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Stopping neuropathy – one of chemotherapy’s most challenging side effects

Tim Gunn
by Tim Gunn | In depth

22 May 2023

21 comments 21 comments

Andrea receiving chemotherapy.
Andrea's treatment had to change because of chemotherapy-induced neuropathy.


A few summers ago, Andrea lost a flip-flop.

Anyone can misplace a shoe. But this was the only thing between Andrea’s foot and the London pavement. She didn’t notice that it was gone.

She began dropping things then, too.

“I couldn’t feel the pressure that I was applying when I was holding drinks. Quite often, they would just slip through my hands.”

As they smashed and shattered on the floor, glasses didn’t feel like the only things Andrea was struggling to keep hold of.

She was a young mother with bowel cancer, grappling with her mortality while trying to do her daughter’s hair. And these symptoms weren’t caused by the disease. The thing taking her body away from her was the treatment.

“When you’re going through a cancer diagnosis, trying to be strong for your children and trying not to worry your family, just something as simple as breaking a glass, for the third time in a week, becomes so overwhelming,” Andrea says.

“I would very often just burst into tears. And someone looking in would probably think, ‘Why’s she overreacting?’ But it’s because it’s just another thing – and it has nothing to do with the cancer. What’s trying to save my life is causing me its own set of problems. It’s making my life worse.”

What was happening?

The problem Andrea was – and, to some extent, still is – dealing with is a type of nerve damage called chemotherapy-induced peripheral neuropathy (CIPN, or neuropathy from chemo).

The symptoms of neuropathy can range from mild pins and needles to losing all feeling and control of your hands and feet. It can be caused by cancer treatment, but doctors don’t have a way to treat it.

We’re helping some of the world’s best scientists change that.

Why might chemotherapy cause pins and needles?

Chemotherapies are especially good at killing cancer cells, but they can also harm healthy ones. These include the peripheral nerve cells that carry messages back and forth between the brain and spinal cord (the central nervous system) and the rest of the body. When peripheral nerve cells are damaged, it becomes harder for the messages to get through.

An illustration showing a damaged peripheral nerve cell next to a healthy one.
A damaged peripheral nerve cell (right) compared to a healthy one. Blue Ring Media/Shutterstock.com

That’s a big problem when messages have to travel a long way, like to the hands or lower legs. 

Andrea’s peripheral neuropathy started as pins and needles on the soles of her feet. Then the feeling moved up to her hands.

“You know if you sleep on your arm and it goes a bit tingly? I thought that’s what had happened. But it progressively got worse until it was really overwhelming.

“It’s not something you can ignore. When I’m sleeping, when I’m walking, when I’m sitting down – constant pins and needles.” 

Then, despite the hot summer, Andrea’s feet became freezing cold. Eventually, she began to lose all sense of them at all.

It’s hard to walk when you don’t know where your feet are, so Andrea had to drive everywhere. That’s not much easier. If they weren’t strapped into heavy winter boots, the things on the end of her legs wouldn’t stay on the pedals. 

After her eighth cycle of chemotherapy, Andrea’s doctors had to stop giving her the platinum-based drug oxaliplatin. Although it was helping to shrink Andrea’s cancer, oxaliplatin is one of the drugs most likely to cause peripheral neuropathy. It was putting her at risk of permanent, life-altering nerve damage, so her last four cycles of treatment couldn’t include it. 

Why is chemotherapy-induced peripheral neuropathy such a problem?

Andrea is now cancer-free.  

In some cases, though, when side-effects stop cancer treatment, they shorten people’s lives.  

As Professor Alison Lloyd, from University College London, makes clear, “Neuropathy is one of the major limiting factors for chemotherapy.” That’s because, once a chemotherapy drug starts causing neuropathy, the only way doctors can stop it getting worse is by taking the drug away. 

Alison Lloyd

Alison Lloyd

Professor of Cell Biology, University College London

Professor Alison Lloyd, one of our funded researchers, is currently Director of the Laboratory of Molecular Cell Biology at UCL, where she runs the Cell Biogenesis and Tissue Regeneration research group. She is interested in understanding the complex processes involved in nerve regeneration and investigates how some of them may be important in the development and spread of tumours.

The problem is made worse by the fact we can’t even test people to see who’s at risk of developing neuropathy from chemo. All doctors and patients can do is wait to see if symptoms will appear. Uncertainty like that can make treatment decisions much more difficult.

“We don’t have an identifiable biomarker, or sign in the body to predict which patients will suffer this toxicity and how severe it will get,” says Professor Lillian Siu, who’s been treating head and neck cancers, often with drugs that can cause neuropathy, for 25 years. “I can’t give more information than ‘You have to take it and see what happens’. And that’s not necessarily attractive to anybody.”

To make things better, we need to find out more about how chemotherapy drugs affect nerve cells. That’s Lloyd’s specialism. Her investigations have brought an almost unknown system in our bodies into the spotlight. They could give doctors a way to predict, treat and even prevent neuropathy from chemo.

The blood, the brain and the nerves

We already knew a lot about how the nerve cells in the brain and spinal cord interact with chemotherapies. Or, more commonly, how they don’t. A special protective system called the blood-brain barrier (BBB) stops most drugs getting to them. That makes brain tumours hard to treat, but it can protect the brain and central nervous system from toxic side effects.

Neurotoxicities like brain fog or ‘chemo brain’, which Andrea has also experienced, are very difficult problems, but they’d be much worse without the BBB.

