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Leptomeningeal Metastases in Melanoma

Forums General Melanoma Community Leptomeningeal Metastases in Melanoma

  • Post
    Roberto
    Participant
      Hello friends,
      It’s been a while since I’ve participated in the discussions here. The forum has changed so much in that time.
      I wanted to know if anyone could give me some light on Leptomeningeal Metastases in Melanoma. After dozens of treatments against the “beast”, my wife was diagnosed with Leptomeningeal Metastases. Everything I’ve read is discouraging. Radiotherapy doesn’t work, immunotherapy doesn’t either. My God!! Is there anything that can stop this disease? If anyone has any ideas I would be very grateful. Who knows, dear Bubbles, our encyclopedia on Melanoma
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        ed williams
        Participant
          Roberto, if you go to 13:00 min mark of following video Dr. Glitza of MD Anderson speaks about brain mets and specific to your question, she gets into treatment options more around 20 min mark for Leptomeningeal. https://www.youtube.com/watch?v=4cBhvxvHWXk
          Roberto
          Participant
            Thank you very much, Ed Williams
            It’s not very encouraging, but unfortunately it’s reality.
            Bubbles
            Participant
              Oh, Roberto. I am so sorry. Here is a link to all that I have on leptomeningeal disease on my blog:

              Leptomeningeal disease

              Most is a bit old (mostly because, sadly, not much has changed). There is one report from 2021.

              You are correct. Melanoma sucks. LMD sucks even more. IT therapy seems to be the most promising. Last I knew, MDA was the only place in the states doing that – though that may not be accurate just now. I know BRAF inhibitors have bought some time for those with that mutation, but are certainly not an optimal solution.

              Holding you and your wife in my heart. Celeste

              Roberto
              Participant
                Thank you very much for your words. We are doing intrathecal nivolumab (phase 1) with temozolomide.

                Before the disease reached the leptomeningeal region, she had a very good response to chemotherapy, with the disease regressing and disappearing in the rest of the body, but it seems that chemotherapy does not act on the leptomeningeal region.

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