Episode 9: Chemo Brain Facts and Fiction

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[0:00:46 Speaker 1] welcome. We hope this episode finds you well. You’re listening to cancer uncovered from the Livestrong Cancer Institutes, which is an emerging cancer center in Austin, Texas, at Dell Medical School, which is a part of the University of Texas at Austin Hook um, horns. I am Kristin Winn proud U T L um, and your friendly senior administrative program coordinator here at the L. C. I always excited to lead you through a conversation with cancer experts that reveal something unique about oncology and cancer care. As you are finding your way in the world of health care and health science this month, we’re uncovering chemo brain with Dr Shelley Kessler. The American Cancer Society refers to chemo brain as mental cloudiness or changes that patients might notice before, during and after cancer treatment. This cloudiness or mental changes commonly referred to as chemo brain doctors and researchers may call chemo brain many things such as cancer treatment related cognitive impairment, cancer related cognitive change or post chemotherapy cognitive impairment. The word cognitive refers to the way your brain works to help you communicate, think, learn, solve problems. And remember Dr Kessler is an associate professor in both the School of Nursing and the Department of Diagnostic Medicine At Done Medical School here at the University of Texas at Austin. She’s an expert in cognitive neuroscience and advanced neuro imaging analysis. She is the director of the Cancer Neuroscience Laboratory and the co chair of survivorship and supportive care research for the Livestrong cancer institutes. Dr. Kessler was kind enough to sit down with me and give us the latest information on the concept of what is known as chemo brain what it is, what it is not and how it impacts cancer survivors. And as always, we take a few moments to discuss Dr Kessler’s career path and her insights for our future leaders in the field. Can you explain for us what is chemo brain.

[0:03:03 Speaker 0] Sure, absolutely so. Chemo brain is really kind of a nickname that has been given to chemotherapy related cognitive impairment, probably because that’s kind of a mouthful to say. But patients with chemo brain have difficulties with skills like memory thinking, attention processing speed, those kinds of cognitive abilities after their cancer treatment. And these problems can last many years or even decades. And in some patients they actually get worse over time. So it can be a really long term problem that patients deal with. And we see that in a lot of patients because of their chemo brain symptoms, they have trouble in the workplace. Sometimes they even lose their jobs as a result of these symptoms because they’re not performing well and people don’t understand. You know why they think you’re done with cancer or, you know, you’re you’re in remission or you know you’re done with your treatment. So why are you still struggling? And they can have difficulty managing their finances? A lot of people tell me about they can’t track conversations with their friends and family, and so people get frustrated with them. People who go back to school after cancer have trouble doing their exams, and a lot of patients actually have difficulty keeping track of their medications and their treatments. They describe feeling foggy and slow. They often get depressed and anxious, as you can imagine, because they feel like a part of themselves has been lost and you know they don’t understand why. And in truth, I should mention that cognitive decline can occur after several cancer therapies, not just chemotherapy. We see it happen after surgery after radiation, high dose steroids, hormone blockade. All of those have been associated with similar difficulties, So chemo brain is not a completely accurate name for this issue. But the chemotherapy effects are what have been studied so far the most, and we know a lot less about the effects of other treatments, like steroids and hormone blockade. So all in all, it’s been called chemo brain to kind of capture all of those side effects, and some of that is just the difficulty in separating those out. Because most patients get a combination of treatments and, you know, it’s really hard to say, Oh, it’s this, and not that we can see patients who have had, for example, chemotherapy and radiation versus patients who’ve just had radiation, and we see that the ones with chemo report more problems. But is that because of the chemo, or is it because they had more intensive treatments? That is unclear.

[0:06:05 Speaker 1] What are the percentage of people that end up with chemo brain? Who’s been through a cancer diagnosis?

[0:06:11 Speaker 0] So it’s one of the most common side effects of cancer therapy. It’s the estimation is that it affects 60% or more of patients at some point during their cancer treatment and prognosis, or even into late survivorship.