Things are a little different in the rest of the body. Exactly how different has long been a mystery. A lot of scientists know a lot of things about the BBB. Lloyd is the rare one who has found something out about its not-so-distant cousin: the blood-nerve barrier.

That works similarly to the BBB, stopping substances in the blood getting to sensitive peripheral nerves – it just gets nowhere near as much attention.

“When we first went to the blood-brain barrier meetings and said, ‘We’re trying to understand the blood-nerve barrier,’ the response was mostly, ‘There’s a blood-nerve barrier?’” recalls Lloyd.

What have we found out about chemotherapy-induced peripheral neuropathy?

The main difference, as Lloyd got used to explaining, is that the blood-nerve barrier is a little less secure. This might help explain how chemotherapy drugs can get through and cause peripheral neuropathy.

And it might also make the blood-nerve barrier a promising area to study. While everyone else was looking the other way, Lloyd’s team made a breakthrough. They found a way of opening and closing the blood-nerve barrier, simply by activating a signal in one of the types of cells that support it.

No one’s ever managed to do something similar in the brain.

“There was always this idea that you had to break down these barriers,” explains Lloyd. “But that would be toxic. We’ve shown you that can help things cross it, just for a short time, which makes side effects less likely.”

An image showing the different ways drugs interact with peripheral nerve cells when the blood-nerve barrier is closed and open.
In the left image, the blood-nerve barrier is closed, which means drugs (red spots) can't enter peripheral nerves. It’s very different when the barrier is open (right).

On the one side, opening the blood-nerve barrier is an important step towards delivering new types of cancer drugs to cancers that start in or spread through the nervous system. Then, quite apart from cancer, it could help treat nerve cell disorders and brain conditions like Huntington’s disease. It could even be the foundation for opening the blood-brain barrier and improving how we treat brain tumours.

At the same time, understanding how to strengthen or close the blood-nerve barrier could help us stop chemotherapy-induced peripheral neuropathy.

How doctors deal with peripheral neuropathy

Siu knows just how important that could be. Because there aren’t any tests for peripheral neuropathy today, all doctors like her can do is help patients talk about their symptoms.

“You can monitor other issues with scans and blood tests, but you can’t guess what’s happening to the nerve cells in every patient,” explains Siu. “You have to rely on them to tell you how they feel.

“We bring it up every visit. And I try not to wait till the symptoms become obvious, because sometimes there’s a delayed effect. If you wait till you have moderate toxicity to do something, it could be severe by the next treatment cycle.”

Professor Lillian Siu

Lillian Siu

Professor of Medicine, University of Toronto

Professor Lillian Siu is a cancer doctor and a researcher. As well as her position at the University of Toronto, she is senior medical oncologist at the nearby Princess Margaret Cancer Centre. As part of her role there, she works as Director of the Phase I Clinical Trials Program and Clinical Lead for the Tumour Immunotherapy Program, and holds the BMO Chair in Precision Cancer Genomics.

That discussion goes deeper than symptoms, though. Siu has learned that ‘who’ is just as important as ‘what’, ‘where’ and ‘when’.

Our hands and feet can root us in the world and connect us to each other. Some people will choose to continue treatment when their symptoms become severe, but others couldn’t imagine life with long-term peripheral neuropathy.

“I’ve treated a concert pianist, and they’re exquisitely sensitive about their finger movements,” says Siu. “With someone like that, we may mutually decide not to give a life-saving treatment and use an alternative, or to stop an effective drug early, because it could affect the most important part of their bodies.

“Sometimes you know the best drug to give, but you can’t give it, or you have to stop, because you’ve decided together that it’s too risky.

“It’s always such a tough decision. You can have a patient who’s experiencing a treatment response, which seems to be deepened with every cycle, and then all of a sudden you have no choice but to stop. You don’t want to make the wrong decision that will change the longevity of the patient. But, at the same time, I have to tell them that the neuropathy is only going to get worse if I continue.

“We can’t reverse time. The only thing we can do is let time heal. It does get better somewhat. But it’s not fast. And it’s not complete.”

The toxicities challenge

As well as being a senior oncologist, clinical trial director and professor of medicine in Toronto, Canada, Siu is also one of the newest members of the Cancer Grand Challenges Scientific Committee.

Cancer Grand Challenges, the global funding initiative we co-founded with the US National Cancer Institute in 2020, brings together research teams from around the world to take on the biggest problems in cancer research. Chemotherapy-induced neurotoxicities and neuropathies was one of the 9 new challenges announced in March this year.

Teams with the vision and expertise to uncover more about the processes behind issues like chemotherapy-induced peripheral neuropathy – and, ultimately, to help us understand how to prevent and treat it – have until 22 June 2023 to apply for funding of up to £20m ($25m). 

“We have such great knowledge of so many things, and peripheral neuropathy doesn’t seem to be insurmountable,” says Siu. “It’s fitting that it’s a Cancer Grand Challenge, because it can be so difficult for patients, and we have the knowledge in this century to overcome it. If it wasn’t already time, it’s time now.

“We may not have leveraged enough knowledge from biologists like Alison. We don’t talk about the blood-nerve barrier very much. There are probably insights there that we haven’t taken advantage of.”

Better treatments without compromises

Those insights are piling up. In their latest scientific paper, Lloyd’s team covered the ground of decades of studies into the BBB.

“We’ve defined the structure and control of the blood-nerve barrier – all the cell types that are involved, how they interact, how it can be regulated and why it’s a barrier. It took more than 10 years of development, but we’ve got a model that enables you to see how a barrier can be opened and closed.”

