Questions about Leptomeningeal disease

Posted by brianjarvis @brianjarvis, Aug 23 3:58pm

A friend of mine was recently diagnosed with Leptomeningeal disease. What was thought to be just a papilloma in her sinuses, turned out to be olfactory neuroblastoma. After having surgery, chemotherapy, and radiation, and appearing to be improving, symptoms returned with a vengeance. Diagnosis is now Leptomeningeal cancer with life-expectancy given as many weeks to a few months.

With no cure in sight, is there any treatment to prolong survival and improve quality of-life?

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Lori, Volunteer Mentor | @loribmt | Aug 23 6:03pm

Hello @brianjarvis, This news about your friend has to be devastating. I’m so sorry to hear that the prognosis isn’t encouraging. Leptomeningeal cancer is not in my area of experience but I was able to find several references in the forum with other members who have been similarly diagnosed.

Below is a link to the results of my search. Hopefully there are some relevant discussions for you.
https://connect.mayoclinic.org/search/?search=Leptomeningeal+cancer
What has your friend’s doctor suggested to keep her comfortable. Is she in palliative care or possibly hospice?

brianjarvis | @brianjarvis | Aug 23 6:38pm

In reply to @loribmt "Hello @brianjarvis, This news about your friend has to be devastating. I’m so sorry to hear..." + (show)

Going to hospice in the next day or two. (The cancer cells in her spinal fluid have caused a tumor to form on the bottom of her spine.)

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