Mum starting capecitabine

Hi all

My mum has sbc. She has mets in her stomach, lymph nodes and two small nodules in her lungs (they aren’t sure 100% if it is in lungs but they’re assuming that’s what it is). She now has a stoma as the cancer was blocking her bowel. 

My mum originally had breast cancer in 2013 and it was er positive and her2 negative. The sbc is er neg, pr neg and her2 neg. Does this mean its now triple negative?

My mum is starting capecitabine on Thursday. She’s got eucerin cream so she can start moisturising now. Also going to order udderly cream and cotton gloves today.

Does anyone else have any suggestions and should mum start using a mild mouthwash incase her mouth gets sore?

Thank you xxx


How lucky your mum is to have such a caring and proactive daughter. The PPE doesn’t necessarily develop as far as one fears. I’m about to start cycle 17 and the worst I have had is fluorescent pink heels and palms and a little soreness at the side of some nails. My oncologist prescribes Eucerin UreaRepair cream which I use twice daily. A lot of people recommend Udderly so I guess your Mum can choose which suits her best but you don’t need both.  She does need to be on the alert for any skin splitting though.

As regards mouthwash, I found anything the hospital prescribed either too strong or too unpalatable. Cape does affect the lining of the mouth and does cause dryness so I have used from the start a gentle mouthwash my medical herbalist recommended. It’s simply an infusion of dried marigold (calendula) petals. You steep a tablespoon of the dried petals for 10 minutes and strain it (an infuser is useful). The liquid is enough mouthwash for the day and, if ulcers do appear, the soggy petals can be used as a compress. It feels a bit awkward but I found just a few minutes with this compress healed my ulcers and I’ve had none since. You can buy it online or from any health shop and there are no risks.

She may need moisturising eye drops, especially after sleep. Again, my oncologist prescribes them. Make sure she has something to prevent constipation and Buscopan for cramps. Cape can cause diarrhoea, especially in the early days, so the hospital will probably prescribe loperamide. Imodium melts are quicker to act. It’s trial and error to get the balance she needs for controlling the diarrhoea but not getting constipated. I still haven’t quite cracked it! Cape works best on a full stomach so eating a little before taking the pills, then eating something with the pills protects the stomach best. If they also prescribe an anti-emetic, it’s worth using this as a preventative medication, rather that waiting till there is sickness. I’ve never felt sick (most people don’t) but I did take anti-emetics as a precaution in the first month. 

The only other thing I can think of is fatigue. It’s not tiredness. It goes way beyond that and, in the early days, your mum may have days when the most she can do is use the bathroom. It does get better as your body gets used to the drug. By cycle 5, I was fine but for fatigue and PN (which I already had and cape made worse). After that, you more or less know what to expect when.

The week off isn’t a week off. There may be no tablets to take but the cape’s in the system and still working. By the end of the week, she may be feeling fine but that’s when she has to go to hospital, have her bloods done for the next dose and see the consultant. If the three weeks have been hard, report every little side effect. They always start you on the highest dose for your height/weight which means they can safely reduce the dose. It’s surprising what a difference just a small reduction can make.

Do make sure your mum has an accurate thermometer. My oncologist believes that some patients think that, because it’s ‘just tablets’, they underestimate cape. It’s still chemo and it is still powerful and we still have to take the usual precautions. The other thing I would advise (and this is no reflection on you - or my husband) is to allow your mum to take control of most of this (my husband is i/c the pills and accompanying food so he feels involved). She will know what her body is doing and what she needs when.

I do hope your mum gets good results. It worked remarkably quickly for me and it’s still kind of working. All the best to you both,

Jan (the verbose one!)