Researching neuropathy - any experiences?

Sorry you’re going through this. I had what sounds like very similar treatment earlier this year - 4 rounds of chemotherapy (infusion and tablets) after a resection. The neuropathy was unpleasant, although manageable, and lasted for a few days after the infusions. I had pins and needles and sensitivity to cold in both my hands and feet. I’ve also developed some neuropathy in my feet, after treatment ended, which doesn’t seem like it’s going away (although apparently it might eventually.) So I’m slightly more sensitive than usual to cold kitchen floors etc. and my feet are permanently quite numb. But on the weeks when I was taking tablets I wasn’t aware of any neuropathy.

I’d suggest buying packs of light cotton gloves, as well as hand and feet warmers - those things you put in the microwave and/or the chemical ones that last a few hours. Also cupping hot drinks in your hands - cold drinks aren’t an option following the infusions anyway, as it feels like gargling shards of broken glass. You’ll also need very warm soft fluffy socks and warmer gloves for going outside. And please take a scarf when you go to hospital for infusions.

Good luck. I can’t recommend the experience overall and definitely had some low points, but 5 months on it’s already receding into the past. 

Thank you so much for taking the time to write this- I really need this kind of insight to help prepare me 

x

Hello BarkerD95eaa4

I was particularly concerned about neuropathy as I do a lot of intricate work with my hands and also enjoy craft work. I’ve been particularly lucky with next to no long term side effects

I had surgery in Jan 2021 followed by 5 of 6 recommended courses of FOLFOX (2 week cycles with intravenous drip as outpatient followed by 48 hour pump at home) the last one was stopped due to other reasons. My dose was cut down to 80% after the first one due to white cell count not recovering. My histology results were pT3 pN1a adenocarcinoma with 1 out of 12 lymph nodes positive.

Below are some of the things I did over the whole period whilst having FOLFOX. I may have been one of the lucky ones anyway (who knows), but I do feel they helped and certainly made me feel better.

I rubbed moisturiser into my hands and feet everyday and continued to massage them for about 10-20 minutes each time, probably about 12+times a day.

Before leaving the house, I would wrap up warm including hat, scarves and gloves.
I’d often carry around a hot water bottle and a hot drink.

I kept myself very warm the whole time, not allowing myself to get cold at all (apart from once*). This involved wearing sheepskin boot slippers all the time except when in bed sleeping when I then had a hot water bottle even if I felt I didn’t need one.

I didn’t touch anything cold and we put old socks on door handles in the house and towels on the tiles in the bathrooms so I didn’t touch anything cold. I wore gloves if I went into the fridge or freezer for anything and I didn’t eat or drink anything cold.

I had a flask of warm water at night in the bathroom so I didn’t have to wait for warm water to come through tap to wash my hands and when brushing my teeth I used warm water.

I spent a lot of time outside resting and breathing fresh air as it made me feel much better than when in the house. Even on cold days I’d have my thick slippers on, gloves, hat, hot water bottle, fleece and in a sleeping bag with a throw.
*The once was when I didn’t wear gloves when I was outside reading and was not moving my hands very much and didn’t realise how cold they were and that I couldn’t feel anything. It took about 3 days for them to recover and I made sure it never happened again.

Apparently good circulation particularly in the extremities can help mitigate chemo induced peripheral neuropathy by carrying away the toxins from the chemo more quickly.

I’m now 4 nearly 5 years on with no evidence of disease. I don’t have any peripheral neuropathy apart from at the ends of my little fingers occasionally not feeling quite right if I don’t move them much. I do however, feel the cold more so than other people, but this is easy to remedy.

I hope some of this might help you and diminish what can be an awful side effect of treatment.

With me the thought of it turned out to be worse than the actual chemo, It wasn't fun but I'm so glad I had it. 

Take one day at a time and best of luck with your treatment, let us know how you get on.

Net77 X

Hi Baker

Oxaliplatin is the chemo drug that causes peripheral neuropathy. I had Folfox (Oxaliplatin + 5FU) 5 years ago for 6 months. I have permanent peripheral neuropathy in my feet - ie they are partially numb. (I cannot have Oxaliplatin again because of the peripheral neuropathy). They did step down the Folfox to 80% at some point, but it was too late for me - damage was done. 