From here, scientists can tackle some of the most debilitating side-effects of cancer treatment, making chemotherapy a better option for everyone. We’re ready with the funding they need to make a difference – and the knowledge of why it’s so important.

“You have this kind of love-hate relationship with chemo,” says Andrea. “You acknowledge that it could save your life, but at the same time it can cause you its own set of problems. I understand and respect that that’s why some people don’t want it – they’d much rather protect their quality of life.”

We’re with Andrea, and everyone else like her, whatever treatment decision they make. Our job is helping tip the balance. Beating cancer means making sure as many people as possible can get the best quality treatment while living their lives the way they choose.

“If chemotherapy didn’t have these side effects, it would be welcomed by so many more people,” says Andrea. And the more people we can treat, the more time we can give.

Tim

Andrea and her children
Andrea with her children at her daughter's Communion.

    Comments

  • Rita Apgar
    17 November 2023

    I really identified with what Judith had to say about how her life changed so drastically. I was even almost a rager til I was 75. I organized, introduced people, never missed a party, cooked and served dinners on our terrace in the summer for even 12 at the table. Now I’m 79 and in July blam all of a sudden something was wrong and it seemed pancreas. But in September came the diagnosis of nonHodgkins lymphoma and yesterday I had the first part of my 3rd cycle of chemio. The first was so strong that it landed me in the hospital, I was so debilitated. Now I am leading the life that Judith describes. I live in Liguria Italy and the sea has been so much a part of my life. Now it makes me sad as the near future is so uncertain. I didn’t realize how serious was losing sensation in my fingertips which was caused by the firstblast of chemo but now it has dawned on me, researching on the net and this excellent forum that as it is at present, never for a moment not feeling this neuropathy which I hope will not worsen as the prospect of living with it as it is now is hard to accept.And of course the rest and now that cold season is in in the tiny village where I live, somedays I just stay on the couch, no energy soothingly weighed down by my cats. Food? Gotta eat, always a weird kind of hungry and nothing satisfies. Getting out is the appointments related to this which has befallen!

  • Bernie Humphrey
    2 November 2023

    I’m 62 and I’ve had CIPN for nearly 10 years now after treatment for Stage 4 colon cancer in 2013/2014 which I’ve had to adapt my life to work around as much as possible – but the important thing is I’m still alive. I don’t think I would be without the cocktail of chemo, radio and surgery.
    At first it was mainly my feet, then hands, then all over my whole body. My hands soon improved after chemo but if I stepped on a small pebble it felt like a shard of glass. My wife found out about bamboo socks which I wear in bed every night and they do make an amazing difference.
    The ongoing symptom I have is that any exposed skin feels `cold’ and very slightly painful below ~22degC; arms, legs, ears, nose – but when I touch them they’re warm so it’s not a lack of circulation.
    It’s good that CIPN has now been recognised as significant for survivors because it is a life-limiter – and let’s face it a lot of people like me weren’t expected to survive long enough for it to be a problem.
    When I read through what the damage was (protection around nerve endings burned away) and talked to my oncologist & GP it helped to come to terms with the fact it’s irreversible. So even though it affects my life for most of the year in the UK because my skin is telling me I’m uncomfortably cold I’m still looking for other ways to reduce the impact on my life that doesn’t involve:
    1) wearing an all-over body stocking for most of the year – too weird
    2) taking a medication that claims to blunt the symptoms

  • Jenni Stringleman
    25 October 2023

    I really feel sad fpr the many of you who are suffering. I’ve just had 4 cycles out of 6, fpr low grade serous ovarian. I’m on carbo/plax which has a high rate of neuropathy..tto help attempt to minimize the damage (I’m an artist) I use a good neuropathy cream Neuropy hemp rescue balm from the UK. It’s not cheap but last night my neuropathy showed as incredibly itchy palms and soled and two panadol amd some cream later I was ok again.. Also, for the first time ever I’m doing acupuncture. You need a brilliant one but I feel its helping. I definitely have numb tingly ringers then palms, soles then calves. But it’s not yet getting too unbearable. You have to try for yourself but even my oncologist said she’s read good things about it!

  • Eric Maus
    6 October 2023

    Seven years ago i was diagnosed with stage 3/4 myxoid liposarcoma, went through chemo, radiation, and two surgeries. My neuropathy started during my second to last round and progressed after chemo was done. I have been on SSRi’s, opioids, and have had a spinal stimulator put in. I still have chronic pain that’s not very controlled. My body produces lots of scar tissue so its surrounding the leads on the stimulator, thus making it work less efficiently. I have one of the newest stimulators, and it has given me about 10% reduction in non acute pain. I have noticed over the years that stress/anxiety greatly effect my neuropathy. I have it in both feet and both hands, its enough to drive you crazy!

  • Kathleen Clark
    26 September 2023

    I was diagnosed in 2021 with carcinoma breast cancer stage two. I was fortunate it did not travel to my lymph nodes. I had to keep the cancer in me as I did my chemotherapy for 14 months, as well as radiation for one month. Now I am experiencing neuropathy in my feet and legs cramping up at night during the day. My hands are also feeling very tight as well as my fingers. Before I was diagnosed at age 68, now 70 years old. I was in very good shape very healthy. Chemotherapy really did its job on me. I thank the good Lord above who is Jesus that got me this far and my family, I am doing research to figure out how I can at least help myself. The articles above were very helpful. I am so thankful that I am still living. I take each day one day at a time. I fill my mind with prayer and Positive thoughts. We all must forge ahead and don’t look back.
    Thank you so very much.

