Presenter: David Sabsevitz PhD, ABPP-CN, Medical College of Wisconsin
Many people report cognitive problems, such as forgetfulness and difficulty concentrating, after transplant. Changes can range from vary subtle, to annoying and affecting your life-style, to very severe. Learn which strategies are effective for managing cognitive problems, and which are not, after transplant.
- Cognitive problems, such as problems with memory and attention, are common after transplant and usually resolve within a year
- Medical treatments, life style, genetics and mood can contribute to cognitive problems
- Claims that brain games and over-the-counter supplements can improve cognition are not backed by scientific evidence
00:57 What is cognition?
01:36 Changes in cognition—thinking—are common among patients undergoing cancer treatment
02:44 What is “chemobrain” or “chemo fog”?
03:39 Common symptoms of cognitive problems or “chemobrain” after transplant
06:15 Most cancer patients experience improvements in chemobrain symptoms a year after
09:13 What causes “chemobrain” (memory and attention problems) after transplant
13:18 How do you diagnose chemobrain?
18:51 Strategies to treat memory problems
31:28 Strategies to address attention problems and staying focused
39:54 Do brain games, medication or over-the-counter supplements help memory and attention?
Transcription of Presentation
00:00 Introduction: First, I want to welcome everybody for coming to this talk. I told the first group that I lectured to this morning that I give a fair amount of talks across the country every year. I've done this the third time now. This is my third time. This stands out as one of the more personally rewarding talks that I give. A think a lot of it has to do with the fact that I'm talking to you guys. I'm talking to the patients. I get to hear a lot of incredible inspirational stories and really kind of feel your strength and that means a lot. I really enjoy coming out and doing this and thank you for having me.
00:34 Outline of talk: Today, I'm going to be talking about the cognitive effects of cancer treatment. The term "chemobrain" is often used to describe that. We're going to talk about that. I'd like to also talk a little about how we can assess for this; and, more importantly, what can we do to try to make things a little bit better?
With that being said, this is the outline for today's talk.
00:57 What is cognition? A good place to begin is sort of defining this term "cognition". I'm going to use it a lot as I talk today. The term cognition essentially refers to how we think, how we interact with the world around us. There's lots of different brain processes that go into this term cognition. Memory, for example— remembering things day to day— our attention; our ability to focus; our language abilities to understand what we hear and communicate with others; our reasoning and judgment; all of those things make up what we call cognition. As I talk about cognitive symptoms and cognitive changes, they could be changes in any one of these domains.
01:36 Changes in cognition—in thinking—are common among patients undergoing cancer treatment: I'm going to start by giving just sort of a general overview of cancer and cognition. The first point I want to make is that cognitive symptoms, changes in thinking, are not uncommon in the cancer population and in patients undergoing treatment. In fact, if you actually look at the research, the rates are variable, but some studies report as high as 70 to 75% of patients that are diagnosed with cancer and/or go through treatment will experience some concerns about their thinking or changes in their cognitive abilities.
The severity of these changes vary from very subtle, to the point where you'll notice them, they'll frustrate you, but you continue functioning in a pretty good way, to more severe where they can actually affect academic performance if you're in school or affect your ability to perform your job. It does vary. In some individuals, these symptoms can persist for a long time. We're trying to understand why that is. The question of why some people experience these changes and some don't; why do some people experience these changes for a longer period than others; these are things that research is focusing on and is a main focus in this area. We'll talk a little bit about that today.
02:44 What is “chemobrain” or “chemofog”? I talked about cognition. Well, what is "chemobrain"? "Chemobrain" is a term that refers to these cognitive symptoms that occur in response to chemotherapy treatment. A lot of patients describe it as if they're walking in a fog—Anybody relate to that kind of feeling?
I'm not a big fan of this term "chemobrain" because, in my experience, and I think the research supports it as well, is that in any given patient, there can be multiple things that can cause these cognitive changes or be contributing to it. It's not always the chemotherapy. The chemotherapy contributes—there's no question about that—but there's lots of different factors. We'll be discussing that today. I'm a bigger fan of using the term cancer-related cognitive changes or cancer- related cognitive dysfunction. I'll use the term "chemobrain" through this lecture because it's the popular term and it's well-recognized.
03:39 Common symptoms of cognitive problems or “chemobrain” after transplant: So what are some of the common symptoms in the patients that interact with?
Forgetfulness, changes in memory are pretty common. You'll hear things like, "Yeah, doc. I walk into a room and I forget. Why was I walking into this room?" Or, "I had a conversation with somebody yesterday and I don't remember the specifics of what we talked about." We hear a lot of about forgetfulness.
Problems with multitasking: patients will often complain that, "I used to be able to do 20 things at one time and now I just have to focus on one thing and only one thing at a time."
Problems with concentrating: staying focused in the moment, it's another common complaint.
