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  • in reply to: Merck anti-PD1 approved by US FDA #65397
    mary1233
    Participant

    Can anyone tell me if Keytruda use is approved for Braf negative patients. A real problem I have with understanding this is that Yervoy has a 6.7% efficacy rate for mucosal melanoma. Why would my insurance company want to pay for me to probably fail on this drug while, at the same time, there is a pd-1 drug where wild type mutation patients responded so well? It seems like an enormous waste of money for the insurance companies just to prove that Yervoy is not going to work?

    in reply to: Merck anti-PD1 approved by US FDA #65380
    mary1233
    Participant

    What a waste of medical resources. I am braf negative so hopefully I won’t have to waste my time, health and money on ipi which, in patients like myself, has only a 6.7% success rate as well as a larger number of toxic side effects than the PD-1 drugs. I am a more than a little put off by the price tags. Perhaps when nivolumab is approved, providing competition the prices will be more reasonable. It is wonderful news for a lot of people. I just hope that we have not added to the environment where you have to be wealthy or have really good insurance to get these medications.

    in reply to: Advice about treatment #65163
    mary1233
    Participant

    My oncologist at sloan is part of the clinical trial doing the ipi-nivo combination. I will see him the beginning of September (hopefully my scans will be clear). So much has changed since I was diagnosed in 2012.

    in reply to: BRAF Wild Type (BRAFwt) #64967
    mary1233
    Participant

    I am a mucosal melanoma patient with a wild type mutation. It is hard to find specific information on either.

    However – the announcement from Bristol Myers Squibb the other week that the Phase III trial of nivolumab was being halted due to really good results was an exciting bit of news for us wild types. You can check with Catherine Poole on this, but it said in the report that patients who were wild type had to be randomized between the nivolumab arm and the chemotherapy arm. To me, that says that one major point of the study was to evaluate the effect of the PD-1 drug on wild type mutations, and apparently the results were so positive that they said to the chemo arm, “come on over”.

    There is another clinical trial of the melanoma wild types being conducted at Sloan Kettering and other cancer centers of a combination therapy of trametinib (I believe a MEK inhibitor) and another drug. This is a Phase II trial.

    When I was first diagnosed in 2012 there was very little information and very little that oncologists had to offer post surgery. Since then, the Patterson Institute in the UK did a complete genetic sequencing of mucosal melanoma (which is rarely Braf positive) and the research in immunotherapy has oncologists (and patients) very optimistic and hopeful.

    For me, I no longer feel like the red-headed step child. The science is coming around.

    My sincere best wishes to all who struggle with this.

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