Chemo induced Neuropathy after FOLFOX

Hi Eclaire55. Yes I know exactly what you mean - my feet feel like they are permanently sunburnt and the skin is too tight. They are quite numb to touch and it sometimes feels like I’m walking on sand.

Unfortunately I’ve not found a magic cure and I hope somebody else seeing this post has. I find reflexology helps a bit and i also wear Sketchers trainers which have a nice comfy insole.

Sorry to not be much help but just to let you know that you’re not alone

Karen x

Hi Eclaire55

I think this may be peripheral neuropathy which is often caused by certain chemo treatments, especially those used for patients with bowel cancer.

I have it and I've tried all sort of things but one of best the ways I get relief, especially when I'm in bed, is to use a hot water bottle.  Warm socks also help, but I find cotton or bamboo with seamless toes are best for me.  Speak to your GP he may prescribe something to help you.

Take care,

VickiLynne

Hi VickiLynne

Thank you for your reply, the pain in my feet feels like I am walking on a bed of nails. I like to put my feet out of the duvet but if I do the pain in my feet is excruciating, I used to put socks on but found my feet got too hot and kept me awake, I will try some bamboo socks they might be better.

My doctor did prescribe a tablet to take for 2weeks but a possible side effect was that it could cause dementia - and I thought no, I will hope it gets better but time is running out as I think they say 2 years and it should improve.

Karen

Thank you for your kind words, here's hoping that someone has a solution.

In the mean time I will try reflexology and look at the stretcher shoes when life gets back to sort of normal.

Dear Eclaire55

It’s such a weird feeling, this neurothapy. 

I’ve also asked what the treatment might be, and have been told there are options should it be intolerable. It might be going back to your oncologist for their advice. 

My Zooming Pilates teacher has introduced exercises for mobilising the feet, and that seems to help. Hoping it might become sustained - might be worth seeing if there any YouTube videos showing how to do that. 

My stoma and neuropathy and post-chemo fatigue get me down from time to time. And my beloved helps me put that into perspective by reminding me that I’m alive. And although the new normal isn’t as good as the old normal, it beats the alternative...

Hi Eclaire55

yes, following treatment with capecitabine and 5 FU two and a half years ago my feet feel weird. However I am learning to live with it and to be honest I only really feel it badly when I'm in bed. I can walk, tramp round a golf course with no ill effects. Since about 6 months ago it has stopped getting any worse. 

Discussions with GP, consultant, specialist nurse have almost been met with a Gallic shrug. The only bit of information I did get was; it often goes of its own accord, but if you still have it after a year you are probably stuck with it! I now accept I'm stuck with it but hey, things could be much worse.

Interestingly, a neighbour of mine who had his bowel surgery 10 years ago has almost identical problems with his feet as I do. He's always walking around with a smile on his face.

Sorry I can't help. I get the impression that there isn't any. At least non my local experts are prepared to offer.

Best wishes

Hi Ifan68, Eclaire55 and Wellspring

I had my chemo treatment back in 2012 and I still have peripheral neuropathy.  For me the worst time is when I'm in bed, but I have learnt to live with it too.  I did investigate treatments, and was offered a tablet - which I would have had to take long term - but I  decided that I didn't want that.

I don't let it interfere with my life and, like others, think of it as an inconvenience but I'm still here .......

What is good is that there is a lot of research going on into the side effects of many chemos and hopefully in the near future, with gene testing,  chemo treatments can be adjusted for certain patients to hopefully prevent these side affects.

Take care everyone.

Hi all,

I am relieved to hear i am not the only one with this. I have all the symptoms you have listed. As you all say it is not ideal but we all get on with it. Worst time i am sure will be the winter months. Good luck everyone. Paula

Hi

Apparently it's the Oxyplatin based chemo. infusion that causes this condition, not the Capecitabine tablets & from the many posts/ articles I've read...it's a very common occurence...that can cause long term effects.

As an artist, I refused the infusions & am now just on the Capecitabine Tabs. I just didn't want the risk of having numbness in my fingers & not being able to hold a paintbrush - as painting is my main focal point in life, & I believe that quality of life is a very important factor...when weighing up the pros. & cons. Obviously, taking the Tabs. alone, is not as effective as the combination of infusion & tabs. However, I'm taking my chances.

Hoping this will improve for you.

Hi Marianne26

You are right in what you say about the Oxyplatin based chemo.  I had severe reactions to it and after talking things through with my oncologist I stopped having the iv infusions after three sessions and continued on with an increased dose of Capecitabine Tablets.  I had six months of chemo, the norm is now three months.  I had my chemo back in 2012 and am one of the unfortunate people who have been left with peripheral neuropathy following chemo.

After discussion the extra percentage risks seemed so small (as we were talking of a percentage of a percentage - if you follow what I mean) and I thought it was the right decision for me for my quality of life at that time.

It is not everyone who gets side effect from Oxyplatin, and some people can get side effects from Capecitabine tablets too.  But everyone is different and procedures are in place in may hospitals to test patients who are being given certain chemos for bowel cancer and hopefully these tests will be available in all hospitals soon.

I hope you are able to carry on with your art during your treatment.

Take care,

VickiLynne