So I attended my first oncology apt today and it broke me I really didn’t think I would need 6 months of it, 6 months of CAPOX, I don’t think it’s the idea of chemo scaring me it’s the possible side effects that are freaking me out, now I know everyone is different but if I’m being honest I’m a absolutely terrified of what might happen. She said this is all because 15 out of the 43 lymph nodes removed were cancerous and obviously could have spread and gone undetected, the final staging once the tumour was removed was 3b not stage 2 as originally said when first diagnosed which was abit of a shock but hey I will do everything I can to fight this, we have all got this.. now please let me know your experiences and side effects if you are having the same treatment as us, I want to know it all xx
Hi VJS1985. Yes there are a lot of side effects with Capox but you’d be very unlucky to get all of them. We started a thread a while ago about some of the side effects so feel free to have a read
The main thing is not to suffer in silence. There are lots of pills and potions to combat the side effects and if 1 antisickness pill doesn’t work then tell the nurses and they’ll give you a different one. They always start you on the maximum dosage for your weight and height but this is often reduced to help combat any side effects and can make a huge difference so tell the nurses if you’re struggling.
I found it helpful to keep a bit of a diary going. You may find the first couple of days after the infusion are a bit rough but then you feel much better on your days off so can plan a nice treat for that time. It also helps as a reminder for when you see the nurses if there’s anything that you’ve struggled with.
The oxaliplatin is given by iv and can have some strange side effects. You will find it makes you extremely sensitive to cold and by that I mean anything below room temperature. Take a scarf to cover your face and mouth and gloves to wear when leaving the chemo unit as the outside air can make your face twitch. I bought some cheap gloves with little nobbly bits on the palm for getting things out of the fridge/freezer and driving.
Keep your hands and feet well moisturised - my nurses recommended Aveeno with Shea butter which you can get in the supermarkets/chemists for about £5 - and tell the nurses if they start to feel hot or prickly.
Cold drinks can feel like drinking broken glass so I used to drink blackcurrant juice with a splash of warm water to take the edge off - the capecitabine tablets are quite big and they advise you not to touch them so I used to pretend they were vitamin tablets, tip them into a empty bottle top and take them from there. Always take them with food even if it’s only a couple of biscuits.
Lastly you should be given a 24 hour emergency contact number - this is not just for emergencies and you can ring it if you’re worried.
Hope this helps - like you say everyone reacts differently but sometimes it helps to know what is normal - I remember someone saying that she hadn’t been warned about first bite syndrome but wasn’t worried because she’d read about it on here.
Its tough but you will know that you’ve done everything possible to prevent a recurrence.
Take care
Karen x
Cant add much to karens post except I was advised to get a hot drink from the machine or cafe to sip in the car on the way home after the oxy.helps with the cold problem and throat spasms.also do clean your teeth with warm water not cold.
Kath
Ps.I found it easier if I wore clothing that I could manage with one hand going to the loo whilst attached to the oxy drip
Last but not least.Plan something nice for the week off.lunch with friends,day trip etc
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