[0:06:29 Speaker 1] This was mentioned a little bit in what you just talked about, But why does this happen?

[0:06:35 Speaker 0] Well, there are several ways that chemotherapy can affect the brain. Most chemotherapies work by disrupting or interrupting various phases of the cell cycle to prevent cell division right, because cancer is characterized by these rapidly dividing cells, and this disruption is achieved most often through damage to DNA and or are any. But this is not specific to the cancer cells. It can’t target just cancer cells. Unfortunately, that would be a miracle if we could figure out how to do that. And so those side effects affect the cancer cells, but also your healthy cells and the cells in the brain, which are called neurons. There are several regions of the brain where neuron production is ongoing, so you do have a lot of cell division where there’s neurogenesis, so those regions would be very vulnerable to the effects of chemotherapy. And our brains are constantly adapting and learning through reorganization of its networks, and this is known as neural plasticity, and that depends critically on neurogenesis. So if you disrupt neurogenesis, then we disrupt neural plasticity, and then therefore you disrupt how the brain functions, and there’s other mechanisms as well. Chemotherapy increases inflammation, which is really toxic to your brain cells, and then inflammation as well as some other consequences of chemotherapy are toxic to mitochondria. Of course, mitochondria are really critical for energy production, and the brain consumes about 20% of the body’s energy. So more than any other organ systems. So you can probably imagine that if energy production is reduced, then the brain is just not going to function properly.

[0:08:36 Speaker 1] I feel like chemo brain is something that comes up a lot, and that is sort of thrown around and used a lot So what are some common myths about chemo brain that you could share with us?

[0:08:48 Speaker 0] Well, one of the biggest myths you know from really early on, right when patients you know first began to describe this was that chemo brain isn’t possible because most chemotherapies don’t actually cross the blood brain barrier. And you know, that’s the blood brain barrier helps protect the brain from toxins and pathogens. But it’s certainly not an iron curtain that keeps everything out. And sometimes bad things do get in, and sometimes it’s restrictiveness is actually impaired. And what’s one of the things that impairs it? Chemotherapy. And so you know, if you’re if you’re getting chemotherapy, then there’s a chance that your blood brain barrier is actually becoming leakier and more permissive. And there are some studies that have shown that really small amounts of chemotherapy do actually get into the brain, even though, like I said, they have restricted access, and our group and some others have shown that even these small amounts are more than enough to cause really significant damage to brain cells. So that was one of the biggest ones, and then I think the other most common myth about chemo brain is that it’s just due to the stress of having cancer. You know, that whole thing some patients here is Oh, it’s just stressed, You know, This, in my opinion, is a really irresponsible thing to tell a patient because you know, it doesn’t help at all. It just makes them feel even more stressed as well as really invalidated. A lot of patients have told me they felt like they were going crazy or they were really worried. They were starting to show signs of Alzheimer’s disease. And so being told it was just stress just made everything so much worse for them. You know, of course, cancer is a very stressful situation. It’s associated with a lot of stress, and stress definitely doesn’t do your brain any favors at all. But the research evidence has shown us that chemotherapy symptoms do occur independently of stress and that the patterns in the brain that are associated with the chemo brain symptoms are different than the ones that are associated with their distress symptoms. And chemo brain has also been repeatedly shown in animals who have been treated with chemotherapy. You know all of that evidence is accumulating to suggest that it is a real thing, and chemo brain certainly interacts with stress, but it can’t be entirely explained by it. And one thing that’s interesting is that this myth is not specific to chemo brain. You know, many patients with neurologic symptoms that are hard to explain are often told their problems are just stress, like this happened early on in fibromyalgia in multiple sclerosis. And we’re actually seeing this emerged right now with Covid 19. There are a lot of patients who have had mild covid symptoms, and they recovered at home. You know, they didn’t have to go to the hospital, but they are now experiencing what’s being called post acute covid syndrome, and that includes symptoms of fatigue and muscle weakness, memory problems and even seizures and other debilitating symptoms. And no one currently understands what’s going on. And I actually saw a news report on this recently where the patients who are being interviewed about it said they were told that it’s just stress, and so it’s a very similar situation, so I don’t think it’s OK to say that. I think it’s okay to say, you know, I don’t know why this is happening to you. I’m sorry this is happening or something along those lines. Not just it’s just stress, because that means to a patient that it’s not real. And that’s very difficult for them.

