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  • in reply to: Advice about treatment #65161
    Cbs805
    Participant

    My husband, John has mucosal melanoma of the sinus and is now on the Merck PD1 expanded access program. He had his first scan a few weeks ago at 5th dose and there were no new tumors and many had shrunk. Some had gotten bigger but the doctor wasn’t concerned as that sometimes happens as the drug can be loading the tumors with T-cells I think. Next scan is in 2 weeks and Dr. O’Day (Beverly Hills Cancer Center) seems to expect further good results. Currently, besides fatigue and itching, he was experiencing trigeminal neuralgia as a result of surgeries and/or radiation. Thankfully, he is on medicine that has alleviated that problem. His original diagnosis was April, 2013 and became stage 4 in December. Has had IPI twice, and completed 6 doses of PD1 so far. Previous treatment included surgeries, chemo, radiation, CyberKnife, etc. We have never asked about PD1 results of melanoma versus mucosal melanoma. We do know another mucosal patient who is having success with PD1 though.

    in reply to: Muscal Melanoma Help #64921
    Cbs805
    Participant

    My husband has mucosal melanoma of the sinus which was diagnosed April, 2013. He has had 2 surgeries, chemo, multiple radiations, two rounds of Cyber knife treatments to different areas, 2 rounds of ipi and now is on PD-1 expanded access at Beverly Hills Cancer Center. He is stage 4 with tumors on his kidney, liver, lung, etc. Today he had infusion 5 of PD-1 and his first CT and MRI since starting PD-1.

    And happy news – no new tumors and significant shrinkage in many of the tumors. His side effects are itching and fatigue. He is negative for CKIT and BRAF. From talking to other patients , as far as I can tell mucosal melanoma isn’t treated any differently than other melanomas.

    in reply to: is EAP PD1 now available for all IV #64663
    Cbs805
    Participant

    Prior ipi treatment is required to be eligible for the PD 1 expanded access program. My husband is on it at Beverly Hills Cancer Center with Dr. O’Day.

    in reply to: MK3475 (PD1) experiences #64331
    Cbs805
    Participant

    We go to Beverly Hills Cancer Center, Dr. O’Day. He said some patients respond very quickly. My husband, John doesn’t have any tumors that can be felt so we won’t know his response for sure until his first scan in July. So relieved to have this drug available.

    in reply to: Mayo Clinic(Arizona,Florida Minnesota)-Merck EAP #64176
    Cbs805
    Participant

    Beverly Hills Cancer Center has the Merck expanded access PD-1. My husband started it last week.

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