Good morning, this is my first post.
I was diagnosed with stage 4 bowel cancer that has spread to my liver. The main tumour is a near blockage of the descending colon, but I haven't required a stoma. I then have a number of small tumours on my liver.
I have had two chemo cycles. The first was just FOLFOX, and although a lot of nausea and sickness it was tolerable. Two weeks later for cycle two my oncologist added in oxoliplatin and Cetuximab. The side effects this time have been near unbearable. Does anyone else have experience with this and can reassure me it will get better or suggest ways to cope?
The days of treatment and wearing the pump were OK ish, but for the 8 days since I have been getting turned inside out. Really bad stomach cramps and constant loud gurgling. Everything that comes out is liquid and quite explosive and the loperamide do nothing. I'm sick a lot and can't keep any food or liquid down. I am so weak and losing more weight. I'm under 40 years old and have gone from competing at sport at a national level to not being able to get up the stairs in 4 months! I am motivated to get through this, it's not lack of trying to get food or drink in me, or keep it in. It just doesn't work. Is this all normal, does it get better? Does the body learn to cope??
Thank you!
so sorry to hear this but i think given your side effects you need to phone the helpline so they can tweak? i havnt started mine yet ( next week) but have been advised not to be a hero and report symptoms such as these
hope your better soon
Linda
Thanks Linda, I have phoned the helpline and been back in to the center. Other than a drip to get some fluid into me I didn't recieve any other advice that has helped, hence turning to this forum!
that’s not good to hear so sorry you are suffering like this, i hope someone with more experience reaches out
take care and keep us posted
linda
My husband has very similar symptoms, particularly the non stop diarrhoea. He isn’t sick but he’s very down about it all. We’re seeing the oncologist tomorrow and hoping for a reduction in dose as he’s had about 3 good days over the last few weeks and it’s not tolerable. Will let you know how we get on!
Hi , you really are on the "big guns"! Sorry you are suffering, I was on a similar regime, Folforinox for 12 then the oxy was dropped and dose reduction of 20% and cetuximab added. I was only sick a couple of times which I mentioned to my Onc and was given stronger anti-sickness tablets which helped. I alternated between constipation and diarrhea but not to the extreme that you mention. I would speak to your oncologist if you can, I used to have a pre-chemo tel call with mine to discuss side effects and if I was OK to carry on. As you are struggling to keep liquids down it def needs to be brought to their attention as its so easy to get dehydrated which can happen very quickly. They may adjust the dose to make it more tolerable.
Best wishes,
Michelle
Thanks Michelle, I am seeing my oncologist later in the week so hopefully he has measures that can help!
Hi Jimbob sorry to hear that your suffering my chemotherapy stars Friday and iv got explosive dioreah they took a sample and they said I may have a bug but you need to phone and get it soughted you could get dihidrated iv got diorolite to stop that we haven't spoken for ages wondering if your ok best of luck with your treetment x
Hi
Rough time indeed. Different combination for my mum but a small dose reduction turned it from almost impossible with frequent admission for fluids and knocked of electrolytes from dehydration and nausea to having a quality of life again . The dose reduction was in the second year and turned out to get similar results as the first year .
Hope your team can make the necessary adjustments to strike the right balance for you .
Court
Helpline Number 0808 808 0000
Thanks court, that is exactly the type of thing I wanted to hear. That there is maybe an alternative and a positive way ahead. My oncologist did say that because I was young and fit he would hit it as aggressively as he could with everything he had. Hopefully he can dial it down!
If you click on my user name you will see my mum started treatment back in 2009 and only Oxaliplatin and cap was available as first line chemo for her . Cetuximab was not available back then in Scotland so I do think they are giving you all they have , which is a good thing but definitely gives them room to manoeuvre and find your own tolerance dose . But we did find them excellent at listening and trying different ways to manage things . Her Oxaliplatin was only reduced by 20% but what a difference it made . I can only encourage you to chat to your team as they are great at responding.
You are getting through those cycles though ! My mum scanned at six . Have you got a plan for scanning yet ?
Hope that big dose has given them considerable shrinkage!
Take care ,
Court
Helpline Number 0808 808 0000
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007