Understanding and Managing Chemo-Induced Peripheral Neuropathy (CIPN)

00:00:00:00 - 00:00:48:11
Unknown
Hello everyone, and welcome to our webinar Understanding and Managing Chemo induced Peripheral neuropathy, also called CIPA. And I'm Katie Silverman, the Uterine Cancer Program Director Chair We're very excited to have Dr. A.J. Halevi from UCLA joining us today, as well as Megan Claire Chase and Janet Crowley, two patients who will talk about their own personal experiences with the IPN before the presentation begins.

00:00:48:11 - 00:01:19:06
Unknown
I'd like to tell you a little bit about share. Share is a national nonprofit that supports, educates and empowers anyone who has been diagnosed with breast or gynecologic cancers and provides outreach to the general public about signs and symptoms because no one should have to face breast, ovarian, uterine, cervical or metastatic breast cancer alone. For more information about upcoming webinars, support groups and our helplines, please visit our website at Share Cancer Support.

00:01:19:07 - 00:01:43:13
Unknown
All participants will be muted during the presentation. Once all of the speakers finished presenting will begin the Q&A discussion. Feel free to ask any questions through the Q&A section at the bottom of your screen. Please specify which of the speakers you are addressing. Your question to. Remember that the speakers are unable to give specific medical advice, so please keep your questions general in nature.

00:01:43:15 - 00:02:07:01
Unknown
We also have closed captioning available. You can enable this feature by clicking the live transcript button at the bottom of the screen and selecting the subtitle option. This webinar is being recorded and will be available on the share website soon. Now I'd like to hand it over to Dr. Halabi to introduce yourself. Hi. Thanks so much for having me.

00:02:07:03 - 00:02:42:20
Unknown
I am a neuromuscular neurologist at UCLA. I also have a Ph.D. in genetics and my focus at UCLA has been to build a neuropathy program. And part of the main cornerstones of that program is the toxic effects of not just chemotherapy, but also immunotherapy and other anti-cancer drugs. And it's really been kind of a remarkable experience launching this, mostly because of the support that we get from the cancer community.

00:02:42:20 - 00:03:06:19
Unknown
There is such a significant need and interest that's really driven by the patients. So I'm incredibly grateful to be here. It's actually thanks to a patient that I'm here and I'm happy to to participate and support you guys in any way that I can.

00:03:06:21 - 00:03:19:22
Unknown
So let me share my slides.

00:03:20:00 - 00:04:11:19
Unknown
Okay. I'm going to assume that we're all on the same page here. Okay, great. So the first thing I want to mention before I launch into this is that I'd like to take a step back and just start kind of from scratch and recognize that neuropathy is already a difficult term to wrap your head around. And what tends to happen, particularly in these situations, is that you're already going through so much experiencing everything that your experiencing that all of a sudden now we're starting to use terms like neuropathy and these vague symptoms and it's helpful to just kind of have a background and an objective approach to how we talk and approach this from a

00:04:11:19 - 00:04:42:15
Unknown
neurologic standpoint. So this is kind of a roadmap of where we'll be going. I'm going to be quick and I am I actually really appreciate what was mentioned earlier. If I'm General, I'm general with intention, because all of your experiences are so unique and they're so specific to you and your body and so it's just helpful because you're so insightful and because you know so much already about the treatments that you're getting.

00:04:42:17 - 00:05:16:06
Unknown
I'm really just here to help almost objectify things so that they can start to be plugged into a meaningful place as you go through your treatment or talk to your loved ones about your treatment. So what is even a neuropathy? Recognize that the peripheral nervous system is part of our whole nervous system. The central nervous system encompasses our brain and our spinal cord, and the peripheral nerves are everything else outside of that.

00:05:16:08 - 00:05:48:13
Unknown
So our peripheral nerves are really this beautiful, intricate system that's receiving inputs from the world and is allowing us to incorporate those inputs centrally and then feed information back out to the system. And so our peripheral nerves get exposed to everything that our bodies are exposed to. They don't have the luxury that our brains and our spinal cords have because they're not bathed in a protective barrier and they don't have that kind of difference between the two places.

00:05:48:15 - 00:06:13:03
Unknown
And so recognize that the peripheral nervous system also has its own sub components, which include the autonomic component and the somatic component. I'm not going to do a deep dive into these things because they could each have hours long lectures. But I just wanted you to have a sense of when we talk about the peripheral nerves, what are we actually thinking about?

00:06:13:03 - 00:06:40:22
Unknown
How do we start to approach the peripheral nervous system and what's being affected? And so a peripheral neuropathy is any injury or condition of the peripheral nerves that can be related to a compression, something getting pinched, an impingement, a toxin like an anti-cancer drug or too much of a vitamin and even inflammatory or autoimmune conditions can cause neuropathies.

00:06:40:23 - 00:07:11:20
Unknown
And so when you talk about neuropathy, there's hundreds of different kinds of neuropathies. They can be genetic autoimmune, they can be provoked or iatrogenic because of drugs that we are giving you in order to treat your cancer. And so when we talk about neuropathy, it's always relevant to recognize the context in which we're approaching that conversation. And so along those lines, we have nerves that are responsible for predominantly motor function.

00:07:11:20 - 00:07:37:17
Unknown
So our movement being able to walk or move our fingers open a bag of chips, hold a pen, type on the computer and not having to think when we're walking. Our peripheral nerves are doing all of these things without us ever really being aware of them. And it's when that system gets challenged by some of these medication runs that we really start to appreciate just how intricate this system is.

