Episode 32: Peripheral Neuropathy
We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.
Let’s be Upfront about peripheral neuropathy. The term refers to a loss of sensation, tingling and pain in the hands and feet, which is a side effect of some chemotherapies. Peripheral neuropathy can significantly affect quality of life with pain, loss of balance and impaired sleep.
Joining us for this episode of Upfront is Sue Dowe and Dr Kate Webber. Sue underwent extensive treatment for breast cancer in 2017 and, during the second course of chemotherapy, developed peripheral neuropathy, particularly in her feet and to a lesser extent, in her hands. While the symptoms in her hands disappeared within a few months, the symptoms in her feet have not entirely resolved. Dr Kate Webber is a medical oncologist at Monash Health and adjunct senior lecturer at Monash University. She has a keen interest in breast oncology, cancer survivorship and patient reported outcomes research.
We hear about Sue’s personal experience of peripheral neuropathy, and strategies she’s used throughout her journey to manage her symptoms. We also learn more about the specifics of the condition itself, including how treatment can be adjusted to minimise long-term impacts, medication options and the role exercise can play in alleviating symptoms.
Due to current circumstances, this podcast was recorded remotely. Listeners may notice a slight difference in audio quality when compared with previous episodes.
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Kellie Curtain [00:00:07] Let's be Upfront about peripheral neuropathy. The term refers to the loss of sensation, tingling and pain in the hands and feet, which is a side effect of some chemotherapies. Peripheral neuropathy can significantly affect quality of life with pain, loss of balance and impaired sleep. To help us unpack this important topic today, we're joined by Sue Dowe and Dr Kate Webber. Sue underwent extensive treatment for breast cancer in 2017, involving several operations and two 12-week courses of chemotherapy and radiotherapy. During the second course of chemotherapy, Sue developed peripheral neuropathy, particularly in her feet and to a lesser extent, in her hands. While the symptoms in her hands disappeared within a few months, the symptoms in her feet have not entirely resolved. Also joining us today is Dr Kate Webber, a medical oncologist at Monash Health and adjunct senior lecturer at Monash University. She has a keen interest in breast and gynecological oncology, cancer survivorship and patient reported outcomes research. This episode of Upfront About Breast Cancer is an unscripted conversation. The topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical opinion. Please exercise self-care when listening, as the content may be triggering or upsetting for some. Welcome to you, Kate and Sue.
Sue Dowe [00:01:33] Thank you very much.
Kellie Curtain [00:01:37] Kate. Tell us in a nutshell what peripheral neuropathy is and how it happens.
Dr Kate Webber [00:01:46] So broadly speaking, peripheral neuropathy means nerve damage to the fine nerves that go to our peripheries, to our fingers, toes, and in extreme cases, extending up our limbs. It can be caused by certain classes of chemotherapy drugs. In breast cancer, the drugs that are the most likely culprits are the taxanes. So, drugs like paclitaxel and docetaxel, which are a very common part of the backbone of most chemotherapy regimens we recommend for women with early and locally advanced breast cancer.
Kellie Curtain [00:02:22] OK, so how common is it?
Dr Kate Webber [00:02:25] So it's very common and in fact, up to about 80 per cent of women who are treated with paclitaxel will have some degree of symptoms. And about a third of patients may even require a dose reduction or stopping chemotherapy early because of it. A lot of the symptoms will be quite mild, but a significant proportion of patients will have functional impairment because of it. So, as in, they'll have trouble doing day to day tasks because of the numbness or tingling or pain in their hands or their feet.
Kellie Curtain [00:02:59] OK, so Sue, you know, first-hand what it's like to have peripheral neuropathy. Tell us some of the experiences that you had.
Sue Dowe [00:03:12] The main symptom that I have always had is a continuous feeling of numbness in my in my feet. It's the same sort of feeling as you have when your feet are really cold in winter, and you get that sort of frozen feeling. And this ran and continues to run from the tips of my toes down to the arch of each foot underneath. I also have a certain amount of loss of sensation in parts of my feet, in my legs. And then there were, and sometimes even now, I get these other symptoms of a bruised feeling, almost as if my feet have been hit with a hammer. My feet feeling as though they've got papers stuffed up underneath the toes or rubber bands looped around my toes, sometimes sharp jabbing needle-like pains in parts of their feet, sometimes a jolting electric shock type sensation or a thrumming sensation, as though I'm up against a power box or something like that.
Kellie Curtain [00:04:38] It sounds horrific.
