Is adjuvant chemo really worth it?

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Hello everyone, I'm new here and 58 years old.

I am 8 weeks on from a right hemicolectomy for a tumour in my caecum. They took 34cm of bowel and 18 lymph nodes. My cancer was stage 2 and the tumour grade was T3N0M0. I hoped not to have chemo but there was EMVI so I have been recommended to have 6 months of capecitabine tablets (2 weeks on, 1 week off). It's nearly 4 weeks since I saw the oncologist but haven't seen anyone since, and having originally agreed to the chemo I now have big doubts. I am concerned not only about immediate side effects but also late ones which I feel weren't really explained well. Does anyone have any thoughts on whether going through adjuvant chemotherapy is actually worth it? There seems to be a very small benefit to it (I've been told 2-3%) and I'm just not sure.

I teach in year 3 and 4 (ages 7-8) so I'm very unsure about whether or not I will be able to work. Also has anyone got anything to say about 3 months v 6 months of treatment? 

My bowel movements are usually pretty good considering what's gone on but I do still get random attacks of diarrhoea with no apparent cause. I'm still following a low fibre pretty plain diet but how long should I expect that to go on for?

I hope someone has got some advice!

Thank you

  • I should also add that I have coeliac disease as well!

  • Hi,  , mine was rectal, same diagnosis but was regarded as stage 3 with the vascular invasion. My adjuvant chemo bumped it up by 5% and I was offered 30 weeks 5FU/FA by IV which actually took 34 weeks. I could work throughout with some adjustments as you get tired as it goes on. Part of my work was as DT technician in a high school, which I did throughout, swopping the day around to help. Perhaps try the chemo? If you hate it, then you've tried. Perhaps stop when school resumes in September? Any chemo may be worth more than none, but the benefits are much greater for rectal , where the V1 has a greater risk. Take care.

  • Hi. You’ve had great advice from Gemmary. I had a low dose of capecitabine alongside my radiotherapy and found it ok although my feet started to feel like I was walking on sand towards the end so keep an eye on them and keep hands and feet well moisturised. Is it worth doing? A friend advised me to throw everything I could at my cancer so I did! Whatever you decide it has to be a decision that you are happy with and would have no regrets if anything was to crop up in the future. As Gemmary suggests you could give it a try and, if you don’t feel that you are tolerating it well, then it would be your decision to stop.

    I would give your bowels perhaps another month to settle down? It’s worth keeping a food diary to see if certain foods are triggering the random diarrhoea. I’m eating a lot of salad at the minute but taking a loperamide before my tea as I know that salad can go through me pretty quickly. Once you have had some bowel removed then the transit time of the stool is lessened so there is less time for liquid to be removed from it.

    Hope this helps

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Exbvc,

    my husband was diagnosed with stage 3 bowel cancer, he had 4 months of chemo, he ended up in hospital for 16 days with diarrhoea, but he has DPD, a gene which is not working properly, so the dose of the capox was too high for his body. Anyway froM the beginning we read to avoid anything dairy he went onto soya milk and vegan chocolate, which really helped, even his oncologist said it’s good to stay of dairy. He has had his bowel surgery but now alternates dairy and soya. 

    he got through the chemo just really tired. Plenty of rest but still try and do a little walking if you can.

    hope your chemo goes well whatever you decide to do.

    Take care

    Sandra

  • Hi Exbvc

    I had surgery for colorectal cancer in November 2021 and was graded T3N2M0 with EMVI positive.

    I was offered 12 cycles of FOLFOX chemo over 6 months as a ‘precaution’ to minimise the risk of recurrance. I decided to undergo the chemo based on the fact that I had done everything I could to prevent the cancer coming back. 
    My chemo journey was not without its challenges and 12 months after completion I still live with peripheral neuropathy in my hands and feet (uncomfortable but bearable).

    Whether to go with the offer of chemo is your choice and you can call a halt to treatment at any time. I have no regrets in taking the route offered.

  • I’ve just had 2/4 cycles of oxaliplatin alongside capecitabine tablets. Both have now been withdrawn due to the severity of side effects I experienced. I’m seeing my oncologist next week to find out what happens next. My treatment is for secondary spread to the liver, which has spread since having a liver resection. The decision must be yours. I have decided that quality of life will be a massive consideration in agreeing to any further treatment. I wish you luck with whatever you decide. 

  • Hi Exbvc

    I suspect your quandery is indeed quite common. But maybe not easy to answer as each of our cases are so individual.

    What I would suggest is going back to your oncologist and revisiting your personal medical, beliefs and quality of life situation, to understand the pros and cons.

    My decision may have been easier than your as I had a significant double figure % gain being offered in prognosis. Only time will tell whether I get to reap the rewards.

    For some of us, chemo can be challenging with tough side effects. If you do choose to go ahead, my best advice for once you start is to review side effects swiftly, openly and honestly with your oncologist and CSN. I think my stiff upper limit may have given me a longer and tougher journey that if I'd asked for more help earlier.

    As for low fibre diet - how about you gently test out small introduction of other foods and let your body dictate what it is ready to handle at this stage?

  • Hi   

    Everyones journey is different and once you decide, you need to have the right mind set. Dig deep and push on through.

    i had an extended right  hemicolectomy in 2021 at aged 58, exact same staging as you but IMVI.

    They recommended the same chemo regimen as you. I managed 4 days of the tablets ( how pathetic was that??) and had to give up due to continuous nausea. They moved me onto the same protocol as   (30 weeks 5FU/FA) which is the I/V version  of the capecetabine tabs.  31 weeks later done ( whilst working all through). they lowered my dose to about 85% due to my liver enzymes not playing ball but i am now one year post chemo and definitely no lasting side effects.  You might feel very blurrrr during treatment,  but dont compare your regime with oxaliplatin, folfox etc etc they are a different ball game side effects wise.

    Discuss with your oncologist but never underestimate the 2,3,4,5% advantage the chemo will give you.

  • Hi  

    I was wondering how you decided to progress and how you are getting on?

  • Hello!

    well I decided to go ahead as I didn’t want to have any regrets further down the line. I had 2 cycles of 2500mg twice a day which I found pretty tough and I ended up in A&E with horrific diarrhoea. The dose was reduced to 2000mg for a further 2 cycles which was ok but I got very nasty palmar plantar syndrome so it was reduced again to 1500mg for the final 4 cycles. All done now, so hopefully it’s onwards and upwards.

    Thank you for asking! Hope you are doing well.