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bexly33

Peripheral Neuropathy

Hello everyone. I am 4 years bowel cancer free, but have peripheral neuropathy which has got worse during this time. Can anyone on this lovely forum offer any help or advice as to what I could do to help with my hands and feet. I also tingle all over. I’ve hardly any feeling at all in my right foot and fingers. Can it get any worse than it is now? My GP offered medication, but unsure about this route. Many thanks for any info or advice. I had Oxaliplatin and Capecitabine chemotherapy which has caused this.

Stella 2020

@acrorat , great news re CT scan, hope PN will get better over time. :x:

Frances Styles

Love Reading NED @acrorat, it gives us such hope, love Frances :x::x::x:

Siona

🥳🥳 @acrorat NED are the best three letters in the world.
Vitamin B12 might help for PN (I took it for 9-10 months) and specific massage or gentle stretching for hands and feet

Lucy118

That’s interesting @Siona, I’ve just been prescribed vit B12 as apparently my levels were extremely low. I do hope it helps my PN :x::x:

dawnramsayrae
Quote from @Lucy118:
That’s interesting @Siona, I’ve just been prescribed vit B12 as apparently my levels were extremely low. I do hope it helps my PN

My oncologist has prescribed high dose Vit b6 to help my neuropathy alongside me chemo

Lucy118

Thank you @dawnramsayrae, I will ask my colorectal nurse at my next appointment in a few weeks time :x::x:

betty26
Quote from @bexly33:
Thank you @acrorat. Any info would be appreciated. Mine has gradually got worse over the last 3 years. I have some literature from the hospital. I can send it to you privately if you wish and to @ch7091 (if you would like it) 😘

Hi @bexly33
I’m sorry to hear that you are suffering with Neuropathy. Nearly one year after finishing Capox treatment, I’m exactly the same. Any information you have would be fantastic, as I’m really struggling. Thank you. 💕

Polly 1

Thanks for posting this @bexly33.
My husband still has PN from the Folfox he had for 6 months in 2013. He is still on chemo now but hasn't had to go back on Oxaliplatin yet. He has numb painful feet and little feeling in his fingertips.
I remember him saying in 2013 it was like walking on marshmallows but he has sort of got used to the feeling now. Harder for him that he still has problems with his fingers - can't pick up small tablets, separate pieces of paper etc

bexly33
Quote from @Polly 1:
Thanks for posting this @bexly33.
My husband still has PN from the Folfox he had for 6 months in 2013. He is still on chemo now but hasn't had to go back on Oxaliplatin yet. He has numb painful feet and little feeling in his fingertips.
I remember him saying in 2013 it was like walking on marshmallows but he has sort of got used to the feeling now. Harder for him that he still has problems with his fingers - can't pick up small tablets, separate pieces of paper etc

That’s exactly how I feel @Polly 1 I only had four sessions of Oxi due to very bad side effects and 8 sessions of Capecitabine tabs. My symptoms have gradually got worse. I’ve just started swimming again, and although my right foot feels really weird, I’m hoping it might help. I have problems picking things up now and putting earrings in etc. Anything fiddly, but everyone is different and in some it disappears and others not so bad. All the best to your hubby for his continuing treatment. :x::x::x: 😘

Up Shit Creek

Late to the party here, but in the same boat. I get severe pain in my feet from PN and numbness in hands - caused by oxalyplatin.

The only NHS treatments are ametriptylene, duloxetine and other such antidepressants that can be repurposed for PN treatment. There is substantial evidence to support them. I think they work on 50 - 60% of patients. I've been on duloxetine for a week and haven't noticed any improvement though it can take up to six weeks to work. We'll see.

Failing that, Scrambler therapy looks promising but it's not available in UK. You'd need to travel to US or Italy to access it. Accupuncture is also supposed to have potential, but I've tried it with two different practitioners without success.

Best of luck.

Forum user

Where was I when @acrorat gave your fantastic news, just absolutely great well done you :x::x::x:

JEBL

@bexly33 I am just looking for info on PN as hubby has started experiencing it in his feet - it had gone away post chemo and is now back in a different way. The link you have put no longer works. If you still have it please could you post it again? Thanks
Jane

Wegwe

@JEBL the link works fine for me. Did you try to access it from the original message or from one of the replies quoting it? That sometimes makes a difference for me.

I’ll copy the link just in case this version works better: www.sitandbefit.org/...Fit-Neuropathy-Exercise-Guide.pdf

I’m struggling to do the exercises though. Press one toe into the floor and spread the others? I don’t think I could even do that pre-chemo 🤣🤣

JEBL

Thank you! That does work fine…

Yup I can confirm that pressing one toe into the floor and spreading the others is hard even without PN 🤣

Have you noticed any improvement in doing the exercises? Hubby’s PN seemed go away post chemo and has now come back 😞

Quote from @Wegwe:
@JEBL the link works fine for me. Did you try to access it from the original message or from one of the replies quoting it? That sometimes makes a difference for me.

I’ll copy the link just in case this version works better: www.sitandbefit.org/...Fit-Neuropathy-Exercise-Guide.pdf

I’m struggling to do the exercises though. Press one toe into the floor and spread the others? I don’t think I could even do that pre-chemo 🤣🤣

Wegwe

@JEBL I just saw the exercises for the first time, so can’t tell yet if they help. I finished capox recently and haven’t had any serious problems with neuropathy, but the mild neuropathy I do have seems to be moving. First it was in my toes, now it’s more around my ankles.

JEBL

Well, I hope it moves off out of your body completely soon! :x::x:

bexly33

@JEBL did you manage to access site from @Wegwe? :x::x:

JEBL

Yes thank you! @bexly33