00:07:37:22 - 00:08:06:05
Unknown
And when we start to impact it. What is the the consequence of that? And so we have motor fibers, we have sensory fibers. You can have circumstances in which the sensory fibers are predominantly affected and then even within that realm, you can have situations where you have, for example, tingling or burning or neither of those things and just the effect of having difficulty with movement.

00:08:06:07 - 00:08:36:13
Unknown
And so often times you'll get asked about these questions at your visits by your oncologists because your poor oncologists have had to double as neurologists while they're treating you. And so you'll frequently get asked, are you experiencing these things? What are you experiencing? And that starts to help determine if a drug or if something that's happening is contributing and to what extent it may be impacting a certain system.

00:08:36:14 - 00:09:03:11
Unknown
So a lot of this I've already mentioned, but I did want to talk about the difference in the symptoms and that different symptoms can mean different things. And so when we say neuropathy, for example, if I'm evaluating a patient there, it's relevant for me to ask, for example, are you having tingling, Are you having burning? Is it frankly numbness?

00:09:03:11 - 00:09:26:09
Unknown
Are you having pain or are you having difficulty coordinating not just with your hands, but are you noticing that you're having an issue with, for example, balance? So let's say you're you're showering and you happen to close your eyes. Do you feel like you're unsteady on your feet and you might fall backwards when you're going up a hill or going upstairs?

00:09:26:09 - 00:09:54:22
Unknown
Are you having difficulty with those things in a way that's different from what you're used to? The reason that we ask these questions is because we're trying to understand again what's affected and what might be provoking that impact, because different drugs will have different impacts on the nervous system. Symptoms from a motor standpoint can also include a feeling of cramping.

00:09:54:22 - 00:10:24:19
Unknown
That cramping can be particularly bad at nighttime, so you may wake up in excruciating pain and feel like you need to stretch out. It can also be associated with weakness in certain circumstances. You may have symptoms that start one way and then over time evolve and bloom into something else. And I only mention autonomic symptoms because I think it's a term that gets thrown around a lot, just like neuropathy.

00:10:24:21 - 00:10:47:13
Unknown
But we have very specific ways that we can characterize the involvement of that system or invoke that system. But I don't want you to get too bogged down in kind of the the layering of what I'm saying and just recognize that there's hundreds of different kinds. They can be caused by a whole host of reasons. Chemo is a big one.

00:10:47:17 - 00:11:17:15
Unknown
Immunotherapy is a big one. And the reason why we harp on a lot of these questions is because it's so relevant to how do we manage your cancer, What steps should we take? Do we need to make adjustments? Do there need to be changes to your dosing regimen, etc.? So that brings me to chemotherapy induced peripheral neuropathies. And what I want you to know that the prevalence of this is incredibly common.

00:11:17:17 - 00:11:50:17
Unknown
It's one of the most common consequences worldwide of anti-cancer drugs. It's something that, from a neurologic standpoint is incredibly understudied. But you and I are going to change that. We are going to work on understanding. Can we predict chemotherapy induced neuropathies? Can we know who's at risk for developing this? Can we know if this is starting to happen to what expectations can be as far as recovery is concerned?

00:11:50:19 - 00:12:28:07
Unknown
I've kind of harped on the fact that these patterns are really critical to our understanding what you will very frequently hear or probably have already heard is that, you know, you can get a chemotherapy induced peripheral neuropathy, but most of the time it goes away. But the timeline in which it goes away and what expectations you should have and recognizing that it's not all circumstances that this necessarily goes away and that just that knowledge can sometimes really be critical for you as you're navigating your care to recognize that one.

00:12:28:07 - 00:13:03:18
Unknown
This takes a lot of time and too, the timeline for recovery is very different and individualized depending on to what degree you're affected and how you're affected. So the symptom severity, the intensity, the pattern of distribution and when this occurs during your treatment can impact your dialog with your oncologist, as you've probably noticed and cause you to then make changes to your regimen or your treatment plan.

00:13:03:20 - 00:13:32:23
Unknown
I don't quote percentages with regard to recovery because what that tends to do then is make you feel like, Well, why wasn't I in that 10%? Why wasn't I in that 70%? And the reality is it's not and I mentioned this just before we came on, It's not a one size fits all. Recognize that different malignancies, different cancers and cancer types use different drug combinations, different dosing regimens.

00:13:33:01 - 00:13:54:13
Unknown
You've either had a history of chemo in the past or maybe you had an underlying neuropathy that may be ballooned as a result of your treatment. So there's a lot of factors that influence whether or not you're going to recover and to what extent. And it's kind of unfair to impose that percentage on you without really knowing you as a person.

00:13:54:16 - 00:14:24:03
Unknown
Okay. So again, I mentioned this earlier, but the relevance of this, I'm kind of preaching to the choir. It does or it can result in dose reduction impacting your treatment regimen. Typically chemotherapy induced neuropathies, the impact of them is cumulative. So what I mean by that is the more drug you get, the more likely you are to start to develop symptoms.

00:14:24:05 - 00:14:55:12
Unknown
So in certain circumstances, usually you can start to notice symptoms by around cycle three. And as you get more and more chemo, those symptoms become more and more pronounced. That's not an absolute. It's not a rule. So, for example, there are some folks who may notice right after cycle one that they have that the tingling or the the Paris seizure, they might notice that they have excruciating symptoms right off the bat or they may not notice anything at all.