  • Linda Paterson
    14 September 2023

    I had stage 3 bowel cancer 6 years ago and had 8 sessions of Capecitibine and only 4 sessions of iv Oxaliplatin due to the terrible side effects I had and which got worse at each iv session. The Oxaliplatin was stopped at my request as at the last session the side effects were so bad. I started with peripheral neuropathy when having chemo and this has gradually got worse. My hands and feet and sometimes face tingle all the time and I now have problems with walking. I drop things all the time and have problems picking small things up. My fingers have now started to hurt when trying to open jars etc. I am very upset about this and worry what may happen in the future. My GP has just referred me to Podiatry. The chemo has also affected my bladder, gums and eyesight. I was diagnosed with slight cataracts a year after finishing chemo and have terrible fatigue and aged quite quickly. I regret taking this drug.

  • Mike Kriz
    13 September 2023

    I had stage 2 colon cancer for which I had 10 inches of sigmoid removed with a loop ileostomy that was reversed a year later thank God. I underwent 5 weeks of 5 FU then 8 treatments of FOLFOX (including oxaliplatin) before tingling and numbness persisted from treatment to treatment (each treatment was a fusion then a pump for 3 days followed by 11 days without). I am a manual physical therapist so sensitivity in my hands is extremely important. Chemotherapy ended 15 months ago and I no longer have symptoms in my hands and fingers and the severity of the symptoms in my feet varies from day to day and has definitely waned from its peak. My symptoms include reduced sensation, although I do still sense light touch and pressure and at its worst I feel like I am walking on bubble wrap covered with a thin layer of sand. I work on balance daily and mobilize my toes to keep them supple. I don’t know that I will ever be free of foot symptoms but I am thankful that I have no symptoms in my hands. For those of you who still have numbness in your feet, it is imperative to work on balance every single day without fail. Trying to stand on one foot for 30 seconds a few times a day will help. Also spending time without shoes and socks on your feet sot that you can fully feel the floor would be helpful to retrain the nervous system, to whatever extent it is possible. Also, make certain to drink enough water. One of the books I read while recovering was entitled “The Body’s May Cries for Water”. The author, a physician, treats a variety of disease processes with water citing that most of us are chronically dehydrated. Cells that lack sufficient water do not function efficiently and our bodily processes, including healing are impeded by inadequate water intake. I am certain that drinking enough water has helped me to recover as well as I have. Be certain to have you vitamin B levels monitored as sufficient levels help to promote healing of peripheral nerves.

  • Silvia
    10 September 2023

    I read all these comments but was most toched by judith’s. I too wonder who I am. I am a new person aftr hving cancr, surgery, chemo, and radiation. I can’t believe that neuropathy cannot be cured. I suffer it somewhat in my hands but very badly when I walk. I live in Manhattan and love to walk. But now I find myself leaning aginst buiildings because of fatigue and having people ask me if I am okay. A year and 3 or 4 months ago I was the happiest prson ever. Never sick except for having my gall bladder out. Went to the gym 3x a week for silver sneakers classes. Danced every chance i got. But now I just sit home and sleep more than I should. Cancr-free thank God But not feeling alive!.

  • Paul Bartlett
    10 September 2023

    I undertook 7 cycles of chemotherapy: Oxalyplatin and Capecitabine tablets, followed by radiotherapy. Treatment for my stage 3/4 bowel cancer ended in January 2023 and following scans and investigations the tumour was no longer present in my bowel. Whilst this is fantastic news, I quickly developed chemotherapy induced peripheral neuropathy. To date I have constant pins and needles in both hands and feet, can’t hold items securely: cutlery, plates or cups or fast on buttons on shirts trousers. Can’t walk any distance without a stick, have trouble driving and as such have ceased this activity over the last 4 months.
    I’m eternally grateful to have been given the opportunity to undertake treatment but the ‘CIPN’ is debilitating and has reduced my ability to self care, socially interact etc.
    I’m enlightened by continued research into ‘CIPN’ and live in hope my symptoms will dissipate over time, their constant at the moment with no change in presentation.

  • Rick O'Brien
    6 September 2023

    I am a 65 year old male in relatively decent heath who had Colon cancer diagnosis back in 2019 , stage 4 .
    My treatment was the usual chemo , radiation,and surgery to remove tumor. The surgery was successful,and I’m cancer free as of now, Sept.,2023. The problem is , my neuropathy didn’t start till about a year ago , and is getting more prominent . Thankfully , it only effects my feet so far ,. and is worse if I sit even for a short period , and when I stand , my feet are in pain until I take a few steps .If it progresses any further , walking during work ,.will get to be a job killer. Hopefully , these dedicated doctors will find a solution for people like me .