[0:12:53 Speaker 1] Yeah, so it makes me wonder, too. Are there ways to combat chemo brain?

[0:13:00 Speaker 0] Well, unfortunately, there aren’t any standardized evidence based treatments for it right now. Most of the research and again, it’s been pretty limited thus far. But physical activity is the most robust of what we know helps, and, you know that’s obviously not specific to chemo. Brain physical activity is so important for your brain in general and for your, you know, your overall health. But there have been several studies showing that it can help with chemo brain symptoms. And you know, some patients with cancer have physical limitations, and they can’t go out running or do you know really vigorous aerobic exercise? But there’s evidence that even gentle yoga and stretching exercises, you know, walking those can all help came over in symptoms. We also see some studies showing cognitive exercise can be helpful. Some patients benefit from like a short trial of a stimulant medication like Ritalin that can really help, especially if they have fatigue. What I is that it often depends on the patient, you know, and what what their life looks like. You know what limitations they have, what their specific symptoms are. So I don’t know that there’s ever going to be one treatment for it,

[0:14:23 Speaker 1] right? It seems like even just knowing it’s out there and that it’s not, it’s not just you, and it’s something that you can bring up with your physician then. Then you make a plan. If you if you think you’re experiencing that, it seems like it’s just normalizing. This is a lot of it. This keeps coming up for me, and I don’t know that this is podcast, whether or not because it’s probably not the right audience. But I keep thinking of like, after having two kids back to back, I have just noticed that my brain is not the same, like I’m just not at a level of sharpness that I was pre kids. And for me, just normalizing that and talking to other moms about it or talking to my physicians about it has made it like, uh, I’m not just going crazy. Like, you know, this is this is real, Like other other moms experience this.

[0:15:16 Speaker 0] Yeah. No, I’m so glad you brought that up because I’ve been really surprised and amazed by how effective that simple thing can be. A validating their experience. You know, when I first gave a talk about this several years ago to a survivor group, I was really terrified to get up there and show them, you know, all this widespread brain damage that we were seeing. And I was, you know, just really nervous. It was one of the worst talks in terms of anxiety I had to give. But they gave me a standing ovation and they came up three words. And we’re like, I have been so confused about this, you know, I was told it wasn’t real. And here you’ve got these pictures showing me that it’s real. And so I’ve had several experiences like that. We’re just like you said, normalizing and validating. It has been an intervention in and of itself.

[0:16:13 Speaker 1] I was fortunate enough to sit in on a seminar series that you were a part of. I heard people talking about and you had mentioned this to chemo brain, sort of being a part of their life for a long time afterwards, like decades afterwards. In some cases, I heard. And so is there any research out there about, like, I’m 10 years into chemo brain like, What does that person do?

[0:16:39 Speaker 0] I mean, there’s definitely data that, you know, we see 20 years, you know, people still dealing with it. And so, you know, I think based on that for some patient, it’s going to be their new normal. And so part of it is, you know, the whole adjustment to that and the grief. You know, the loss. And there are a lot of things like that with cancer, you know, a loss of of the way you were physically and also now the loss of the way you were mentally. And it’s part of survivorship that often gets so neglected in their care. You know, once their cancer is in remission, it’s like, you know, they go somewhere else and we don’t know what to do. One thing that I have noticed, too, with patients who have really persistent issues, is is relearning how to do things. You know, I see a lot of it as affecting kind of the automatic processes that our brain does for us. You know, like I’ve experienced so many times driving to and from some place. And I was thinking of other things, and I’m like, Oh, I hope I stopped, you know, at the stoplights. I don’t Yeah, Unfortunately, you know, my brain is really efficient and effective. It kind of taking over some of those things. And I see that in chemo brain, a lot of that is lost. And so now they’re having to concentrate so much harder on things that they’re brain dead automatically. And so anything they can do externally to kind of support themselves. And it’s it’s stuff that you have to cringe doing, you know, like taking notes or, you know, putting alerts on your phone because you didn’t used to have to. Those simple things can actually be really effective. But it’s just getting to that point where you’re like, OK, this is what I do now.

