Saturday, October 18, 2014

Bob update: A visit to Sloan Kettering

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.


  1. Once again wishing you and Bob well. Hope the new treatment works for him. Prayers are on the way.

  2. I feel I can sort of understand that "long-term sunburn" feeling Bob is experiencing. I was treated for Lyme's disease, and the Doxycycline made me so utterly photosensitive that, if I stepped near a window, I would immediately break out in a bright red rash all over and ITCH like insanity--especially on my hands and face . I mean, I would want to claw my skin right off. It was awful. I had to practically wear a bedsheet or a burka to be safe.

    My prayers and hopes are for you and Bob as you continue to fight this. I am proud of Bob for staying active and keeping as involved as he can. That is a necessity. I hope you hit an "upswing" really, really soon. :)

  3. On your next trip to St. Augustine you should stop by La Pavillon (45 San Marco Ave - close to Ripley's Believe It or Not). If Patty is working, say hello - she is a fellow horse rider (dressage).


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