00:14:55:14 - 00:15:19:06
Unknown
And so, again, it's it's very individualized. And that's part of why this is such a focus for us to try to understand why is it so different? What should we be looking for and what's influencing these things? What can we do about it? I just want you to know that at least our approach and our program has been just understanding.

00:15:19:06 - 00:15:49:18
Unknown
Did you even have a neuropathy to begin with? What are factors that could be causing neuropathy that are independent of chemotherapy? Is there a history of diabetes? Is there a vitamin deficiency? Is there a vitamin toxicity? And so a lot of the time it's just taking in the whole patient, doing a comprehensive assessment and then determining what is a prescriptive program that we can undertake in order for us to be able to start intervening.

00:15:49:20 - 00:16:22:15
Unknown
Most of the time you kind of hear or maybe you've already dealt with the fact that, you know, you've got one, a neuropathy, there's not much we can do about it. And you know, best of luck to you. But the reality is that we're really trying to shift that because it's not necessarily the case. There's so much that just walking and physical therapy and this kind of an interaction can do for somebody that it's not really in a passive process where we just kind of wait for it to go away.

00:16:22:15 - 00:16:48:06
Unknown
We should be doing more to try to intervene, to try to help you navigate these symptoms, because often times what'll happen is you'll be done with the cancer or you will have just beat cancer and now you're stuck dealing with the neuropathy. And so it doesn't let you forget and move on with your life because you're just you're still dealing with this pain, this discomfort, this imbalance.

00:16:48:08 - 00:17:14:07
Unknown
And so we should really be helping with that survivorship element of the story so that you can genuinely kind of move on and put this behind you. So it's a very general approach to that answer. But of course, as we move through the webinar, I'm happy to answer any questions that anyone might have. All right. Thank you very much, Dr. Halevy.

00:17:14:09 - 00:17:41:13
Unknown
And yes, we'll delve more into all of this. And right now, I'd like to introduce Megan Claire Chase and she will tell us about her experiences. Hello, everybody. So normally I join these as shares Breast Cancer Program director, but this time I'm on the other side as a panelist because I am a seven year invasive lobular breast cancer survivor.

00:17:41:15 - 00:18:12:00
Unknown
A little bit about me. I live in the Atlanta area and I am a big patient advocate. I share my experience as a young adult because I was diagnosed under 40 and realize that's a whole other barrier and I have shared my story in multiple ways, in multiple mediums. But the most recent, the most exciting was on PBS with their stories from this stage.

00:18:12:02 - 00:18:34:17
Unknown
And I am just I remain active in the cancer community so I can bring that knowledge and expertise into the share community. And so I am super excited to be here today. And also I do have a cat named Nathan Edgar. He may or may not make an appearance. He is 20. So I just wanted to make sure you know that he here.

00:18:34:17 - 00:19:14:16
Unknown
Meow. All right. I am ready to share my screen because we're going to go in to my story. Okay? And then look at that chemo, peripheral neuropathy. I can feel I can feel the button. Okay, So again, I'm going to share a little bit about my experience with CIPA in so first off, a little about my diagnosis. I was diagnosed September 14th, 2015.

00:19:14:16 - 00:19:44:05
Unknown
I got that cancer call at 3:05 p.m. and and again diagnosed with stage two invasive lobular ERP or positive HER2 negative grade two and because being diagnosed under 40, I constantly being called a young adult and I'm like, but I'm in my thirties, how can I be a young adult? But yes, that is a term I hear you're adolescent and young adult when you are diagnosed with any type of cancer under 40.

00:19:44:07 - 00:20:16:03
Unknown
So my, my treatment plan in Atlanta, my infusion nurse, she was amazing. And that's a little old me back there. I had asked Adrian Niacin, which is known worldwide as the Red Devils Eye Toxin and Taxol. And my surgery was a lumpectomy with reconstruction and I had 33 rounds of radiation treatment. And I do like to show this picture of my port because my skin started to burn after my third chemo.

00:20:16:03 - 00:20:55:23
Unknown
So it just got worse from there. But now we're going to get into what we're here today about is the chemo and peripheral neuropathy. So in my first chemo, in the first 15 minutes of the Taxol that I took, I had been warned by my oncologist, like Dr. Ali said, that, you know, I might feel some neuropathy between the but she say like the eighth to 10th chemo and I had 12 well it was in the first chemo in the first 15 minutes.

00:20:56:01 - 00:21:23:20
Unknown
I remember sitting in the infusion chair and I just started like screaming because it took years for me to find out, like really be able to say what it felt like. It felt like a current was running through my entire body from head to toe and everyone like, sprung into action. They had never seen a patient have such a severe and such an immediate reaction to getting that neuropathy.

00:21:23:20 - 00:21:46:19
Unknown
And by that point, like the damage was already done. By that point, I could not feel my feet like at all. It was like my both my feet were asleep and then my hands were doing the tingling, but I felt nothing in my feet and eventually I had to use a cane to finish the rest of my treatments.

00:21:46:20 - 00:22:10:15
Unknown
And it was just really upsetting to me that I didn't have, like, you know, a next step to help, you know, heal from the neuropathy. And so after I'd finished all my treatments and I'm done with all my surgeries, I was told, Hey, take Gabapentin, take that medication. Well, we kept adjusting the dosage. It hadn't zero effects on me.

