Experiences with capecitabine?

Hi. I had a bowel resection in July last year followed by chemotherapy. My original chemotherapy regime included Capecitabine and Oxaliplatin - this being my oncologist”s standard treatment. In my case the issue was around the number of cycles as data shows that beyond four cycles survival rate only increases by 2.5%. However, almost immediately after taking the Capecitabine I started to get severe chest pains. Testing showed I had an allergic reaction to the drug, which could have led to a heart attack. I would stress the odds of this happening are tens and possibly hundreds of thousands to one.

My drug regime was changed but over time the Oxaliplatin caused severe neuropathy in my fingers which is now permanent. I finished my chemotherapy on a single drug regime rather abruptly in December 2022. My profile tells my cancer story in more detail.

Unfortunately, my cancer has returned but in hindsight I’m not sure it every went away - see My Profile for further details - so, in my case, I don”t think the choice of chemotherapy drug and change in regime was a significant factor in the cancer returning and now being incurable.

Whilst my personal experience of Capecitabine was not good it is my oncologist’s first choice, along with Oxaliplatin for post-op chemotherapy for bowel cancer, so might be worth considering for your own treatment.

Kind regards.

Maninbath

Thank you Maninbath for your insights.  I am so sorry to read about your situation outlined in your profile.

Hi. Capecitabine on its own is generally a lot more tolerable than when given with oxaliplatin. You might like to have a look at a similar post from a couple of days ago?

 Capecitabine Tablets 

Hope this helps

Take care

Karen x

Hi Capt Pugwash loving the user name! I’m currently taking capecitabine and have been since the end of May. I initially had two infusions of oxaliplatin, but tablets only since 19 July. I haven’t suffered any noticeable side effects. I’m fit and healthy, apart from the cancer of course! I recently read the leaflet about what to expect and am glad I didn’t read it earlier. I’m hoping for a good response to them as my options are limited. I’m 59 and was given just 6-12 months if I did nothing, so a “no brainer” for me. I wish you luck in whatever decision you make.

Hello Jools63, my user name rather gives my (our!) age away I suspect!   I hope the chemotherapy improves materially the "do nothing" prognosis for you.  Many thanks for sharing your experience with capecitabine.  The "what to expect! side effects leaflet is quite worrying, particularly the heart impact (as I already have sinus bradycardia and a loop recorder implant pending probable pacemaker so that was quite a concerning risk!).  I'm slightly leaning towards not taking it but have until 21st to finally decide and am off to have a chat with my assigned specialist nurse today about that and ongoing issues post my right hemi colectomy. Thanks for your note again.  Best wishes for your treatment improving the prognosis for you.  

I hope you have enough information to make a decision. I must admit that the mention of possible side effects related to the heart did and does worry me. A couple of times I’ve had palpitation type experiences. Good luck in whatever you decide. Thanks for your well wishes. I’ve just completed a skydive on behalf of Macmillan!

Well done on the skydive!  Amazing!  Yes I feel I have all the information needed and will run through it with my oncologist but am 99% decided to not proceed with chemo (am truly recognise how lucky I am to have that decision point in the first place!).

Hi Capt Pugwash My husband had right side hemicolectomy in January spread into 8 lymph nodes he was to have 6 months of mop up chemo Capecitabine and Oxaliplatin but after a week suffered chest pains turned out Chemo was effecting the heart which would have given heart attack age 59 the onclogist said couldn't offer another drug but as it was a small percent anyway of killing any cancer cells we just watch and wait we felt even a small percent would have helped by doing nothing now it feels scary not knowing if it would have made a difference if the cancer returns will know with bloods and yearly test it's a difficult one because we are all different only you can decide

Hello Jkee, I am very sorry to hear about your husband's situation.  It must have been very worrying when the chest pains started.  I'm very sorry that no other drug is viable and that the decision was effectively taken for you.  I've been very lucky and it has not yet spread to my lymph nodes but I do have extra mural vascular invasion which is why the chemo option was raised.  I already have a heart condition which is why I am being extra cautious over the side effect risk.  Thank you for sharing your husband's situation and my sincere best wishes for no recurrence for him.

Hi Jkee. When I had heart issues with Capecitabine my care team replaced it with Raltitrexed - might be worth asking if this is an option for your husband. But it did give me diarrhoea for much of the time I was on it. My cancer is back after a year so in the end the chemo didn’t make a difference  but I had 22 affected lymph nodes along with some of the associated blood vessels, so not completely unexpected. However, agree that some treatment has to be better than no treatment.

Wishing you and hubby all the best.

Maninbath