huge bill , has told me they won't be collecting that from me.