Word-finding problems: that annoying tip of the tongue thing that we all experience; where we can't just get that word out. We know what we want to say, but we can't get the word out. Patients that go through these type of treatments report more of that in their day to day life.
Some people also complain about things like, "It's harder for me to plan out my day and keep organized." We refer to those as executive functions, higher level cognitive processes. These are some of the common symptoms that we hear about.
04:40 The rate of chemobrain among cancer patients is quite variable; 1/3 of patients with “chemobrain” had cognitive problems before treatment: Most of the research in this area has been done with the breast cancer population. Just to give you a little history, this whole idea of "chemobrain" was largely ignored up until the last decade and change. There's been sort of an explosion of research more recently that's really kind of informed us about this, but most of it's been done in breast cancer patients. Here's what we know from that literature. We know that the rates of this "chemobrain" phenomena, they vary. Again, they can range anywhere from 17% all the way up to 78%. I'm interested in this variability. Again, it speaks to the fact that not everybody gets it. Some people do. Some people don't. Why is that the case? We'll talk about that, as I said, later.
Fortunately, the cognitive changes that these patients experience tend to be more on the mild side. We're not talking about severity equivalent to Alzheimer's and types of dementia. They're more on the mild side. They're noticed, they're frustrating, and they can be limiting to some degree; but most people can continue to function with the right accommodations and learning compensatory strategies and can function quite well in many cases.
The other really interesting thing we've learned from the research is that about a third of cancer patients, before they even get treatment, will show some signs of cognitive changes. Before treatment, a third. That's a big number. That, to me, I think indicates that "could the cancer itself affect our brain in some way?" There's other factors as well that we'll discuss, but it's something that is definitely an interesting research finding.
06:15 Most cancer patients experience improvements in chemobrain symptoms a year after treatment: When we look at longitudinally how patients do, most patients experience improvement in their symptoms about a year out from treatment. Again, there's a certain population that will continue to experience these symptoms more in a long-term manner. We also know from other lines of research from brain imaging that we can actually see changes in the brain in cancer patients that undergo chemotherapy. We have techniques that allow us to actually measure the size of different structures in the brain. We can do that before and after chemotherapy. There are some studies that have documented some shrinkage in certain parts of the brain in response to these treatments. The good news is that, over time, those structures seem to normalize and kind of rebound in their size.
07:01 Patients who have undergone chemotherapy have to work harder to produce the same results as someone who did not have chemotherapy: We also have imaging techniques that allow us to put you inside a scanner and have you do different cognitive tasks, like tasks for attention or memory, and we can look at your brain in real time and look how different parts of the brain become activated as you're performing tasks. There's a number of studies that have come out that have shown some differences in patients that have undergone chemotherapy compared to those that have not. Some studies show that "chemobrain" patients, their brains have to work harder to produce the same results as somebody that didn't have chemotherapy.
07:32 “Chemobrain” (cognitive problems) in transplant patients is similar to that found in studies of breast cancer patients: As far as bone marrow transplant, and the research in that area, there's not as much research in the BMT population as let's say breast cancer but there's definitely a number of studies; and the results are very similar to what we see in the breast cancer population: that cognitive changes are not uncommon, that we do see improvement, at least a number of studies suggest that, although not everybody bounces back as quickly, and that we also see about a third of patients will show some signs of cognitive changes even before they get their treatments. Again, a lot of consistency in the results even across different types of cancer.
08:09 Historically, cognitive changes after transplant have been largely ignored by physicians: Why am I boring you with these numbers, these percentages, and brain images on the screen? I think part of it, in my opinion, is rooted in kind of the history of this type of stuff. And that is that this was largely ignored up until recently. I asked the first group that I talked with today,
"When you guys were getting ready to go through your treatments, how many of you had your doctors talk about cognitive side effects or the possibility of developing this? Raise your hand if you didn't hear anything about those possible side effects. Again, I think some of that is that this has been a largely ignored phenomena up until more recently in research history. There are other reasons too. Your doctor's obviously focusing on your survival as the primary thing that they're interested in, but this is something important. A lot of patients can be blindsided by these cognitive changes. They just totally weren't expecting those. I put this in here to kind of inform you as an audience. As you interact with your doctors, if you have concerns about your thinking, you can share some of the knowledge from some of this research with them.
09:13 What causes “chemobrain” (memory and attention problems) after transplant? I want to switch gears a little bit and talk about what we don't know. What we don't know is what is the exact mechanism—what is the biological mechanism that happens that causes these cognitive changes in response to chemotherapy? There is not an answer for that yet. There's a lot of research being done.