  • Judith
    14 August 2023

    I finished 7 months of chemo sitting in that chair for 5 hours each time, it was not until the last treatment I was found to have CIPN which has affected my feet and hands. Now it is over a year later and the tingling and numbness has increased in my hands particularly at night and then my entire right side of my body from my hip down to my feet. I at times do not even realize I have lost my slipper or shoe and also not aware is my sock is on or off. I was happy to have found this site today knowing that someone is seriously attempting to combat this. I am tired so much of the time, along with chemo brain fog, that causes me to have words come out incorrectly or I forget them altogether. Light headed an dizzy much of the time, can no longer drive, nor attempt to do tasks which I once could do so easily. I am not one to get depressed but lately it is hitting me on a more regular basis as these symptoms appear to increase and cling to my body. I have become a hermit in all aspects and once was a joyful multi-tasker spinning through any given day. Difficulty going up and down the stairs, house cleaning, etc. My social outings are now compiled of medical visits. My joy is my little Yorkie and going out into my gardens on days when I can tend to them. I cry more than I ever once did. I know I am fortunate to still be here my cancer was high grade stage three endometrial serous carcinoma, surgery took out a large tumor with the total hysterectomy, and radiation came after for three targeted times. Most of my days comprise of sitting at this computer where I now type words to those I do not know. I pray researchers shall find the golden key for this CIPN that weaves through our bodies. Every 3 months I go for cat scans w/contrast and every month labs and port flushes. I know the chemo kill those pesky cancer cells, but now I feel I am a changed woman one I often no longer recognize. It took away the cancer cells but left me with a body no longer filled with joy, a spirited life. My hair was lost and came back in stringy straight bald spotted ways, I grew old before I was ready to. I also no longer wish to befriend people, spend time with them, etc. I do write to some via email or facebook and a few family members who live far away via a lap top my son sent me. My days now are mostly all the same from early morning to closing down at night, no surprises, no adventures, no spontenaity. I leave you now with all my thoughts it is a gift to read what all of you have been going through as my started during covid and groups to gather were not allowed in the hospital as they once were for cancer patients. Stay strong, add as much sunshine as you can to this journey, and do not be afraid to reach out to others should you feel the need.

  • Penelope Day
    6 July 2023

    Thank you for this information. It has helped me to understand more fully some of the side effects of the drugs I have been on. I am due to change to a new combination of drugs soon and hope that CIPN will be reduced. Hopefully our fantastic research scientists will eventually breakthrough with a drug that can remove this very unpleasant side effect of these life saving drugs.

  • Alan Davies
    5 July 2023

    Excellent article. I was diagnosed with Mild axonal peripheral neuropathy twenty years ago (idiopathic, as it was not caused by diabetes, chemo or alcohol. Hopefully this valuable research will extend to helping people with various forms of neuropathy. My neuropathy is now classed as Severe, I can only drive my car with hand controls and need a wheelchair a lot of the time. Researchers in America are working hard to find a solution for neuropathy and the damaged nerve endings but funding is always the problem.

  • Mrs Eileen Cooke
    5 July 2023

    A very informative article. My sister has experienced this condition of numbness in her hands and feet after receiving chemotherapy. I had chemotherapy 23 years ago for breast cancer and also felt numbness in my fingers. It did not last fortunately. Hopefully, research will be successful in finding a remedy.

  • Penny Dussek
    5 July 2023

    A very enlightening article and Andrea should be commended for speaking out about her awful symptoms in her feet. The more people know and talk about, the more the scientists can change drugs and try new approaches.

  • Ken Murishwar
    5 July 2023

    I was diagnosed with Oesophageal Cancer in September 2021. At the age 69 then, the Oncology Team felt the best way to eradicate it was to cut out the affected area. This would’ve entailed extensive surgery but my body was not strong enough to undertake it. One of the alternative options was to remove the Mucosa layer that was affected. However the MDT decided it was best for me to have Chemo& Radiotherapy. Little did I know how this would cause CIPN. This was not adequately explained to me and I was not given the choice. In the event, the treatment was not 100% effective and as a result it was decided that in October 2022 I did undergo surgery to Endoscopicaly remove my Barretts and the Mucosa and Sub-Mucosa layers. In the meantime and since then my CIPNnhas continued to get worse, to the point that it affects my ability to sleep, my mobility is severly impaired as the CIPN in my feet has made walking any more than ten to twenty yards quite difficult. Even Driving an automatic car for more than half an hour is mostly out of the question.
    CIPN has also affected the sensitivity in both hands and things slip out of my grasp. I now have to be very careful when I lift or hold anything.
    My question is: Can anything be done to reverse the effects?

  • Mrs. Christine Southern
    4 July 2023

    I was very interested to read about chemotherapy and the side effects of neuropathy. I have been cancer free for over 8years now, having had colon cancer. I have been left with neuropathy in my hands and feet, and do you believe research will ever find a cure to mend the nerve endings.

  • David Leavesley
    4 July 2023

    Incredibly informative and as a sufferer of CIPN, I can empathise with Andrea and others. My own treatment for bowel cancer involved the drugs forming FOLFOX (the OX is oxaliplatin) and I managed 11 out of 12 sessions before the PN was excessive. Thank God and brainy scientists for studies like this, that give so much hope for the future.

  • Jane GIFFOULD
    4 July 2023

    I have peripheral neuropathy and find it a nuisance. It started in 2017 with my first set of chemo. When I complained about it my dose was reduced. In that way it stopped from getting to my hands. I understand Andrea losing her flip flop. I have had the same problems round the house. At times I have the opposite, it feels like I have crumpled socks on, I look down and see I am bare footed! I make my feet do things like pick up my socks from the floor to try and counteract the CPN. It helps. However when I go to bed it is difficult to find a comfortable position due to the CPN, especially when lying on my left side as it then affects my left arm as well. When my cancer had the cheek to metastasise the CPN was taken into consideration and the chemo in 2021 was changed. Now I am on Letrozole which is keeping the cancer stable. The CPN continues but hopefully is not getting worse, except when I am tired.

  • David Hebden
    4 July 2023

    A fascinating read and hugely relevant to my current cancer treatment. I’ve just had my 9th cycle of chemo including oxaliplatin. I can feel the effect on my nerves increasing rapidly. The team treating me, who have been fantastic, have explained carefully the balance between peripheral neuropathy and chemo treatment. Personally ,obviously I want the treatment to succeed, but I’m not sure I want to cope with permanent intrusive nerve damage. It’s the dilemma causing me most concern at the moment.