00:22:10:15 - 00:22:44:20
Unknown
I'm like, I still can't feel my feet. I am falling. I am now a fall risk. Then I was told, Hey, take out glutamine powder. That'll help. Didn't help. Then we tried physical therapy. None of that helped because it was so severe and I started to. I was really worried about my quality of life, especially because I am single and I kept falling and there were times I'd be by myself and I had fallen and there was no one there to help me get back up.

00:22:44:22 - 00:23:17:11
Unknown
So what happened? Now, keep in mind, this is now like six years later. This is my story. I because Instagram, here's everything you say. Literally early last year, I was out of seeing something talking about in rapidly to a friend. And then all of a sudden on Instagram, I start seeing ads about help for neuropathy and this particular one and my chiropractor, Dr. Dan Rigby in Marietta, Georgia.

00:23:17:13 - 00:23:43:21
Unknown
I was intrigued because he didn't just say neuropathy. He specified saying There's commands, peripheral neuropathy, and I had not seen that or heard that from anyone else. And so when I went to him, we did a battery of tests and you're like, What kind of tests? I'ma tell you what kind of test. So to kind of determine the amount of nerve damage, right?

00:23:43:23 - 00:23:58:16
Unknown
I went on. He did like a feather. And first we do it like on my neck, so I would know what that would feel like. We do it on both my hands and we do it on my feet. Something that was prickly. We start with the neck so we know what that felt like. Then we do it on our feet.

00:23:58:18 - 00:24:16:08
Unknown
The one that really scared me the most because it showed me just how bad the nerve damage was is when he said, okay, I'm going to do a blow dryer. He was like, You feel that heat on your neck? I'm like, Yes. He goes, okay, close your eyes, and I'm going to put it, you know, on your feet.

00:24:16:08 - 00:24:37:04
Unknown
Let me know when you feel something. So it's blowing. And I'm like, my eyes are closed and I'm like, Are you what are you doing? Are you doing it? And he said, Please open your eyes. I looked down. I felt nothing like not even the air. And I just burst into tears. And at that point I had severe sensory loss.

00:24:37:06 - 00:25:05:02
Unknown
And so these are the test. And he did a lot of calculations. And again, I just want to preface that this no give a disclaimer. This is my plan. This is what worked for me and my body. I'm just here to give you options, not telling you to do anything. But it helped me that I guess it validated like what I have been feeling all this time and the fact that I knew this was severe and I knew I needed help and this was the first person, he never said, I can get you back to 100.

00:25:05:02 - 00:25:25:21
Unknown
He was like, You are a very severe case. But what I can do is try and get a little bit more feeling so you are not falling all the time or you're not dropping everything and then cutting yourself all the time. And that was actually a picture in December of last year. Just so you know, he's really tall to.

00:25:25:23 - 00:26:00:05
Unknown
So here was my treatment plan. Again, I've got my disclaimer here. So it was called the rebuild or because what I learned about neuropathy and that my blood flow had kind of cut off and I needed stimulation to kind of stimulate those nerves. So what we started with and it's called the rebuild a redo on my hands and my feet, and you turn it up and you can feel like the the stimulations and it's not supposed to get, as he calls it, too spicy, but to feel it.

00:26:00:05 - 00:26:20:23
Unknown
And I would do that. It has an automatic timer 30 minutes and I'm actually turns off. And then this was stuff we would do in the office and then we would do the thermal light therapy it took. I remember the first time when I finally felt the heat that took about seven months before I ever could feel the heat from the thermal light therapy.

00:26:21:01 - 00:26:49:21
Unknown
And when I first I was like, I think I feel something because it was super, you know, it was really, really bad. And my left because my cancer was on my left side. That first moment I felt like some warm. So I was like, my gosh, I have a little bit of feeling. What, are you kidding? So this I would come to the office three times a week and I did this literally for almost a two year period because I stayed consistent, because I had reached the end of my rope and didn't know what else to do.

00:26:49:23 - 00:27:12:12
Unknown
And I was like, I just know I can't keep falling because eventually it's going to be even more serious and end up in the hospital. And I'm almost done and this was my treatment plan at home. So did insurance cover it? Because you're probably wondering that too. Not really. Right. So it was a lot out of pocket. And that is what really upsets me in the cancer space.

00:27:12:12 - 00:27:39:20
Unknown
So many of us really need help and therapies and then it's not covered or it's very minimally covered. But he was amazing, worked out a payment plan with me, but I would use the atoning therapy and that was the thermal like imaging. Right. But thermal to feel that warmth to help with circulation. And then the one with the rebuild the tub and the rubber pads and electrodes, y'all.

00:27:39:20 - 00:27:58:17
Unknown
I was scared. I had to call my mother first. And I was doing this when I was like, I don't want to get electrocuted. But they are rubber pads that go in there and you spray this solution and it actually works as a stimulant. And then the conductive garment gloves, I do that 30 minutes two times a day.

00:27:58:20 - 00:28:22:02
Unknown
And again, it spraying that solution in there and it helps with the stimulation. You feel it in your hands. But my focus at the time was I don't care about my hands. I care about my feet because, yes, I could not feel my feet. I have a permanent handicap sign. So I just wanted to share that little bit of my story and I'm going to stop talking so we can hear from Janet.

00:28:22:02 - 00:29:10:03
Unknown
But thank you for following along with me. Thank you so much, Megan. Claire. And I'm going to hand it over to Janet Crawley now to tell us about her story. Channing, you're on mute. Janet. I think you're on mute. I have two on mute now. Okay, now, you good? Okay, now we're here. So. Hi, I'm Janet Brownlee, and in 2018, I was diagnosed with stage four UPMC and a natural cancer and also found to be BRCA2 positive.

