Peripheral neuropathy after chemo

Hi Ellie1 I’m afraid I’m not aware of a magic cure - my feet still feel like they’re permanently sunburnt 7 years down the line. I found reflexology helped a little but I’m not sure how much was the relaxation and moisturising of the feet? It can improve further down the line on its own but there are others who still seem to struggle with it.

Ive attached a link to a list o did with a talk on PN and also some exercises. 
community.macmillan.org.uk/.../managing-peripheral-neuropathy

Here is a link to another post with similar issues

 RE: Anxiety about Chemo Induced Peripheral Neuropathy getting worse in the winter months. 

Please let us know if any work?!

Take care

Karen x

Hi Ellie

Sorry to hear your husband is suffering with peripheral neuropathy following chemo. It is, unfortunately, a common side-effect, particularly if the chemo has involved Oxaliplatin.

My chemo finished in July 2022, and I still have pins and needles in my hands and numbness in my feet. Symptoms have only lessened slightly after initially worsening.

I find wearing thick socks or compression socks helps. I also try to walk between 2-3 miles a day.

I try and ‘zone out’ the symptoms in my mind and this works when I have to concentrate on another activity. Some people say that Amatriptyline helps, but I’ve not tried it myself.

While the neuropathy effects are constant it does not massively affect my quality of life. I see it as a small price to pay for still being here.

Hi Ellie1 I have permanent neuropathy in my fingers and still suffer from cold sensitivity. I have found bamboo cotton gloves help me. I wear them on their own in warmer weather and inside winter gloves in colder weather. I also have numbness in my feet but, in my case, it is probably caused by a mixture of conditions, not just the chemo. I find diabetic socks help and to relieve the pain I elevate my feet.

Hope you find something that works for your husband.

Kind regards.

Maninbath

Hi, I was originally given pyridoxine, then swopped to amitriptyline for the neuropathy in my fingers. Just had to up the dose as it was progressing. All the best

• Thank you for your helpful reply Karen, and the links. We really appreciate it. I hope your PN will improve for you too. 

Thank you Spider56. I’m glad you have found some things that help you. He has been able to walk a little more this week (balance seems slightly better even though he still can’t feel his feet), and I think he has less pain on the days he walks more, as you say. I’ll try the socks you mention too. All the best to you too and thanks again. 

Thank you for your helpful reply Maninbath. I’ll have a look at the gloves and socks you mention for him. I guess it’s a lot of trial and error to find things that might help. I wish you all the best. Thanks again. 

Hello all above,

The issue of neuropathy an/or peripheral neuropathy seems to be a difficult one to resolve and yet is a most uncomfortable, distressing and painful one to have to live with for months or years. In my case, I started suffering from a sensation of cold feet and lower legs, often feeling icy cold, 24/7 during my 2nd Capox treatment in July 23. The Capox Capecitabine drug tablets leaflet does mention an uncommon side effect of cold limbs and extremities. My Capox treatment was stopped early in Oct 23 because the cold feet and legs 'syndrome' 24/7 had become unbearable. Unfortunately the cold feet/legs, and also neuropathy in the fingers, continue  to date in Feb 24 and I am trying to experiment and find what can help to relieve this constant awful discomfort. 

I would very much like to hear what can help from others who have a similar cold / neuropathy syndrome post cancer treatment.

I am finding that wearing loose or oversized shoes, socks, slippers seem to help a tiny bit. I agree that diabetic bamboo socks (oversized and very easy to put on) seem to help a little. I wear knee high gentle compression ones. Short lvery oose light socks at night may help a little also. I would suggest avoid as much as possible unduly hot or cold water on hands and feet/legs. Oddly, going barefoot for short periods around the house also seems to help a little. Occasional creaming (with Dermol 500 e.g.)and massaging briefly the feet,/legs and hands also seems to help a little. Walking as much as possible also seems to help. Keeping feet up and moving about more frequently also seems to help. 

I think that drinking a goodly amount of water several times a day may help. I am beginning to suspect that reducing caffeine intake may help a little. Oddly, I also get the impression that having an occasional small drink, beer or G & T or a small whisky well watered watered down may help a little. Of late, on advice, I have started taking one a day Vitamin B Complex which contains some Vitamin B12. Does anyone have any information or experience about combating, maybe even curing, long-term neuropathy or peripheral neuropathy or cold feet/legs syndrome with the help of Vitamin B Comples or Vitamin B12 in its own???

Hope the above may help and may attract some resoponses and suggestions to help deal with this serious issue of long-term neuropathy or whatever it is !!

Anbou. 

Hi Ellie1.

I finished Capecitabine in March 2020 and have neuropathy. When I returned to work I was suffering with it quite badly. I always use gel insoles in my shoes and wear 100% cotton diabetic socks. My colorectal nurse wrote to my gp to ask that I could be prescribed Gabapentin. It's what they prescribe for amputees with nerve ending pain. I took it for around a year and a half, but felt it only just took the edge off. Then in the bathroom one day (I have a stoma), I  noticed a capsule had passed through into my pouch. I suddenly remembered that I was told by one of the chemo nurses that people with a stoma can't have capsules as they pass through unprocessed. I  rang my gp reception and explained and she got the gp to change my prescription for liquid form. It's still there but more bearable now.

Hope this helps 

Kim

Hi Ellie1 

I tried a couple of tablet medications but could not tolerate them well, so use a topical desensitisation medication in some areas. I also do other things such as strong moisturisation + temperature control.

I lost quite a lot of feeling in so also doing circulation+muscle movements for numb areas.

For me all the above have not rid the neuropathy but has made it much more bearable.

Each of our cases are different, so I'd suggest your husband may benefit from a GP appointment to review trialling different solution combinations that suit him. You may wish to note done treatment options from the NHS NICE website for husband to duscuss with GP: https://bnf.nice.org.uk/treatment-summaries/neuropathic-pain/