LMD from Melanoma

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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Mom2Addy
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Joined: Thu Jul 25, 2019 6:20 am
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LMD from Melanoma

Post by Mom2Addy » Thu Jul 25, 2019 9:39 pm

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. 😞

Catherine Poole
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Joined: Wed Jan 02, 2008 12:09 am

Re: LMD from Melanoma

Post by Catherine Poole » Sat Aug 03, 2019 6:54 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

Mom2Addy
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Joined: Thu Jul 25, 2019 6:20 am
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Re: LMD from Melanoma

Post by Mom2Addy » Fri Sep 06, 2019 12:44 pm

He’s BRAF +, however he developed severe rheumatoid arthritis so he isn’t eligible for immunotherapy. He complete 14 rounds of WBR and 6 weeks of chemo. Now we wait until the 17th for his next scan. I’ve heard it can be an incredibly hard final stage. We have a 10 year old daughter and I’m terrified of her watching the progression.

I’m sorry for your loss Catherine and I’m very grateful for your assistance.

Catherine Poole
Posts: 11265
Joined: Wed Jan 02, 2008 12:09 am

Re: LMD from Melanoma

Post by Catherine Poole » Sat Sep 07, 2019 7:19 am

I'm so sorry you are going through this. Best advice I have is to put one foot in front of the other, be very honest about everything with your daughter as she may fear something worse. Life just throws us bad things without reason. We can only support each other through it and then find our resilience. Please keep in touch.
Catherine M. Poole, President/Founder
Melanoma International Foundation

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