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Leptomeningeal diagnosis with stage 4 melanoma – looking for hope!
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Leptomeningeal diagnosis with stage 4 melanoma – looking for hope!

› Forums › General Melanoma Community › Leptomeningeal diagnosis with stage 4 melanoma – looking for hope!

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    • August 2, 2020 at 1:06 am
    skfitz
    Participant
      Hey everyone,
      I’ve written here a few times and found some great comfort and ideas. My husband Jason (43) was just diagnosed with Leptomeningeal Metastasis after 10 days in the hospital with a debilitating headache. He has been stage 4 B-RAF positive since March 2018. He failed ipi/nivo but did great on targeted chemo. Taf/Mek didn’t work for him due to side effects but Braftovi/Mektovi has been amazing. He just got a clean PET 2 weeks ago and then tanked with this headache. No time to enjoy the good news, more terrible news. From what I’ve read, LEP is pretty nasty and invasive and doesn’t seem to have a lot of hopeful treatments. We are at University of Michigan and love our doctor, but I wanted to ask you all if you had any experience with this disease and any ideas for treatments. As a mom of 2 young boys who adore their dad, I’m desperate to find any hope. Thanks to all you amazing people. This blog has brought me so much comfort the last few years.
      -Shannon
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