Yucky capecitabine side effects - anyone else?

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Hi all,

Towards the end of cycle 2 of capecitabine, I started feeling very nauseous and extremely sleepy, with vomiting. They've paused the meds in cycle 3 so I can finish a course of antibiotics and then start up again with double anti-nausea meds (domperidone and ondansetron). I have never felt so dreadful in all my life (not even when I was on IV chemo). Has anyone else experienced these side effects and how did you cope with them? The oncologist is unwilling to reduce the dose of capecitabine (currently on highest dose) but rather try and control the side effects. I can barely eat and have lost 4kg in a week (I could afford to but not for much longer!) 

Any experiences you can share gratefully received.

  • Hi  

    I didn't have capecitabine as part of my treatment for TNBC but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    You might also want to post this in the main breast cancer group to throw it open to a wider number of people.

    I do hope your hospital team are able to get your side effects under control soon.

    ((hugs))

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi Emmy, I do hope you have been successful in completing all your cycles now.

    I wonder if I can ask whether the domperidone and ondansetron were effective for you in combating the nausea? My partner has tried 2 other antiemtics with the Odansetron and still feels incredibly bad although he has been fortunate not to vomit yet, however he has only managed to have museli breakfast for the last 3 days and little fluid - 4kg is a lot and hope you managed to find a solution to support you best. 

  • Hi I have only been taking for a week. I am feeling tired but not sure if it’s the stress of it coming back ! 
    I see you had Iv before (me too ). It’s come back in my neck lymph nodes and just had results from my first ever  pet scan and it’s also in my breast bone and 2 ribs. I have been so positive all through this journey but I am struggling a bit now 

  • Hiya Slight smile The domperidone and ondansetron were successful to an extent. They didn't completely relieve the nausea but I was able to eat a little. I'm usually a big water drinker but water made me feel awful, bizarrely. Maybe sipping on hot water with ginger in it might help your partner? Good for the chillly days! I do hope he starts to feel better soon. xAlso...I just remembered that at my very worst, I had blood tests and they found I was magnesium deficient. This was making me feel so so sick and once I'd taken a few sachets of magnesium (prescribed) I felt waaaay better. I think the drugs can do this to you so perhaps worth double checking although I'm pretty sure they would routinely test for this every three weeks or so anyway x

  • I'm sorry to hear this. I can totally appreciate that you are struggling. Do you have a good support network around you who you can offload to? I signed up for counselling with my local centre and even though I was adamant I didn't need it, I am glad I did it and it did help me process everything even if I wasn't aware at the time. Give yourself some small things to look forward to - you deserve it! I definitely find that I dip at times but a good catch up with a friend or a fun treat can really perk me up. Sending heaps of positive vibes your way Hugging