Chemotherapy-Induced Peripheral Neuropathy: Symptoms, Safety, and Recovery

Have burning, electric shocks, tingling or numbness after chemo? Learn why and how to manage it.  https://bit.ly/3Nra074

We dive into a common but often overlooked side effect of chemotherapy: chemotherapy-induced peripheral neuropathy (CIPN). Up to 40% of cancer survivors who receive certain chemotherapy drugs experience tingling, numbness, pain, or weakness in their hands and feet. 

We’ll unpack which drugs are most likely to cause CIPN, why it happens, what symptoms to watch for, and how to manage or even improve function over time.

From medications to physical and occupational therapy, balance training, and lifestyle strategies, this episode offers evidence-based insights to help cancer survivors and caregivers better understand and cope with CIPN.

In this Episode:

• 00:00 - Intro: Understanding Chemotherapy-Induced Peripheral Neuropathy (CIPN)
• 02:07 - Marge Simpson and Santa's Little Helper's Visit to "The Pitt" ED
• 05:33 - What is Chemotherapy-Induced Peripheral Neuropathy (CIPN)
• 06:29 -  Why Chemo Causes Pins and Needles (The Science of Nerve Damage) 
• 09:11 - Is there Hope of Recovering from CIPN? Treatment Options and Lifestyle Considerations
• 13:40 - The Lived Experience of Chemotherapy-Induced Peripheral Neuropathy
• 20:54 - Outro

Resources: 

• Download our CIPN Symptoms & Safety Infographic Here 
• S5E34: How to Avoid Falls, the Leading Cause of Death for Older Adults (Discusses many of the fall mitigation steps that can help someone with peripheral neuropathy)
• S6E5: Understanding Cancer Treatment Options: Chemotherapy
• S1E03: What is Palliative Care? (Learn how palliative care envelops symptom management along a treatment path, such as chemotherapy side effects.)
• S4E37: A Family’s Perspective on Palliative Care – with Connie Baker
• S5E25: The Important Role of the Microbiome to Your Health and Immune Function (Good nutrition is important to neuron regeneration)
• S5E4: Inflammation: What it is, How It Causes Disease, and How You Can Decrease It
• All Cancer Topics (Everything You Wanted to Know About Cancer, But Didn’t Have Anyone to Ask)

Transcript

Hello and welcome to Everyone Dies. Relax and settle in for our podcast about serious illness, dying, death, and bereavement. Because even though everyone dies, no one must face it alone.

This week we're talking about something many cancer survivors experience after chemotherapy, chemotherapy-induced peripheral neuropathy, or CIPN for short. If you notice tingling, numbness, pain, or weakness in your hands or feet after treatment, you're not alone. Up to 40% of people who receive certain chemotherapy drugs develop these symptoms.

I'm Marianne Matzo, a nurse practitioner, and I use my experience from working as a nurse for 47 years to help answer your questions about what happens at the end of life. And I'm Charlie Navarrette, an actor in New York City, and here to offer an every-person viewpoint to our podcast. We're both here because we believe that the more you know, the better prepared you are to make difficult decisions.

Remember, this podcast does not provide medical nor legal advice. Please listen to the complete disclosure at the end of the recording. In the first half, Charlie has a report about Marge Simpson and her bond with her dog, Santa's Little Helper, and our recipe of the week.

In the second half, we're continuing our series, Everything You Always Wanted to Know About Cancer But Didn't Have Anyone to Ask, with a discussion about post-chemotherapy complication of peripheral neuropathy. I'll explain what this is, why it happens, and what you can do to stay safe and improve function and how to support nerve recovery over time. We'll also talk about meds, physical therapy, occupational therapy, balance training, and simple lifestyle steps that can make a real difference.

In the third half, Charlie has real-life people's descriptions of living with peripheral neuropathy. Charlie? Episode 800 of The Simpsons was released a month ago. Interviews with the executive producer, Mike Price, describes this episode of The Simpsons dealing with the prospects of loss, with Marge hoping to get the family dog, Santa's Little Helper, healthy.