Sue Dowe [00:04:40] Well, it's very, very disruptive. And it's disruptive and it interrupts what I'm doing. Most particularly, it has interrupted my sleep and my rest. But also, my balance was quite badly affected. It's much, much better now three years on. But certainly, for quite some time I would find if I was walking uphill that I would veer to the left on the footpath. And I still don't know why that happened, but it no longer happens, for which I'm very grateful. And I also found that I can't wear certain sorts of footwear now. I can't wear shoes, court shoes that put more pressure on the ball of the feet. It just that is in fact, very painful.
Kellie Curtain [00:05:38] Kate, can you talk to some of Sue's experience and why that happened?
Dr Kate Webber [00:05:44] Yeah, so, look, it's a side effect of the chemotherapy, unfortunately, and the biggest challenge we have as clinicians is that we have no useful strategy of predicting which of our patients are going to get peripheral neuropathy and when it might happen. There's also no proven preventative strategies. So really what we're left with is carefully assessing our patients during treatment to see when these symptoms arise and if and when they do, our only real option is either to reduce the dose of the drug or to stop the drug. Once the nerve damage is done, it it's really, really, really difficult. And it can take a very long time for it to recover because our nerves don't regrow the way, for example, our hair does, and blood counts recover after chemotherapy. So this can be a long term side effect for many women. The sort of symptoms Sue's describing are pretty typical, although because it's quite a subjective symptom, patients describe it in many different ways. So, Sue was talking, I liked her description of, you know, rolled up rolls of paper in her shoes. I've had other patients describe it as walking on sand or having cotton wool in their shoes. You know, the sensations in the fingers can also vary significantly. Some patients have more pain, some have more numbness and tingling. My favourite ever description from a patient was she told me she had champagne fingers because her fingers felt fizzy all the time. So, it's very real and very common, but also relatively poorly understood because it's such a subjective symptom.
Kellie Curtain [00:07:29] And not just poorly understood, but not really spoken about with the same type of frequency that we talk about other symptoms of chemotherapy, like hair loss and nausea. They're very tangible but I guess pain and tingling somewhat seems a bit of a by-product, but actually can be quite debilitating. And as you said, because the nerves don't come back as quickly as hair or as quickly as eyelashes, it's forgotten about or somewhat accepted, do you think?
Dr Kate Webber [00:08:05] I think so. I think when you've been newly diagnosed with cancer and when giving you recommendations about starting chemotherapy, we do include this in the list of side effects we talk about routinely. But I think at that point, people are going through an incredibly stressful situation and the side effects that are front and centre and most people fear most are things like hair loss, nausea and vomiting, am I going to be able to get on with my day and go to work? Am I going to catch terrible infections and get sick and die? You know, and when we get to numbness and tingling halfway down the list of side effects, it doesn't really register as something that's going to be a major concern for a lot of patients, I think. But in the long term, it actually is the one thing that lingers and can really impact patients’ quality of life.
Kellie Curtain [00:08:56] Sue, you mentioned that it was in your second bout of chemotherapy that you started to get the peripheral neuropathy. How far into that second course did you start to notice the symptoms?
Sue Dowe [00:09:08] Well, the second course was paclitaxel, and it was a 12-week course of weekly infusions. And yes, I had been warned that that peripheral neuropathy was a side effect, that many patients suffer. And so each week as I progressed, I thought so far, so good, so far so good. And then at about week six to week seven, I began getting sensations in my feet and also in my fingers and I thought, oh dear. And then gradually as I continued through the course of chemotherapy, it got progressively worse. And even though it was getting progressively worse, I did discuss it with my oncologist and then I said to her, I do want to finish this course of chemotherapy because this is the very best chance I have of picking up these cancer cells and killing them that might be floating around my body at this stage. So, yes, this isn't great. But I think I've got to look for the greater good here.
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Kellie Curtain [00:10:44] Is that quite common Kate and is that perhaps the way the best way to do it, or is it about stopping for a while and then going back on it, because I can certainly hear in Sue's voice, I think you've said before Sue that the ride was worth the fall.
Sue Dowe [00:11:03] Absolutely, it was and is. And part of it is I have a husband and two children and I want them to know that if I end up dying from breast cancer, I want them to know that I did absolutely every possible thing I could to deal with this and that if I do end up succumbing to it one day, it wasn't because I didn't try to be here for them.
Kellie Curtain [00:11:38] And it wasn't because you tried to stop the tingling in your feet!
Sue Dowe [00:11:42] That's it.
Kellie Curtain [00:11:42] Kate, when a doctor recommends that you either reduce the dose or cease the chemotherapy to reduce the symptoms, does that mean for a time or does that mean the end of that chemotherapy or do you give it a rest? Let the nerves and fibres rest a little and then resume. How does it work?
