Refusing folfox treatment after chemoradiation

@dselland amazing that you are NED after just 2 difficult treatments…way to go ! I too am older and put the highest value on quality of life for my remaining years.

@janetgraham You are so right that each person must decide to do - without feeling pressured to choose one thing over the other - what they wish to do.

I didn’t do chemoradiation which I gather is a targeted treatment on tumours. Instead I did major surgery including a colon resection. I did then agree with my oncologist’s recommendation to do 6 months of fortnightly Folfiri and Avastin with thev48 hour take home bottle to mop up any undetected cancer cells not showing up on my PET-CT scans (with contrast).

I chose Folfiri over Folfox - less chance of neuropathy. It wasn’t pleasant at all, some very bad days, but generally ok for me. Everyone experiences chemo differently.

My oncologist wanted me to go onto maintenance chemo after that. I meant to have a very short break as I had had enough and couldn’t face any more treatment immediately. Instead I didn’t go back on treatment and when I got cold feet and queried going back on the window had closed. I’ve been NED since mid 2022 and in August it will be 5 years from diagnosis. I have had regular surveillance blood tests and PET-CT scans (with contrast) since 2022. They started off 3 monthly then 6 monthly. Next year if my next scans and blood tests are still good I’ll go to 12 monthly scans with 6 monthly bloods.

@girafe It’s difficult deciding what to do and you can only do what you think is best for you whatever the end result is ❤️‍🩹

@girafe
You have done chemo radiation .Why not go for surgery now.Even if they say you can escape surgery,the statistics doesn’t support that especially for stage 3B.
Like me if you are lucky and the nodes come negative,you are escaping add on chemo and you escape long term bugbears.Please discuss with your doctor.I discussed with my surgeon and pathologist and then took a call on No chemo.

@115
Sometimes the recommended treatment is hard to deal with.
Don’t ever stop thinking for yourself and doing your own research.

@girafe well I saw my oncologist today and my scans were clear I’m in remission now. I see the surgeon on Thursday to have a scope done hopefully he won’t see anything either. But the thing is they’re wanting me to choose more chemo to prevent cancer in the future. Without it I have a 72% chance of it not coming back in 3yrs. My diagnosis is a T13X it seems none of the studies done were for someone in my situation. I’ll be 71 yrs old and I’m not sure if I want to go through chemo again.

@girafe It is wonderful that your life has been amazingly lucky. Are you really willing to take a chance and not do folfox? I was diagnosed stage 3 rectal cancer. After chemo radiation it looked like my 3 cm tumor was gone. The folfox continues the fight. Yes, there are side effects but please do what you can to make sure your cancer is gone.

@janetgraham
Thank you. I have done so much research yet I have not reach a decision for myself… maybe I am over thinking

@girafe well I saw my oncologist today and my scans were clear I’m in remission now. I see the surgeon on Thursday to have a scope done hopefully he won’t see anything either. But the thing is they’re wanting me to choose more chemo to prevent cancer in the future. Without it I have a 72% chance of it not coming back in 3yrs. My diagnosis is a T13X it seems none of the studies done were for someone in my situation. I’ll be 71 yrs old and I’m not sure if I want to go through chemo again.

@girafe I am good at the over thinking part .
It’s good we don’t make quick decisions.
Take care-

I'm stage 3A. I had surgery to remove the tumor in my hepatic flexure. I started Folfox about a month after surgery. I did 2 of 6-12 rounds and decided to quit because it was causing severe stomach pain and neurological symptoms in my arms and legs. I'm now 70 and maybe cancer will be my cause of death but in the meantime, I'm back living life to the fullest extent possible instead of being medically tortured. I'm currently one year ned.