Totally get not wanting to be ill all the time. FOLFOX was a chore for DH, bone tired, ill feeling, diarrhea, etc. He started Vectabix aka p-mab (an EGFR therapy) in May and the only side effect is the face/chest rash. He looks like he's 16 again with zits but I don't care what he looks like. The nurse called the rash "stable" today. He coats everything with Eucerin lotion twice a day, takes an antibiotic, and wears a fedora when outside. The liver tumors grew from January to May scan and the July scan showed they have now shrunk to January size again.
We went out to dinner Saturday night and are headed out of town for a long weekend Thursday. He works every day but treatment day. P-mab is soooooo much easier than FOLFOX. There's no go-home bag and it only takes an hour infusion. DH doesn't even take pre-meds with it. He is doing 66% irinitican 1x a month (with premeds) with p-mab 2x a month.
He has also discussed proton therapy with his dr which they may employ on the liver tumors later...idea? There's another gent on this forum who has used that with success.
But as I always say to DH...what FEELS right to YOU?
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