Peripheral neuropathy, a distressing side effect of certain chemotherapy drugs for breast cancer survivors, can significantly disrupt daily life—from altering one's gait and balance to affecting basic tasks and activities.

In this episode, we'll delve into the intricacies of neuropathy: what it truly entails, its impact on daily life, and actionable steps to manage and mitigate its onset due to breast cancer treatments. Tune in as we shed light on navigating this challenging aftermath of healing.

Read the full transcript: 

0:01
This is Laura Lummer, the breast cancer recovery coach. I'm a healthy lifestyle coach, a clinical Ayurveda specialist, a personal trainer, and I'm also a breast cancer survivor. In this podcast, we talk about healthy thinking and mindfulness practices, eating well, moving your body for health and longevity. And we'll also hear from other breast cancer survivors who have reengaged with life, and have incredible stories to share. This podcast is your go to resource for getting back to life after breast cancer. Welcome to Episode 39 of the breast cancer recovery coach. I am Laura Lummer. And today we're going to be talking about understanding neuropathy and what you can do about it, some really good stuff coming up. But first, I want to share a story with you. The other night, I came home and my husband who's a huge fan of YouTube and of music was watching YouTube and he was viewing the Howard Stern Show where Def Leppard was being interviewed and playing an acoustic version of the all time famous, pour some sugar on me. Now, I've never been a Howard Stern fan. But being an 80s teenager, Def Leppard was one of my all time favorite bands. And in fact, six years ago, my husband and I were married at the pop up chapel in the Cosmopolitan Hotel in Las Vegas. And then we were whisked off to a Def Leppard concert at the Hard Rock Hotel. So this band has a special place in my heart. So I decided I would tolerate Howard Stern and I sat down to watch the performance, which was awesome. And afterwards, the band members and especially the drummer Rick Allen, were interviewed. And Rick Ellen talked about the car accident that he was in where he lost his arm when he was only 21 years old. As he described what he went through, Howard Stern asked him how he got through his injury without curling up in a dark place somewhere and just giving up. And Rick Ellen's response was so awesome. And the reason I wanted to share this story, he said, I wanted to so many times, but I had to get to the point where I stopped comparing myself against who I used to be. I had to redefine myself and say, How can I be the best of me, as I am? When I heard that, I thought, This is what we have to do as cancer survivors, many of us have lost all or part of our breasts. And that changes us. It's tough sometimes, because our breasts are a part of our femininity, a part of our intimate pleasures and relationships. And even if you did choose reconstruction, they don't look the same. Right, they don't feel the same. They don't respond the same. And there's nothing wrong with saying that out loud. And with owning that, and recognizing that there's nothing wrong with grieving that. But at some point, you have to stop comparing yourself to that previous version of your physical self, for your own ability to thrive, and fully engaged in life. To feel light hearted and joyful and to be successful at whatever you choose to do. You have to find a way to be the best version of you. After Rick Allen's accident, he created a drum set that would accommodate his injury, and he went on to be one of the most successful drummers in rock'n'roll history. Now, you may not have an aspiration to be a rock and roll star, neither do I. But don't use your surgical radiotherapy, chemotherapy damage as a reason not to participate in your life. Use them as a reason to find solutions to develop workarounds to become stronger, more creative, more resilient, and to love your life. So that's going to bring us to our topic. Specifically today we're going to talk about chemotherapy induced peripheral neuropathy. And that's defined as the American Cancer Society is a set of symptoms caused by damage to the nerves that are away from the brain and spinal cord called peripheral nerves. And these nerves carry sensations to the brain and control the movement of our arms, our legs, and our bladder and our bowel. And the reason this correlates with the whole Rick Allen story is because neuropathy can be really disabling really uncomfortable, and cause a lot of problems and limitations. But there are things that we can do about it. So we're talking about chemotherapy induced PN peripheral neuropathy, it's also called cipn. Now there are other ways Pn is caused and it includes surgery, radiation, targeted therapies, diabetes, vitamin deficiencies, alcohol abuse, autoimmune disorders, infections, injuries, all kinds of ways. It's amazing actually how much neuropathy is out there in the world. The National Institute of Neurological Disorders and Stroke estimate that more than 20 million people in the United States alone deal with some form of peripheral neuropathy. It's crazy. But it's actually not surprising, since there's also estimated to be over 16 million cancer survivors in the US. And this is horrible. 