Dr Kate Webber [00:12:05] So typically in the sort of setting that Sue's talking about, so for women with early and locally advanced disease, once we stop the chemotherapy, we usually don't go back to it. And so, for most patients, we usually will try and do a dose reduction before it comes to stopping. Some patients will end up stopping at, say, 10 weeks rather than 12 weeks of treatment. But we're always weighing up very carefully in our minds the risks and benefits of getting optimal treatment for your breast cancer, but not leaving you disabled by the treatment. And when we think about breast cancer globally, most of our women are going to survive their treatment. And so living long term with, you know, a risk of falls or being unable to do day to day activities because you can't feel your fingertips can be really, really disabling. And so we're weighing up that risk and benefit very carefully. And it varies from patient to patient when we make that call to stop or to reduce the dose.
Kellie Curtain [00:13:07] Sue, how did you alleviate your symptoms or in fact, where you were able to?
Sue Dowe [00:13:14] The symptoms, they've been very persistent, but the very most effective strategy for me has been exercise, especially walking and gym work relating to my balance. I also find that spending eight hours in bed each night, even if I'm not asleep and I'm only able to rest up and sleep, is the best I can do for myself. I did try and see neurologist at one point, in addition to my GP, and I tried Lyrica and Gabapentin, however, the dosage required was quite high and this led to severe constipation. And I came to the conclusion that the best thing for me was to take Panadol Osteo, sometimes with Temazepam, and that seemed to be the best treatment for me. But it is annoying, these symptoms. It is a bit like living with a pair of toddlers who suddenly decide to get up in the middle of the night. And it's party time at two o'clock in the morning and they won't shut up and they won't go back to bed. So, it's been very, very trying and disruptive at times. Sometimes the toddlers do still get up, but they're a bit better behaved now, a lot better than they were initially.
Kellie Curtain [00:15:04] So when you say they want to party at two o'clock in the morning, is that the tingling in your feet or that scratchy feeling? What's the thing that that wakes you up?
Sue Dowe [00:15:13] It's more the jolting electric shocks and the sharp jabbing needle-like pain. And sometimes that frozen feeling almost feels as though my feet are being sanded with fire. It doesn't happen nearly as much, but I tend to get quite restless with it. And that is where I find that that Panadol and sometimes, as I mentioned, Temazepam or even an Antenex tablet works to just slow the whole thing down and to make it be quiet.
Kellie Curtain [00:15:56] So Kate, Sue is talking about some sleeping medication. We hear of people plunging their hands and feet into ice during treatment. Do you have some other recommendations for how people can alleviate the symptoms?
Dr Kate Webber [00:16:14] Yeah, so I guess we might start with the things people do during treatments, so you mentioned, plunging hands and feet into ice. And look, there've been several studies trying to look at that sort of treatment and the results have really been quite mixed. So, at the moment, that's not something that's routinely recommended. And I will also say over the last 20 odd years, there has been multiple, multiple trials of everything from vitamins to all kinds of drugs that work on the nervous system to try and prevent neuropathy during treatment. And nothing has really made a difference. So, there's not a great deal we can do during treatment, save for monitoring carefully the symptoms and adjusting the drugs when even when needed. Post treatment, I think Sue's experience is pretty typical. Most people find that things do get better with time, how much it really gets better versus people just kind of adapt to it is hard to tease out a lot of the time, although the majority of people definitely report improvement, if not resolution in their symptoms. So, for those people who are left with long term symptoms, many will just sort of put up with it and do their best to get by. Sometimes that means adapting the way they do things day to day. In terms of medication, so some of the drugs Sue mentions are drugs that we might use for other kinds of neuropathy, like sometimes they used for diabetic patients with neuropathy. One drug in particular that does have some evidence in chemotherapy induced neuropathy is an antidepressant called Duloxetine So, studies have shown that it can help with the pain associated with neuropathy. It doesn't necessarily address the underlying nerve damage. And the studies didn't really look at if it helps with numbness and tingling, it's more for painful neuropathy. So, it's certainly something that some of our patients might be interested in trying. We would typically start at quite a low dose and then uptitrate as tolerated to try and get around some of the problems that Sue describes with feeling drowsy on medications. Really, though, I think one of the most important things Sue raised was exercise. So, exercise has so many benefits for women who've been through breast cancer treatment and neuropathy is just one of them. So again, whether exercise can actually fix the underlying nerve damage, probably not. But what it can do is improve all the things that can help you with your day-to-day function, like improving your balance, improving your strength and your core stability to try and reduce your risk of having falls. And then there's all the side benefits of exercise, like improvements in your general health, your mood and potentially even your risk of breast cancer recurrence. So, exercise is very much something I'd advocate for anyone who's having trouble with neuropathy.
