Janis wrote:Hello everyone. I have been reading this forum for about a year now. I have found the articles on this forum to be very informative and the most kindest and caring people I have come across. I find my heart and my mind in a tug of war over my situation. I was diagnosed Nov 2015 with stage 3 cc. Dec 2015 had surgery to remove lemon size tumor in my sigmoid and had 18in removed No ostomy.. Caught staph infection from surgery and during a x-ray they discovered 11 nodules between both lungs. Started Folfox w/oxi. Dropped oxi and added Avastin. Everything stayed stable until about 2 months ago. Had to take a break from 5 fu Due to horrible mouth sores. During this one month break I had a scan. Now comes the Dilemma my scan showed it had spread to the right side of my liver and to my ovaries as well as my chest wall, peritoneum and trachea oh and let me not forget my hemorrhoidal nerve. I asked my Oncologist who gets cancer on their hemorrhoid. That's the only laugh I had that day. I am now on Irinotecan/Avastain. Now with 40ish chemo rounds my mind tells me I will never reach
NED and therefore stop the treatments. But my heart tells me for the sake of my children to keep going. I know that by God's grace would be the only way I would be cured. Am I wrong for thinking this way because everyone here is fighting for their life.
I know it is not easy but keep on fighting on. You never know when things turn around.
This January 2017 I was told I was on palliative care and treatment as my folfox had failed . My CEA levels were around 4000 ( and went upto 25000+ later ) . I was suffering horribly due to chemo side effects . None of chemo protocols were working.
I was preparing for worst with will preparation and goodbyes.
Then oncologist put me on Nivolumab as a sort of resort in May 2017.
Disease and body seems to have responded. cEA levels are dropping drastically.
also try meditation and exercise to best of your ability.
and please do not give up .You never know when things turn around.
(ps. I am msi--h and lynch+ve)