Capecitabine

Hi Jimmy,

I was told that I could have a maximum of 8 rounds of CAPOX (essentially 2x4 treatments) but that the second four only increased the odds in my favour by 2.5%. As it turned out I am allergic to Capecitabine and the resulting changes to my chemotherapy were pretty tough on me: in the end I managed six rounds of chemotherapy.

Despite a bowel resection and the post-op chemotherapy my cancer was back in year but I wouldn’t have done anything different re treatment. Although, now the cancer is incurable I am definitely focused on quality of life. I had the option of some radiotherapy earlier in the year but would have been dealing with the side-effects whilst on a long awaited cruise, so stuck with the watch and wait approach.

Hope this is of some help with your decision-making process.

All the best.

Maninbath (Tom)

Hi Sub I’m usually a great advocate of throwing everything you can at the cancer but also of giving it a try and stopping if it’s too much. Looking at the fact that you had clear margins and no lymph nodes affected and had already had 4 lots of chemo prior to surgery then I agree that you’ve given it a good shot. Neuropathy has a habit of getting worse even after stopping treatment and I still have numb feet 7 years down the line.

I totally agree with your thoughts of stopping the capecitabine and enjoying your life without battling through, feeling lousy and potentially causing future issues with your feet. 

Just my opinion but hope it helps

Take care

Karen x

Hi Sub 

My  mum never had post op treatment and I do wonder if this part come under the “art “ part of medicine where their expertise with their experience comes into place . My mum’s oncologist prefer to treat visible disease in her but saying that she has four recurrences so nothing is straightforward.

However I was wondering if there was a half way house . My mum had a dose reduction and that really helped . But if you decide to stop remember you have in fact thrown 25% of treatment at it so not nothing .

These decisions are so incredibly difficult and complex so I hope you get a good chat with your team . 
take care ,

Court 

Hello I'm on 2nd cycle of capacitibine. I agonised on chemo and decided not to have capox due to fears of the oxiplatin side effects.I started on 4x 500mg twice a day and after 10 days had huge blisters and couldn't walk.My dose has been reduced by 500 mg a day and so far I'm.doimg better but I do wonder if its worth it as efficacy will also be reduced.Im tired and I hate having to eat so early in the day but otherwise its currently manageable. As soon as its not I will stop.The percentages are baffling and I think it's a huge unknown. Do what is right for you  you've had the gold standard 4 cycles of capox  so no wonder further chemo is having an impact.

For context I was diagnosed stage 3 with lymth node and vascular invasion following bowel resection Jan this year .Good luck.

Thanks for the reply . I’m in 5 x 500g twice a day to make up for the fact I’m not having the drip once a cycle like I did the first time . I’m ending the first cycle so I will see what the weeks rest is like and speak to my oncologist next week . 

I’m similar with the feet - almost painful to walk (like loads of stones in my shoe feeling!) plus I had chest pains (which I didn’t have the first time ) my heart is healthy and all the ECGs and blood pressure type stuff has always been good so I’m worried about damaging my heart too . 

I think I will try and get the amount reduced for next cycle and see what happens then make a decision from there .

Thanks Court . As always a great sounding board . It’s also frustration on my part . I’ve done everything I’ve been asked to do , had the radiotherapy, chemotherapy 2 major surgeries and the surgeons done an excellent job removing everything to make me cancer clear . I just need that motivation I had before to push through the side affects . 

probably look at reducing amount for next cycle and see how it goes and if I can manage I will continue and if not I’ll stop . 

jim