Hi all,
I had emergency surgery in 2021 to remove a large tumour in bowel, along with 3/4 of the bowel. Followed by chemo - oxaliplatin (stopped after 2 rounds due to allergic reaction) and continued with capecitabine for 5 rounds. One year later, cancer in small number of lymph nodes at aortic valve (inoperable) and 6 months ago small spot detected in liver. It's a slow growth. I've been doing CT scan every 3 months and oncologist appointment - process has been watch and wait. I'm now being invited to think about starting chemo - cetuximab and irinotecan. Once I start, it will be every two weeks, and I'm not able to stop the cetuximab due to funding (you can have max 6-week break). The side affects are tough.. I've got some time to decide - I want to balance possibility of containing cancer with quality of life and the restriction of 2-week cycle for rest of life. I think without chemo I have a prognosis of 12-18 months, with it I'm not sure. Any experiences or thoughts? Thanks
Gwen14 Hi Gwen. I’ve not been on this chemo myself but hope the post below might help?
CrumpetsOrToast Is this what you’re on? X
Just a thought , I have seen people reporting on here that after a period of time , once stability was gained they remained just on Cetuximab .
i have to say my mum was on that alone for ten months and at 81 she managed well . It was not so tough as chemo . The side effects took turns rather than accumulating. Depending on your health trust some use continuous antibiotics to keep on top of the rash and that certainly worked well for my mum .
My mum was a stage 4 patient for 15 years . She had chemo two years . But other options opened up so she got breaks too that lasted years .
She always sought out other clinical opinions .
A lot to consider .
Take care ,
Court
Helpline Number 0808 808 0000
Hi Gwen14
I have been on cetuximab for over a year and am managing to live a good life, holidays, school runs, days out, etc. I started on folfox + cetuximab for 12 cycles and then dropped the oxaliplatin and now just on 5FU and cetux. I have little breaks for half terms, it's nice to have an extra week off here and there and im planning to skip a cycle over Easter to go on holiday. My last scans show everything is stable, I've got a PET scan on Saturday, I'm hoping it will show the cancer is inactive.
Cetuximab is the treatment that works for me, it's my second time on it and I've had good results. I've been lucky with the side effects, just dry skin really.
I think in your position, I would give it a go. Not everyone gets bad side effects. You can always stop it at any time, or they can lower the dose. My Onc said she has patients that have been on it years.
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