[0:18:29 Speaker 1] Do you find that this is like this is common knowledge for those working in the field for oncologists? Is this something they consider and talk to their patients about, or is this still kind of new information for them.

[0:18:44 Speaker 0] I’ve definitely seen it change over probably the last five years. Maybe, you know, initially, it seemed like very few people knew about it or if they had heard about it, they had mostly heard the myth that it didn’t exist and wasn’t it wasn’t possible. Now I see more and more oncologists who are very aware of it. I think it’s still a bit on the fence as to whether they believe it or not, or know exactly what to do about it. And it really depends on the oncologist and hear enough still from patients saying that they were told that it was just stress or that it wasn’t real, that I think it’s still really widespread issue that it’s not widely accepted. And I hear from other colleagues as well, that there’s a lot of resistance to them trying to assess the patient’s or do this kind of research because the oncologist says they don’t think that it’s a priority or or a real issue. You know, most all of the physicians I’ve worked with are very supportive and and want to know about this and better understand it. But we do see a lot of patients who say they’re having trouble, but then when you ask them to really like, quantify it, they always minimize it, which is really interesting. And so I do think there’s that psychological defense that comes into play because you just don’t want to think that you’re not as smart as you used to be. It’s so awful. And so even though they’re like This is so distressing to me and it’s interfering with my life. There’s this battle between, you know, wanting to really go for that and admit it and wanting to be like, No, I’m going to be okay. And so I have seen that a lot. And also, another interesting thing we see is that this battle between depression, anxiety and chemo brain you know, that’s one of the myths like I mentioned. But you see that playing on this other side, you know where they’re being told. Oh, it’s just stress. But then the patients are so resistant to the fact that stress does play a role and that if you get treatment for that, that it can help, even though it could be very separate things, you know, I’ve had so many patients who are like, No, I want it to be brain damage. I don’t want it to be depression And I’m like, Well, we have treatments for depression, So I would rather that you had depression and not like chemotherapy brain damage. So there is still this horrible stigma to about mental illness, and so you have all of those factors at play that make it a really complex issue.

[0:21:32 Speaker 1] So I wanted to spend some time to talking about your background and how you ended up doing this type of work and maybe for our audience to sort of break down a little bit about what it is that you do.

