Capecitabine side effect..

Hi All,

i have been on 4g daily of capecitabine for almost a month now.

A couple of days after starting the drug I found that when I try to walk my dog morethan about 400 m I become very uncomfortable in my throat and chest which goes off once I stop walking.

its quite predictable and when I had my first week off the drug it disappeared and I could walk as far as I want to- easily 4 k.

My doctor couldnt explain it.

I am now restricting my activity when I am taking it but its frustrating as getting out for a good walk was keeping me sane.

Has anyone else had similiar?

TIA

  • Hello GypsyCaravan,

                                       firstly let me wish you well on your journey to recovery,which fom experience l know will be a challenge to be met head on.

                                                                 Yes l can relate to the symptoms you describe,and its important to distinguish that they are not a warning sign of infection caused by the lowering of the white blood cell count  by the drugs action.

                                    This said l found it to have a most destructive effect upon my body and although l am intolerant of drugs at the best of times,this was in a completely different league. The complete and utter exhaustion l experienced was only matched matched by my stubborn determination to keep driving forward inherited from my Mum.

    Perversely l embraced its damaging effects,taking satisfaction in the fact that if it was giving my body such a hard time,then my little unwelcome invader was going through the same hell, having to work harder than he could have ever imagined for any sort of a victory.Daily routine was to keep going forward until l dropped,rest, recover, and do it over again, denying any slack to be taken advantage of, and oh how !, l imagined did it ever regret choosing me.

    l had an intial six weeks of capcetabine with radiotherapy pre surgery in which l worked voluntary on a farm for 5 hours daily to keep me sane,since l live offshore and had to have residence on a mainland hospital.By the time l had my treatment at 3.30 it was all l could do to trudge 600 metres to my room

     l followed that with six 3 week rounds of capecetabine and oxipilatin infusion, which left me with neuropathy of hands (slight now) and feet (still painful ,and although l would have not wished for this, it seems like that was a fair price to pay to see off a viscious invader and get to appreciate a life well lived once again.

    These drugs have tremendous firepower to repel a truly dangerous and uncompromising opponent, so some collateral damage is to be expected,but l firmly believe that they are merely the ammunition,and it is the person that wields the weapon that directs it.

                                                                                      Be sure to have a good aim and send your unwelcome visitor packing,

                                                 David

  • thank you for your reply and i hope that you are ok now.

    Like you I dohave other side effects but this one is themost debilitating but its wierd that for me it starts about 36 h back on treatment and goes away by 24 h after my last dose at the end of the two week cycle.

    i am intersted that you worked on a farm during your treatment.i have asmallholding and do go there mostdays. I can manage towalk round it once before that wierd feeling kicks in which is so hard to describe.

    If i know it will settle down once I finish in about 5 months time then Ithink I will manage.

    Did youhave to take special precautions with your farm work.?

    BW

    Diane

  • Hello Diane,

                        l am fine now ,thank you for asking,as it has now been 7 years since diagnosis. The side effects should go in 98% of people when you finish your course.As well as working on a farm whilst away at treatment,l was back home at weekends,where we have a croft with sheep, cattle and clydesdales, so l could keep up with homework..l never took any precautions other than taking account l was reacting and moving more slowly than normal, so planned and worked accordingly. Certainly l was at most risk from catching something with a reduced immune system from people than by working with animals in isolated surroundings.l also had a liver resection so had to remember to stop lifting heavy weights,but never quite seemed to get the idea,so resorted to wearing a support belt as an insurance against any damage

                                                        l think you are doing all the right things with activity and doing the things you enjoy,it helps immensely with a positive outlook.We have not got a caravan but do have a three seat training buggy, so our project for this year is to train our youngest to harness.Not sure if he has outgrown our cart,since he is 19 hands and filling out fast.

                                                                           Take care and keep moving forwards,

                                                                                                                                          David

     

  • Thanks David,

    we have 4 horses all broken to drive- a gypsy cob, a fell, a standardanda mini shetland, sheep and goats.

    intersting that you still did stuff- i am but wearing gloves.

    I too had a liver resection 10 weeks ago. Thought i would never ride again but hopefully when I finish the chemo.

    My other half is a farrier and hit throat cancer so had a laryngectomy.

    he still rides most days.

    I think animals help us and i feel up,ifted by your email.

    Thank you

    Diane