Whack-a-mole next...

[knick]

Hi Flori,
I think you said it best-it's frustrating to be scared of your own body. Thank you for sharing your experiences here with us.
I'm certain that clinical trials aren't a favorite option at present, but I did want to suggest a few that I'm aware of, which are helping patients, or appear poised to.
DS-8201a: It's in many clinics in So-Cal (LA for example). Think of it like Kadcyla but with a different toxic payload. Given you've had taxane after taxane, receiving a topoisomerase inhibitor (the payload of DS8201) could "shock" the cancer cells.
There's currently a trial combining DS8201 with a immunotherapy drug (nivolumab). ClinicalTrials.gov Identifier: NCT03523572. This is phase 1 so you won't end up on a placebo.
The other product which might be of interest if tucatinib (currently owned by Seattle Genetics). This is similar drug to lapatinib, but it's supposed to better access the brain and CNS, and have fewer side effects.
Unfortunately it's in late stage trials, so you might see about requesting "Expanded Access to Investigational Products" from a Seattle Genetics representative.
I'm aware of other trials, but they're outside California.
Whatever direction you take, sending positive vibes and well wishes.