00:29:10:05 - 00:29:52:09
Unknown
And so I had a hysterectomy and platinum chemo and brachytherapy and then a year or two with then Bima and then a year of weekly low dose chemo. And I'm currently now on just 150 milligrams of Lynparza a day and doing very well. My encouraging team is at the John Kerr Cancer Center in Hackensack, New Jersey. So four weeks after my hysterectomy in 2018, I had six rounds of carboplatin and paclitaxel administered once every three weeks.

00:29:52:09 - 00:30:22:20
Unknown
And after the very first infusion I had pain, excruciating pain all over my whole body. And I think that was mycologist at the time didn't believe it, but it didn't happen in the chair like it did for making clear. But it was like right after I got home, I was just like burning up and tingling or whatever you want to call it.

00:30:22:20 - 00:30:52:08
Unknown
I didn't even know how to call it. To this day, I don't know how to call that. I thought yours. Meghan Claire was interesting. You said like a current through your whole body. So I just wanted to mention that. So during those treatments, during my, my first chemo, I didn't, I wasn't offered any cold packing and I didn't ask for it, so I found out about it later.

00:30:52:08 - 00:31:21:17
Unknown
But through my whole, you know, five, six years of treatment, I've never done cold packing. What they do offer us was acupuncture once a week. So I got a half hour back puncture just on my feet once a week for those first six rounds of chemo, and it probably helped. I didn't have anything to compare it to, so I don't know.

00:31:21:17 - 00:32:08:00
Unknown
But I kind of think it did help because after I did KEYTRUDA with an BMI and then I did a platinum based chemo again, the neuropathy came back full force. I was also having trouble falling and started using a cane. But yeah, I didn't start up acupuncture again. So that's I guess about for all my comparison, let's see, during the first year when the pain was so bad, I tried applying CBD oil topically and that actually helped me.

00:32:08:00 - 00:32:33:19
Unknown
And a lot of people said never heard of it or that's impossible or whatever. But it worked for me. And that was some experimentation too, because it it for me personally, it didn't work. If I tried to just rub it in like a muscle rub, it was more like I would put it on top and then like rub it very lightly to work up some heat.

00:32:33:21 - 00:33:20:17
Unknown
And and that helped me a lot, actually, when when I was in a lot of pain. Also, during that first year, I somebody in one of my groups recommended alpha lipoic acid. So I tried that, but it it didn't help me. I did attend a talk at MSK by some therapists who were in like the integrative department, and they had recommended like the marbles in the foot and that maybe some of you have heard of and showed us a certain kind of massage for our feet where you kind of squeeze the foot and then, you know, gently go up.

00:33:20:17 - 00:33:50:06
Unknown
And I tried both of those and they did both help some. I'm sure they told us a lot of other things and I didn't remember or didn't try, but those two I thought were pretty good. We were in the pandemic and there was not a whole lot of things like my work dried up and there weren't a lot of places you could go out.

00:33:50:06 - 00:34:25:02
Unknown
So I was doing a lot of exercise classes on Zoom at home, and they were helping a lot. And also my gym was open and there was hardly anybody there. So I was doing a lot of walking swimming exercises at home and those were all helping me. I did notice after about a year after my chemo stopped, I really started feeling good all over, not just the neuropathy, but in a lot of ways.

00:34:25:04 - 00:35:21:01
Unknown
And I had expected to feel better sooner, but it was exactly one year that I really saw a marked improvement. So basically during the first nine months of 2020, I wasn't having any doctor's appointments and because of the pandemic. So I, I ran to my PCP and had to see a 125 done and it jumped to 400. So that was when we started KEYTRUDA with one bima And I had so many other side effects during that time that I don't even remember what my peripheral neuropathy was like because there were a lot of other things happening and some of them were life threatening.

00:35:21:03 - 00:35:55:21
Unknown
So they had stopped working. KEYTRUDA with MDMA stopped working after a year, and then I went back to regular plant and chemo and then the neuropathy got really bad. So my oncologist took off the Taxol and it was just platinum with no tax on. She thought that was going to help, but it didn't. And I think that's, you know what, looking at time, I think that's mainly my story.

00:35:55:21 - 00:36:34:00
Unknown
So even though even though I think a lot of us think it's the Taxol that really is hurting us the most, taking the Taxol off of my last infusion treatments didn't even ease up the neuropathy at all. So I too did a lot of physical therapy, which helped a lot and yeah, mostly balance for my feet. And then like sensitivity and dexterity things for my hands.

00:36:34:02 - 00:37:02:06
Unknown
I still have a lot of neuropathy in my feet, but I don't need pain anymore and I'm doing pretty well. Thank you so much, Janet and Megan. Claire are these difficult stories and we really appreciate your sharing them with everybody and talking about things that that helped you. Now we're going to start the Q&A. There were a lot of pre submitted questions and you can still submit questions in the Q&A section at the bottom of your screen.

00:37:02:08 - 00:37:30:15
Unknown
We'll try to get through as many questions as we can during the remaining time. I wanted to start with a question for you, Dr. Halabi, because I think we got a lot of questions about this. What medications or supplements, and then we can kind of move into alternate treatments. But what medications or supplements have you found have helped manage a c I Vienna?

