My mam started on capicitabine (prescribed 2000 mg morning and 2000 mg on a night)on boxing day, although she only took the 1000 mg on a morning and 1000 mg on a night as she was concerned about the side effects, she has had problems with the burning feet and had one night of diahorrea. She rang the hospital and they told her to stop taking them. She is seeing the onc next week, but im worried that because she was taking such a low dose that they wont continue with them and what else can she be offered ? Has anyone else had similar experiences or any advice on side effects?
I’m surprised that they advised her to stop taking it so soon. It does take a while to get used to the s/effects-and dosage restrctions really have to be discussed with the onc-she shouldn’t make this decision for herself. However as she only started taking them a few days ago, it won’t have made much difference-rather it’s ben like delaying starting treatmnet for a week, which isn’t likely to have had much impact. But please try and persuade her not to alter her meds in future without discussing it with her onc, otherwise she could cause herself problems.
I was on capecitabine for nearly a year and had sore feet and hands for most of the time - started on a higher dose (1800mg) but then reduced to 1000mg twice a day. Putting lots of cream on the feet to stop them drying out too much and cracking, blistering or peeling is really important. There are lots of creams people recommend - Udderly Smooth being one - but I actually found what worked best for me was putting lashings of ordinary aqueous cream on at night time and then cotton socks on top.
I also got diarrhoea at the end of the 2nd week for a few days each cycle and took immodium.
Hope that your mam can continue on capecitabine despite the side effects. There are lots of other chemos available though if need be - has she had any others?
I have been taking Capecitabine and had to reduce my dose quite a few times and that does seem to help with the side effects. At the moment I’m taking 500mg morning and night with hardly any side effects. Iam gradually starting to increase the dose and see how I get on because I think I can stand a higher dose now. I hope your mum can work something out to suit her. Best wishes, Gemini.
hi,
i started capecitabine 2 weeks ago, feel like side effects are increasing now, feel a bit sickly and feet and hands are definately drying, i am on 1000 night & day 8 tablets a day, hope you get sorted
love galen x
I must be one of the lucky ones, finished my 3rd cycle last week, and as yet, touch wood, have had no side effects really. My fingers bit tender, but had false nails put on mid November, and actually thing they are protecting the ends of my fingers.
I was ill xmas eve too, really felt sick and took lots of anti sick tablets, but then my daughter was ill boxing day and my little boy, and my best mates kids and hubby also same, so think it was a bug I had. Although didnt take my tablets on christmas eve and would have called hospital on christmas day if still same, but did feel better.
I am on 4000mg a day, 2000 in morning and 2000 in evening. I am creaming my feet as often as i can, prob every other night and hands at same time.
Got a scan anytime now to see how it working, so keeping everything crossed.
Take care and hope things improve for your mum and everyone else on this drug.
Thank you so much for your replies - my mam has been back to see the onc today and he doesnt feel she will tolerate any lower doses on Capicitabine, he is starting her on Navelbine next week.Has anyone had any experiences of this drug.
I feel angry that he never gave her the chance to have the lower dose and has switched her to something else.
Hi Claire,
I have only had 5 cycles of Navelbine(oral) but find it much easier to tolerate than previous chemos I have had. I got really sick from FEC & Taxotere. The main side effect for me is diahorrea but Immodium seems to do the trick.
I hope your mam feels better on the Navelbine.
Lisa x
Thank you again for sharing your experiences - Mam is due to see the onc this week, she is not sure whether to ask if she can try a lower dose of Capicitabine (maybe 500mg) before she tries the Navelbine. Its just so difficult knowing which treatments are going to work best for her.
Hi
Mam has started navelbine and so far hasnt had any bad side effects - am keeping everything crossed that this remains the case and it works.
This is such a supportive website and valued forum, although the factsheets are informative, i find that the forums have helped a great deal.
Thank you