Colon rectal Cancer Stage 4

Sorry you are here, but it is a good place to be. Every patient is different, but below are my general thoughts based on what you are describing. Also please note that I have colon cancer, not colon/rectal cancer. There are differences in treatment. Some other people may be able to chime in there.

To start off, that is seriously great news. What you are describing, in general, is something called “No Evidence of Disease” or “NED”. Broad stroke, though not quite the same, it is “remission.” If someone is NED, usually treatment is stopped at a certain point and the patient is monitored via scans & bloodwork to see if cancer has become active again.

Usually after surgery for late Stage III or Stage IV there is going to be adjuvant chemotherapy. A common one in FOLFOX (5FU is part of it, you may have seen that) or FOLFORI. This last for 6 to 12 cycles - some places use 6, some 12. Your husband may be on something different (it may have varied based on what doctor saw), but the patient would usually run the 6 to 12 treatments until they are done, even if CEA dropped and scans are clean. If the harsh side effects start, then maybe they stop earlier or remove a part of the cocktail. (Keep an eye out for neuropathy.) Lymph nodes (if that is where the mets were) can also fluctuate and/or look like cancer when inflamed. Not sure if some of the mets you described were lymph nodes? Kind of sounds like it based on the locations. Were lymph nodes tested after surgery? That can give some indication.

I have been playing kick the can for over 9 years now with various treatments. Each one that brings the things down gets me to the next new thing. One of my drugs I used in 2020 was not approved for Colon Cancer until a year after my diagnosis in January 2015. I have had two drugs trials that worked (been in a total of 4). The first one was okay - kept things in check for 8 months. The current one is working two years. There is a lot of things happening, a lot more quickly than since when I was diagnosed. So if your husband is NED now, he is in good shape.

As to working, many people work while on chemo. Depends on the chemo and person of course. I am not an athlete, never ran, but in 2017, when I was told I will always have cancer and it cannot be operated on, I started exercising. I have completed about 6 1/2 marathons and many other running races while on treatment. Though I am slow ;) Also completed Ironman 70.3 race.

Hope this helps a bit. Obviously this all really stinks, but what you are describing sounds like great news.

I am 42 years old now. I was diagnoised with Stage IV Colon Cancer that had matastasized to my liver on March 6th, 2023. I had a colon resection with liver biopsy on 3/13. A port placed on 3/27 and I started 12 rounds of chemo on 4/3. The chemo shrank the tumors enough for surgery (CEA was below 1.8). I had liver surgery on 11/9 to remove the tumors and my gallbladder. I was declared N.E.D. on December 6, 2023. I told you all of that to say that means his body is responding well to the chemo. From my own expirence, they are could have given you the absolute worst case senario in a sense but they hope for the best so to speak. They can't say how each individual's body will respond to chemo. He is doing well right now, please hold on to the good days. I hope there are so many more of those to come for your family. I am truely sorry for what you are going through. It's a rollorcoaster of emotions. I hope I helped a little.