How the peripheral neuropathy evolved for me....while on chemo my fingers and feet were painful and I had pins and needles. My fingers were so bad I could not type as it was too painful - I had to ask for voice recognition software at work for typing. 

I saw a Pain Doctor who specialises in Peripheral Neuropathy, he tried accupuncture. I don't think that worked. He said to me PN would probably improve once chemo had finished (it did), however nerve damage does not repair easily and it was unlikely I would completely recover. He said one generally knows 12 months after chemo what the permanent state would be, he was right, mine did not improve beyond. My fingers recovered completely, but my feet did not. My feet however no longer pain, they are just numb.

Another side effect of Oxaliplatin is that it makes you cold sensitive while you are on chemo - ie you will notice you cannot drink ice drinks, your nose and hands may feel cold and sensitive. The cold sentivitiy is however not permanent, you don't have to worry about that. Just do what makes you comfortable (gloves etc). 

Peripheral neuropathy is however nerve damage - that is what you trying to avoid. So what can you do? There has been research studies over the years that have shown that regular exercise can reduce the impact of peripheral neuropathy. Excitingly though in 2024 there was a study done on 'neuromuscle' training...basically balance exercises like standing on one leg... 

Sure you'll find the study if you google it, but here is a link to the summary - 

https://www.breastcancer.org/research-news/exercise-regimen-decreases-neuropathy

Basically, balance exercise 15-30min twice a week, halved peripheral neuropathy! Thats incredible - wish they had known that back in 2020 when I had my chemo.

So my advice to you, if Oxaliplatin is the drug they have chosen for you - get regular exercise (walk/swim whatever) and do those balance exercises, stand on one leg! And tell your care team if you are having symptoms, they may reduce the dose. All the best! 

Thank you for sharing your experience in so much detail - that is really helpful.

x

That’s amazing, thanks a million for being so honest and passing on your discovery - its definitely encouraging.

i’m still trying to make a decision about whether or not to take the infusion or just take the tablets.

would you have refused the Oxaliplatin if you could’ve known how it would’ve affected you?

Hmmm, thats a tricky one. I suppose if I was making that decision today (and had the advantage of foresight - ie knowing I would end up with PN) I would ask if there is an alternative drug that is as effective, has as good a result.

I'm stage 4, I know nothing is going to cure me, but the more effective the drug is hopefully less chance of mestasis somewhere. If the answer was no, I would take the Folfox I think. If there was something else as effective, I would go for alternative.

Every drug has its side effects though, I think important to understand what those are too. Most side effects are thankfully transitional - like hair loss or upset stomach etc. I find the websites like Macmillian and Cancer Research are quite helpful seting out the side effects - just don't panic, you wont get them all! You can also call and talk to Macmillian if you need.

I would say definitely discuss this with your care team/oncologist, and ask as many questions as you need. Its your life and your body, get comfortable with whatever decision you make. Wishing you the very best! x

Yes I definitely will 

There’s a lot to weigh up 

thanks again

Like you, I'm stage 3 bowel cancer. Had oxaliplatin as part of FOLFIRINOX. I was aware beforehand that it can cause peripheral neuropathy and it can be permanent so was on the look out for it. First cycle I got numbness in tips of fingers and feet, and extreme sensitivity of fingers to cold and touch- had to wear woollen gloves to go in fridge & couldnt type on laptop. lasted for about 3-4 days post infusion. Got dose reduced next cycle to 80% with similar but less severe & shorter lasting effects. So went down to 60% then 50% for subsequent cycles. Seemed to work for me. If it hadnt then had agreed with consultant that would cut it out. Wore off after a month or so but returned when I had chemoradiotherapy (much less) but has now gone again

We all react differently. Personally, i would have first cycle, see if you are affected, and if yes, reduce dose or abolish for rest of cycles

J.

Thank you so much for your response. I’ve stocked up on thermal gloves etc and will follow all the advice - hopefully I can head it off