  • Tricia Bowler
    4 July 2023

    Having been through two different cancers and different chemotherapy drugs , I still experience neuropathy and can be cold in the feet both in winter and summer. It would be good if another drug could be found.

    Comments

  • Rita Apgar
    17 November 2023

    I really identified with what Judith had to say about how her life changed so drastically. I was even almost a rager til I was 75. I organized, introduced people, never missed a party, cooked and served dinners on our terrace in the summer for even 12 at the table. Now I’m 79 and in July blam all of a sudden something was wrong and it seemed pancreas. But in September came the diagnosis of nonHodgkins lymphoma and yesterday I had the first part of my 3rd cycle of chemio. The first was so strong that it landed me in the hospital, I was so debilitated. Now I am leading the life that Judith describes. I live in Liguria Italy and the sea has been so much a part of my life. Now it makes me sad as the near future is so uncertain. I didn’t realize how serious was losing sensation in my fingertips which was caused by the firstblast of chemo but now it has dawned on me, researching on the net and this excellent forum that as it is at present, never for a moment not feeling this neuropathy which I hope will not worsen as the prospect of living with it as it is now is hard to accept.And of course the rest and now that cold season is in in the tiny village where I live, somedays I just stay on the couch, no energy soothingly weighed down by my cats. Food? Gotta eat, always a weird kind of hungry and nothing satisfies. Getting out is the appointments related to this which has befallen!

  • Bernie Humphrey
    2 November 2023

    I’m 62 and I’ve had CIPN for nearly 10 years now after treatment for Stage 4 colon cancer in 2013/2014 which I’ve had to adapt my life to work around as much as possible – but the important thing is I’m still alive. I don’t think I would be without the cocktail of chemo, radio and surgery.
    At first it was mainly my feet, then hands, then all over my whole body. My hands soon improved after chemo but if I stepped on a small pebble it felt like a shard of glass. My wife found out about bamboo socks which I wear in bed every night and they do make an amazing difference.
    The ongoing symptom I have is that any exposed skin feels `cold’ and very slightly painful below ~22degC; arms, legs, ears, nose – but when I touch them they’re warm so it’s not a lack of circulation.
    It’s good that CIPN has now been recognised as significant for survivors because it is a life-limiter – and let’s face it a lot of people like me weren’t expected to survive long enough for it to be a problem.
    When I read through what the damage was (protection around nerve endings burned away) and talked to my oncologist & GP it helped to come to terms with the fact it’s irreversible. So even though it affects my life for most of the year in the UK because my skin is telling me I’m uncomfortably cold I’m still looking for other ways to reduce the impact on my life that doesn’t involve:
    1) wearing an all-over body stocking for most of the year – too weird
    2) taking a medication that claims to blunt the symptoms

  • Jenni Stringleman
    25 October 2023

    I really feel sad fpr the many of you who are suffering. I’ve just had 4 cycles out of 6, fpr low grade serous ovarian. I’m on carbo/plax which has a high rate of neuropathy..tto help attempt to minimize the damage (I’m an artist) I use a good neuropathy cream Neuropy hemp rescue balm from the UK. It’s not cheap but last night my neuropathy showed as incredibly itchy palms and soled and two panadol amd some cream later I was ok again.. Also, for the first time ever I’m doing acupuncture. You need a brilliant one but I feel its helping. I definitely have numb tingly ringers then palms, soles then calves. But it’s not yet getting too unbearable. You have to try for yourself but even my oncologist said she’s read good things about it!

  • Eric Maus
    6 October 2023

    Seven years ago i was diagnosed with stage 3/4 myxoid liposarcoma, went through chemo, radiation, and two surgeries. My neuropathy started during my second to last round and progressed after chemo was done. I have been on SSRi’s, opioids, and have had a spinal stimulator put in. I still have chronic pain that’s not very controlled. My body produces lots of scar tissue so its surrounding the leads on the stimulator, thus making it work less efficiently. I have one of the newest stimulators, and it has given me about 10% reduction in non acute pain. I have noticed over the years that stress/anxiety greatly effect my neuropathy. I have it in both feet and both hands, its enough to drive you crazy!

  • Kathleen Clark
    26 September 2023

    I was diagnosed in 2021 with carcinoma breast cancer stage two. I was fortunate it did not travel to my lymph nodes. I had to keep the cancer in me as I did my chemotherapy for 14 months, as well as radiation for one month. Now I am experiencing neuropathy in my feet and legs cramping up at night during the day. My hands are also feeling very tight as well as my fingers. Before I was diagnosed at age 68, now 70 years old. I was in very good shape very healthy. Chemotherapy really did its job on me. I thank the good Lord above who is Jesus that got me this far and my family, I am doing research to figure out how I can at least help myself. The articles above were very helpful. I am so thankful that I am still living. I take each day one day at a time. I fill my mind with prayer and Positive thoughts. We all must forge ahead and don’t look back.
    Thank you so very much.

