April 2018

The Erytherma Nodosum was still causing spots on my hands. I wasn't taking the medicine for it anymore. They were small, non-painful spots. I'm disappointed that I have to start taking Lipitor for cholesterol. It's not that high, but my triglycerides are. I've been so concerned about my chances of having a stroke, a blood clot, or a heart attack that I'm surprised at my reaction to having to take the Lipitor. This will help control those three scary health concerns! Still waiting to hear Dr. Densmore's decision about my taking Jakafi.

Jakafi is used for people who can't tolerate Hydroxyurea. I'm hoping I can tolerate Jakafi.

I had a long conversation with a nurse at IncyteCares about my new medication, Jakafi. It's been approved for me to receive it at no cost. The original cost for a one-month supply of 60 pills is a whopping $16,000+ ! Who can pay that much?

My nurse, Becky, will contact me at the beginning of each month to see if I'm still tolerating it, and she will put in the order with the speciality pharmacy, Theracom, who will then call me the week before to arrange a day for delivery by FedEx. A signature is required. This is not a medication I can get at the local pharmacy.

April 20

An appointment with Dr. Houck. The blood work showed that not much has changed since I started taking Jakafi. Platelets are down a little, but not enough. I made sure that I told him how I felt about having to travel all the way to Charlottesville to see Dr. Densmore. I asked him why couldn't we have had a phone conversation, or why couldn't HE and Dr. Densmore have had a conference by phone. He gave me lots of reasons that made no sense. After about 15 minutes of this, I said, again, that I thought the trip was a huge waste of my time. Finally, Dr. Houck said that Dr. Densmore spent time going over my records (an hour? There are very few records!) and, in order for him to be able to bill the insurance company for his time, he had to have me physically in his office! I laughed and said, "You've finally answered my question!"