He's gotten overweight and out of shape because of his family's overindulgences. Marge just wants Santa's Little Helper to be healthy so that she can have more time with him. Given that the episodes always have more than one thing going on, and because the show's writers are hooked on the HBO drama, The Pit, they worked out a way to get Marge and the dog to Pittsburgh for the episode to attend the dog show and focus on the relationship between Marge and the dog.

Except the dog eats some toxic food, ends up in the ER with Noah Wiley, Katherine Lanasza, and Taylor Dearden to voice the medical staff looking after the pup. So does Santa's Little Helper survive the food poisoning to make it to the dog show, or do the killers write him off? Ta-da! Spoiler alert! I'm going to answer that question. So if you haven't seen the episode by now, you are warned.

It turns out that in animated shows, everyone doesn't die. Who knew? There's been a lot of conversation lately about various characters on the show dying. But it's one thing to kill off Larry the Barfly, but killing off Santa's Little Helper would be the end of everything.

Price said that there was never going to be a world where it ended with the dog really dying or anything like that. There was an interview once with Michael Imperioli, who played Christopher on The Sopranos. He was a character who murdered people regularly, but in that one episode, when he was high on heroin, he sat on the couch and accidentally killed the dog by sitting on it.

And people on the street would yell at him, you killed the dog! And he's like, yeah, but I killed like 30 other guys. That doesn't matter, you know? You can't kill a dog. It's true.

You can't kill the dog. We can watch mass murder with Abandon, but end up in a mess of tears when we see the dog die in a movie. Santa's Little Helper survives another episode, or 800 as the case may be.

Our funeral lunch recipe, BLT Dip, not to be confused with the BTK Serial Killer, is always a hit. Whether served at a funeral lunch or formal dinner, it really tastes like a BLT. You can reduce calories by using low-fat or fat-free ingredients, but really, what's the point of that? Serve cold with crackers or chips.

Bon Appetit! Please go to our webpage for this week's recipe and additional resources for this program. This is the part where we ask for your financial support. Your tax-deductible gift will go directly to supporting our non-profit journalism so that we can remain accessible to everyone.

You can donate at www.everyonedies.org. That's every, the number one dies, dot org, or at our site on Patreon under Everyone Dies. Marianne? Thanks, Charlie. This week we're talking about chemotherapy-induced peripheral neuropathy.

This is a non-threatening symptom experienced by most cancer survivors who receive chemotherapy that is toxic to the nerves. To make this easier to listen to, I'm just going to say CIPN for chemotherapy-induced peripheral neuropathy, but know that that's what I mean. CIPN happens when certain chemotherapy drugs affect the nerves that carry signals between the brain, spinal cord, and the rest of the body, but especially the hands and feet.

About 30-40% of people taking chemotherapy will develop the symptom. The risk is higher in people previously exposed to chemotherapy, over 50 years old, heavy alcohol users, those who have liver or kidney insufficiency, and those with pre-existing neuropathies, like from diabetes. Not every chemotherapy drug causes neuropathy, but the most nerve-toxic ones are platinum-based drugs like cisplatin and axilloplatin, taxanes such as paclitaxel or doxataxel, and vincaloids like vincristine.

Other medications like portisumab or thalidomide, often used in blood cancers, can also affect the nerves. The risk of developing CIPN depends on the type, amount, and dose of chemotherapy received. When chemotherapy is infused into your body, the drug can affect every part of the body.

For example, hair can fall out, people get sick to their stomach, or their blood counts can fall. The effect on the nerves, called neurotoxicity, happens when the chemotherapy reaches the very small nerves, those in the hands and the feet, and damages them. Neuropathy starts with damage to the peripheral nerves.

Within the peripheral nervous system, the motor axons, those nerve fibers, are large and myelinated. Myelin is a protective layer that wraps around the neurons. This coating protects the nerve, provides insulation, energy efficiency for the signal traveling along the nerve, and increases conduction speed.

The sensory and autonomic axons are mostly small and unmyelinated, or very thinly myelinated. Symptoms vary depending on which nerves are affected. Symptoms are described as a stocking and glove effect.

