Hi Paul,
Here Im looking for what standard monitoring looks like, to help brain mets patients establish their own standard of care.
I have read of folks getting whole brain MRIs every 6 weeks or 3 months -- quite a span. (I also read that MRIs are only 70% effective for diagnosing brain mets spread)
I have read that 1 lumbar puncture is 45% accurate, three are 90% accurate, six are 95%, and 12-16 are pretty definitive for leptomeningeal spread. But how frequently are they done? I tried once a week and ended up with a spinal fluid leak it seems, plus a sore back and headache.
Do folks try Kadcyla or TDMI first? Is it ever evaluated with a lumbar puncture for blood-brain barrier penetration? Do you have to go down the systemic therapy path and show disease progression before you are able to try something different?
Do folks get their tumors genetically tested sometimes? Always? Does it factor in to treatment decisions made by the team?
Inquiring minds want to know