[0:21:44 Speaker 0] I was always really interested in computers from a really young age. I started coding very young, and I wanted to be a computer program are actually. But I also was very interested in how the brain works and, of course, thought of the brain like a computer, which is obviously not a novel concept. I thought it was when I was younger. It’s not so. I wavered between the two computer science and psychology, like through my early education and then my senior year of college. I was introduced to neuro imaging research by one of my professors, and he was a neuropsychologist, which I had not heard of. And so I started working in his lab, and I thought that it was this perfect combination of computer programming and neuroscience, because that’s what he did. So I ended up getting a PhD in neuropsychology. But it turns out that that’s not really what neuro psychologists do. They’re like, you know, usually clinicians, and there’s no computational side to this training. So I ended up doing quite a long post doctoral training in cognitive neuroscience, and this is what I was actually looking for. The neurology, plus the computation. That’s what I do now. And I discovered chemo brain I. I studied things like traumatic brain injury and carbon monoxide poisoning and preterm birth. I had a big project on that at Stanford because I was really interested in an injury and heaven. How does your brain recover from injury? Because we could see these, you know, pretty catastrophic injuries where people almost died, but then they can still function like fairly normally, and I thought that was really fascinating. And then, while I was at Stanford, I worked with this professor who studied the effects of depression in patients with cancer. And he’s the one who introduced me to this concept of chemo brain. And I was really drawn to it because it’s an injury that we know is about to happen, which is you rarely ever know that. And so it was this really interesting opportunity to study very uniquely how the brain would respond and then in terms of what I do. So mostly I I do research. I am writing grants and trying to get money, always scrambling for money as academics to and conducting these studies to, you know, advance my ideas and and try and figure out these issues around chemo brain. I also teach here at UT. I teach research, a research class and a statistics class, and I’m actually the director of statistical services for the School of Nursing. So I do statistical consulting, and I oversee some of the other staff that helps out with statistics, and I am a software developer, so there’s still that part. So when we do neuro imaging research or, you know, a lot of my research involves big data machine learning, and it really requires software that you know just doesn’t exist. You can’t just go and download it, and so we have to create it ourselves. That’s actually been one of my favorite parts of the job is being able to create and share some of those tools for the research community you know, to do more and better types of analyses, and especially on neuroimaging data. It was kind of a strange pathway, didn’t go directly anywhere. But I tried out some different things, and I think you can end up in a really fascinating place in a non traditional route. Perhaps

[0:25:29 Speaker 1] it’s super important to here and that that’s what we keep hearing from everybody to, is that everyone says, Well, you know, I took this really odd path, which to me is yes, everyone takes this sort of winding path. It’s not perfect. It’s not what you think it was going to be.

[0:25:45 Speaker 0] Yeah, you’re not going to know what what is best for you. When you’re 18 years old, you just won’t. You know, you can’t. You don’t figure that out for a long time, so it’s hard to be like I’m in a major in this, and then that’s going to be your life. And it doesn’t have to be like you. Most people change careers many times throughout their lives. Actually,

[0:26:04 Speaker 1] yeah, so and you had hinted to this a little bit earlier. But what advice would you give to students that are thinking about pursuing work in health care or health, science or cancer?

[0:26:18 Speaker 0] I think I would maybe just shamelessly put in a plug for considering survivorship care and research, because it’s just such a highly neglected area of health care in general, but especially cancer. And obviously it’s extremely important to focus on the biology of cancer and finding treatments for it. So most people are interested in that those areas for a very good reason. But more and more patients survive cancer, which is what our goal is. These issues are going to come up and continue to be a major part of health care. And so I would say, Just keep this in mind and realize that there are a lot of opportunities for clinical practice and clinical research across the entire spectrum of cancer care, not just the treatment and cure, but also, you know, to really engage in evidence based practice. I mean, I know that’s like the big buzzword nowadays, but it doesn’t necessarily mean that it’s what’s being done, and it doesn’t exist at every institution, and there’s still barriers to its implementation. And so I would say, you know, to advocate for it and to practice it and just set an example for it because, you know, a lot of these myths that occur here and elsewhere happened because some authority says, Well, this is how it is. But you know, they didn’t look into it. They didn’t study it. That’s just their opinion. And so really relying on evidence, I think, is critical for health care. And it’s certainly this is a great example of that. Chemo brain is a great example of that of how you know the way we treat patients should be evidence based and not supposition based.

[0:28:07 Speaker 1] Thank you, Dr Kessler, for taking the time to talk with us today, sharing your time and expertise. If you have questions for Dr Kessler or if you have other cancer questions that we can uncover, please reach out and email us at Livestrong Cancer institutes at Dell Men dot utexas dot e d u. You can find out more about the Livestrong cancer institutes at dell med dot utexas dot e d u You can find out more about the Livestrong Cancer Institutes clinic with UT Health Austin at ut health austin dot org You can also follow our chair. Dr Gail at heart on Twitter AT S Gail Eckhart Eckhart is spelled E c k h a r D T. This is Kristen Win signing off for cancer uncovered. Thank you for listening and learning with us