Kellie Curtain [00:19:16] What sort of exercise are we talking, a stroll, going to the gym, physiotherapy, targeted exercises, what specifically, is there a need to do something?
Dr Kate Webber [00:19:28] Look, I think whatever works for you and whatever is particularly focussing on your specific problem. So some patients might find it helpful to have a review with an exercise physiologist or a physiotherapist to help them come up with an exercise program they can do at home. I'm speaking probably more globally about the kinds of exercise that's good for people with breast cancer, which is the same as the sort of exercise it's good for anybody, which is a mixture of aerobic and resistance exercises, trying to do something regularly on most days of the week and trying to do something that you can fit into your lifestyle and your budget so that you can keep it up regularly. And so for people who've got significant neuropathy in their feet, that might mean focussing on exercises that help with your core strength and balance and then moving on to more, I guess, aerobic type exercise once you're confident in what you can do without falling over.
Kellie Curtain [00:20:31] Why does it affect your balance?
Dr Kate Webber [00:20:33] Well, you can probably imagine how much you need to be able to feel your feet in order to stay upright. You know, it's really important that, you know, if you're walking on a rough surface and you can't feel your feet very well, it's hard to stabilise yourself if you start to have a little trip. So having sensation in your feet is so important to everything we do. And, you know, similarly, having sensation in your hands is really important for most of your day-to-day functions, like things like, you know, doing up buttons or typing on a keyboard. We need that fine motor sensation every day. So, these things can be really disabling in the long term for many patients
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Kellie Curtain [00:21:36] And will it always affect both feet, or both hands, or could you feel it more in one rather than the other?
Dr Kate Webber [00:21:41] It's typically symmetrical. If you've got an underlying problem on one side, perhaps people might notice it more on the dominant side or on the side where they had a previous injury. Perhaps, but usually it's symmetrical.
Kellie Curtain [00:21:56] Sue, you've spoken about some of the symptoms and how it was very annoying and disturbing, did it affect your mental health? And what were the day-to-day tasks that you ended up finding challenging?
Sue Dowe [00:22:10] I think that's the great advantage of exercise is not just the exercise itself, its overwhelming benefit for me is to the top story. It makes me feel a lot better, a lot more alive, particularly if I'm out in the sun. I walk to and from the gym that I go to. I guess the real benefit from it physically is that I could gradually feel the benefits. I became quite deconditioned, as many patients do as a result of breast cancer. And so was working both with a physiotherapist and with an exercise physiologist to recover that strength. And in fact, as a result of all the exercise I have done continuously since 2018, my fitness is now far better than it was prior to my having breast cancer. So, yes, that has made a huge difference to me. I guess another aspect is that by doing this exercise, it distracts my feet. It stops them complaining, and once again, I use that analogy of toddlers, I mean, if they get taken out for a walk to the park, they're generally easier to deal with when they come home. And so it has been with my feet and continues to be so, even now.
Kellie Curtain [00:23:51] And do you do something every day? Is that what you aim to do?
Sue Dowe [00:23:55] I would say so, yes. Because I go to the gym three times a week and other than that, I have a little fox terrier who needs to be taken for a walk and he demands that. He's been very useful because if I'm not feeling like taking him out, he still wishes to be taken out and he makes it very clear. So he's been a useful friend as well in all of this.
Kellie Curtain [00:24:29] Did it get you down at all, though, your mental health? Did it have a knock-on effect or was your eye on the prize?
Sue Dowe [00:24:37] I think my has always been on the long term prize. My grandmother, my grand aunt, in other words, her sister and my great grandmother all died from breast cancer. I think, and my grandmother died in 1988 when I was in my early 20s. And I think that with all of the treatment that I have received and all the opportunities for treatment that I have, this is a slight burden. But the benefit is life. The benefit is living. The benefit is opportunity. So this is, I don't wish to downplay it or just saying it's annoying, but the peripheral neuropathy will not kill me, but breast cancer can. And that's what enables me to cope with it
Kellie Curtain [00:25:36] Kate, for those who have early breast cancer, would your message be to report it as soon as you start to see symptoms, because like we've discussed, sometimes it seems just an accepted side effect or a necessary evil to get the vital chemotherapy treatment. What is the best approach if you start to feel the symptoms?
