Hi everyone,
I am writing for some advice on the side effects of Xeloda. My mum has bone mets and was recently diagnosed with liver mets. She started on Xeloda last Friday (10th April), and has had quite few side effects including diaherra (can’t spell that sorry!!), nausea, light-headedness, a “funny” tummy, burning feet, dizziness and generally feeling unwell. I was wondering what everyone else experiences and do they eventually ease off? I want her to have a reasonably good quality of life, and at the moment this is not the case. Any advice would be much appreciated! My mum is 62.
Thanks
Nicola x
Hi there, thought I would share my experiences. I too have bone and liver mets and started xeloda about eight weeks ago. I have got a lot of advice from this site and the bc pals site about coping with side effects of xeloda. Here are some suggestions:
Dry or burning or red hands and feet. I am taking vitamin B6 to help with this = 100 mg three times a day. There is a clinical trial going on at the moment to see if it works, so I decided, with the OK from my team at the Marsden, to do my own private trial. B6 is relatively inexpensive, available from the health food shops and I don’t think it will do any harm. I also keep them well moisturised - I rub cream of one sort or another into my hands and feet several times a day. Ones I like best are Udderly smooth, Neal’s Yard lavender and calendula body rub and a cream with Urea (can’t remember the name) that came from an Australian company. I have just ordered some emu oil, which came recommended by somebody else on this site. Apparently it is really easily absorbed. I have also heard that henna can help prevent problems with hands and feet - again there is a trial going on and I am thinking of finding somebody who might be able to do some pretty patterns on my palms, again in my own private trial. I also wear crocs most of the time - the nobbly bits on the soles help to massage in the cream I put on. Oh, and I try to avoid standing on my feet for too long or walking too far. I have noticed that if I walk for more than about half an hour my feet also start to burn.
Tummy problems - I find that I really do need to take my tablets within half an hour of food, otherwise I do get tummy problems. If I forget to take it after a meal, I will make myself a piece of toast and take them with that. I haven’t had any nausea so far, so can’t advise on that. I have Immodium available in case the tummy upsets get too bad.
I have also found that I have suffered from a dry mouth on this chemo, and have on each cycle developed cold sores. Don’t have much advice on this, but I intend asking my doctors at my next visit whether I should be taking an anti viral medication, like I did when I was on taxotere.
Hope this helps - would be very interested to hear other people’s hints and tips.
Deirdre
Hi Nicola
Like Deirdre, I also have bone & liver mets. and have been taking Xeloda since my mets dx in October 2003 – probably longer than anyone else you might hear from. Initially I had 2000mg x twice a day, then after developing the usual side effects (hand/foot/ digestive), my onc reduced the dose to 1000mg x twice a day. Nicola has given you all the best tips for coping with the side effects – the only other thing to say is that side effects are usually in direct porportion to the dose, with higher doses giving worse side effects. I wonder if your mum’s onc might reduce her dose slightly, to see if that helps with the side effects?
Xeloda has worked really well for me, initially reducing my (many) liver mets, and then keeping my liver stable for over five years, with no mets visible on ultra-sound scans for the last 12 months. Of course, we are all different in how our cancer affects us and how we respond to treatments, but I do hope your mum is able to tolerate Xeloda, and that it works well for her.
And hope it’s working well for you too, Deirdre!
Marilyn x
Hi Nicola, I hope your Mum’s side effects improve…I agree with all the great advice here…I’m coming up to a year of Xeloda treatments for my bone mets…I’ve had great results with this treatment I hope it works well for your Mum…xx
Hi Deirdre, Marilyn and Belinda,
Thanks so much for your advice. My mum is at the Oncology clinic tomorrow, and we will ask for her dose to be reduced. She is currently on 2150mgx2, and she is so unwell that she has decided not to take any more tonight after her dinner (she takes them directly after finishing her breakfast and dinner with a large glass of water), so it looks like the dose is too much for her. Apparently, they start you out on the highest dose available for your height/weight equation, so I’m hoping that they considerably reduce it tomorrow.
Thanks so much for your advice- its great to know that Xeloda works so well for you all
Thanks again
Nicola x