  • Linda Paterson
    14 September 2023

    I had stage 3 bowel cancer 6 years ago and had 8 sessions of Capecitibine and only 4 sessions of iv Oxaliplatin due to the terrible side effects I had and which got worse at each iv session. The Oxaliplatin was stopped at my request as at the last session the side effects were so bad. I started with peripheral neuropathy when having chemo and this has gradually got worse. My hands and feet and sometimes face tingle all the time and I now have problems with walking. I drop things all the time and have problems picking small things up. My fingers have now started to hurt when trying to open jars etc. I am very upset about this and worry what may happen in the future. My GP has just referred me to Podiatry. The chemo has also affected my bladder, gums and eyesight. I was diagnosed with slight cataracts a year after finishing chemo and have terrible fatigue and aged quite quickly. I regret taking this drug.

  • Mike Kriz
    13 September 2023

    I had stage 2 colon cancer for which I had 10 inches of sigmoid removed with a loop ileostomy that was reversed a year later thank God. I underwent 5 weeks of 5 FU then 8 treatments of FOLFOX (including oxaliplatin) before tingling and numbness persisted from treatment to treatment (each treatment was a fusion then a pump for 3 days followed by 11 days without). I am a manual physical therapist so sensitivity in my hands is extremely important. Chemotherapy ended 15 months ago and I no longer have symptoms in my hands and fingers and the severity of the symptoms in my feet varies from day to day and has definitely waned from its peak. My symptoms include reduced sensation, although I do still sense light touch and pressure and at its worst I feel like I am walking on bubble wrap covered with a thin layer of sand. I work on balance daily and mobilize my toes to keep them supple. I don’t know that I will ever be free of foot symptoms but I am thankful that I have no symptoms in my hands. For those of you who still have numbness in your feet, it is imperative to work on balance every single day without fail. Trying to stand on one foot for 30 seconds a few times a day will help. Also spending time without shoes and socks on your feet sot that you can fully feel the floor would be helpful to retrain the nervous system, to whatever extent it is possible. Also, make certain to drink enough water. One of the books I read while recovering was entitled “The Body’s May Cries for Water”. The author, a physician, treats a variety of disease processes with water citing that most of us are chronically dehydrated. Cells that lack sufficient water do not function efficiently and our bodily processes, including healing are impeded by inadequate water intake. I am certain that drinking enough water has helped me to recover as well as I have. Be certain to have you vitamin B levels monitored as sufficient levels help to promote healing of peripheral nerves.

  • Silvia
    10 September 2023

    I read all these comments but was most toched by judith’s. I too wonder who I am. I am a new person aftr hving cancr, surgery, chemo, and radiation. I can’t believe that neuropathy cannot be cured. I suffer it somewhat in my hands but very badly when I walk. I live in Manhattan and love to walk. But now I find myself leaning aginst buiildings because of fatigue and having people ask me if I am okay. A year and 3 or 4 months ago I was the happiest prson ever. Never sick except for having my gall bladder out. Went to the gym 3x a week for silver sneakers classes. Danced every chance i got. But now I just sit home and sleep more than I should. Cancr-free thank God But not feeling alive!.

  • Paul Bartlett
    10 September 2023

    I undertook 7 cycles of chemotherapy: Oxalyplatin and Capecitabine tablets, followed by radiotherapy. Treatment for my stage 3/4 bowel cancer ended in January 2023 and following scans and investigations the tumour was no longer present in my bowel. Whilst this is fantastic news, I quickly developed chemotherapy induced peripheral neuropathy. To date I have constant pins and needles in both hands and feet, can’t hold items securely: cutlery, plates or cups or fast on buttons on shirts trousers. Can’t walk any distance without a stick, have trouble driving and as such have ceased this activity over the last 4 months.
    I’m eternally grateful to have been given the opportunity to undertake treatment but the ‘CIPN’ is debilitating and has reduced my ability to self care, socially interact etc.
    I’m enlightened by continued research into ‘CIPN’ and live in hope my symptoms will dissipate over time, their constant at the moment with no change in presentation.

  • Rick O'Brien
    6 September 2023

    I am a 65 year old male in relatively decent heath who had Colon cancer diagnosis back in 2019 , stage 4 .
    My treatment was the usual chemo , radiation,and surgery to remove tumor. The surgery was successful,and I’m cancer free as of now, Sept.,2023. The problem is , my neuropathy didn’t start till about a year ago , and is getting more prominent . Thankfully , it only effects my feet so far ,. and is worse if I sit even for a short period , and when I stand , my feet are in pain until I take a few steps .If it progresses any further , walking during work ,.will get to be a job killer. Hopefully , these dedicated doctors will find a solution for people like me .

  • Judith
    14 August 2023

    I finished 7 months of chemo sitting in that chair for 5 hours each time, it was not until the last treatment I was found to have CIPN which has affected my feet and hands. Now it is over a year later and the tingling and numbness has increased in my hands particularly at night and then my entire right side of my body from my hip down to my feet. I at times do not even realize I have lost my slipper or shoe and also not aware is my sock is on or off. I was happy to have found this site today knowing that someone is seriously attempting to combat this. I am tired so much of the time, along with chemo brain fog, that causes me to have words come out incorrectly or I forget them altogether. Light headed an dizzy much of the time, can no longer drive, nor attempt to do tasks which I once could do so easily. I am not one to get depressed but lately it is hitting me on a more regular basis as these symptoms appear to increase and cling to my body. I have become a hermit in all aspects and once was a joyful multi-tasker spinning through any given day. Difficulty going up and down the stairs, house cleaning, etc. My social outings are now compiled of medical visits. My joy is my little Yorkie and going out into my gardens on days when I can tend to them. I cry more than I ever once did. I know I am fortunate to still be here my cancer was high grade stage three endometrial serous carcinoma, surgery took out a large tumor with the total hysterectomy, and radiation came after for three targeted times. Most of my days comprise of sitting at this computer where I now type words to those I do not know. I pray researchers shall find the golden key for this CIPN that weaves through our bodies. Every 3 months I go for cat scans w/contrast and every month labs and port flushes. I know the chemo kill those pesky cancer cells, but now I feel I am a changed woman one I often no longer recognize. It took away the cancer cells but left me with a body no longer filled with joy, a spirited life. My hair was lost and came back in stringy straight bald spotted ways, I grew old before I was ready to. I also no longer wish to befriend people, spend time with them, etc. I do write to some via email or facebook and a few family members who live far away via a lap top my son sent me. My days now are mostly all the same from early morning to closing down at night, no surprises, no adventures, no spontenaity. I leave you now with all my thoughts it is a gift to read what all of you have been going through as my started during covid and groups to gather were not allowed in the hospital as they once were for cancer patients. Stay strong, add as much sunshine as you can to this journey, and do not be afraid to reach out to others should you feel the need.