Dr Kate Webber [00:26:03] So many of our women will be having weekly treatment like Sue did. And so we will be asking you about it every single week, the doctors and the nurses involved in your care. But I think patients should also be empowered to speak up and let us know about it. Now, the first time you reported it may be quite mild and we may say, well, let's push on and see what happens. But if we know earlier how you're feeling, then it's easier for us to monitor your symptoms and to notice if there's been a significant change or deterioration that we need to act on. We do use these drugs in women with metastatic disease as well, probably not as commonly, but they're certainly still used. And in that setting, it's even more important that we know the impact that your treatment's having on your quality of life so that we can make adjustments and even change treatment if needed.
Kellie Curtain [00:26:59] So is the message, make sure you talk to your health team about all symptoms and then an educated guess, depending on your circumstances, dependant on your goals and I guess level of tolerance to what affects someone, it's not tangible, is it? And everyone's pain or threshold for something annoying is different as well, isn't it? Like a toddler!
Dr Kate Webber [00:27:28] Well that's right, that's one of the main one of the big challenges in both caring for patients and research in this field is that because it's such a subjective symptom, we can't measure it as well and define cut offs as well as we can, for example, this is the white blood cell count that I'm happy to proceed with treatment at, or we know it's safe to proceed with treatment at. For clinicians grading neuropathy, we've historically used a pretty crude scale where we rate it basically on a one to four scale, like we do any other side effect. But there are, basically grade one is very mild symptoms that don't impact your day to day, by the time you've got grade two symptoms, you've got symptoms that are interfering with the activities you do day to day. That's pretty significant and that's still only graded two out of four. So when we do clinical trials and report side effects, oftentimes we look at what are the grade three and four side effects? Neuropathy doesn't get many grade three and four side effects because we like to try and stop it before it gets that bad. So, it is always, we know that clinicians are very imprecise and crude assessors in many ways of these symptoms and patients know better than we do how it's impacting them day to day. And so I guess when you say Kellie, it's an educated guess as to when we should do something, it's I guess, more of a negotiation between patients telling us how their symptoms are impacting us and us making a call about, well, that's the threshold where I know if we go on any further, we're really going to cause some damage in the long term.
Kellie Curtain [00:29:10] And when you say damage, it's usually irreparable damage? What is the scale of those? Sue has, a lot of her function has returned, particularly on our hands? I think Sue? It's just some residual in your feet?
Sue Dowe [00:29:26] My hands as good as ever as far as I can see and feel. My balance now seems to have recovered, which makes me ecstatic. I wasn't safe to climb on a stepladder or anything like that for quite some time. But now I can walk in a straight line along the crack in the footpath, I can do that. I can dolly steps, whereas I couldn't, and heel to toe and I won't fall over. I could stand on a padded piece of foam on one foot and hold the balance, all those things that really helped to just make life so much easier and to be able to zoom around. Yes. So I've recovered, but. I think the most important thing is to be a patient patient. You just have to keep going and not give in and not give up.
Kellie Curtain [00:30:35] So, Kate, how many do not recover as well, who are left with long term and permanent symptoms?
Dr Kate Webber [00:30:44] But it's probably very common. So although most of our patients tell us it gets better over a period of a few months after treatment ends, up to about half of patients will have some degree long term. Now, a lot of that might be very mild, but very mild symptoms when you have, you know, 30, 40, 50 years of life left, it can be significant. And I think Sue's story's quite important because it's not just the natural recovery that we've seen here. It's also the work she has put in to manage her symptoms that has led to her doing well and coping with this. Another really important thing I think to note is that for most of our patients, neuropathy is just one part of the symptom they're dealing with after their breast cancer. So many of our patients are also dealing with deconditioning, like Sue mentioned, from the treatments we've put them through. So both physical fatigue and cognitive fatigue or chemo brain, they're often dealing with menopausal symptoms and side effects of the hormonal treatments we've put them on. And neuropathy is just a part of that constellation of symptoms that many of our patients are going through. So particularly over the first few years after your diagnosis, these are really common things that we talk to patients about all the time. I would very strongly rate exercise is something that can help with almost all of them. So very, very strongly endorse all the comments we've made earlier in this discussion about exercise after breast cancer, but also just really reinforcing the importance of talking to your doctors and nurses and the rest of your care team about the symptoms that are bothering you, because there are things we can suggest to help.
Kellie Curtain [00:32:37] Thank you to Kate and Sue for being very Upfront with us today about peripheral neuropathy. This podcast was brought to you with thanks to Cancer Australia. BCNA's My Journey has a range of resources about peripheral neuropathy and managing pain. To sign up, visit my journey dot org dot AU. BCNA's Online Network is also an online peer to peer support community where you can connect with others going through a similar experience, visit the BCNA website. Thanks for joining us, I'm Kellie Curtain and it's good to be Upfront with you.