Colorectal Cancer progression

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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

  •   Hi Gwen. I’ve not been on this chemo myself but hope the post below might help?

    https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/289645/maintenance-therapy

      Is this what you’re on? X

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

  • Thanks Court - that’s really good information. Amazing to see how many years you had your mum with you. Thank you for sharing - it’s really helpful 

  • Hi  

    Was offered Folfiri with Cetuximab rather than Folfox but after recent review swapped Cetuximab for another similar drug and taken out 5FU for now as I had so many side effects to it last time.

  • Hi  

    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.  

  • Thanks Star74 that’s really helpful. I’ve been told once I start I’m on it with max 6 week break and I was struggling to get my head around how long would I be on it. Its good to know you extend the cycle slightly