I think that research has a lot of promise in trying to better understand this, which hopefully can guide more informed treatment for these cognitive changes, but there's a number of hypotheses that have been put out there. I'm not going to go through this in great detail, but they range from the chemicals themselves can actually damage the cells in our brain. They can alter the DNA, which is essentially the code that tells our cells what to do. It can actually damage that. There are thoughts out there that we get this inflammation response in our body, including in the brain, which can cause some of these cognitive changes. In some types of cancers, these treatments can cause hormonal changes and hormones have a big impact on our thinking abilities.
10:09 Genetics may predict who is more likely to experience chemobrain (cognitive problems) after transplant: One area that I'm particularly interested in and excited about are some of the research is looking at genetics. I talked about how not everybody develops these cognitive changes. There's a good percentage of patients that go through chemotherapy and don't develop these cognitive symptoms. What is it about them that's different than let's say somebody that does develop these symptoms?
This is a very complex question that will have likely a very complex answer, but one of the things that's being looked at is genetics. Some of the genetics that are being focused on are the same genes that are implicated in aging and in Alzheimer's. Now, hold on a minute. Don't get worried. I'm not saying any of you are at an increased risk for Alzheimer's, but there are genes that help repair the cells in our brain when they're damaged. There's some studies now that are coming out that's showing that those who developed greater cognitive changes may have something unique about the genetics as far as that's concerned. We're still trying to figure out exactly what happens biologically that leads to these cognitive symptoms.
11:06 Many factors, other than chemotherapy and radiation, can contribute to chemobrain: The other thing I want to talk about is that there's lots of different things that can occur, that can contribute to cognitive changes. Obviously, chemo and the chemicals themselves is one thing and we're talking about that here; but there's a number of other things that we have to pay attention to, because many of these can be treated and we can see improvement with that. Each patient is unique and, each patient may have multiple factors that are contributing to the problems and the symptoms they're experiencing. That's why we have to treat each patient as an individual. These are some of the things that we see that can cause some cognitive changes and can contribute to some of these symptoms.
11:43 Mood can affect brain function: One is mood. We know that patients that are diagnosed with cancer and that undergo treatment, there's a higher rate of depression and anxiety and stress. That's no surprise. I get it. That's understandable. What we also know is that stress, depression, and anxiety can also affect our brain and can affect our thinking. It can affect the chemical levels in our brain. It can affect all sorts of different aspects of our thinking ability. This is something that, you know, clinically I pay attention to. I evaluate, I look for this when I work with my cancer patients to see if this is contributing.
12:14 Physical and medical issues, such as anemia and fatigue, during transplant that can affect brain function: There are various physical and medical issues that can pop up with cancer and during the course of treatment that can cause some cognitive changes.
Take, for example, anemia. Some patients can develop anemia that can result in some pretty significant fatigue. We know that fatigue can cause lots of cognitive issues. Pain can be very distracting, can affect our ability to focus in the moment and remember things. Fatigue is huge. Fatigue is one of the big ones. Again, fatigue can have very profound effects on our ability to focus and use our cognitive abilities to their fullest. Sleep disturbance is another one. It's not uncommon to experience changes in sleep with cancer and cancer treatments. Sleep has very powerful effects on thinking. We need to pay attention to our sleep quality and rule out any sleep issues that might be contributing. And others listed up here including possible medication effects and what have you. Often, there are multiple contributing factors and we want to kind of address as many of those as possible to lead to improvement.
13:18 How do you diagnose chemobrain? How do we go about diagnosing and assessing for this "chemobrain?" Well, one of the things that I would recommend is that if you are experiencing some concerns about your thinking and it hasn't been addressed and you haven't had an evaluation, start with talking with your doctor about these concerns. Your doctor's going to be able to rule out a number of those things from that previous list through lab work, blood work, and things like that. Your doctor is also in a good position to treat a number of those things such as sleep issues and if there's ongoing fatigue issues and things like that.
13:49 Neuropsychological testing can assess brain function: The other thing that one might consider is what's called a neuropsychological evaluation. I'm a neuropsychologist so this is what I do day in and day out. The reason for neuropsychological testing is that it's one of the best tools we have for test driving your brain. It allows us to test different functions like memory and attention and all those things. It allows us to test different parts of your brain and circuits in your brain. You can't just go for a scan. Getting an MRI of your brain or CAT scan shows us what your brain looks like, doesn't tell us much about how it's functioning. That's where the neuropsych testing comes in.
You're probably wondering why there's a car up on the screen. I use this analogy.: it's kind of like buying a used car. You know, you can lift the hood up and you can see the engine. That's kind of like what an MRI might tell you, but you're not going to know how that car drives until you take it out on the road. That's where the neuropsych testing comes in.
What is the process like? It starts typically with a clinical interview. It's an opportunity for your doctor to get to know you and know your history, to review your cancer history for sure as well as your general medical history. It's also an opportunity to get know what cognitive concerns you have. Again, each person's different. You know, one patient might be concerned about attention. Another patient might be concerned about word-finding problems. It's important to really understand what is it that's bugging you the most, that's causing you the biggest issues. The interview also goes over how you're coping with your situation and how's your mood and what's your support system like. All of those are very important. Once that interrogation process is done, it's not too bad, I promise, then the neuropsych testing occurs.