The numbness and tingling of the hands and feet start at the toe or fingertips and move up, in the same way you would put on gloves or socks. If the sensory nerves are damaged, the symptoms are tingling, numbness, burning, or sharp pain in the hands and feet, balance problems, and unusual sensations called paresthesias, like cold or heat sensitivity, pain with touch, or pressure. If the motor nerves are affected, then we would see muscles and motion symptoms, such as foot drop, wrist drop, muscle weakness, and walking, and difficulty with fine motor skills, such as buttoning a shirt or holding a pen.

CIPN reduces quality of life, increasing the long-term risk of falls and the ability to function in your everyday life. It's highest within the first two years following exposure to chemotherapy, making it a common concern for recent cancer survivors. Recovery from CIPN is inconsistent.

Many people will experience improvement or even complete resolution of symptoms, but this is not guaranteed. A good thing about nerves is that they can restore themselves. This can take a year to occur, but for other people, it may never happen.

Individual factors, such as age and any pre-existing nerve conditions, like diabetes, can also impact recovery. Older people, for example, may have a lower chance of complete recovery. Improvement can begin weeks or months after chemotherapy, but for some, it can take years for noticeable changes.

Nerve regeneration is a slow process occurring at approximately a millimeter per month. Unfortunately, there are no protocols for treatment that have proven effective for most people having symptoms. That leaves us with possibilities for treatment that we could use and continue if they work or move on to other treatments if they don't.

Medicines that we use are venlafaxine, duloxetine, gabapentin, pregambalin, tramadol, tricyclic antidepressants, or lidocaine patches. Non-pharmacological therapies include acupuncture, electrical stimulation therapies, like those TENS units you see, spinal cord stimulation, and near-infrared photoenergy. Therapeutic interventions aimed at improving balance typically involve progressive task training, starting with stationary standing activities on firm and hard surfaces, and then advancing to still standing coupled with simple manipulation activities.

For example, holding a glass of water, passing a basketball, and then on to walking on different surfaces, and finally to walking coupled with simple manipulation activities. Occupational therapy can help with fine motor skills, like buttoning shirts or writing, which are often affected by hand neuropathy. There is a high fall risk with peripheral neuropathy.

Be sure to look at your feet before you start to walk. Let your eyes help you see where they are in relation to the rest of your body, so that you don't trip or fall over. Well-fitting shoes with socks are important to be worn whenever you are walking.

Treatments aimed at reducing fall risk typically include lower extremity strengthening exercises and gait training, combined with balance training, and issuing of assistant devices when needed. Now, we have a couple of good shows on preventing falls, so I'd suggest you listen to those, because those have some really good tips to help you with this too. Education regarding issues such as recognizing potential environmental hazards, performing necessary home and environmental modifications, like removing throw rugs, installing adequate lighting, and maximizing visual contrast and paying attention when in an unfamiliar environment are important.

For people with CIPN who also have thinking, visual, or hearing problems, caregiver education is important. Muscular skeletal therapies, strengthening range of motion activities, environmental modification, teaching energy conservation techniques, and providing adaptive equipment are also included in the rehab for this. A balanced anti-inflammatory diet rich in whole grains, leafy grains, healthy fats, and lean protein can help support healing.

Regular light activity, like walking or gentle stretching, also boosts circulation and helps keep joints and muscles active, even if nerves aren't fully working. CIPN presents numerous challenges. It can lead to dose reductions in chemotherapy and can significantly affect quality of life.

Treatment options for CIPN remain limited despite numerous research trials reviewing the benefit of different medications and treatment strategies. It can be hard to explain to somebody what this feels like, and Charlie in the third half is going to present some findings from a research study where they sought to do just that. Charlie? Despite how common chemotherapy-induced peripheral neuropathy is, people who have not had chemotherapy often have difficulty understanding the effect it can have on a person.

A 2023 study by Kim and Hong aimed to understand the experience of cancer survivors, in their own words, with chemotherapy-induced peripheral neuropathy, and I am going to share some of their findings with you. The researchers categorized the themes of responses about symptoms from people living with cancer. They reported that peripheral neuropathy was an unfamiliar and uncomfortable symptom that these people had never experienced.

They had to endure weird and unpleasant, and felt fatigued due to the unpredictable symptoms. Here are some direct quotes. I have the tingling in my face, too.

