Update - Tuesday saw ONC and he said my case was going to be discussed at the interdisciplinary meeting. This would be with the doctors giving a 2nd opinion on if this is colon cancer with mets, or colon cancer and ovarian cancer. I asked if they would be waiting for the scan I would be having after the next chemo treatment (which was next day), and he said he thought so. He also said he was going to check with the doctor there again. Not a lot of information.
That afternoon I receive a call telling my "infection fighters" - yes, they used that term - were low and my treatment was being postponed until the next week. I asked if that also meant my scan would be postponed, and was told "believe so."
What really got me though, on Tuesday, was that I was to continue with the treatment (FOLFOX) until it "no longer was working." I had not heard that before, and said so. His response was that there isn't a cure for this, and that when FOLFOX no longer worked, then we'd change meds. To add to all that, he made it sound like surgery is not an option unless this is actually two different cancer.
I was devastated when I came home, and am quite angry today. This is not new information, but I was not told by the first ONC that surgery was totally not an option, only that we needed to see how well the FOLFOX worked. I feel like I've been given a life-sentence of chemo, and if the cancer doesn't kill, then the chemo will. I can't get my hopes up over something uncommon like getting two cancers at the same time. My husband tells me to banish these negative thoughts, and think positive, but he's not the one with this sentence hanging over his head.
Thanks for being here. It's going to be a long haul, and he's eventually going to come to terms with this, but in the meantime, it's a bit tough to remember not to talk about all of this with him.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22
07/11 (ONC#1) FOLFOX started; 07/25/2018 FOLFOX+Avastin started
09/05 (ONC#2) Avastin discontinued; last infusion due to low counts
10/03 CT-scan showed drugs not working, treatment stopped
10/04 Appt w/ONC for 2nd opinion, change to FOLRFIRI due to increase in small nodules in abdomen
10/16 FOLFIRI+Avastin; Neulasta; Savaysa (Lovenox) treatment started
01/07/2019 CT-Scan w/contrast
01/14 (ONC#3) CEA 6.0
02/11 CEA 4.7; Avastin discontinued