That's a bunch of different paper-pencil question and answer type tests. What we do is we compare how you do to other people your age. If we're lucky, we are able to put you through some testing before your treatments and then we get to compare you to you before you started your treatment. Unfortunately, that doesn't happen a lot. What we do is we compare you to these large volumes of normative data. How are you compared to other 73-year-olds with a college education? It gives us a good idea of kind of where your memory's at, where your attention's at, and so on. We can do this kind of testing and we can get a profile of your strengths and your weaknesses, which become important for treatment planning. We want to use your strengths to help address the weaknesses. We want to target the weaknesses that are specific to what you're going through.
Neuropsych testing also involves evaluating your mood and getting an idea, again, of how you're coping with everything. These are some examples of some neuropsych tests. You can just see that there's some different type of tests. On the top row all the way on the left is a type of spatial task we use where you have to assemble blocks to look like a picture. It looks at the right side of your brain and spatial type things. In the middle is a problem-solving type task. You have to pick the one below that fits that pattern— that's an easy item, I hope everybody gets that right—and other tests that you can see from motor tasks to problem-solving tasks. It's through this type of method that we can take your brain for a test drive and develop a profile.
I think one of the most important parts of this process is then the last part: that is feedback and education. This is where you're going to meet with your doctor, you're going to go over results, you're going to talk about what these results mean and what is the treatment plan moving forward. That is what the neuropsychological process looks like.
16:59 Treatments for chemobrain depend on the specific issues the patient is experiencing: Now, what do we do if we find the presence of some chemo effects or cancer-related effects? How do we go about treating it? The treatment largely depends on the symptoms. We don't treat each person the same. As I said, it's very unique, how we develop these treatments.
You could break down the treatments into three main categories. There are what we call behavioral or compensatory strategies. These are tricks. These are workarounds. These are things that you can use in your day to day life that can help minimize the impact of let's say your forgetfulness or minimize the impact of some of the attentional problems. Another type of intervention, we'll go into these in more details, is what's called cognitive rehabilitation therapy. There are therapists out there who specialize in this type of thing where they work with patients and do cognitive drills and exercises to improve those areas that you're performing low on. It is also referred to as speech therapy. These two terms are often used the same. There are some pharmacological options, which I'll talk about in just a moment.
18:01 Reporting symptoms of chemobrain early is important: I think one of the most important things as far as intervention is early identification. I hate it when patients come to me three years after the fact and they've been struggling for three years with no hope. That breaks my heart. I want to get people as early as I can and get them the help that they need to try to improve quality of life.
18:21 Patients should be educated before transplant about the possibility of cognitive effects after transplant: Education is absolutely huge. A number of you raised your hand that you didn't hear anything about possible cognitive side effects. As I said, it can completely blindside you as you're going through your treatments and afterwards. A little knowledge before you go through this can really help reduce that anxiety. Being told that these are some common side effects, and being told that, for a lot of people, improvement happens, just give it some time, and being told that there are some options as far as treatments and interventions that we can talk about if this can occurs, can make a really big difference in that stress and that anxiety.
18:51 Strategies to treat memory problems: I'm going to talk a little bit now about some of these interventions, these categories of treatments that I just outlined, starting with the compensatory strategies. I'm going to start with memory because memory is a common complaint. A lot of people present with concerns about forgetfulness and memory. One of the things that we know is that the more exposure you have to the information you want to remember, the better you're going to be able to remember it. I'm talking about spending time with that material, going over that material more than once, not just looking at it once; but there's another part of that equation. It's not just how much you look at the material. It's what you do with the material.
When we talk about memory, we have this thing called "depth of encoding", how far it gets in your memory, how solid it is in your memory. The deeper we can encode information into our memory, the easier we can pull it out. It's not just how often you see it; it's what you're doing with it. Interacting with the material, taking that material and reflecting on that material could all help with that memory process.
You know, a good example is if you have to remember some stuff that you're reading. Just reading it once, you might get some of it. Maybe you read it a couple times. You might get more of it. If you read a small part of it and stop and think about, "What did I just read? I'm going to paraphrase it into my own words and then review. Then, I'm going to read another little part and paraphrase it into my own words and maybe relate it to things that are important to me," those are the type of things that will help get that information better into your memory. It's not just how much you look at it. It's what you do with it as well.
There are also things called pneumonic strategies. Has anybody ever heard of that? ROYGBIV, we all learned that when we were a kid. It helped us remember the colors of the rainbow. That is one type of pneumonic strategy. There are many pneumonic strategies that we can use to help with our memory.