30 million diabetics, type two diabetics as of 2019. And those are some phenomenal numbers. That's a lot of disease. So if you get frustrated with yourself because you drop things all the time, or you struggle with small movements that didn't used to be an issue for you, like buttoning your shirt or working at clasp on jewelry, gotta hate those, taking a step and then suddenly, a sharp pain makes you feel like you just stepped on a piece of glass or you rolled your ankle and you know, you didn't roll your ankle. Just know you're not alone, and you're not a drama queen. So another story, my family gets together pretty frequently for Taco nights, and it was pretty much weekly when I was going through cancer treatment. And for a long time after chemotherapy, I struggled to be able to hold a wooden spoon long enough to brown the meat that I was cooking for Taco nights. And more than one occasion, I had to ask someone else to finish the cooking for me because I literally could not hold on to that damn spoon. So even when I was getting ready to go back to the gym, my muscles were strong enough to lift. But my grip was so weak I couldn't hold on to a weight and harder to get through a whole workout was so frustrating, but it can improve and we're going to talk about the options that are available for improvement shortly. cipn chemotherapy induced peripheral neuropathy. It most commonly affects fingers, hands, toes and feet. But it doesn't always stop there. It can move up your limb and chemotherapy can cause damage to other nerves that are deeper in the body. If this includes nerves that are in your internal organs, you can suffer from things like constipation and dizziness. If the nerves in your muscles are affected, you can experience cramping spasms, muscle weakness. However, the most common symptoms are tingling, numbness, burning, and weakness and loss of sensation in the arms, hands, legs and feet. You may be surprised to know that other symptoms can also include because I was surprised to find this out balance problems, difficulty walking, jaw pain, hearing loss, trouble swallowing, urinating, and even changes in your blood pressure.

7:54
Now many of these issues clear up on their own, or at least they become less severe as time passes after treatment. That's a great thing because often, especially when it is a chemotherapy induced damage, it does get better with time, but many also stick around for a long time if not permanently. And evidence shows that neuropathy caused by radiation therapies can even show up months or years after treatments. Now the symptoms you experience will depend on the type of nerves that were affected. If it was motor nerve damage, this typically leads to muscle weakness. And that's what affects things like your walking your grip strength, your ability to grasp things, talking cramping, twitching, and spasms. Interesting I'll share this with you I have this weird twitch and where my right eyelid gets stuck now and I never had that before I went through cancer treatment. But when my eyes are closed, oftentimes that red eye gets a little bit stuck when I try to reopen it from a blink Weird But True. Alright, sensory nerve damage. That kind of damage can affect touch temperature, or pain sensations, and autonomic nerve damage. Those are the nerves that control things we don't consciously think about we don't consciously control they can affect reading digestion, organ and gland functions if they get damaged. So for more amazing detail on these types of neuropathy is like what part of the nerve is affected? Or in what way the damage to the nerve is causing these sensations. I'll post a link to the peripheral neuropathy fact sheet on the National Institute of Neurological Disorders and Stroke website. In this episode's show notes on my website. This sheet contains a lot more anatomical detail than I want to go into on this show. But for you science geeks like me, it's really informative and it's very, very interesting. A couple of important things to point out is that not all chemotherapy drugs cause neuropathy, and not all people who are prescribed chemotherapy. drugs that cause neuropathy will actually develop it. So if you've come across someone else who was treated with Taxotere and has no side effects, while you struggle to hold on to your hairbrush, please don't compare yourself to them. What happened to you is real, and everybody responds differently. And that just is what it is. A different outcome does not make you weak, or less than someone else, just like some people are lactose intolerant, and some are not our bodies respond the way they do. And our job is to stay present in our