Advanced colorectal cancer

Hj I was diagnosed 2020 had surgery 2021 to remove my sigmoid colon I also had one lymph node affected so had mop up which was stopped after 5 due to toxicity. But they were satisfied it was all clear.

2022 my CEA started to rise so had a pet scan and it was back in my liver and two lymph nodes in my tummy,so I was started on folfori had 6 rounds scan end Nov znd they was good reduction and they cldn't see anything on my liver,I have a scan next week. I've been on maintenance of 5fu for 6 rounds so I'm hoping it's done a good job and kept the pesky cells away

Thanks for responding and good luck for your next scan. How did you find 5FU compared to CAPOX in terms of side effects? 

Hi Amanda

I'm on Palliative chemo of Capecitabine and Panitumumab and so far so good my scans show no movement. I was on Irinotecan but stopped it because it made me so ill I had no quality of life.

This does not mean you will feel the same, we all react differently and you may tolerate it better than I did. Your team will be behind you all the way so any side effects that bother you let them know straight away as it may be that they are able to alleviate it.

Hope this helps 

Ali x

Thanks for your response. 

I only have 5fu at the moment and the side effects are minimal easily sorted bit of nausea skin dry tiredness and that's it really.

Thanks. I had such a horrible time with CAPOX, I’m feeling really anxious about going back there again.

Hi Amanda

Sorry to hear your tale of woe.

Sounds very odd to me. Has your Oncologist specified staging back when first diagnosed?

Did you initially have a PET scan? One cancerous lymph node is not much to catalyse that spread.

Anyways there are lots of methodologies to remove the liver mets..unless adjacent to arteries. Lungs not so much. Try not to stress... That just makes things worse.

Amanda24 My husband had Capox last year which did not agree with him at all. After two rounds he was severely dehydrated. He went into hospital for a month finally diagnosed chemo induced colitis. Fast forward five months after surgery on bowel and liver he is now on Folfox which is Oxaliplatin and 5Fu. 100% oxi but 50% 5Fu to start with increased to 75% after two rounds hoping for 100% soon. Prof was worried about diarrhea but it has been such a different experience this time. Five rounds done. He is very fatigued days two and three plus a little nausea, from day four onwards he feels much better until it starts again 10 days later. 
It is not exactly the same as you are having but hopefully this shows you can have a positive experience on something else.

I wish you all the best. Karen x

The thinking is that it had probably already spread but was too small to be picked up on the CT scan. 

This sounds similar to my husband Jay he was on CAPOX for 4 sessions and then became ill. He began a new regime of Folfiri (Irinotecan and 5FU) just before Christmas. He did one session of that and when his bloods were done in prep for the 2nd session it showed he was very badly dehydrated and was admitted to hospital for 12 days. This resulted in him having a catheter fitted and we found out the chemo had damaged his kidneys. Hope you have success with your treatment.

Vicky x