00:37:30:15 - 00:38:06:23
Unknown
And are there any new helpful treatment options that are more recent? Okay. Very reasonable question. The thing I'm going to preface this with is that it matters what the medication is treating. So this is part of why it's important to recognize that C IPN if pain isn't a symptom that you're dealing with. So if you don't have burning pain and tingling, a lot of the neuropathic pain agents are not going to be effective for you.

00:38:07:01 - 00:38:41:07
Unknown
So if your prominent symptom is balance and frank numbness with no pain, then me prescribing, for example, something like Gabapentin or Lyrica or Cymbalta, those things are driven for pain and management of pain and specifically burning pain and tingling that is interfering with your quality of life. But there are not medications that are going to remove that feeling of numbness and make the numbness feel better.

00:38:41:09 - 00:39:14:07
Unknown
Okay, So I want to make that kind of clear upfront as far as supplements are concerned, there is one supplement that there is in the literature that was brought up and one of the circumstances that was studied in the context of painful diabete neuropathy is because that's a huge category of painful neuropathy and that supplement is alpha lipoic acid that is an antioxidant and it's safe because it doesn't kind of interact.

00:39:14:07 - 00:39:38:18
Unknown
And for the most part folks don't really express that they have significant side effects related to it. I'm reluctant to kind of give a blanket recommendation for other supplements because what we have to recognize is that there is a lot of nerve repair agents or nerve supplements that are out on the market that actually contain supplements that can contribute to neuropathy.

00:39:38:20 - 00:40:11:15
Unknown
And so you want to be really careful about that because, for example, B6 is really popular, right? B6 is something that's in a lot of hair supplements now, supplements nerve supplements at higher doses and and certainly in most of your B complexes. But that B6 can also be toxic when it's too high. So typically what I want you to know, though, is that it does require that the level is 5 to 10 times the upper limit of normal.

00:40:11:17 - 00:40:40:09
Unknown
It's not necessarily hard to get there, especially when you're taking higher doses of supplements There will be different opinions on this depending on who you ask, certainly from a provider standpoint. But I'm of the camp that if it can contribute and we can start eliminating variables that are potentially making this worse, I'd like to do that. And so if the level is normal, great.

00:40:40:09 - 00:41:10:15
Unknown
We don't really need to give you more of it. And so supplements will have different roles in terms of nerve health. So another one that gets thrown around a lot is B12. B12 is a supplement that that's okay when it's at higher levels, but that contributes to the types of fibers that are responsible for balance and coordination. And there's also some drugs, chemo, drugs that impact how B12 is absorbed.

00:41:10:15 - 00:41:41:23
Unknown
So again, it's very individualized. But from a treatment standpoint, recognize that those agents like Gabapentin, Lyrica, Duloxetine or Cymbalta, that's for neuropathic pain. And then some of the alpha lipoic acid is also for pain and can be effective earlier on. And then there isn't kind of a drug that get rid of it altogether.

00:41:42:01 - 00:42:10:22
Unknown
Thank you very much. And I think you've made the point very much, very clearly that each case is so different and that's where people like you come in to really address the very specific nature of what's going on and what might be best to help. But one thing you did mention during your talk was exercise and PCE. And I think Janet also mentioned that.

00:42:11:00 - 00:42:42:20
Unknown
Is there a specific first of all, how helpful is exercise is and are there kind of specific exercises that are really helpful and do Doctor Halabi speaks making clear in German. If you want to add to that, please do and I'll be brief. Don't worry. The SO physical therapy is tremendously helpful and at the moment it's the best medicine that we have.

00:42:42:20 - 00:43:13:06
Unknown
And a lot of the time, most of my visit, once I've examined you and we've talked about chemotherapy, neuropathy is is convincing folks that it is medicine. It's just that it takes a long time and it takes a routine and integrating it into your daily life in order for you to start reaping benefits. Of course, this is setting aside the fact that if it's not safe, you want to have a prescriptive program.

00:43:13:06 - 00:43:42:03
Unknown
And that's where physical therapy comes in. You know, walking is fantastic for your nerve health. You don't need to jog, you don't need to run just walking and safely but it's always good to do that with the guidance and support of the physical therapist who has given you exercises that are safe for you to do at home for balance, again, recognizing that it's not the once or twice that you're going to go to them once every two weeks, that's going to make the dent.

00:43:42:05 - 00:44:16:00
Unknown
It's you getting a home exercise program and incorporating those things into your daily life over an extended period of time before you start really seeing the benefits of the exercise plus time. Thank you very much. Janet Reagan. Claire, did you want to talk a little? Well, I was going to say, you know, again, everybody is different. I say that a lot because, you know, when I was in P.T., like, so it just did not help that the case was so severe.

00:44:16:00 - 00:44:40:23
Unknown
And it's like once. But I agree about the consistency because I kept being told to walk. But yet when I would walk, I couldn't feel my feet. Or then when I did, I'd have like the burning pain and then the numbness would move up my leg, you know, and then I'd fall. And so I just think it's really important that you recognize when you've reached that limitation or when you're like, I don't think that we're there yet.

00:44:41:00 - 00:45:06:15
Unknown
Maybe we need to start with something a little bit, you know, smaller than walking outside and potentially falling on, you know, a sidewalk. Like maybe we started in the carpet like it's really small things, but I do feel that it's about that consistency. And I was actually talking to someone earlier. She is an occupational doctoral student and I'm in aquatic therapy right now.

