Capecitabine and my experience and side effects (Started May 2020 - finished June 2021 on reduced dosage)

Everyone is different and I can only tell you of the side effects that affected me. I was on this drug for several months and my cancer remained stable. I had to come off it due to nerve pain in my feet which has eased a huge amount over the last 10 weeks since I stopped the Capecitabine. It made me tired and I would take an anti sickness tablet daily for nausea. Also found taking the drug with natural / organic yogurt (as when I first started taking the drug I made a mistake by holding the tablet between my lips and ended up with a blister) so I would advise to take the drug with something making sure you do not hold the tablet in the mouth for any length of time. Drink plenty of fluids I found if I did not do this I will feel quite ill I took the drug straight after breakfast and then again in the evening after my dinner then have a yogurt straight away I found this settled the tablets. If you get any mouth ulcers the best thing I found was banana and honey if you do not like to eat this mash it and wipe it around the mouth so this became a daily routine too. I also used Gengigel and still do when my mouth or tongue is sore it is expensive you can buy it over the counter at Boots or  Lyodds pharmacy but it lasts a while if you use it sparingly. I have tried loads of things and this is what worked for me. In the beginning I was informed to look after my hands and feet as the drug effects the nerve endings in the extremities - my fingers would swell and you can loose dexterity - picking up tablets, trying to open milk cartons, pull cans, opening jars etc can become frustrating. I wore rubber gloves when I was washing up, peeling vegetables and when doing anything in the garden even making the bed as the friction aggravated the skin surface. I used Garnier Intensive hand cream as I found that worked best for me after every wash. The feet were another problem and affected me more than the hands. I bathed them in cool water with coconut oil twice a day. I used a daily moisturiser on them twice a day. I found Nivea cream very good. I bought some cotton sock liners and found the fur lined crocs one of the best shoes to wear as they were light and had shape to them. I also put a pillow in the bottom of the bed to keep the feet raised at night as I found this helped. During the day I would put them up regulary, sit when ironing, when doing vegetables or baking. Walking was okay but standing for just a short time in queues or chatting to people the feet would become very painful especially around the arch I would often use a cool gel pad on them from the fridge whilst sitting in a chair with them raised watching tv. Any stimulation aggravates and remember to report any pain in the feet or hands to your Macmillan nurse as the damage can become permanent so it is important to monitor it. I found routine has been paramount keeping regular meal times but found garlic (in any form) spicy foods like chilli or curry I could not tolerate whilst on the drugs. I also found bacon and bisto gravy was a no go as these all upset my stomach. I hope this helps, as I say it was a lot of trial and error. I did see a dietitian as I found this really helpful and discussing with my Macmillan nurse when was the best times to take my medications was really helpful. Not all the same drugs like the anti sickness drugs suit everyone and you will probably be given one that suits most people. Keep a diary it can all become very confusing and I made notes of drugs I had tried that did not suit me. It can take a little while to adjust but remain positive and Good luck. 

Miss Bee 

  • Hi I just dropped by from a different group and noticed you'd not had a reply to your very useful and informative post.

    As Capecitabine is used to treat so many types of cancer have you thought of posting this in the Cancer treatment forum ? Other members feeling their way through the minefield of cancer treatments will find information such as this invaluable.

    Thank you for sharing, B xx

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