Postby skb » Wed Dec 13, 2017 11:14 am
Rikimaroo,
I am feeling sorry, sad, scared almost freaking out hearing your local recurrence and high CEA. I am praying and wishing the best for you.
I was put on wait and watch too in August 2017 after showing complete response (absence of primary tumor, just scar tissue left and no mets identified in CT scan). However I had 8 chemo IV cycles after that (Aug to December). 5FU plus oxaliplatin for four rounds. Only 5FU for remaining cycles. The CT scan from few days ago (Dec 2017) revealed no mets but there is mention of a liver enhancement in the CT report that it says is likely a 'vascular shunt''.
CEA result from few days ago came in at <0.5ug/L but my CEA was never elevated, not even at initial diagnosis. So it is not a useful or reliable indicator for me.
The recurrence of disease in the case of Jay in UK and Rikimaroo makes me worried about local recurrence and the usefulness of wait and watch protocol. Studies do say that upto 30% people in wait and watch experience recurrence. However among the people in this forum on wait and watch, it seems to be trending above 30%
3/21/17: Dx T3N0M0-mid rectal 4.5cm
4/18 to 5/22/17: chemoradiation- Xeloda and daily radiation (25 doses)
6/28/17: clean biopsy, clean scans
8/17: MRI - no evidence of tumor, no surgery, starts wait and watch
8/17 to 12/17: Folfox
8/19 VATS - 1cm lung nodule
7/17/21- Clean CT, CEA 15.6 !
8/24/21- PET , biopsy finds met along obturator lymph nodes
10/1/21- Surgery , 12 rounds of FOLFIRI -ended 4/22
4/15/22, 9/6/22. 1/20/23- Clean scan, normal CEA
10/23- four sub-centimeter lung nodules, all PET negative