00:45:06:17 - 00:45:26:19
Unknown
And for the first time ever, and I think this is so important and with doctors and physical therapists and coaches and everything is that you tell the patient why, like when I just told, hey, here's what you need to do and here's what I recommend and here is why this is going to help with your community's peripheral neuropathy that makes a difference.

00:45:26:23 - 00:45:44:10
Unknown
And unfortunately, in my case, I didn't always have that. I would just be told, yeah, go walking for 30 minutes. Okay, well, what's that going to do? You know what I mean? And, and it's like, only just now that I started to realize that now that I'm with someone who was just superb, like, here's why you do it.

00:45:44:12 - 00:46:31:05
Unknown
Right? Right. Thank you. And, Janet, you said you did have some benefits from exercise. Yes, I did. And I think for me, a lot of the way it worked was that some of the exercises were just about balance. But a lot of them were were about the balancing your like your compensatory muscles because you your feet can't feel that, well, you're strengthening up certain muscles like in your thighs in different places so that when you do need to, whatever it is like turn, get up out of a chair or something, you're not relying on your old sensations they that you use to when you have more, more strength to like get up straight or, you

00:46:31:05 - 00:47:04:01
Unknown
know, or, you know, step up over a curb or something. It really worked for me. It worked really, really well. And they gave me a lot of exercises to practice at home. A lot. Thank you. Actually, this is a question for both Meg and Claire and Janet. Did you feel that you were given enough information about the iPod before you started chemo so that you knew what you might expect if you feel it?

00:47:04:01 - 00:47:37:22
Unknown
So I learned all about it in support groups and webinars. You know, just was hit with a huge, unpleasant surprise and then was scrambling to find out what to do about it. And I would say like I had been told by my oncologist to put my hands and feet and ice, you know, and ice right. But then at first when they were adjusting things and then it starts going and it's literally in that 15 minutes like that was no effect.

00:47:37:22 - 00:47:58:17
Unknown
And that was about all I knew it was. Hank that your hands and feet in ice, that will help. So it won't affect the nerves and it might happen around your 8 to 10. That was it. That's all I found out. I didn't learn about it until, again, like Janet said, support groups, online webinars, and me just doing research because I was like, This is insane.

00:47:58:17 - 00:48:16:08
Unknown
Why didn't anyone tell me that this could seriously affect my quality of life to the point that I do have a permanent handicap sign and I get called out because sometimes I'll get out looking. You know, looking pretty good today and people are like, Is that your mom's? Why are you parked there? You don't belong there. And it's like, I want to scream.

00:48:16:08 - 00:48:43:17
Unknown
I have an invisible L that's, you know, it's very it's also really frustrating. And sometimes I feel embarrassed because I'm like, I should be able to walk long distances and it's affected my weight of being able to move. But now, you know, I'm getting better. I'm getting better. But it's taken years. Yeah. Thank you, Dr. Hill. Abby, talk to us a little more about ice treatments, because there were a number of items related to that.

00:48:43:18 - 00:49:21:22
Unknown
Yeah, I'm going to touch on that. And then I've also seen a bunch of questions on acupuncture, and I'll answer both. And actually this kind of goes back to your treatment question. What I want you to know is that from an FDA approved standpoint, things like cryotherapy, some of the therapies that our colleagues here mentioned, we don't actually have the evidence that we like to point to and say we did a randomized double blind controlled study where this group got this and this group got that, and this was the outcome.

00:49:22:00 - 00:49:48:12
Unknown
And I want to be very transparent about that. Sometimes you will go back and think, Well, what if I had done cold therapy or what if I had done acupuncture, I wouldn't be here right now. And I want you to know that the evidence that we do have for those things tend to be equivocal. And so usually in clinic, what I will say is if you that it helps you and you're able to tolerate it, go for it.

00:49:48:14 - 00:50:13:03
Unknown
If you can't tolerate it and it's miserable for you to sit there for 90 minutes with gloves and cold booties on, it's okay. And the same is true for acupuncture. If you give it a try and it's helpful to you. I'm not taking that away from you. That's wonderful that it's helpful. If it's not helpful to you and you don't feel like you're getting a benefit, sometimes it can be cost prohibitive for folks.

00:50:13:03 - 00:50:36:12
Unknown
And so I don't want you to feel that, you know, this is something, you know, miraculous that you could have done to completely avoid the situation altogether. Is it nice to have help? Absolutely. Has has there been a benefit for many of my patients to do both? Certainly about kind of what was alluded to before is we don't know either.

00:50:36:12 - 00:50:57:23
Unknown
Right. So we don't know if you would have been the same if you did it versus if you didn't. And so when you're in position that you're in where you're kind of navigating all of this by yourself and you're trying to figure out, well, what can I do to make things better, go for it. If it's safe to to do the cryotherapy and you're tolerating it, that's reasonable.

00:50:57:23 - 00:51:34:04
Unknown
If you're not, don't worry. Because we we the evidence is equivocal. Thank you. Do a lot of hospitals have people like you who are specialists who can really, really help with this issue? Or is your or is your institution on the cutting edge? You know, I our our clinic is the only one of its kind that I'm aware of where we have a dedicated chemo neuropathy clinic and a chemo neurology program.

00:51:34:06 - 00:52:05:09
Unknown
It's neuropathies are a tough area, mostly because of lack of interest and lack of funding. It's not a popular funding area, so it's difficult from a resource standpoint, if I'm being honest, it's it's tough to do. But fortunately, from an institutional standpoint, they and from an oncology standpoint, we've been able to have this collaboration to get folks in.

