I met with Dr. Korn at UCSF this morning. He was very reassuring and said the new CT is not a confirmed progression in his opinion but definitely a heads up and gave me a game plan. He thinks my timing is good to look ahead especially since I’m healthy otherwise and would make a good trial candidate. He connected me with the UCSF Immunotherapy team.
They will contact me regarding a clinical trial which is looking for patients with a particular biomarker which I haven’t been tested for as yet. I wish I had remembered to ask for more info about the bio-marker but I thought he’d notate the trial in his notes. He also recommended that I make an appointment with Stanford regarding 2 of their trials which he thinks I would be eligible for. Unfortunately I’m not a candidate for the UCSF trial that includes Xeloda due to my toxic reaction to it last year.
In the meantime we will continue and monitor with repeat CT in 10 weeks and he told me not to freak over CEA numbers alone. Thank you everyone for the well wishes and prayers, I am feeling less anxious. I think it went well overall, just hoping the next scan is stable but feeling good about getting a plan in place. I know there's going to be some humongous scanxiety for my next one which will tip the scales one way or the other. Keeping fingers crossed and doing whatever I need to do to stay ahead of this.
You are all in my thoughts and prayers when I read your struggles. I cheer for you when you get good news. This place gives me hope and it's because of the kindness of my fellow warriors.
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!