Bowel & liver cancer , Capox treatment questions (long read)

Hi, sorry to hear about the diagnosis. In terms of coping with capox, oxyplatin..... I had 6 rounds of it and the main side effects were reacting to the cold in the week after treatment. Keep the hands and throat area warm. I got what felt like small electric fence shocks when touching anything cold, out the fridge or freezer. Even thin summer gloves helped a lot even if you don't feel cold as once my hands had gotten cold they cramped up and took running them under hot water or a water bottle to get my hands moving again. It actually affected my eyelids too on colder windy days. Keep to warm drinks, or keep thermos bottles on standby with warm water in or tea or coffee. It also affected my sense of taste though. Everything tasted extremely bland and..... Kind of dry and dusty. So maybe some tastier foods? And on and off constipation or  diarrhea. I found it a Ballance act between the two and was advised to keep both kinds of medication on standby. These side effects weren't too bad for me though and tended to improve as you go further through the week from the treatment day. 

I was also advised to get some corsodyl mouthwash as a prevention for any issues, and plenty of moisturizer also as a preventative measure against dry skin on hands and feet.

I also swapped oncologists, but mine have said they would carry out the chemo before the surgery to try and get some control instead of attempting surgery then it coming back. Which leaves me with Bowell and liver tumours and hoping the chemo works. 

I don't think there's a one size fits all treatment plan unfortunately and no one knows what will work best.  I've always been frustrated and anxious about it all and I still don't know what will happen. But I find it best to try and just focus on what I can do on each day. Which sometimes isn't much. Main thing is to be kind to yourself and each other. I hate not being able to do much and I'm annoyed at myself for having cancer even though it's not anyone's fault. The best thing is that you and your Mum are here today and have each other.

I hope some of my tips may help 

Neil

Hello. I am doing this chemo. I am on my 3rd round. First two was not that bad, pins and neadles in the place there they done infusion. Could not do any cold like fridge, cold food or cold water for about week. After it was more or less ok. The 3rd is a bit harder everything the same but little bit worse. More tired and sick, no energy. The hardest bit is first week after infusion. Second week is easier.  Hope it help you a bit. Wish you and your mum all the best. Stay strong.

Hi cjb.0809 I’ve just typed a long reply and our internet crashed and it’s not posted grrr so I’ll just pop this link up instead

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

Hi cjb.0809 

Not sure how common it is but my mum had an immediate recurrence following liver resection. We were told some microdisease can lurk and make itself known . In terms of the size of spread your mum has it is tiny .

My mum had further chemo then more surgery and that did the trick . She never had a further recurrence in her liver and lived for another 14 years and got to be a much older lady .

It was hard to hear initially but they continued to treat her and deal with the issues .

I wish your mum every success and many good days ahead .

Court 

Hello there, if you don’t mind me asking how big was the lesion on mums liver xx

Hello there xxxxx I have just had my diagnosis so I am a little all over the place if you don’t mind me asking how big was the lesion on the liver xxx

She had five . One was five cm . Then a recurrence of another five around one cm . 
Court 

Thank you all for your really helpful replies, we took everything onboard and prepared as much as we could for the treatment; made sure to bring a scarf and hand warmers to deal with the potential neuropathy side effect, and I’ve also stocked up on moisturiser and mouthwash too. We’ve been extra careful with food / drinks in terms of temperature so made sure everything has been at room temperature. 
Lots of tips were mentioned that we weren’t aware of so thank you again.

My mum had the oxaliplatin drip this morning and she has 1500mg capecitabine tablets to take shortly.

We are wondering where her it would be a good idea for her to take an anti-sickness tablet before the capecitabine? We were told to take only if she’s been feeling sick, which so far she thankfully hasn’t, but just still unsure with it being the first time she’s taken these tablets. 

Thank you xx

Hi Positivityrightnow , sorry to hear about your diagnosis. 

We don’t actually know how big the lesion was in the liver, my mums cancer started in the sigmoid colon and spread to the liver, we do know a third of the liver was removed.

Im not sure how it works but if you’d like to message me privately feel free xx

You are a wonderful daughter helping your mum . That will be such a support for her .

I honestly can’t remember about the sickness tablets . Mum was not too sick .

Take care ,

Court