Postby hawkowl » Fri Oct 26, 2018 2:59 pm
Just saw your post...
My oncologist preferred not to commit to stage 3 or 4 (I had several enlarged iliac nodes), and instead preferred to stage me as T3N2MX (I also had some presacral changes that were not biopsied)
As you know, i underwent 8 cycles of FOLFOX followed by 28 days of chemoradiation plus targeted radiation to extraregional nodes. I had a complete clinical response and was given the option of watch and wait (but this was not a good fit for my personality, so I elected to proceed with surgery)
I did end opting for an APR, which was done robotically, and convinced my surgeon that it was worth pursuing robotic iliac node dissection as well. Post up plan was to continue with maintenance xeloda plus Celebrex (basically the ADAPT protocol) but I had persistently low platelets, and since I had a complete pathological response (and a strong family history of myelodysplastic syndrome) we decided to drop the xeloda and continue with Celebrex alone. That was 3 years ago, and scans and CEA have been stable.
My life has been complicated by other complications of chemo, radiation, and my underlying autoimmune disease, but I would choose the same treatment course again with no hesitation. Neuropathy and dysautonomia are no fun, but it could be a lot worse. Please let me know if you have any other questions about my treatment...I am not on this forum much, but I do check in from time to time
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia