Basil wrote:This is a very mundane post but I figure it may resonate with someone here, either now or in the future.
I was diagnosed stage iii with one suspicious node in March. Had a great reaction to preadjuvant chemo (trial with no chemorad) and my pathology report showed a complete response after LAR/TME. Great news. Since then I’ve had my latter six rounds of FOLFOX cancelled (IDEA study) and gone through reversal. Recovered and doing well.
I know the stats on recurrence and I’ve talked with my onc in depth. The stats are very good for me. Still, I’d never really felt like I thought I should be being “NED.” I felt more like the odds are in my favor but the balls are still in the air. And I know I’m some sense that’s really where I am.
I had my first surveillance appointment this week, nothing more than blood work and a cursory exam. Everything was as it should be. My CEA is 1.5. I wasn’t expecting this but I feel like a weight has been lifted from my shoulders. I guess some part of me felt everything would go to shit ASAP once I got the surgery/reversal issues worked out. It didn’t and I really feel for the first time I’m cancer free. I know it could come back and, if it does, it will probably happen in the next year or two. But my head is now for the first time telling me that’s unlikely and I’m probably on the down slope of this thing. Thought I would have had that feeling when I got the call telling me there was no cancer in the specimen they removed in surgery. I didn’t but it’s happened now. It’s a great feeling and one I hope you all get to have.
Fingers crossed/no jinx
Glad to see you back. I recall your frequent posts about your reversal knowing that this would affect me down the road (it's still down the road). I had a complete response from surgery as well but I still worry about recurrence. So I keep an eye on the clinical trials out there for my mutation in case it comes back. I have to do some testing to see if I'd be likely to respond to immunotherapy in the future. Yes, paranoid, I know that. It runs in my family. I can see some big improvements in treatments down the road for CRC and it's an exciting time for discovery. Of course everyone would prefer that it be a boring time with treatments that didn't damage body parts but that's where we are hopefully headed too.
Please continue to post.
My CEA range was 2.7 at diagnosis, 1.8 halfway through chemo/radiation, 1.7 at the end of chemo/radiation and 0.6 after surgery. From what I've seen of numbers, it seems that the normal range varies moderately from person to person. I would really love to get to where you are now and it seems like a long way to get there. But it looked even longer six months ago.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT