Starting capecitabine soon, Tablet form only, for 6 months. What's your experience with this drug been like? Would love to hear!

Hi all, I had a call with my oncologist this morning, following a successful operation to remove a sigmoid tumour (anterior resection) 11th Jan.

Oncologist has stated I will be placed on a 2 a day tablet form of capecitabine, 2 weeks of this dosage, followed by 1 week off, for a total of 6 months.

It is slightly longer time period than I expected but I will definitely be going for it and am looking forward to getting started. I would love to hear your experiences of this drug in relation to side effects etc and how you were able to cope on a daily basis in regards to work/ daily tasks as well.

I am a healthy 46 year old female with 2 young boys age 13 and 8. Have always been healthy and was shocked to receive my diagnosis on Xmas eve last year. I feel almost completely recovered from my operation and have been managing cooking, light house cleaning and a daily outdoor walk most days. Bowel movements pretty much back to normal and my appetite is high, although I still manage to stick to 'small portions' rule :). I was lucky to not need a stoma following the operation. 

Looking forward to your feedback on your personal experiences with capecitabine. Take care and all the best. 

  • Hi Rose

    sorry to hear about your diagnosis and so close to Christmas too! I got my diagnosis in October and had a right hemicolectomy on 3rd November.  I recovered very quickly from the op thankfully but it seems the cancer had metastasised to my peritoneum. I am currently on chemotherapy I(started on Christmas Eve) I.V. Oxaliplatin followed by 15 days of Capecitabine twice daily. Most of the side effects I have had are in relation to the Oxaliplatin which are very unpleasant, the tablets  don’t seem to be a problem.  My advice would be to drink plenty of water.

    good luck 

  • Just taking oral Capecitabine Tabs.is far different to having them combined with Oxyplatin Infusions.The latter tends to cause far more side effects.

    Best

    Marianne

  • Yes that is what I am taking oxaliplatin infusion followed by capacitabine fir 15 days twice a day (10 tabs per day)then a week off and start again I’m just about to start 4th cycle ) the peripheral neuropathy is due to oxaliplatin . Obviously the side effects are different in severity for each person 

    Debra

  • Thanks for the info its good to hear from different perspectives. 

    All the best. 

  • My experience mirrors you - was advised to have 4 cycles of capecitabine as a mop up exercise post rectal session. I have a ilesostomie. iFirst one went well. I was expecting to sail through it as am healthy and fit. 8 days in the 2nd cycle problems started. My ileostomie got upper active and the stoma nurses had nor warned me of this so did not pay too much attention. In the last 7 weeks I have collapsed in the street, had to go to hospital 4 times to be put on a drip all day (as did not want to be admitted as covid safety not great in there), have had very low energy - sleeping 12 hours a night and cannot stay awake for more than 2 hours; now been diagnosed with mucosostis whch is basically Thrush in the lining of my stomach and anemia - I am now on 40 pills a day and still having problems. My chemo has been postponed twice and likely to be postponed again next week. I am seriously considering stopping it,

    I feel that my life and health has been destroyed by this - onco says no rhyme or reason why some people react like this and others sail through it - do not want to make you fearful but thought to warn you. A good stoma nurse would have helped avert the worse of this maybe but mine was charming but in a privatised service and had very little knowledge.

     

  • Hi, I am 50 and like yourself have a pretty healthy lifestyle. I have just started Capecitabine along with Oxaliplatin today so not sure yet of how it will go. My scan results weren't great. Cancer growing in lymph nodes in abdominal area. The oncologist told me that it (this Capox treatment) has a good success rate. I had a right hemicholectomy in July and have finished 12 cycles of Cetuxamib, Fluorouracil and Irinotecan. Hopefully I'll be able to keep you informed on how the Capecitabine is going. Take care.

    Steak 

  • Thanks for your response, hope you are feeling better. It is so true that having a good support team of nurses and doctors makes such a difference. 

    Sending you best wishes for your recovery 

  • Thanks . 

    Wishing you all the best for a good recovery and would love to hear how you get on over the next few months.

    Take care, best wishes.