Thanks, all for all the support for my husband! We both appreciate it. They are still negotiating, we are hoping for the best there.
In other news, i had opportunity to meet my new NW oncologist on Monday: Dr Mary Mulcahy who runs the GI Cancer department for them.
I was a little hesitant meeting her, as i have heard she isn't great with Stage 4 patients, but I left the appointment feeling like it would work if she is willing to partner with Dr Kemeny - and we keep letting Dr K call the shots.
Interestingly, she asked about who had mentioned surgery and why. Her take is that she would also not recommend surgery for me (the note we got back from Kemeny after tumor board was short and without context - "no surgery yet, maintain chemo.")
However, she said her take was that i had a "complete pathological response" to the chemo based on the PET - and why would we want to operate when there is nothing there? She felt one of the mets was poorly located and would require removal of a full lobe, which felt overly aggressive since no active cancer.
I told her that i worried we were moving toward a "chemo for life" plan, and she stated that she thought that was my best option right now. I think MSK is not favorable to maintenance chemo in general, so i am interested in their take. I am realizing my CEA is a super sensitive marker for me - looking back, we saw it start to rise in January, and when they looked back at those scans could see barely visible growth starting. I think I could maintain without chemo if I was checking CEA regularly.
For now, she decided to maintain me on 5FU and Vectibix only - i dropped Irinotecan last cycle, because i could feel my body needed a bit of a break, and it felt less risky to cut the IRI than do a chemo break overall. I couldn't tell much difference for most of the cycle but then had a great weekend. So i hope this will be much more sustainable if that's what the oncologists ultimately recommend.
In other news, my cancer buddy with pancreatic cancer just had a scan which revealed "innumerable growths" in her lungs. Her last scan was clean, but her CA-199 (like CEA) was rising, so they were worried something was up. I guess this is it. She's now looking at trials. UGH. I feel so terrible for her, i wish there was something she could do.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7