I’m really struggling with capecitabine. I’m devastated as the oncologist said it would be easy. I’ve already had almost a year of TN treatment and I haven’t much strength left (emotionally). My hands and feet have peeled many layers, and I’ve had severe diarrhoea. I actually pooed myself in Tesco yesterday - the third time I pooed myself last week. I wonder if I should start wearing nappies. I’ve only had 2 cycles of cape, and was taken off it half way through the third cycle due to side effects. That was a month ago, and I am still suffering with peeling skin, diarrhoea and incontinence. The oncologist said the toilet issues cannot be cape because I’ve been off it for a month. But I’m 45 and I’ve never pooed myself in my life! I keep calling the hospital for advice, but I just get told it’s not the capecitabine, to take the immodium max dose and to keep a bland diet so I’m only eating crumpets and potatoes. Life is miserable. Has anyone else had this and recovered? Thank you (this is my first post…! I’m TN S3, and have had 6 months of IV chemo last year, and surgery already).
Hello
This is from the cancer research website re capecitbane. Clearly states diarrhea as a side effect.
I’ve had diarrhea from my chemo too (different type) and I’ve still got it 5 months after chemo ended. My GP says it could last a long time yet.
Have you spoken to your GP about it?
Pooed yourself in Tesco? I had an accident whilst out shopping too. Mine was in Lidl!
Hope it resolves for you soon.
Big hug
Xx
Oh no! Gosh that sounds terrible. I had no idea it could last for 5 months after chemo. I’m so sorry and I hope it resolves for you soon. You sound like you are coping well? Are you wearing nappies? The GP and oncologist have not been terribly helpful. Oncologist said it’s not the chemotherapy and to take Imodium, anti-sickness tabs and eat bland diet of bread and potatoes. The GP wants more poo samples (the last lot didn’t get tested due to wrong forms). That it could last so long makes me even more worried - I finished my last chemo with a an assortment of life limiting of side effects (and only limited support from Drs) and don’t think I can cope with anymore to add to the list. I wonder whether I should have even started this journey. I don’t know how I’ll do my job in nappies. I just want to give up 
Well mine was a different type of chemo so it may be very different for you - so don’t panic yet!
No need for nappies 
but I do always have baby wipes and spare knickers in my bag just in case. I have realised that acidic things eg orange juice and tomatoes make it worse. Oddly curry does not!
Sometimes but rarely chemo can make you develop intolerance to certain foods.
I really can’t understand why your oncologist is saying it can’t be the meds when it’s clearly documented that they cause diarrhea.
My GP said she will refer me to gastroenterology if it is still happening in 3 months time.
Have you tried Kefir yoghurt? Its live cultures help replace the healthy bacteria in your gut and restore balance in your digestive system. Worth a try. Also my oncologist suggested psyllium husks to slow down diarrhea (but just check with your specialist before taking it).
I think both have eased the explosiveness for me even though I’m still “loose” all the time.
I hope it stops soon as I’m spending a fortune on loo roll.
I’m sorry you have developed serious side effects. I have some but nothing that I can say is life limiting. Had a heart check this week as had some strange palpitations and oncology said need to check it out. Waiting for results.
Big hug xx
That’s really helpful - thank you. I was thinking of carrying wet wipes and spare pants - great idea (better than nappies, although depends on amount ;-)!! I think I was told to not have bio cultures until after chemo but I will check. I’ll have to look up the husks! So far I’ve worked out fruit is my worse (just 5 blueberries set me off for an entire day on the loo!). I had half a Thai curry a week ago and was fine. Maybe I need to stop feeling sorry for myself and write a food diary. I’m just so overhwhelmed by all the side effects I’ve no motivation and just want to give up.
Good luck with the tests for your heart, I really hope they are all clear. And thank you for the advice Xxx
@bonnie4
Please don’t give up on yourself.
Sounds to me like you could benefit from some form of counselling so you can express how you are feeling. Have you asked what is available at your hospital? Also the nurses and volunteers at BReast cancer now might be able to offer some support.
Have you heard of the penny brohn centre in Bristol? If not, have a look at their website. They will be able to assist with issues around diarrhea and mental health and overall wellbeing.
Big hug xx
@bonnie4
P.s. yes you are right - you shouldn’t have live cultures until your oncologist says that it’s ok to do so. Xx
Hi Bonnie,
I had severe diarrhoea on Capecitabine.
I was told by my oncologist that I could take up to 16 loperamide per day - on the packet it said up to 8 - but please check with your team as to how many you can take.
My issues cleared up gradually after I stopped the cape, but it was probably only 2-3 weeks and I noticed a difference quite quickly in that it felt more manageable.
You could try calling the Breast Cancer Now nurses, the number is 0808 800 6000 and they might be able to give you some good advice.
I can understand your frustration in not feeling listened to, it really does affect day to day life when it’s that severe. I really feel for you. I hope it gets better soon for you.
Lisa x
Thanks Lisa, the team said I can have 8 tablets so it’s good to know I could double up. They’ve not mentioned that. I was rejected for chemo again today due to my tummy issues. Did you change/limit your diet to cope? And were you allowed all the capecitabine cycles (I’ve only had 2 and need 8)? If it was temporary I’d feel better, but I’ve other side effects from my last chemo (8 months ago) that cause me daily pain, and my life is such a mess, so I have just lost faith in the whole process.
Hi Bonnie,
I couldn’t eat anything with chilli, even just a tiny bit would have a drastic effect, and I couldn’t have too much tomato e.g. definitely not tomato soup. No dried fruit either.
I had 6 x 3 week cycles in total I think, but I have secondary breast cancer so I came off it when it stopped working. I’m on Trodelvy now, which is harder in many ways but hardly any stomach issues; capecitabine has been the only chemo to have that bad of an effect for me.
Lisa x
I’m so sorry you are suffering so much from this and your previous chemo. I really hope things improve for you soon x