Liz and I went to UCLA today and spoke with Dr. Ribas. He looked at her CT scans (I brought them on disk) and said they don't look good. Liz told him how much better she has been feeling. We pointed out that the first scan he saw was from 1/27, three weeks before she started on the study drug, and that during those three weeks she went downhill very fast in pain and mobility. It is possible that most of the growth shown occurred during that time. He felt we ought to have seen more improvement across the board, or in all areas of her body, so maybe the drug is only working for some areas; perhaps some are due to a different mutation. There is another medicine which fights at another point in the mutation cycle, MEK. This would be a plan B option. The fact that she feels so much better now is a good arguing point if Roche decides she ought to be removed from the clinical trial for her cancer progressing too much.
Dr. Ribas said Liz can pursue radiation for the cancer in her spine. She should stop taking her study drug when radiation starts and then start it again when it ends. The half life of the drug will not interfere with the beginning of the radiation cycle. He also said kyphoplasty is fine to do on the drug. These options are both on the table for dealing with the cancer in her spine and deterioration of a few discs.
We are relieved to hear she can continue on this medicine. I do feel strongly that Liz made great progress while on it. I have prayed that her doctors would be inspired in their treatments and recommendations for Liz. We know God watches over us and trust in His plan for her future.
One other small concern was a bump along Liz's jaw which showed up in the last few days. Dr Ribas said it looks like squamous cell carcinoma, a side effect for some patients. We tried to arrange to see Dr. Lo but he was unavailable today, and we leave tomorrow. We will try to arrange a dermatology consult and excision in SLC.
(The study "requires" the sample for testing and covers costs only if done here.)
We stopped at Diddy Riese for ice cream sandwiches made from cookies -- YUM! Liz can use the 500 calories; I don't need them but I enjoyed them too. We head back tomorrow midday, after we turn in our laughable rental car. I saved some money but Liz wishes I hadn't... the Suzuki firenza is a gutless econobox. Whatever. We are just spoiled with using Val and Brent's much nicer car the rest of the time. :)
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