Melanoma spread to lungs, lymph nodes, L5 vertebrae with brain mets & leptomeningeal
July 2011, my husband passed out and hit his head on a concrete floor. In a CT, spots were found in his lungs, and lymph nodes that subsequently were diagnosed as stage IV melanoma. He started an IPI infusion, but was discontinued due to liver function. The following month, after continuous head pain and nausea/vomitting, a spinal tap came back positive for cells in the csf. He had leptomeningeal enhancement on the temporal and frontal lobes. In September he did 3 wks WB radiation and was also started on temozolamide. End of November, CT & MRI came back that spots in lungs and lymph nodes spread and increased, as well as additional brain mets. In December, was started on Zelboraf and Jan 12 had gamma knife on approx 8 spots, 2 of which were leptomeningeal. In addition, some of the brain mets had increased in size from .5 to 1.9 and .5 to 1.7. By end of January, was basically in bed throughout the day and night, and down to 128 lbs (normally 172). He had a pretty serious seizure Feb. 7 and was started on Dilantin and steroids. He had a CT at that time, which showed clear lymph nodes and lungs, however a spot on his L5 vertebrae which had caused a compression fracture. His initial MRI showed severe swelling in the frontal lobe, so 2nd round of gamma knife was postponed to March 8, when they worked on an additional 8 spots. His MRI immediately preceding the 3/8 procedure showed spread of the leptomeningeal disease from the frontal and temporal to the cerebellar hemisphere, bilaterally, as well as vasogenic edema around the 16 bulky tumors, and numerous subcentimeter lesions in the frontal, temporal, as well as left occipital lobe. He is just now reducing his steroid dose post gamma knife. He has gained about 25 lbs back, and has been functioning pretty well around the house. He has noticable hearing problems, diplopia, gait problems, and some memory/confusion. We've been told that the Zelboraf and gamma knife are our last methods of treatment, and waiting till 4/25 for follow up MRI. As a mother of a 7, 4, and <2 yr old, I'm wondering if anyone has any advice, comments, ideas as to how to see through the roller coaster of being told he won't survive to seeing him eating, cooking, helping with kids, wondering what to watch for to know that "the end" is near, etc. Thanks for your interest~
Also, I forgot to mention he has an unknown primary.
I really have no advice but your family will be in my thoughts and prayers. I hope his MRI brings positive news.
I also can't offer any personal advice but had some thoughts / suggestions.
Have you been in contact with hospice? While it may be entirely to early, (or not needed at all) they may have some advice on what to watch for.
The obvious signs of progression are what you already saw, excessive headaches, loss of appetites, and other behavior changes.
The best advice I can think of on how to handle what you are going through is the same for all of us, no matter the health issue we are facing. Take life one day at a time and get the most enjoyment out of it as you can.
I used to strive to be happy all the time. As I grew older I found that true happiness is, (for most) a temporary condition that comes and goes. Now I strive for contentment. I find when I get there, that is a great place to be.
I wish you and your family well.