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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!

Posted By
8/1/2020 9:06pm
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Replies: 6

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.

heh shannon

my situation is nothing like your husband's.

i just wanted to say ......well nothing really , other than to acknowledge your worry and concern.

I would start looking at MD Anderson, they have research going on in this specific area. Here is a link to recent article. Best Wishes!!! Ed

Thank you, Ed! I will check this out.

I am so sorry for what you and Jason are dealing with, Shannon. I agree with Ed. To my knowledge MDA is at the forefront of work with leptomeningeal mets in melanoma. They have had some success with intrathecal administration of both TILs and IL2. Melanoma puts your back against the wall. Leptomeningeal mets make that wall even more difficult. Hang in there. Here is a 2018 report from researchers at MDA that explains IT a bit:

Wishing you and your husband my best. celeste

Thanks Celeste. Yeah we were blindsided by this, didn't even know it was possible. I'll check out Ed's link and your blog link. Thanks!

MDA Dr. Glitza investigate IT Pembro/ Nivo