Jerry – this issue has bothered me for so long. I am mucosal without a CKit mutation. IPI was suggested to me as a possible treatment option by my oncologist who was actually involved in the research that concluded the 6.7 efficacy rate.A week later the announcement came out and I asked him how that could be a viable treatment option. His response to me was that it was good if you were one of the 6.7%.(I now have a new oncologist.)
Shortly after that the Patterson Institute in the UK came out with an announcement that they had completed a complete genetic testing of mucosal melanoma and concluded that it was completely different than cutaneous, which we already knew. They said in their announcement that it was actually genetically more similar to some other non-melanoma cancers but I have not been able to find out what those cancers are.
I wrote to them trying to find out what those cancers are and to see if they were conducting any clinical trials based on what they found. An oncologist actually wrote back and said they did not have anything there that was not being done in the US. He did say that if I was CKit positive , I should try IPI and if not I should get into an anit-PD-1 trial. The only thing I could conclude is that ipi affects the CKit pathway and thus that would make one a member of the 6.7% club.
There are a number of trials going on combining ipi and anti PD-1. If the time comes when I need further treatment, I want the plan to be to attack the cancer from as many directions as possible.
Best wishes.
Mary
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