Peripheral Neuropathy

Hi Nick007

Similar to you, I had four rounds of Oxaliplatin and Capecitabine which finished in April. I had horrendous side effects, including severe neuropathy in my fingers (and face for the first week) ...but I was quite chuffed that I didn’t get any numbing in my feet. 6 weeks later my fingers were just about back to normal but suddenly the neuropathy in my toes kicked in. You are not alone! Sometimes I can’t feel them at all but it is intermittent and I can manage. Another 5 weeks on and it is still there but is definitely getting better. Slowly but surely. Chemo can be a nasty beast but it is your friend - it zapped my tumour away and cleared the swollen lymph nodes, so was definitely worth it. Hang on in there - your body is fighting back. Only another few months and hopefully you will be much improved xx

Thanks. I had pretty severe neuropathy in hands and feet during chemo, but the symptoms always disappeared between rounds; currently my neuropathy is pretty mild much of the time - more a crunchy feeling of iron filings between my toes. Sometimes it gets worse, but overall my sense now, six weeks after onset of what oncologists call 'coasting', is that it remains mild and am confident it will gradually disappear, if perhaps only very slowly.

Hi . I finished chemo in 2017 - my feet were a little tingly (like walking on sand) but the nurses looked at my feet and stopped the chemo. If I’m honest I still suffer now. My feet feel like they’re permanently sunburnt and the skin is too tight. Luckily I’m tall and can sleep with my feet stuck out of the bed but they feel quite numb most of the time. Like you say it’s not overly debilitating - just annoying if anything. Chemo’s a ‘damned if you do, damned if you don’t’ sort of thing - some people like to look on chemo as their friend (?) but it does have a lot of side effects - having said that you know that you’ve done everything in your power to prevent a reoccurrence.

Hope the neuropathy improves and your reversal goes well

Take care

Karen x

Thanks Karen, how many rounds of chemo did you have? My symptoms seem much milder than those you describe. Sorry to hear that you've still got those side effects 4 years on. I kind of sense that the side effects I currently have are all part of the "message" cancer delivered; I've regarded the whole episode as a visit from an unwelcome guest bearing painful, but necessary news and try to respect the messages delivered.

Hi . I think I had 3 full cycles, then 3 with a doseage reduction then 2 of just capecitabine. I had oxaliplatin IV, then 9 days capecitabine then 4 days off. My oncologist said I wouldn’t  manage all 9 as the fatigue would wipe me out so I was a bit annoyed that I couldn’t prove her wrong! x

I had 4 rounds with oxaliplatin and capecitbine; two weeks on, one week off. The last cycle the oxaliplatin was reduced to a 75% dose.

Had 6 cycles of Oxaliplatin and Capecitabine which finished at the end of December. Neuropathy kicked in after chemo finished and is still a major problem for me. GP (still not seen in person throughout cancer diagnosis, surgery and chemo!) has prescribed Gabapentin. Despite taking a fairly hefty dose - 900 mg daily) it's having minimal effect. Acupuncture next month. Keeping my fingers crossed but not optimistic. So 7 months after chemo, I'm still struggling. Hope you fare better!

Let me know how you get on with acupuncture. My neuropathy seems to be very very gradually resolving - little fingers and little toes on each hand/foot seem to have returned pretty much to normal. Both thumbs are at times symptom free. Left foot much milder than right foot; neuropathy that was in left shin has gone. It does seem to depend on how much chemo/how many cycles. I did 3 months/4 cycles, although I had been given 8.  I had decided I would not do more than 4; oncology concurred.) My last round was 3/4 strength for the oxaliplatin. My oncologist assures me that long term side effects are rare for those who have had 3 months and it should resolve within 3-6 months. I am sorry you still have a major problem with it. A couple of friends have had long term problems too - both after 6 or more rounds of chemo. I don't think the NHS does enough to warn cancer patients of the possible long-term side effects of chemo. In retrospect I wonder whether I should only have done a couple of rounds as had bad neuropathy during each session, although symptoms always disappeared at the end of each cycle, so I was surprise that neuropathy (oncologists call it "coasting") appeared 6 weeks after I finished chemo. I have heard acupuncture helps; please let me know how you get on. I know one of the UK's best Chinese-trained acupuncturists (Leamington Spa) if that is anywhere near you.

One other thing I find helps is the hypobaric oxygen treatment I started during chemo at Bristol's The Brightwell Clinic. And meditation and exercises to "run energy" through the body also has a positive effect.

I feel there's quite a lot of information that could be given to chemo patients but, at least in my experience, isn't!  Instead I've found myself looking in the "small print" for the real info - eg  "unlikely to lose your hair" but small print advises it may thin.  At a time when I was still coming to terms with the whole business of diagnosis, surgery and chemo, I didn't have the energy to research the possible side effects of chemo and, to be honest, based on advice from oncologist would probably still have gone for it anyway!  Nowhere near Leamington Spa sadly, although it's on my list of places to visit.  I'll look into hypobaric oxygen treatment although we seem to be far away from anything eg Maggie's Centres, albeit we're only on the south coast.  Had my one year colonoscopy yesterday where a polyp was also removed so waiting for results of that and of the CT scan I had at the weekend - and also (because that's just how life is!) results of routine mammogram I had last week.  I feel I'm fast becoming a one-woman drain on the NHS!!