PREACH!!!! LOUD and OFTEN!
I have often told DH that WE are our own best friends, caregivers, etc. We have seen that if a doctor does not have access to something (drug, machine, trial, etc), then he will say "that won't work" rather than saying "go across the street, they have it."
Where I work, people tell me they are going to shop around for best loan that fits them. Absolutely they should.
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials