Cancer and Peripheral Neuropathy - support from the Online Community

Cancer and Peripheral Neuropathy - support from the Online Community

Online Community members are affected not only by cancer, but other conditions caused by cancer or cancer treatment. The Community is a place where people can come together and share experiences and tips so you don’t have to go through it alone.

Peripheral neuropathy is damage to the nerves connecting the brain, spinal cord and the rest of the body. It can be caused by cancer, or its treatment, and is one side effect we hear mentioned a lot across the Community. In today’s Community News Blog, we will be highlighting some of the support shared across different forums in relation to peripheral neuropathy.

Members of the Community often share experiences of chemotherapy-induced peripheral neuropathy and how it affects quality of life following chemotherapy treatment

“Hi anyone else got peripheral neuropathy post surgery or due to chemotherapy? Mine started 21 years ago with BC immediately after auxiliary clearance & lumpectomy in left hand with numbness & pins & needles sensation - back then no help offered. Had follow up chemo and radiation all causing nerve damage. It's progressed slowly so all fingers numb I have lost two wedding rings down the years as no sensation.” - Community member, breast cancer forum  

Since finishing decetaxal I have no feeling in my toes except cold, any hints or tips please? A hot water bottle makes them feel burnt” - Community member, breast cancer forum 

"My husband (Stage 4) bowel cancer had good news on Friday after recent MRI/CT scan, but after eight cycles of chemo, last one in December, he still has tingling in fingers and toes. Any advice on how to manage this on going side effect of his treatment? It’s not unbearable just uncomfortable and when he should be feeling so much better he isn’t!" - Community member, bowel cancer forum 

"I have DLBCL, diagnosed after a lump appeared on my neck. My question is do many of you suffer with neuropathy in your fingertips? Mine started a couple of weeks after my first Chemo. I am about to have my 3rd. This numbness and tingling is driving me nuts and just wondered how others cope with it." - Community member, diffuse large b-cell lymphoma forum

Members of the forums were able to share their experience and offer tips and support.

“Neuropathy is very difficult and I am sorry to hear how it has progressed on chemo. It may well recover somewhat over the year after chemo...my neuropathy from EC is recovering now, and I hadn't realised it was one of the side effects. I have neuropathy from paclitaxel too but that was milder as I had the ice gloves and mitts. The neuropathy is definitely getting better. I do have some damage to the nerves in my arm from radiotherapy too, but it is early days and I am not sure how that will pan out yet. I hope maybe the ice trick will help you xx” - Community member, breast cancer forum 

"Neuropathy can improve over time but also can never completely go away. I started with it in 2017 and my feet feel like they’re permanently sunburnt - hot and swollen and tingly with reduced sensation. I found reflexology helped a bit and I try to wear well cushioned footwear. I also sleep with my feet stuck out of the bed! It is annoying and a permanent reminder of the cancer but I just try to live with it." - Community member, bowel cancer forum 

Although it can help to be able to talk to others in the Community about your symptoms and find tips, it is really important that you also let your health care team know. They might be able to suggest supplements or therapy to help you.

Have both of you discussed this with your breast care nurse? Numbness was something I was told to highlight to the team x” - Community member, breast cancer forum 

“Unfortunately Peripheral Neuropathy is one of the side effects that come along. Do talk this through with your team as there are things that they can do including reducing one of the drugs in your treatment (R-CHOP?) that is responsible for developing this. I had it bad in my hands but as my treatment was being used to get me ready for Stem Cell Transplant so I had to have the full effects of the treatment. My Specialist Cancer Nurse did advise me to get a few stress balls, I found a couple of small hand sized rugby balls and I regularly worked my and hands and fingers. This helped get the blood moving through my hands and in turn exercised my nerves and muscles. This helped but did not remover it... it tends to clear up quickly after treatment is completed.” - Community Champion, diffuse large b cell lymphoma forum 

"Hello  I am now 5 months post chemo and still have issues with fingertips and toes, though much improved. I have been prescribed neurobion tablets by my oncologist, it’s a mixture of B vitamins and is said to support nerve health and o do think it’s helping. I also take vitamin D3 don’t know if it helps the nerves but dr wanted me to take it too as I was deficient. I now find that I don’t really notice the neuropathy in my hands unless I push the very tip of my fingers but my middle two toes are still a problem on both feet but all in all much improved." - Community member, breast cancer forum

"Hello, I have peripheral neuropathy caused by treatment, I kept falling over, couldn't keep my balance and had to hold onto people.  My future wasn't looking bright.  A Neurologist I saw about my condition, this was my 3rd opinion because I refused to believe I would not get better, suggested I try physiotherapy and I'm so pleased I did because with the exercises they gave me I can now walk unaided and it's like I  never had any issues." - Community member, chemotherapy forum

Some members report the symptoms of peripheral neuropathy lessening over time.

“They say sometimes the neuropathy goes away over time, sometimes not. Mine did in my hands, luckily. I still have it a bit in my feet. But it doesn't bother me at night. More often it's when I've been on my feet a lot. I think it would be worth asking for a referral to someone who can help you with this” - Community member, living with incurable cancer forum  

“I developed neuropathy in my hands and my feet after receiving R-CHOP for lymphoma. The neuropathy in my hands went away, but the neuropathy in my feet has persisted and is unlikely to improve now.  At some point in the last 18 months I have become used to living with it and it rarely bothers me more than momentarily now.” - Community member, cancer chat forum

"I found that after the doctor stopped Oxaliplatin when I went for chemo, the tingling in my hands and feet began which I had been warned against.  I was also told this would probably continue for months afterwards.  I tend to just put up with it and try to keep my hands and feet warm even resorting to putting my feet on a hot water bottle when watching TV which seems to help." - Community member, bowel cancer forum

In addition to sharing experiences and support with other Community members, you can also ask questions to a Cancer Information Nurse Specialist. A Community member asked a question about peripheral neuropathy in a recent Ask the Expert thread:

After 1 session of chemotherapy  of Paclitaxel and Carboplatin  ( September 2021  ) I had a bad reaction to it and suffered with peripheral Neuropathy and it was agreed i stop treatment.   For the last 6 weeks or so I am having very similar pain and discomfort ( though milder ) In my knees, legs, and soles of feet. at first it was just the knees so my GP arranged x rays to rule out arthritis. The x rays are clear so my question is can/does peripheral Neuropathy cause issues with the knees as I have difficulty bending them the problem is particularly the backs of the knees and have a lot of discomfort throughout the night .I am currently taking Gabapentin for the pain.” - Community member, Ask a Nurse forum

If you’re struggling with symptoms, you might also find our nurse’s response helpful.

“The side effects of chemotherapy can vary from person to person. Most people find that after the drug is stopped the symptoms associated with peripheral neuropathy gradually improve over time, but this can take several months or more as the nerves slowly recover. Sometimes however symptoms continue to get worse for a few weeks, this is called coasting.  Considering your treatment stopped last September 2021, and you have started experiencing pain and discomfort again over the last six weeks, we would always advise talking to your specialist team, or your GP again about your concerns.”

If you would like to read the full response from the nurse, you can find it here.  

You can also find support from Macmillan’s Support Line. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

If you’d like more information from Macmillan about peripheral neuropathy, you can find this information on our main website here.

Have you experienced peripheral neuropathy? Please use the comments section below to share your experience and any hints or tips that have worked for you. You might also want to start a thread in your forums about peripheral neuropathy so that other members can join in to share experiences and support.

Anonymous
  • I pressed enter too soon Joy my whole body ,my skin is effected ..tolerating clothes is painful and I have to chose what I wear carefully.

  • It’s debilitating..fatigue.joints ache . Feeling awful and very low on times .my oncologist is aware and th team ..another chat about it next time I see ONC .

  • Hi ,

    Thank you for your comments. I'm Tom, part of the Online Community Team here at Macmillan. 

    We are glad you found our online support forums but I am sorry to read you are still feeling strong side effects. It's good to know that your team and the oncologist is aware of this. Don't forget you can always talk to your GP too if you have concerns.

    You can untick the 'Enter to Reply' box, as shown below, to prevent messages being sent before you're ready. This button can catch members out from time to time. 



    Hopefully you will find all the connection and support you are looking for on the Online Community.

    If you have any questions for us on the Community Team, don't ever hesitate to reach out to us at community@macmillan.org.uk anytime.  

    Kindest Regards,

    Tom
    Macmillan Community Team

  • Just to say, do make sure if you think you have peripheral neuropathy to get it properly diagnosed. I had what I thought were the symptoms and did nothing about it. It turned out I had thrombosis in my left leg which has left me with quite a few problems due to lack of blood flow to my foot.

  • Hi Kettleson, 

    It's Megan here from Macmillan's Online Community team. I'm so sorry to hear that your symptoms turned out to be thrombosis, I hope you have some support with managing this. 

    I'm sure others who are reading your comment will find it helpful to hear about your personal experience, and I'd like to thank you for taking to time to share this with us. 

    As a member of the Online Community, I hope you'll find it comforting to have a space to connect with others who are in a similar situation to yourself. If you need any help using the site or finding additional support, please don't hesitate to get in touch with the Online Community Team. 

    You can email community@macmillan.org.uk or send a private message to the moderator account.

    We’re here to help and I hope the Community helps to show you that you’re not alone and there is lots of support available for you.

    Best wishes, 

    Megan
    Macmillan's Online Community team