00:52:05:11 - 00:52:31:15
Unknown
I do think that there has been a lot of the field is a little bit more galvanized now because of the lot of the newer drugs that are coming out have significant neuromuscular and neurologic toxicities. And so I think that that is going to change. But we'll just have to keep having these chats so that we can remind folks that we're here and we need support.

00:52:31:16 - 00:53:12:13
Unknown
Well, thank you. And there have been a few questions about and you alluded to this in your talk about chemo, of course, can cause that's also immunotherapy. Are there other treatment regimens, PARP inhibitors or anything like that that can also other cancer treatments that can also cause this? So the idea I think the short answer is yes. However, you know, we're also in the fortunate position at UCLA where we the from a clinical trial standpoint, we get exposed to a lot of the newer agents that are coming down the pipeline.

00:53:12:15 - 00:53:42:04
Unknown
So I think that, you know, the easy answer is yes, that there are other categories of drugs that can cause neuropathy. But I think immunotherapies are a big category, especially because of some of the more acute toxicities. And by immunotherapy we mean drugs like the pembrolizumab that was mentioned earlier, or KEYTRUDA. Nivolumab is another one that you'll hear about.

00:53:42:06 - 00:54:15:10
Unknown
But I guess is the short answer to your question. Thank you very much. I had a specific question for you, Megan. Claire, how much feeling did you regain through your your treatment that you've been doing with the chiropractor? Yeah. So I got it a little bit over 40% feeling in my feet. And the fact that now I can actually feel if I step on glass, there is a time I did not feel at all.

00:54:15:12 - 00:54:33:13
Unknown
I can actually feel the gas and the brake pedals aren't gas, y'all. I was driving and it's like when you have a disability, you know, you learn how to how to drive. But now it feels good. Actually feel the gas in the brain. Sure, everyone else is happy with that too. But but this also is over a two year period.

00:54:33:13 - 00:54:59:04
Unknown
Like it takes time and consistency and, you know, as much as I wanted like immediate, like, okay, come on, I want to like, steal something. I had to really be consistent with what I was doing. So I do have when I'm like little over 40% in my feet, my hands, I spent more time on my feet first. So now I'm starting to pay more attention to my hands and we'll see that it improves.

00:54:59:06 - 00:55:39:14
Unknown
Thank you. Dr. Halevi, one last question. Are there some clinical trials related to neuropathy going on? There are around the country. There is some. They're they tend to be more what are called natural history or observation studies. That's kind of what we are undertaking because it is very challenging in terms of kind of criteria as it relates to who should be getting an intervention versus who shouldn't be what is the drug they're receiving?

00:55:39:14 - 00:56:16:11
Unknown
What if they're receiving combination therapy? So you can always go to clinicaltrials.gov in order to see what's out there. Usually they tend to be geared toward physical activity or those kinds of potential interventions. Are is is an observational study looking at kind of potential genetic risk factors for the development of CPN. But at the moment of what's out there is is observational because we still need a lot of information before we can start kind of treating folks.

00:56:16:13 - 00:56:43:09
Unknown
Thank you very much. And Janet, you mentioned that you had tried CBD oil, I think, and that was just tell us a little more about that experience because a couple of people did ask about that. Yeah, I don't know. I think a friend of mine was using CBD for, some other kind of pain at the time and and I decided to try it topically.

00:56:43:10 - 00:57:30:01
Unknown
And I just found this little like cooking method that worked for me was, you know, just to like get some heat going on top of it. And I relieve from that I was just looking in the Q&A and somebody asked about frankincense and I was getting a lymphatic massage from from one of these like cancer cancer days. First ladies and the therapist recommended a frankincense and myrrh oil or cream or something, which I didn't buy.

00:57:30:03 - 00:57:56:01
Unknown
She showed me what And she, she says that that she she recommends that for neuropathy, like, you know, to rub it in your feet and whatever. But I haven't tried it. Okay, well, thank you very much. And are you the same class question When you asked Meghan Claire, where are you at at this point? Are you are you a lot better?

00:57:56:03 - 00:58:22:13
Unknown
Yeah, I'm doing a lot better. And I but I do keep up, you know, I get a lot of exercise, I massage my feet every night. Really? Even sometimes it's just putting hand cream on them. But massaging for a while and my hands for a while. I really. I was dropping things. I was cutting myself when I was cooking.

00:58:22:15 - 00:58:48:13
Unknown
But I think that the physical therapy helped a lot with with that. And I haven't been keeping up any hand exercises, but I don't have trouble buttoning my buttons and all those things that I was having a couple years ago. Thank you. Well, I'm afraid I know there's so many questions that people have, but I'm afraid that our hour is up.

00:58:48:15 - 00:59:17:22
Unknown
I'm glad. I hope we've been able to provide more inside information to everybody. And thank you so much, Dr. Halevi, Meghan, Claire and Janet for this really informative program. And thanks to all of you for joining us and submitting questions. Make sure to check out shares, upcoming programs which are all listed on our website. And we will be sending out a that actually please take a moment to fill out the survey.

00:59:17:22 - 00:59:38:00
Unknown
At the end of the of this webinar. The survey will show up in the browser when the webinar ends, and the link will also be in the follow up email and all surveys are anonymous. So this concludes our webinar and thank you so much everyone for joining us and hope you have a wonderful rest of the afternoon and evening.

00:59:38:02 - 00:59:42:16
Unknown
Thank you. Bye bye.