  • Penelope Day
    6 July 2023

    Thank you for this information. It has helped me to understand more fully some of the side effects of the drugs I have been on. I am due to change to a new combination of drugs soon and hope that CIPN will be reduced. Hopefully our fantastic research scientists will eventually breakthrough with a drug that can remove this very unpleasant side effect of these life saving drugs.

  • Alan Davies
    5 July 2023

    Excellent article. I was diagnosed with Mild axonal peripheral neuropathy twenty years ago (idiopathic, as it was not caused by diabetes, chemo or alcohol. Hopefully this valuable research will extend to helping people with various forms of neuropathy. My neuropathy is now classed as Severe, I can only drive my car with hand controls and need a wheelchair a lot of the time. Researchers in America are working hard to find a solution for neuropathy and the damaged nerve endings but funding is always the problem.

  • Mrs Eileen Cooke
    5 July 2023

    A very informative article. My sister has experienced this condition of numbness in her hands and feet after receiving chemotherapy. I had chemotherapy 23 years ago for breast cancer and also felt numbness in my fingers. It did not last fortunately. Hopefully, research will be successful in finding a remedy.

  • Penny Dussek
    5 July 2023

    A very enlightening article and Andrea should be commended for speaking out about her awful symptoms in her feet. The more people know and talk about, the more the scientists can change drugs and try new approaches.

  • Ken Murishwar
    5 July 2023

    I was diagnosed with Oesophageal Cancer in September 2021. At the age 69 then, the Oncology Team felt the best way to eradicate it was to cut out the affected area. This would’ve entailed extensive surgery but my body was not strong enough to undertake it. One of the alternative options was to remove the Mucosa layer that was affected. However the MDT decided it was best for me to have Chemo& Radiotherapy. Little did I know how this would cause CIPN. This was not adequately explained to me and I was not given the choice. In the event, the treatment was not 100% effective and as a result it was decided that in October 2022 I did undergo surgery to Endoscopicaly remove my Barretts and the Mucosa and Sub-Mucosa layers. In the meantime and since then my CIPNnhas continued to get worse, to the point that it affects my ability to sleep, my mobility is severly impaired as the CIPN in my feet has made walking any more than ten to twenty yards quite difficult. Even Driving an automatic car for more than half an hour is mostly out of the question.
    CIPN has also affected the sensitivity in both hands and things slip out of my grasp. I now have to be very careful when I lift or hold anything.
    My question is: Can anything be done to reverse the effects?

  • Mrs. Christine Southern
    4 July 2023

    I was very interested to read about chemotherapy and the side effects of neuropathy. I have been cancer free for over 8years now, having had colon cancer. I have been left with neuropathy in my hands and feet, and do you believe research will ever find a cure to mend the nerve endings.

  • David Leavesley
    4 July 2023

    Incredibly informative and as a sufferer of CIPN, I can empathise with Andrea and others. My own treatment for bowel cancer involved the drugs forming FOLFOX (the OX is oxaliplatin) and I managed 11 out of 12 sessions before the PN was excessive. Thank God and brainy scientists for studies like this, that give so much hope for the future.

  • Jane GIFFOULD
    4 July 2023

    I have peripheral neuropathy and find it a nuisance. It started in 2017 with my first set of chemo. When I complained about it my dose was reduced. In that way it stopped from getting to my hands. I understand Andrea losing her flip flop. I have had the same problems round the house. At times I have the opposite, it feels like I have crumpled socks on, I look down and see I am bare footed! I make my feet do things like pick up my socks from the floor to try and counteract the CPN. It helps. However when I go to bed it is difficult to find a comfortable position due to the CPN, especially when lying on my left side as it then affects my left arm as well. When my cancer had the cheek to metastasise the CPN was taken into consideration and the chemo in 2021 was changed. Now I am on Letrozole which is keeping the cancer stable. The CPN continues but hopefully is not getting worse, except when I am tired.

  • David Hebden
    4 July 2023

    A fascinating read and hugely relevant to my current cancer treatment. I’ve just had my 9th cycle of chemo including oxaliplatin. I can feel the effect on my nerves increasing rapidly. The team treating me, who have been fantastic, have explained carefully the balance between peripheral neuropathy and chemo treatment. Personally ,obviously I want the treatment to succeed, but I’m not sure I want to cope with permanent intrusive nerve damage. It’s the dilemma causing me most concern at the moment.

  • Tricia Bowler
    4 July 2023

    Having been through two different cancers and different chemotherapy drugs , I still experience neuropathy and can be cold in the feet both in winter and summer. It would be good if another drug could be found.