experience, and do the best we can with it. And I know this can be challenging at times, because people around us who have not been through cancer treatments have a tendency to compare the stories they hear. And you have to practice not taking that personally and realize they don't know what they don't know. Right. Just like you probably didn't realize until your own diagnosis, that there were different kinds of chemotherapy drugs, various radiation and surgery options, and even different reconstruction options. So don't let those comparisons get to you and don't get sucked into them. Remember that story of Rick Allen and be who you are now. Okay. Another important thing to understand, even though not all chemo drugs cause neuropathy, the ones that do can damage the nerves in two distinctly different ways. Dr. Michael Stubblefield is the medical director of Cancer Rehabilitation at the Kessler Institute for Rehabilitation in New Jersey. And in his podcast interview with breast cancer.org, he says, The Taxanes and the Vinca Alkaloids poison your body's ability to make tubulin, which is a protein that helps to move things along the nerve. Whereas the platinum drugs get into the DNA of a cell, and they start screwing up the metabolism, and they just damage the sensory nerves. The reason it's important to understand this difference is because there are ways to treat neuropathy, but it does differ depending on the type of damage the nerve sustained. So let's talk about those treatments. Because getting better and getting back to life is what we really want, right? My approach, first of all, is always get your lifestyle right. No matter how much I emphasize that I constantly meet people who don't believe something as simple as good nutrition and exercise can heal you. So I want to read you this quote straight from the peripheral neuropathy fact sheet. And this is a quote, nerve health and resistance can be improved by healthy lifestyle habits such as maintaining optimal weight, avoiding toxic exposures, eating a balanced diet and correcting vitamin deficiencies. Exercise can deliver more blood, oxygen and nutrients to fire off nerve endings, improving muscle strength, and limiting muscle atrophy. strict control of blood glucose levels has been shown to reduce neuropathic symptoms, and help people with diabetic neuropathy avoid further nerve damage, unquote. Now I wanted to include that last part about diabetes because I know that some of you listening are dealing with managing the symptoms of type two diabetes. And I want you to know that you can reverse those symptoms and prevent further damage. Now, obviously, if you're in pain, you should take steps to manage that pain while you're working on creating a healthy lifestyle and experience further healing and improvement. Don't just suck it up and tolerate the pain because it makes it that much harder for you to focus on creating healthy habits. If you're in pain, right? Everything sucks up, you're in pain. So deal with that, manage it, get it under control. And then let's just start working through that lifestyle and those healthy lifestyle habits. So let's talk about some ways that you can manage the pain and discomfort of neuropathy. One of the causes of neuropathy that I mentioned earlier was vitamin deficiency. And b 12, in particular, is a vitamin that is essential for normal nerve function. We get B 12 through eating animal products like fish and dairy and meat, but we can also be low in B 12. If we have problems with absorption in our digestive tract, if we're vegans, vegetarians or take certain medications that can affect the absorption and the metabolism of B 12. So you can ask your doctor to check your b 12 levels through simple blood tests and then follow your doctor's instructions for supplementation if you do have low levels. So here's a few encouraging studies with respect to B 12 and neuropathy. In December of 2018 complementary therapies and Medicine published an analysis of four clinical studies and these studies looked at 383 People taking vitamin B 12 supplementation and the result What was that vitamin B 12 administration improved the quality of life and significantly decrease the number of patients using analgesics or pain relievers. In 2017, biomed cancer published findings from a study that looked at two groups of people, one group had 10 B 12 injections, they got one every other day for 20 days. And then were followed by two months of taking b 12, orally three times a day. The second group had the same dosage and frequency of taking B 12. But they also had three treatments of acupuncture. And the results were that both groups had a significant reduction in pain after 84 days. But the group that received acupuncture had even better results, in addition to improving their nerve conductivity, velocity, or the speed that a nerve impulse travels down your nerve, which is a really good thing. And the B 12 group did not see a change in that aspect. But they did have a reduction