Neuropathy as a side effect of Irinotecan

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Hi, my mum has just completed her 3rd cycle of i-cap and is experiencing really bad neuropathy in her feet. This is really getting her down as she enjoys going on walks but this is affecting her ability do so.

She says it alternates between feeling numb to feeling like shes walking on glass.

We were told the main side effects of irinotecan are mainly gastro related. However last year my mum underwent 6 cycles of capox, and we were told the oxaliplatin causes neuropathy. Once my mum completed the capox , she had some pins and needles but nothing too bad, however now shes started on the new regime she says its worsened.

Sorry this has turned ibto a bit of a ramble but I just wondered if anyone has any advice to help ease it please x

Kareno62 23 days ago

Hi cjb.0809 It’s worth mentioning to her team as reducing her dosage may help? Unfortunately neuropathy can often get worse after stopping chemo and can also have a long lasting effect. I’ve attached a link below that may help and you could also type neuropathy in the search box at the top of the screen to see previous posts

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/new-here-say-hello/246538/managing-peripheral-neuropathy

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

ChrisVLC 23 days ago

Hi, I’ve on the last day of round 5 of 8 CAPOX, fortunately with minor side effects ( so far).

I was on 8000mgs daily of cap tablets, but due to very painful sore feet on days 13 and 14 of tabs on each of round 1 and 2 the dose was reduced to 6000mgs daily. So reduction in dose may help.

What helped me was soaking my feet in cold water several times a day, and copious applications of a good moisturiser.

i know that the general advice ( which I agree with) is to avoid Dr Google, I’ll post information about why soaking in cold water helps into my profile, and you can choose to look at it or not.

BradleyJ 7 days ago

My mum has recently finished treatment and suffering too with this she walks very unsteady and gets her emotional as too now treatment is finished wants to get back to her normal.

she uses a stick for support and after standing from sitting takes a min before setting off

Rosie13 6 days ago

My son was like this after his operation in march glad to say it has cleared up now. Hope yours does toox