CAPOX chemo, starting soon. Any advice or experience of it?

[SimonCaldersPassport]

I’m starting Capox at the end of the month following Whipples surgery to remove an Ampullary tumour. I’m a little bit worried about the side effects particularly the problems with fatigue/nausea and neuropathy issues. Anyone been on this combination of drugs and would be happy to share their experiences. TIA

I haven’t been on it but I’m a chemo nurse. It’s really difficult to predict who will get what side effects so you have to be told everything. You are likely to get some side effects and for most people these will be manageable.
You will have antisickness meds before and in the days after and if these don’t work on the first cycle they can be changed.
Uou are likely to feel some fatigue and have days that you need to rest especially towards the end of treatment as it can be accumulative.
Neuropathy can happen but mention it to the drs if it does as if it’s bad they can reduce your dose.
Macmillan has lots of information and resources about coping with fatigue etc.

Good luck x

Hello! I’ve also had a whipples procedure - I had stage 3 pancreatic cancer 8.5 years ago - all fine now! I’ve had capecitabine with Gemcitabine as a combo post surgery and oxaliplatin as part of a folfirinox treatment before surgery - so I’ve had what you’re having but in a different combo.

The post surgery chemo was much, much easier than the folfirinox, which was difficult at times. It’s so hard to give you any decent feedback as obviously I can’t pinpoint what side effects came from what drug due to my different combos so I’m sorry if this isn’t as helpful as I’d like it to be 🤦🏻‍♀️

First chemo - side effects were very odd at times 😂 I’d have the tingles in my fingers and toes but also in my throat if I drank anything cold. Fatigue was prominent and nausea/sickness rough, too - you NEED to sleep as much as possible and keep hydrated. The pre treatment meds will really help you, too and if the sickness meds don’t work ring your triage line and you can have alternatives prescribed.

Ask for ensures or some form of nutrition - as you probably already know post whipples weight loss is generally massive (although I’m a fat cow now!), mix that in with chemo and eating and staying nourished can be a bit rough.

It’s amazing how much you forget over the years but if there’s anything specific you’d like to ask me, as someone who’s been there and living to tell the tale, please feel free x

@SimonCaldersPassport I’ve had the CAPOX although that wasn’t what I knew it as. I thought it was tolerable although the paresthesias in my fingers were not fun. I was advised to get some gloves to protect my fingers from the cold. Once I finished that regimen it took at least a month for those to go away. I’m on my third set (for lack of a better term) of chemo drugs so I’m also not sure of what SE went with what. My sense of smell and taste were off right from the start so no more candles, lotions, perfumes etc. and I eat whatever sounds good in order to maintain weight. I was drinking Ensures and Boosts for the calories. Good luck with your treatment. I follow Cancer Support Thread #98 which is extremely helpful.

Watching this thread with interest, as I start CAPOX on Tuesday 😟

Taste! I forgot about taste. I constantly felt like I had a metallic taste. I had boiled sweets, sugar free when possible, constantly x

Hello and thanks all for the responses!
@Toadstoollover thanks for the help, I go in the day before i start and have a session with Maggies who are onsite at the hospital (as are MacMillan i think) so I will definitely be using them for support. They then give me a 'tour' of the chemo ward to see where I will be going the following day.

@Amybelle88 @Sbmpp Thanks for sharing your experiences. I havent had the post Whipples weightloss (mores the pity!) as the creon seems to be doing its job so far, but will bear in mind what you say about nausea/sickness, and taste side effects, boiled sweets sound like a good idea.

@Jilllybean Good luck for Tuesday, hope it goes ok for you. My treatment will be one week behind you.

I have been sent yet another curve ball in as much as my recent bloods show DPYD deficiency and having read between the lines (well, stuck in ChatGPT and asked for a translation!) i will have a reduced dose of the Capecitabine to start before increasing slightly but never the full dose.

At least i think that is what will happen - i havent heard anything different from the hospital, so all being well will start on the 28th January.

I had capox. The iv is not fun - take a blanket with you and wrap it around your arm when the fluid goes in. The cold made my face burn and I used gloves to take food from the fridge - I could not cope with the freezer!
I had neuropathy for about 6/9 months but it went away completely.
expect fatigue and a metal taste in your mouth. Boiled sweets helped me as did pineapple!
I didn’t throw up once during the whole treatment. I just didn’t want to eat much because of the taste kn my mouth. Good luck!

Yes, you will need a reduced dose of cape.
Have a low tolerance for calling in with any symptoms.

How did your first session go, SimonCaldersPassport ?

Hey @Jilllybean I only got in from hospital at 8pm, what a long day. I found the IV of Oxi uncomfortable, my arm is still painful, and while it was going in it kept getting shooting pains. The nurse kept filling gloves with warm water to hold on my arm bless her. And the cold coming home made my lips and fingers tingle, so weird. And then at home oh my god, can’t touch the metal door handles, light switches, and have just eaten with gloves on because touching the cutlery was like getting electric shocks. Just taken the Capecitabine, on a reduced dose because of the DPYD thing, so waiting to see if that sends me squiffy
How are you getting on? All ok?

That sounds pretty much what I was expecting, Simon. But I got a bad throat spasm in the chair! I think your symptoms will wear off in a day or two.

@SimonCaldersPassport I went through the same thing with @oxiliplatin (I think that’s what it was called). It was several weeks after I finished before it went away. So you had the throat spasms?? I was warned about that and gloves were recommended which I used. I wore socks constantly too. I remember that even warm water tasted cold. It was one of the strangest side effects ever. Wishing you the best.

So today has been interesting- the fingers thing is so annoying- even with gloves, as soon as I do too much with my hands - getting dressed for example, they start up with the electrical shocks/million tiny pins thing. But the jaw locking/pains on the first few bites of food - even warm stuff - wow that’s off the charts painful, hope that dies down.
On the funny side, I went for a wee in the night and after sitting on the cold toilet seat for a minute the backs of my legs started, it took all of my will not to jump up and pee all over the floor
How are you doing just over one week on @Jilllybean
How are you finding the Cape?

@Sbmppthanks for the good wishes, however bad it is I know it’s the right thing to do so just got to get through it, like plenty have done before me.

Perhaps take a hot water bottle with you next time x

I had capox and had the same symptoms as you.

Mostly they had eased off by day 4 or 5 although the finger and foot tingling carried on longer as I went through treatment.

I found the second session easier because I knew what to expect and had bought some plastic cutlery etc.

I finished just before Christmas and I’ve got no ongoing symptoms now, apart from low iron, everything went away completely for me after treatment stopped.