Hi all,
I have been on Capox (8 cycles) unfortunately the 7th cycle seems to have been the kicker and I've developed constant peripheral neuropathy in my fingertips and toes that spreads up my feet.
The oxaliplatin has been dropped from my final cycle - I am happy to be done with that! The team hasn't mentioned anything to help with it other than a "wait and see how bad it gets" approach.
I've watched the really helpful presentation on CIPN (thank you to whoever shared that!) They mention acupuncture and reflexology.
Has anyone tried either and had good results? I'm not usually a "natural remedy" person but I feel I need to do something rather than waiting and seeing how badly I suffer with it.
Hi Bren.
I started struggling to walk after chemo, but no one seemed to be bothered. Actually I was stuggling to walk during chemo sessions, but no one was bothered.
3 months after chemo ended my neuropathy just got worse and worse. I went to my GP who said 'why did it take you so long to see me'.. well the oncologist wasn't bothered or any of the rest of my team, so I didn't see it as a big deal, but it so is!
Bren, keep shouting about it because it will probably get worse after your chemo stops. It seems to be something that is not really researched. I found a really interesting youtube zoom meeting recording done by therapists and they said keep trying to stimulate the areas, so rub your fingers in rough towels etc.
I use an accupressure mat to try and increase blood circulation to my feet. I walk lots too, but can't do steps, pebbles, uneven ground etc and need a stick.
It got worse 3 for up to 3 months after chemo, then I did get a slight improvement, but I'm no where near right and the improvement has stopped. It might not get better than this. GP has put me onto folic acid. I've done some research and I'm taking vit B complex, Alpha liponic acid, magesium. No definative reasearch to say they work, but some indications that they might.
I'd love to try reflexology or accupuncture, so if you go that route, let me know how it goes for you. I Can't work, so can't pay for those sadly.
Zx
Long term neuropathy can be a challenge. I'm currently trying chilli based topical cream called Capsaicin and Vitamin B9 + B12 rich diet.
My B12 has been rising slightly but B9 has crashed so I've been prescribed Folic Acid for 4 months to see if that can been restored. I'm hoping that neuropathy may lessen then too.
I have been considering acupuncture for about a year and would also be interested to hear from anyone who have tried it against neuropathy.
CrumpetsOrToast Not tried acupuncture yet... but it is on my list. Do use an acupuncture/acupressure mat. Does it work? Who knows, but any stimulation is good and if it gets circulation going, it is worth a punt.
I've started doing epsom salt baths, doing them for just over 2 weeks and I think they help. Have bought some ginger essential oil to add and add some ordinary cayanne pepper powder too to bung in the mix. Evidently a light sprinkling of cayanne in your shoes is a thing to try.
GP put me onto Folic acid 3 months ago as my B's were not good, my feet were numb and swelling massively. He asked why it had taken me so long to see him... DOH! No one cares! I'm grateful that he does care.
Anyway, just had bloods done so haven't had the B results yet. Am taking B vits etc to try and bump up nerve healing, which I know takes for ever. Also taking Magnesium and Alpha something... that it seems there is a tiny bit of evidence of it working.
I am bl**dy determined that I'm going to improve this neuropathy. My pay cut (from being off sick) is not good with being able to access alternative remedies... might just have to hammer nails into my feet at this rate!
Hi Bren, I’m sorry to hear about your neuropathy. I hope you will find something that helps and your symptoms will subside. My husband is in the same situation. Could you tell me what you are referring to by the “CIPN” presentation please? We haven’t seen it.
Wishing you all the best.
thank you.
Hi Ellie1 I think it stands for chemo induced peripheral neuropathy? I’ve posted this link before so it might be the one being referred to?
Managing Peripheral Neuropathy
Take care
Karen x
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