This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.
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- Joined: Thu Jul 25, 2019 6:20 am
We just found out my husband has Leptomeningeal Disease. He doesn’t qualify for any of the clinical trials due to his Rheumatoid Arthritis, which he developed after immunotherapy. He’s starting Temodar and WBR. If it doesn’t work, he has two months. If it does work, we just don’t know but the prognosis is pretty grim. What can we expect if it progresses? What do we need to think about, plan for in the event it doesn’t work. I’m devastated but know I have to keep it together in order to support our 10 year old. Help please.
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- Joined: Wed Jan 02, 2008 12:09 am
I'm so sorry to hear your news. Leptomeningeal is very difficult to treat effectively. Is he BRAF neg or positive? There might be some alternative therapies to your current pathway. Where is he being treated? Hospice care is always a great relief as it focuses on comfort and quality of life rather than treatments that may cause discomfort. I know for my husband it was a wonderful thing. They can become your team.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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