Hubby starts Capecitabine chemo this week

Hi

i am currently on a high dose of this tablet. Have to take it twice a day. I have 5 tablets to take each time. I take for 2 weeks then have a week break. I struggle sometimes. Just make sure to eat half hour before. I normally have somethiing light. Make sure you pick a time that suits mornings and evening as they are taken 12 hours apart. 
I’m on 1 day if IV as well so hard to say which reaction is which. I mainly feel tired and nausea is quite bad but subsided after anti sickness tablets. They should give you these. I lose my appetite too as everything tastes different. As I say I have IV so mine may well be that. 

input my tablets in the small pot given and don’t touch them as advised and tip them in one at a time as few are quite big. 

Every one will react differently but mine hasn’t been to bad as far as the tablets are concerned. 

Good luck with treatment. Stay positive 

Hi Kelster,

Thanks for letting me know how you are getting on with Capecitabine and for the tips you have given. That’s so helpful and I appreciate you taking the time to reply.

I’m really sorry that you are struggling with the amount and also high dosage of your tablets at times. You are having to take a lot of tablets each day and that must be quite difficult. Not sure what dose my hubby will be given, all I know is that he is to take 1 tablet twice a day, 10-12 hours apart. That’s what the oncologist told us at his appointment. Yes, I think he will also be given anti sickness medication like yourself, I’m sure that was also mentioned. We’ll see how he gets on after Friday, fingers crossed things will be fine. 

Wishing you all the very best with your own treatment, take care and look after yourself.

Love Roses x

Hi roses26 ,

I'm on mop up chemo too, as none in my bloods or lymph nodes.  I'm on the same drug but I have the dpd deficency so I'm on half dose for 8 rounds.  I just finished round four.

The worse side effect for me is the fatigue.  There are others, but the fatigue is whacking me as I'm usually a very active person and if I can manage to walk the dog and then do a few hours work - I'm having a good day.  I am losing hair, but it's more thinning than anything else.  I just have a slightly wider parting and it's much softer.

I also do two weeks on and one week off, normally the non-chemo week (this week for me) is the worst.

My recommendation is to listen to his body and to try to rest alot, small amounts of exercise like walking etc are a good thing too as they help on the 'cheer up the brain' side of things.

Good luck!

Cerysm

Hi roses26 You sound to have a really good grasp of the situation. Capecitabine is a lot more tolerable on its own - quite often it’s the iv part (oxaliplatin) that’s the nastier one. I pretended they were multi vitamins! I would recommend making sure his hands and feet are kept well moisturised too - Aveeno with Shea butter was recommended by my nurse and you can get it in supermarkets etc. 

The 24 hour helpline is not just for emergencies so you can contact them if you have any worries. Sometimes the reputation of chemo is worse than the actual experience so see how he goes. It is just the belt and braces as the tumour has been removed but, as my friend advised me, throw everything you’re offered at it.

Hope it goes well

Karen x

Hi Cerys,

Thanks for letting me know how you’re getting on with your treatment. Great to hear that you’ve reached the halfway mark now! 

It’s a strange thing, I’d have thought being on a week off chemo would actually make you feel a bit better but I guess that’s maybe the way the medication works. Hope you get on ok this week. 

The fatigue side effect of chemo is worrying us a bit as hubby already has to cope with feeling tired as he has hypopituitarism. But, he will make sure that he gets plenty of rest. All we can do is see how it goes and take it from there.  As for losing his hair, he’s pretty much resigned to it but says that saving his life is more important, so he’ll just wear a hat. I’ve told him that I love him with or without hair anyway! Makes no difference to me at all.

All the very best with the rest of your treatment, hope it goes well for you. Take care.

Love

Roses x

Hi Karen,

Thanks so much for your helpful advice as always. I will pass on to hubby about keeping his hands and feet well moisturised during treatment; this is really important for him especially since he has psoriasis on both his hands and feet, so we will keep a watchful eye on that in case chemo makes things flare up.

It’s just good knowing we have the 24 hr helpline as backup in case we need it. You never know what time of the day you’ll need quick advice and not having to go through the GP or wait in a long phone queue to NHS24 makes us feel better.

Like you say, you want to throw everything you’ve got at the cancer, which is why hubby is going for this chemo. It won’t be easy but if it gets him to a good place, it will be worth it. And he knows he is going to be having health surveillance for years to come, so he feels reassured by that.

Take care,

Love Roses x

I had very little side affects for first two rounds.  Make sure moisurise feet every day from day 1!! Mine finally gave up on round 3 with pressure blisters, but just wrapped them in blister plasters and carried on!

Later on I found really lumpy feeling in gut, so planned walks after taking tablets to aid digestion.  It took about 2 months after completing chemo to drink a fizzy drink again without that feeling!!

Tummy often angry, but nothing unmanageable.

I had full capox, the infusion seemed to cause the bad side affects rather than cap tablets.

Good luck.x

Hi SomersetKLF,

Thanks so much for sharing your own chemo experience and for your helpful advice, will pass all of this onto my hubby. Much appreciated!

Chemo now starts on Tuesday, not tomorrow as originally planned (hospital had booked hubby into the wrong clinic! ) We’ll see how it goes. Fingers crossed!

Take care,

Love Roses x

Hi, I’ve just finished 6 rounds of 10 tablets a day as I was EMVI positive too. 
I was ok for the first 3 rounds and then fatigue set in a bit. At round 4 my feet blistered and then the skin peeled off so I would advise to moisturise hands and feet from the beginning. Best pedicure though! I was lucky that I only felt mild nausea occasionally and took an anti sickness tablet as needed which helped. 
keep a note of any side effects and report to your husbands team. Round 6 was a reduced dose for me because of hand/foot problems. 
I hope your husbands treatment goes well for him. 

Hi Jay Lee,

Thanks so much for your good wishes and for sharing your own experience. It’s wonderful that you’ve finished the chemo, must be a relief to have managed through the 6 cycles!

Will definitely keep an eye on hubby’s hands and feet and I’ve reminded him again that moisturising them from the very start is important. Karen already recommended a good moisturiser called Aveeno so I can look at buying that. And yes, we will keep a note of any side effects and report them to hubby’s team.

Wishing you all the very best with your own journey post chemo. Take care.

Love

Roses x