Thank you all so much!
So much wisdom here.
For what it's worth, here is where I am today. Having scans on Wednesday -- I requested and I think my ONC understands that my hyper-vigilance is probably why I'm still alive and so doesn't want to fight it.
Having said that, I came to RADNYC's conclusion over the weekend: as long there are active tumors, there's going to CEA activity, and there could be a bunch of reasons for it bouncing around -- everything from lack of exercise to gum disease to stress to being off the anti-biotic I was taking for my rash, which also functions as an anti-inflammatory. It's not very likely that a treatment that worked so well for 10 weeks would suddenly stop working five weeks later, and I'm not expecting see anything dramatic on these scans. However, even if it has stopped working, and we do see, say, progression, it's not a catastrophe. It's just knowledge that informs the next steps.
What I'm learning through this journey is that it really is a long game -- hopefully a very long game. But even if it turns out to be shorter than I hope, it's really helpful to think of this in terms of steps. A friend who is also a survivor recently told me that he doc told him that it's like the train in Harry Potter: when you run out of one track, you get on another one.
I'll keep you posted -- but mostly wanted to share the mental thing, because that's a big reason we're all here, I think.
1/8/19 DS Stage 4 with Liver Mets; Successful Colon Resect
2/18/19 Started Folfox -- CEA 70
5/8/19 - BRAF mutation -- switch to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
8/29 - CEA jump to 30-- scans reveal liver spread, though still confined. triplet therapy abandoned; some concern about PIC3 mutation interfering with BRAF treatment
9/1 - 10/4 -- no treatment
10/4 -- folfoxfiri to stem further progression; pump placement in January (hopefully)