Folfoxiri anyone

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Hello

I have been reading up and most people seem to be given folfox for colon cancer with Liver metastasis. I wasnt sure if it was abbreaviated but the same thing as folfoxiri- but have now established it is three types of chemo in one - instead of the usual two (folfox), and so carries more potential side effects (I know everyone responds differently). But is usually given in advanced or aggressive cases of cancer (i read) to increase the odds of surgery being possible.

I dont feel like I have enough info about the likelyhood of this working really? Seem to keep this opinion back and want me to invest in the idea I can be cured. But when I go home and research - it doesnt tally. Like I am told to hope for cure but not told surgery is usually only possible in 25% of cases (so presumably isnt possible in 75% of cases then?). So a bit like hoping out of four people I would win? (And right now I dont feel touched by the lucky stick so much) That hasnt been made clear in discussions? If after the folfoxiri (assuming I dont have a heart attack or stroke amongst other risks I have to accept) the 12 weeks of potential bad suffering would be worth it if surgery is then possible - but if its then impossible then would earn me an extra 1 month in time... do they usually try and sell it in a positive way even in cases where actually it only works for a quarter of people given it?

I want to know what if it doesnt work? What if I cant tolerate the medicine for any one of the myriad of awful side effects. Just what if? Obviously I am going to be trying my best to endure it. But i would like to know its worth it. If the best outcome is cure thats great but I want to know the most likely outcome in most cases. Not hope for a miracle. I appreciate people dislike talking about bad things and like to be positive in the face of adversity. But feel like its taking my choices away about how I choose to resond. I cant wholeheartedly invest in a cure if three quarters of people in my situation dont make it and I find it hard to trust in the people telling me only about success when actually there is a higher statistical chance of the cancer winning. It matters cos I dont want to be lead up the garden path. If it is more likely will die, i cant live in ignorance because I need to protect and plan for my kids and now roughly how long Ive got in the worst case to do so.

Surely they must see cases similar day in day out and know what the outcome is in most cases. So why withold the information. I have explicitly asked. Not everyone works better with false optimism and denial. Tell me I have 25% chance of a 'cure' at best and then let me decide if those are odds I want to fight with or not? Is it not my decision?

Also over phone following MRI, after dangling for ten days nurse rang (even though I releatedly asked they dont when I am on my own with kids and gave alternstive contact to protect them) and said it was considered operable. I was relieved. But now reading folfoxiri is used when cancer is aggressive, advanced and currently inoperable. Feels like thry concealing the real facts. I am someone who likes to know whats what - not a fluffy more sweet version of the truth :( do they always do this? Withold the alternate possible outcome? And only tell you about the few positive cases? I want to know :( I am sick of researching medical journals myself to double check what I am told isnt the full picture. How can I have full picture? Anyone else had foldoxiri? Is it as bad as it sounds?

15 speckled lesions throughout my liver, sigmoid colon cancer 6cm lesion spreading entire circumference of the circle. 47f.

Coddfish 17 hours ago

Hi Moralsupport1

I don’t have the same cancer so have no experience of the drugs being proposed. I am one of the community champions and as I have metastatic cancer I thought it might still help to try to respond to you. You might like to call our nurses to discuss your options, as they are often in a position to provide more information and support. The number is below.

I can understand you wanting hard facts and data, but that’s never easy with cancer. The facts you know are your current diagnosis, as stated in your final sentence. What you can’t know is how you will react to treatment. I am not sure it’s ever wise to try to get a detailed prognosis anyway - apart from the uncertainty of it, you can’t unhear it once you have heard it. It’s then a huge “use by” date in your life. You can, however, be certain that if you don’t have treatment, the cancer will continue to spread. The symptoms from advanced cancer can be far worse than any treatment side effects.

I don’t think anyone can tell you what the outcome from the treatment will be, but people do often do a lot better than the things you can find on the internet might suggest. For example my own metastatic cancer has been reduced to there being no evidence of disease since 2023. I know I can’t be cured, my cancer had also spread to my liver. But I am getting a lot more time than I expected and my quality of life is good.

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Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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I have metastatic Triple Negative Breast Cancer, in remission

Kareno62 14 hours ago

Hi Moralsupport1 See the post below and I’m going to tag Smac9a1b81 to see if they can help?

community.macmillan.org.uk/.../2286982

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Smac9a1b81 14 hours ago

Hey, this world is a mind field I know this well.

