March 21, 2014.. I learned some new things with my visit with the doctor today. As I said before, the doctor I was originally scheduled with had to be away so I was assigned to a young new doctor from Pakistan. He explained some things about my myeloma that I had not heard before. He said the myeloma I have is rather rare. He said it is slow a growing type and cannot be treated with drugs that are commonly used to treat most myeloma. He said he needed to consult with Dr Barlogie about what to do. We were surprised to see the world famous Dr Barlogie come into the room and he started looking over my file. After looking over my gene array information and other things, he told the young doctor he would recommend me starting on a drug called Mekinist. My understanding from what he said was there is a mutating gene that is causing my particular type myeloma and this drug stops the pathway that allows the gene to mutate. The drug is very expensive and I have to take it daily. One article I was reading online said the cost is over 163 thousand dollars per year. They determined my insurance will cover the cost after I pay the deductible. They will start the process of getting the drug to Little Rock and I will have to return here in 3 weeks. At that time, I will have to get some heart tests done before starting on the new drug and then four weeks after I start the drug, I will have to return to Little Rock again for an evaluation to see if the drug is working.
Tomorrow, we will head home. It will be really good to be home again. I wish we didn't have to come back so soon but I am thankful to get something going that might help me.