Capox Advice

Hi JM7180b520 and a warm welcome to the board. Yes chemo can be tough but sometimes its reputation is worse than the actual experience so go in with an open mind? 
I had my capox in 2017 so I’ll share my experience then send you a couple of links to a top tips post and also a more recent chat about capox.

How long does it take? It’s a good few hours depending on how busy the room is and whether you have to wait long for it to come down from the pharmacy. They’ll also check your bloods to make sure your white cell count is high enough. They put a cannula in then flush it and then the chemo. You might find that your arm begins to get tingly so ask them for a heat pad or something similar. You might have an introduction to the room before your chemo starts so you can check if you get fed! If not take some food with you and a flask - more of that later. The nurses will monitor you so if you start to have any issues they’re on hand to reassure you.

Oxaliplatin and the cold are not compatible. When you leave the unit make sure you’re wrapped up and cover your face with a scarf - a nippy wind hitting your face can cause it to twitch and spasm making you look like an Elvis impersonator. Your throat may also feel a bit funny and that’s where a warm drink can help.

Once home you might find your arm is sore so a heat pad can help. You might find that touching anything below room temperature will make your hand tingle so wear gloves when getting anything out of the fridge and no ice in your drinks. 

The capecitabine tablets are pretty tolerable - I pretended they were multivitamins - and then by your week off you’ll hopefully be feeling ok and ready for a treat. It’s worth keeping a symptoms diary just as a reminder for anything to run past the nurses and also to see if a cycle is developing so you can plan around any not so good days. You’ll also be given a 24 hour support line which is there for reassurance and not just emergencies. 
The side effects can increase over time but there are lots of pills and potions to combat them so talk to the nurses and your team if you’re struggling.

Anyway here’s the links that I mentioned 

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/263084/chemo-top-tips-updated

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/292722/capox-journey

Happy to answer any questions but everyone has a different experience so it’s hard to predict how you’ll find things so give it a go and remember the cancer has been removed and this is just the belt and braces

Take care

Karen x

Hi JM7180b520,

Lots of good advice here from Kareno62 - it is a scary prospect but you will find your way through it. After reading the list of side effects I nearly changed my mind about having treatment. But try to remember it’s setting out everything that could happen not everything that will happen to you. Good luck! 

Hi Karen . Thank you so much for replying …… top tips and all so helpful. Really appreciate your time x 

Thank you for your encouraging words, just need to hoist my big girl pants up and go for it x 

Similar diagnosis Oct 24, followed by surgery and eight cycles of Capox.    Declared cancer free July25.    Remain tired and with peripheral neuropathy in fingers and toes,    Good days and not so good, no bad days.    Seems be getting better, but very aware that I continue to recover from cancer treatment and will for some time.    A tough journey, but worth it.    Stay positive, one day at a time.   

Diagnosed Colon Cancer Oct 24, similar profile, surgery and eight capox cycles followed.    Remain with tiredness and peripheral neuropathy, plus tiredness.    My body continually tells me to slow down.     It’s a tough journey, but worth it .  

Had resection in August for sigmoid tumour.

Had Capox first infusion but had Grade 3 diarrhoea for 2 weeks with admission to hospital for 3 days wirh dehydration.

Changed to Folfox and due 3rd (of 5) infusion this Thursday. Much less side effects.

But, everyone's different.

I just take my phone and play games or watch tv.

Infusion can take 2+ hours so plan to be there for 4 hours.

Best wishes

Thank you for your message and for sharing. Hopefully the balance will tip for you and your recovery continues well. 
I hadn’t really given any thought to post chemo, I guess wrongly assuming that once treatment stops then all settled after a few weeks. Definitely food for thought and as you say, one day at a time. Take care . 

Hi Carole, thank you for sharing your experience. I hope the FOLFOX continues to work better for you, Good to know that they can switch between treatment plans if needed. I will just see how it goes and cross each bridge as I get to it. Take care. 

Hi JM. I had my colon surgery back in December 2023 followed by Capacetibine and 3 rounds of Capox. I'd read all the possible side effects which, as you say, are enough to make you run for the hills. BUT - the reality was totally different. Just had tiredness and Neuropathy in the hands and feet (don't put your hands under the running cold tap and wear gloves to go into the fridge and freezer). That was it.

I still have slight neuropathy in the feet. Very occasionally feels like they are cold when they're not. Small price to pay for being free of the cancer.

So I'd say just go with the flow and deal with any side effects that might crop up by reporting them to your nurses or colorectal support nurse and they'll advise you as to the best way to treat them.

I took my phone in with me for the infusions and watched a film or the rugby. The time soon passed and kept my mind away from any catastrophic thinking. I got the arm pain during infusions but the nursing staff gave me a heat pad to help with that.

Honestly, I would never be worried if I had to go through it all again. So I wish you all the best for your treatment and try not to imagine what might happen, just deal with whatever comes as it comes. Most of the side effects probably won't happen.