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  • #21037
    Brendan
    Participant

    Hi Everyone,

    Thanks to a craniotomy in November I am now NED. I had a lung MET in 2011 and the brain MET in 2012. I realize that I should be happy to be NED (and I am-I go back to work soon!), but I am worried about future options. I went through ipi prior to the brain met and after the craniotomy. Due to ipi’s delayed response we are still not sure if I am a responder or not. I am not eligible for PD-1 since I am NED and I am BRAF negative. It seems like most clinical trials exclude patients with brain mets. I feel like my options are limited if another met is found in my brain, and I find myself ‘hoping’ that one appears in my lung again so that I will be.

    Since I am now now NED, should I just wait and hope for the best?

    Thanks!

    Brendan

    #59269
    Anonymous
    Guest

    Seems like you’re in the same “no mans land” as stage III people. Actually Brendan, you might argue that you’re stage IV, with complete recesction (even in the brain) and you’re being monitered with regular scans. With that in mind (no dark pun intended), perhaps you can argue for an IPI re-induction, depending on how long ago you got the IPI.

    Smart move to have a plan ready to go. Some oncologists will work out a contingency/flow chart with you. What is your scan frequency?

    Jeff

    #59270
    Catherine Poole
    Keymaster

    Jeff, exactly my sentiments! And I posted this morning a response that somehow disappeared into cyberspace. But you are still stage IV and are eligible for Yervoy reinduction. And I would also suggest you have the NRAS mutation testing done on your tumor tissue. This could open up a MEK study that is coming this spring. Some folks that are BRAF negative are NRAS positive and may respond to the MEK drug. Let us know how things are going.

    #59271
    Brendan
    Participant

    Thanks for the replies! I get MRI’s every two months (one scheduled in March) and CT/PET’s every three months (scheduled for April). A flow chart is a great idea and I will look into the mutations.

    Brendan

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