When I was in graduate school, I took a lot of anatomy courses and I had to learn lists, and lists, and lists of anatomy. I used lots of pneumonics—I tried to make those pneumonics stand out: for me, the more vulgar they were, the better I was able to remember them. No, again, there's lots of different strategies that we can use that can help assist our memory and pneumonics are one of them, one type of category that you can use.
21:06 The good, the bad and the ugly of lists and sticky notes: Then, there are things like taking notes and sticky notes and making lists. How many people use sticky notes? How many people check a calendar? Okay. A lot of times, I have patients come to see me and I start telling them about, "Well, these are some strategies to help with your memory." "Oh, doc. I'm doing that already. I have sticky notes. I have calendars. I have three calendars and four to-do lists." I said, "And that's the problem." I spend a lot of time with my patients talking about the right and the sort of right way of doing things. One of the themes of using a lot of these strategies is to create something that's central and something that's part of your routine. It becomes part of who you are. Central meaning: don't have 20 lists and five calendars; that doesn't work very well. Can you condense it all into one method that can have all of that information and make it a part of your life?
Let's talk about that a little bit. This is the good, the bad, and the ugly—anybody know what that's a reference to? This is what, this is not the best way to do things. There are much better ways of doing them.
I'm a tech geek. I love technology. I assume most of you have smartphones. Is that a fair assumption, iPhones, Androids? Some of you probably have tablets and iPads at home, I'm guessing. They're amazing devices for addressing some of these issues here. What I love about these devices is it addresses the first issue: that is, making it central. You can have your calendars, your to-do lists, your grocery lists, your bill paying reminders. All that can be put into a single device—Don't lose it, we'll talk about that later—could be put into a single device that you carry with you, making it part of your routine. These devices are annoying. They will talk to you. They will beep at you. They will vibrate in your pocket if you tell it to do that. They will make you look at them. It addresses some of those challenges that we see with some of these others.
Great example is if you guys have an iPhone, you have Siri. If you have an Android, you have that little Google bar with the little microphone. You guys ever use that at all or you just kind of ... Anybody ever use that? You can do voice searches. You can say, "Find nearest restaurant." The other really cool thing you can do with it is you can press that microphone and you can press that Siri button and you can say, "Hey, Siri. Remind me to call John in three days." Siri will say in a very pleasant voice, "Okay." In three days, that phone is going to talk to you and say, "Call John." You can tell Siri, you can tell your phone to remind you at specific dates and times and to do all these things. Remind me to take my medications in three hours. You can set all these things up. It works quite well if you embrace it, if you make it part of your routine, almost becoming obsessive compulsive with it. I know. I know I shouldn't say that. Really, it's the difference between something really working and just kind of working.
23:59 Memory strategies if you are adverse to using technology: If you have a phobia to technology—like my mother who's hilarious. When she first learned email, she's like, "I sent an email in the WWW." What is that?
If technology is something that does scare you, that's fine. Go to OfficeMax, go to one of your office supply stores, and buy a teacher's day planner that is broken down Monday through Sunday in 15-minute blocks. They have to-do lists on the side of the day planners. You can put all your dates in there. You can put your bills when they're due in there. You can put your to-do lists. You can think in the morning of all the things you need to do and put them in there. Then, if you really want to kind of bring your A-game, then what you do is this: let's say you have something in a week, a good example is taxes, let's say pay taxes in three weeks. You backtrack. You go maybe a week prior to that and you say pay taxes next week. Then, maybe you make some reminders of certain things you have to do. Then, you go back another week and you set reminders for the ultimate task that you have to complete. You break it down into a lot of individual smaller components. You can do that in your day planner.
25:07 Strategies for remembering medications: For those people that forget medications, don't be embarrassed by that. I'm 42. I take a blood pressure pill . At least once every other week. I look at my pillbox, my little container. I say, "Did I take that or not?" Finally, my wife's like, "You tell all your patients to use a pill box. Why don't you get one?" I got one and now that doesn't happen anymore. Pill boxes are great where, you know, at the beginning of the week, set up all your pills. The reason why they're great is if you ever have that moment of, "Did I take my medication or not?" it's a visual check right there and then. If that pill's still in there, you know you didn't take it. The other good thing about it is if you have family members that are kind of hovering over your back to see if you're taking your medications, they can quickly look. It gives you that independence of managing on your own, but it's kind of a safety check. I'm a big fan of pill boxes and setting alarms for pills, whether it's in your phone or a watch that you have or what have you.
25:54 Micro-cassette recorders can help you record items you need to do orally when your hands are not free to record them: How many people will be driving in the car and a thought will pop in your mind that you need to do something or maybe you're at your house and you're doing a task, you're like, "Oh, yeah. I got to do this," and then you forget it? A lot of you guys, right? Yeah. It happens to me.