in pain. So if you decide to talk to your doctor about B 12 supplementation, these studies did use a form of B 12, called methyl cobalamin. This is a more bioavailable form, then cyanocobalamin, which is what you normally find on the supplement shelves in the stores. So I'll post the names in the notes on my website. So you don't have to scramble for a pen and paper and write that down or try to remember those ridiculous names. And then another small study that was in evidence based complementary and alternative medicine in 2017, showed that acupuncture significantly reduced the severity of chemotherapy induced neuropathy in more than 42% of participants after receiving acupuncture three times a week for four weeks, and then in their follow up four weeks later, none of their symptoms had returned. So that's really great news. But obviously 42% is not a ton of people, unless you're one of that 42%. But in my personal experience, acupuncture helped me tremendously with my neuropathy. That being said, I've met other women who have had great results being treated with acupuncture. And I've also met others who didn't have much of results at all. Going back to Dr. Stubblefield interview, he says that his personal sense, is if you think acupuncture is going to work for you, acupuncture is likely to work for you. And if you don't think acupuncture is going to work for you, then you're more likely to be a non responder. So I don't know how much there is to that as far as our belief that something can heal us, but I think it might be something to consider also. Now let's recall that the difference in how your nerves are damaged can play a role in treatment. So if you had the kind of damage that messed up your DNA, you may be a better candidate for analgesics or pain relievers. And your doctor can work with you on that. There's lots of choices, and even antidepressant medications that can help relieve the pain of nerve damage. When my neuropathy was at its worst during chemo, it was affecting my sleep and my function was really bad. And so my oncologist prescribed a low dose of an antidepressant medication. And it worked wonders and it got me through what I needed to get through. So don't hold back on making those calls to your doctors, ladies, you should not live in pain. But know that time and a healthy lifestyle will bring even more improvement. I haven't had to take medications for years now. And if I notice things getting a little too numb or sensitive, I do call my acupuncturist for a little bit of a tuneup. So there's also physical and occupational therapies that can be very helpful in regaining strength, balance and dexterity. So going back to your doctor and getting a referral to see a physical therapist or an occupational therapist, these are highly trained professionals, and they can give you tips on new ways of doing things that will increase your mobility and reduce the amount of pain you experience. I personally have done a lot of work on my grip strength over the years and it still to this day continues to get better and improve with consistent training.

19:13
I hope this helps you have a better understanding of what's happening in your body, because I'm a big believer of knowledge is power. And I hope that you also heard some solutions that will work for you if you're struggling with symptoms of neuropathy. I know a lot of people don't realize what is actually available to them. There's so many resources out there. But unfortunately, it's more common that you have to ask for those resources, rather than having them offered to you. And how do you know to ask for something that you don't even know about right? So hopefully this gave you some new options and tools that you can check into. Thank you so much for listening to the breast cancer recovery coach. And if you have a free minute, I would really appreciate you taking the time to leave a positive review for the show. Reviews really do make it easier for people who need this information to find this No. Also go to my website Laura lummer.com, where you can download my free book The six habits of healthy happy breast cancer survivors. And I'm super excited to share that by May 1, my new website will finally be up and I will have brand new free downloads for you along with my first downloadable coaching program revivify. This program is filled with great practices and step by step instructions and videos from me at a price you're going to love. So get ready for some great stuff coming. And if you use Instagram, and Facebook or Facebook, look for me and let me know any questions you might have or any other topics you'd like to hear about on the breast cancer recovery coach podcast. I'll talk to you again in two weeks and until then, let your lifestyle be your medicine.

20:46
You've proved your courage to the test laid all your doubts your mind is clearer than before your heart is full and wanting more your futures Give it all you know has you been waiting on yours this is yours