So about 16 months after brain mets, craniotomy, Srs, opdivo/yervoy x 4 and opdivo alone x 4, getting to NED, I now officially have LMD.
I have 2 obvious, visible tumors in my spinal canal. One has been "debulked" by my neurosurgeon because the pain was so severe. Now going to be treating both the tumor targets with radiation.
I am Braf + (I attempted taf/mek when I was first diagnoses stage 3 in 2028 but didn't tolerate Mek at all and did a lower dose of tafinlar for a year) so I am being started on braftovi/mektovi.
My neurological symptoms currently are mostly manageable. I was hospitalized about a month ago with severe headache, dizziness, leg weakness, nausea -- at the time they couldn't find anything but now more clearly symptoms of the LMD.
My neuro-oncologist in NJ did his fellowship at MD Anderson and is suggesting IT topotecan. I can't find much data on it used in melanoma (although it is documented that it has been used) but it's well documented that it's effective for LMD from breast cancer. My primary melanoma specialist does not like this idea and has put the idea in my head of a trial they are doing at MD Anderson with IT opdivo. It's only a phase 1 and has less than 50 people in the study so there's really no information about what is the "best option".
I am 37 years old and have a 6 and 4 year old and will do EVERYTHING that I possibly can to be around as long as possible. I know LMD is so rare and I am very lucky that it was caught while I am functional and able to fight. Any personal experiences in this area are welcome!!!