One of the strategies that I like is go get yourself a microcassette recorder. This is an old microcassette recorder. Now, they're about the size of a gum stick that you put in your pocket. When you're driving in your car or you're in the middle of doing something, like maybe you're grocery shopping and you have a thought that you need to remember, you take that out, you press a little button and you say, "Don't forget to blah, blah, blah." Now, that microcassette recorder's part of your routine. You check it three times a day, breakfast, lunch, dinner, just like you check your day planner. It can help you minimize the forgetfulness for things that pop in your head that then disappear.
26:38 Tile can help locate misplaced items: How many people lose things? How many people use Tile? Anybody?
Okay. I have no investment in any of these companies so I make no money by talking about any of these products. I have a little experience with Tile. My mother-in-law comes visits often and she forgets her phone, her keys, and everything. Finally, I just got so fed up with it I recommended Tile and I bought her one.
What Tile is, it's a little thing, almost looks like a ... I don't know. What's the word I'm looking for? Word-finding problem. It looks like a thing that you can attach to your keys, you can attach it to your purse, you can attach it to anything you want. Then, if you lose that item or you can't find that item, you take out your phone and you just check that app and it will tell you exactly where it is. It will emit a beep as well. You might say, "What if I lose my phone?" That's fine because Tile can actually make your phone beep. It goes both ways. You buy a couple of these, attach them to those things that drive you nuts that you forget all the time, and it can help you find those things. Again, these are tricks. These are workarounds. These are little things we can do to help minimize the impact of these things that frustrate us.
27:42 Apps that can help with memory problems: Back to technology. If you have a phone or an iPad, you can download some apps, many of which are free, that can be really great. I'm a big fan of this app called Cozi, C-O-Z-I. The reason why I'm a fan of it is that it allows you and your spouse, your partner, family member, to sync together and use the app together. My wife can be on her phone 20 miles away and I can be on my phone and it has shopping lists, it has a calendar, it has a to-do list. I can have my little shopping list and I can walk into the grocery store. If my wife says, "Oh, I got to get eggs," she can put eggs on her app and it appears on mine right away. She can put things on the calendar so it appears on my calendar. Stuff I put on mine appears on hers. It's kind of like a shared experience, which is really nice. It takes some of the burden off of you. If you have an appointment coming up or your to-do list and things like that. It's free, which is really nice.
There are apps that will help you manage your medications and give you reminders. There are apps that will help you to remember to pay your bills and things like that. Not that this applies to this audience, I usually have this when I talk about dementia, there are apps that can actually find people. If there's a wandering risk and you're worried about that, it can geolocate people, which comes in handy. I talk a little bit about structure and routine and this OCD thing that can be very helpful.
29:02 “Memory stations” can help you remember: These are some other examples of things you can do that help reduce those annoying things that happen on a day to day basis. Losing your keys: you can buy Tile or you can put a key chain holder right by the door you go in and out every single day. I go out my garage door. I put one right there. When I walk in the house, the first thing I do is I put my keys up. There are no exceptions to that rule whatsoever.
You can put something where you put your wallet. You can put anything you want, but you make no exceptions. You do it the first thing when you come into the house and you grab it when you come out.
Same thing with bills. You make a bill holder. You put your bill holder in an area that you commonly are interacting with like your kitchen. Your rule is, "The minute I get the bill from the mailbox, I'm going to write in big letters the due date and I'm going to stick it in this bill holder." No more losing your bills. It's right there. It's in the same place every time. Then, you can take those bills and the due dates and put them into your day planner or whatever app you're using so you kind of are merging different systems together.
29:55 Park in same location: I lose my car. I'm ashamed to admit it. I'm the guy walking around trying to set the alarm off on my car. What I do now is if I go stores and things like that, I always park my car in the same quadrant. I'm horrible at North, South, East, and West, but it's kind of like saying, "I'm always going to park my car in the Northwest side of a parking lot or up and left," or whatever. You get into a habit. You make it part of your routine. When you walk out of that store, you are already orienting to that side. You're less likely to not be able to find your car. People hang ribbons on their antennas—although cars don't come with antennas anymore.
30:30 Create visual reminders about what you need to take with you each day: Another thing, forgetting things, leaving things at home, not taking things with you. It's happened to me. It frustrates me. What do you do? Here's a very easy suggestion. If you're in a room and you remember something like, "Oh, yeah. I got to take the dry cleaning tomorrow," or, "I got to make sure I take this to work with me," the minute the thought is in your head, stop. Get your clothes that you have to the dry cleaning, grab your briefcase, whatever it was, go down to that door that you walk out of every single day, and put it by the door. It's a visual reminder. You're not going to have that happen anymore if you do that.
The whole idea here is control your environment, don't let it control you. These are some of the strategies that you can use as sort of workarounds. It's easier said than done to go home and do these things. Some people need a little bit of extra help and that's fine and that's normal. That's where teaming up with maybe a speech therapist or a cognitive rehabilitation therapist or even a psychologist can help you implement this in your day to day life.