Bit of back ground

Diagnosed with stage 3 T4 Rectal cancer Nov 2025

My bowel was occluded around 80% and closing

I was not a candidate for surgery and needed and ileostomy to save bowel.

PICC line inserted on 24/12/25 (this was the best thing I ever had, it did annoy me but saved me ALOT of hassle)

On the 26/12 I started Folfoxiri... (The goal shrink the tumour and go for surgery)

3 months in total. Every 2nd week

1 day in the beatson for around 7 hours give or take, then home with a chemo pump for 48 hours (district nurses removed on the Sunday for me)

I will not sugar coat this... Folfoxiri was brutal.... I had alot of side effects.......BUT!!!!! I took one cycle at a time... And I got through it.. I made it my mission to get through it.

I met one other person in the beatson a gentleman in his 70's he was on the exact treatment I was and said he had two days of feeling a bit yuck then he was back out on Mondays back to normal this blew my mind haha but Everyone is different.

And once the chemo cycles are complete... It keeps working my tumour went from 80% occluding my bowel to virtually zero!!!!!!!!! I never thought this could happen.

I had the option afterwards for a TAMIS local excision of the tumour via rectum (but the surgeon couldn't find it) biopsies she took were negative.

But I wasn't completely happy with this.. I wanted it all taken away. It had after all been in my lymph nodes and I know mentally I couldn't cope. So I had a low anterior resection on the 23rd ofJune, now this completely kicked my ass (pardon the pun) and I am still recovering just now.

But my pathology was negative..... That brutal Folfoxiri that genuinely made me feel horrific WORKED!!!!!

My goal was to get surgery to remove the wee *ucker and well I got there.

I know everyone's journey is different... No one wants to be a part of this club but when you have treatment options available... It may be the best thing you ever did.

I hope this has been slightly helpful and wish you lots of luck and love x

JayH1 5 hours ago

I do understand your concerns. A family member had a rare and extremely aggressive form of bowel cancer which had spread to the liver and was given chemo which made them very ill. I'm not trying to scare you and this was NOT on the chemo you will be on, if you choose to accept it, and remember this was a VERY rare form of cancer. I'm in no way trying to compare it to yours or anyone elses cancer who might read this, but the point of me mentioning it is this person died within roughly 4 months of me being told they had cancer. Therefore when I later discovered I had bowel cancer too (though mercifully a different type which was operable), the first thing I told the oncologist was that if I too didn't have long to live I'd rather not be put through chemo as I'd want to try to enjoy the last few months of my life, as best I could. I hoped this would make the team realise chemo would not be my choice if they thought there was any likelihood of something similar and that they would speak up. But I was naive about what my (different) diagnosis and chemo would entail and mine is adjuvant chemo since the tumor had been removed before chemo, so a very different situation. I was obviously anxious, like you, as to what chemo would be like. As you know, as you read about my positive chemo journey on my Folfox thread, it has been nowhere near as bad as most of us imagine, though I appreciate everyone is different and that you wouldn't be having Folfox. I've found other positives of chemo along the way, such as being in the chemo room with others in the same boat, even if you don't speak to them, can be a comfort of sorts as you can physically see you're not alone and to me it's a happy environment with positive people and really lovely kind staff.

My point is that, as has been said in other posts, how would you feel if you hadn't thrown everything you could at this cancer and the outcome was not looking too favourable later on? Would you regret not having tried? I was told that having my Folfox would only give me a 10% extra chance of the cancer not recurring on top of the statistics they gave me for it not recurring following surgery. 10% seems so tiny, but adding it to my statistics bumps up the odds a bit more and I know I'd personally regret it if the cancer returned and I hadn't tried. I wanted to do it for my family too. Someone else likened it to, say, playing the lottery - the odds of winning might be low but it doesn't stop many people playing it because there is hope. Of course, if you're worried about side effects you can always try chemo and then stop having it if you don't think you can tolerate it, as agreeing to have it doesn't mean you have to endure the full course. That might be a consideration?

I still get what you're saying though - not really knowing for sure what the future might hold. I'm a great believer in hope and a light at the end of the tunnel - I'll even take the tiniest pin prick of it to keep me going. Although in a different situation to you, I'm getting through it with positivity, which I know is extremely hard for some (and I used to worry about everything prior to this). I've surprised myself (after the initial shock of the diagnosis) with the strength I've got from somewhere, but it sure helps me through every day and to be happy and not stressing about things in general, which in tum is better for health and wellbeing. I know it's really hard and we all cope in our own ways, but I send big hugs and hope you can make the decision which is right for you. Wishing you all the very best. x