On Oct 13, Bob and I trekked to NYC to meet with some doctors at Sloan Kettering. The visit was very good -- basically getting a second opinion -- to select the next course of treatment for his CTCL. The Interferon is not doing its job any more and Bob's skin is inflamed and itchy. He describes it as "a bad sunburn that lasts 3 years."
Bob will hopefully be enrolling in a clinical trial -- soon. He skin is so uncomfortable I wonder if he will be able to travel for our planned vacation in St. Augustine. I have to give him credit, he is pushing through the discomfort to stay active, even though he pays the price afterward with a flareup. He was finally (more or less) sent home by the company nurse. He is not working right now.
We've cranked through all of the drugs that have few side effects -- the "second tier" treatments are going to have downsides. On bulletin boards I read about people being hospitalized with severe reactions, but I suspect most people manage pretty well. This disease has ups and downs, and we are on a downswing. I'll feel so much better when he gets on a new treatment.