31:28 If you have attention problems, don’t try to multi-task; repeat phrases in conversations to stay focused: Let's talk about attention. A lot of patients struggle with attention. They complain about attention. A couple tidbits here, a couple tips.
A lot of people brag about, "I'm an excellent multitasker. I can do 20 things at once." Who cares? We know multitasking is not good. It's diminishing returns. Focusing on one task at a time will have better returns than trying to do two, three, or four. It doesn't impress me if you're a multitasker. I'd rather you focus on one task at a time. That's one thing you try to do. Stay on one task. Don't let yourself get derailed and then start something else until you're done with that task.
When it comes to conversations, a lot of times you'll hear, "Yeah, you know, I'm just talking with people and I'm just not there. My mind's wandering. My eyes are glazing over." They're not getting what's being said in the conversations. Become an active participant. If I'm talking with you, say things like, "Okay, let me make sure I got this right. You're telling me blah, blah, blah." Again, you're taking that information, you're making yourself stay in the moment, you're keeping yourself engaged in that conversation. That can help quite a bit. Paraphrasing the information, asking clarifying questions, things like that.
32:38 Improve attention by taking breaks during tasks: Take breaks. A lot of people feel like, "I got to sit down and push through things." Like studying in school is a big one. Work, you know, "I got to sit at my desk for six hours and get this done, this spreadsheet." What we know about that is, again, diminishing returns. Your attention's going to start fading and you're going to have diminishing returns. Take breaks. You've got to figure out what works for you. Everybody is different. That's where journaling can come in. Start keeping track of, "How long can I read before my mind starts to wander? How long can I sit and study before my mind starts to wander or work on this spreadsheet?" For you, it may be 30 minutes. You, maybe I can work for an hour or maybe two hours. You figure out what is your attention span and then time your breaks. You take five, ten minute breaks to break up that schedule.
33:23 Adding variety to tasks can help with attention: Also, creating variety in what you're doing, try not to just do the same thing for long periods of time. That can also help with attention. A lot of times you hear people, again, say, "I come up with this thought. Then, by the time I get to the room, I forget what I was intending to do." That's not memory. That's actually attention. It's not a memory loss thing. It's that you're not in the moment and attending to the task at hand. Your attention is fluctuating. One of the things you can do is get that inner dialogue going in your head. Talk to yourself. It doesn't mean you're crazy. You can talk to yourself silently or out loud. When you think about that thing that you need to do, as you're walking to do it, it's okay to say, "I'm going down to the kitchen to go grab this bill. I'm going to go down to the kitchen to grab this bill. Okay, I'm in the kitchen. I'm going to grab my bill." I know it sounds silly, but, trust me. I said it wasn't about memory, but you're going to forget a lot less if you do that, if you get this internal dialogue going to keep you on task and keep you focused on what you're doing.
34:21 Cardio-vascular exercise can have a positive impact on brain function: Exercise, exercise, exercise. I'm sure you've heard that in other talks here. Exercise is huge, especially in the cancer population. There's tons and tons of research that's been done on this that shows that it can improve energy levels and stamina. It can help with sleep. It can help with mood and quality of life and it can help with cognition and attention.
I'm not talking about bench pressing and heavy weights. I'm talking about regular physician-approved cardiovascular activity. Walking around the mall is a form of exercise. Things like that can really help.
35:00 Clutter can affect your attention: I mentioned this theme about control your environment, don't let your environment control you. Again, here is an example of that. When it comes to attention, your environment is your worst enemy. Clutter is your worst enemy. This is an exaggeration. I'm sure nobody's house looks like this or you'd be on that TV show. Even a little bit of clutter, if you walk in your kitchen, you got some papers on the kitchen table and "I got stuff on this counter and I got this over here", even a little bit of clutter can affect attention.
The reason is is that your brain is attending to everything going on around you visually, and what you hear—whether you know it or not. A lot of this stuff occurs subconsciously. The brain is really good at filtering out all those things it doesn't want to pay attention to, but it still has to process it. By removing visual clutter, creating an organized environment, you're taking a little bit of that burden off your brain and allowing you, hopefully, to focus a little better at the task at hand. Facing away from high-traffic areas at work or, if you're in school and you're studying, don't sit where everybody's walking back and forth all the time or you're going to be looking up, "Oh, those are nice shoes," and things like that. Don't put yourself in front of a computer with the internet where you can surf online and stuff like that. Control your environment.
36:08 Use earplugs and noise canceling headphones: Earplugs and noise cancellation headphones are great when you need to get rid of that sound, when you need to really, really focus. These, again, are what we call some compensatory strategies and tricks. This is just some of them. It's beyond the scope of this talk to really go into a lot more, but these are things that a therapist or a speech therapist can work on and help you do.
