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LMD from Melanoma

Posted: Thu Jul 25, 2019 9:39 pm
by Mom2Addy
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. 😞

Re: LMD from Melanoma

Posted: Sat Aug 03, 2019 6:54 am
by Catherine Poole
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.

Re: LMD from Melanoma

Posted: Fri Sep 06, 2019 12:44 pm
by Mom2Addy
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.

Re: LMD from Melanoma

Posted: Sat Sep 07, 2019 7:19 am
by Catherine Poole
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.