I'm worried. Is it another heart attack? It goes in my arms and my face. You really don't know what you're dealing with.

I think it was the feeling that made me frightened, that it might come back, and that ruined a bit of the rest of the time. You learn to live with this unpleasant feeling in the hands and feet. Peripheral neuropathy had a significant impact on people's overall lives and interfered with their daily lives.

Their body movements were restricted, and performing once simple daily tasks became challenging. They were frustrated or lost confidence because of their limited body movements. These changes affected their social activities and hobbies and their deteriorating physical functions made their daily life difficult.

Further quotes. Now I can dress myself. In the beginning, I could not get dressed or undressed because of the pain in my fingers.

I usually open a coin purse to pay with coins in supermarkets, but I cannot take the coins out of the purse anymore due to the numbness, and have to ask the cashier to take the coins himself, saying, sorry, please take the appropriate amount of money. Since the chemotherapy, my fingers feel numb, as do my toes. When I get up in the morning, my fingers are all numb.

When I brush my teeth, my first three fingers get more numb, and then I usually stop for four or five seconds and resume brushing my teeth again. There are impacts. When I sewed trousers, I could finish the task in 15 minutes, in the past, but now I need an hour to finish it because my fingers feel numb.

When I am holding a thin needle, the numbness spreads to my palm. That is, I need more time to complete a task if it requires the use of my fingers. Many people did not receive adequate information about peripheral neuropathy in advance, leaving them to suffer through the symptoms without comprehending them.

Also, as their physical abilities worsened, they gradually became dependent, resulting in lower self-esteem. It would have been nice to have been taken seriously at the time. I think for cancer patients, and certainly for those who suffer these different side effects that are long-lasting, if not permanent, is being taken seriously.

Neuropathy really prevented me from doing the endoscopic procedures that I had done previously or standing for long periods of time. So, for me, that's been a major personal effect. It's changed my whole life.

There was a brief mention of the fact that sometimes carboplatin can cause pins and needles and a bit of numbness, but this should wear off after treatment. That's pretty much all that was there. There was no warning that it could be a serious effect or that it could be long-term.

Chronic numbness necessitates support from others and irritates me because I cannot even use a can opener or turn the page of a book. I feel miserable about my incompetence, and this is the hardest part. People with cancer lived in uncertainty without knowing the extent to which their numbness could worsen or how long it would last.

Their lives were filled with uncertainties about their prognosis. Further quotes. But no one was able to give me satisfactory answers.

Despite the numbness and pain that made life uncomfortable, they tried to enjoy their lives and reset their priorities. I think what worked for me was really trying to listen to what I thought my body was telling me it needed, resting when it needed to rest, but also going to the gym or doing something physically active every day. Mentally for me, I think makes as much of a difference as physically for me.

It made me feel better, and whether it was 15 minutes or something or whether it was an hour of something, it worked for me. But yoga really helped me too. It really helped me quiet my body, pay attention to my body.

I used to go on overseas trips, but I'm old now and my spouse and I sometimes go on overnight trips. Because I seek stimulation, have purposes and enjoy my life, I do not mind the numbness. People living with cancer experienced discomfort due to numbness.

However, they eventually accepted peripheral neuropathy as a part of their lives, regardless of the severity. Quote, There is no change. It's become a habit and happens every day.

I don't know how to measure it, but I have to accept it. I have come to tolerate numbness by slightly changing my lifestyle, and the numbness gradually decreases over the week after the drip infusion, and I can even cook with my bare hands. While experiencing numbness, there is nothing you can do but reassure yourself that it is only for a short time and should be fine if you recover.

I have to remind myself to look forward and not be preoccupied with this. Otherwise, it will be even harder to recover. If this episode resonated with you, follow and subscribe to the show, and share it with someone who might need clear, compassionate education about serious illness.

You can find more episodes on Spotify, Apple Podcasts, or your favorite podcast app. This is Charlie Neverett. When asked, what do you think happens when we die, actress and writer Emma Thompson responded, I think we return to the source.

And I'm Marianne Matzo, and we'll see you next week. Remember, every day is a gift. or other qualified health providers with any questions that you may have regarding your health.

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