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A friend of mine needs help!! Any advice is very much appreciated.
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A friend of mine needs help!! Any advice is very much appreciated.

› Forums › General Melanoma Community › A friend of mine needs help!! Any advice is very much appreciated.

  • Post
    • March 31, 2018 at 7:32 pm
    Maureen038
    Participant

      Hi,

        I’m writing for a friend whose wife has Braf positive 600 melanoma. She sees a melanoma specialist at Georgetown Hospital in DC. They’re not sure where it started, but when it was discovered it was in her lung, liver and left hip bone. She was put on the drug regime of Tafinlar and Mekinist and in six months there was 90 percent reduction of nodules. After getting a brain met, Sue was put in the Ipi/ Nivo trial and just had a scan after the second dose of  Ipi. The scan revealed three more brain mets and the other brain met growing and a spot on the Meninges. The specialist recommended she see a radiation oncologist. I’m trying to suggest a second opinion at Sloan Kettering or Yale. Does anyone have any other advice? Thanks so much!

      Maureen

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    • Replies
        • April 1, 2018 at 12:19 am
        Linny
        Participant

          Sorry to hear about your friend's wife.

          Sloan Kettering would be a good choice. Also check out Johns Hopkins in Baltimore (Dr. Sharfmann or Dr. Lipson) and University of Pennsylvania Abramson Cancer Center (Dr. Lynn Schuchter) in Philadelphia.

          • April 1, 2018 at 1:30 am
          Bubbles
          Participant

            Hey Maureen, 

            So sorry for your friend.  There is Michael Postow, Jed Wolchok, and Paul Chapman at Memorial Sloan Kettering.  Stephen Hodi at Dana-Farber.  Mario Sznol at Yale.  And…you know my fav, Jeffrey Weber at NYU.  All of these docs are incredible in regard to melanoma care, with their names on a huge percentage of the research, with international reputations.

            I have yelled about if so much…but…it sounds like what you friend's wife needs ASAP is SRS or gamma knife…localized radiaiton to her brain mets.  We have learned that the combined effects of radiation WITH immunotherapy provides response that neither alone can achieve.  There are a zillion posts/reports/abstracts on my blog.  Just put radiation and immunotherapy in the search bubble.

            Should LMD rear it's seriously ugly head…  As far as what I've heard last, MD Anderson is the only place doing intrathecal infusions.  Lately, starting a trial with intrathecal nivo along with intraveneous nivo.  Check out Rob's posts…under 'Adriana Cooper'…if the need arises.  I will keep all fingers and toes crossed that it will not.

            Yours, celeste

             

              • April 2, 2018 at 2:52 pm
              Maureen038
              Participant

                Thanks Linny and Celeste!! 

              • April 2, 2018 at 6:00 pm
              BillB
              Participant

                I used Dr. Christopher Barker at MSK for my radiation treatments. Wasn’t  crazy about the radiation side effects but I really liked Dr. Barker. I’m also being treated at MSK and am very happy with all aspects from my oncologists, surgeons, dermatologists etc. 

                Bill

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