36:29 Cognitive behavioral therapy can improve memory and attention: I talked about another type of intervention is cognitive rehabilitation therapy. Cognitive rehab therapy, again, is when you work with a therapist doing cognitive retraining drills and exercises that are intended to improve your attention, improve your memory. The interventions are tailored for the patient. They want to know what it is that you're struggling with most with. Those are the type of interventions they'll focus on. There's data that shows effectiveness of this in cancer patients. Most academic hospitals will have a speech therapy or a cognitive rehabilitation department. It's something that you can think about.
37:05 Lifestyle changes that can improve cognition: Lifestyle changes—these are some common sense things. Sleep, pay attention to your sleep. Sleep is huge. Sleep can have huge effects on your thinking. If you're having problems with sleep: if you're waking frequently, having problems falling asleep, if you have any of those risk factors for sleep apnea, snoring, overweight, gasping for air, things like that, talk to your doctor about that. These are things that can be addressed that can make huge differences in your thinking if your sleep architecture is off or if you're not getting good quality sleep. We talked about exercise already. Stop smoking, drinking, and drugs—although, we're in Colorado, so we'll skip that.
37:45 Get treatment for emotional factors that may affect cognition: Treatment of emotional factors: we do not want to minimize this. Having depression and anxiety when you're diagnosed with cancer is normal and understandable. It should not be stigmatized. It is not a sign of weakness. Again, depression, anxiety, stress can have powerful effects on cognition and thinking and there are very effective treatments for these things.
I'm not talking about pushing pills. There's a place for that, but there's very effective types of psychotherapy, like cognitive behavioral therapy, that is extremely effective in treating depression and anxiety. Cognitive behavioral therapy focuses on what's going on inside our head, those thoughts that make us feel anxious or make us feel depressed. In a lot of cases, there's a thought process going on that's maintaining these symptoms. You might not be aware of them, but it's going on. That's where that therapy targets, helps change those.
Support groups can be very helpful for some people. It gives you a sense of belonging and community with other people that have gone through this. Again, as I said, psychiatric consultation, there is a place for meds in some of these cases.
38:46 It is important to adjust to the new you: The other thing that I feel strongly about is spending some time helping you cope with the new you. I'm a car guy so I'll use a car analogy. You've been driving through life in a Ferrari. You're tearing down the road at 200 and something miles an hour, taking turns: you are a performance engine. Then, you get diagnosed with cancer and you go through treatments. You come out of it not quite the Ferrari that you were going into it.
Some patients beat themselves up about that. They do a lot of ... Their sense of meaning gets destroyed. Their sense of contribution to the family and the things around them get destroyed. They beat themselves up about it. We got to really talk about the new you and talk about do you have an accurate picture of the new you. My guess is that many of you go from this Ferrari to a really nice Audi. You got to take the Audi a little slower around turns. You can't drive through life at 200 and something miles an hour, but it's a damn fine car. Same thing applies to my patients. You might have some changes, but you still are functional, contributing, and capable of doing many, many, many things, maybe a little bit slower, but capable of doing many, many things.
39:54 Do brain games help memory and attention? I will end. Just a few extra slides right now. I get asked the question all the time about brain games. Typically, it's coming from a spouse that's saying, "I keep telling her to do these brain games. She's not doing them. It's driving me nuts."
You know, I want to talk about brain games. I'm a firm believer, and there's research data to support, that keeping yourself mentally active, socially stimulated, and physically active are very important for brain health. There's no questions about it. There's research that shows throughout your life if you have higher level of mental and social stimulation, it's neuroprotective for developing diseases later in life like neurodegenerative and dementia. It's very important for brain health and it's very important for quality of life and mood: but it's important that you're doing something that keeps you activated. It's far less important exactly what you're doing.
When people come up and say, "Oh, there's this thing called Luminosity and it's only a couple hundred bucks. Should I do this?" Or, really what gets my blood boiling is I've had patients that come in and say, "Oh, there's this program that's $7,000. It's a five-week course and they're guaranteeing me these improvements in memory." You know the saying "if it's too good to be true, it is?" That applies to these.
Really, as long as you're keeping yourself active and you're doing something, it's going to work. It's going to have its effect. You don't need to be doing a certain special app that charges you. There's lots of free apps. You don't need to sign up for a $7,000 program—if you want to spend $7,000, give it to me, I'll hang out with you for a couple weeks. You don't need to do that. Playing card games, anybody play bridge or things like that in the audience? Okay, not a bridge audience. Anybody drink and play poker? Everybody's hands. Card games, puzzles, sudoku, reading, being part of a book club, all of those things are extremely mentally stimulating and will have their effects. Again, you don't need to drive yourself crazy about that. Just do something that's fun and stimulating.
41:49 Medication for chemobrain: As far as medications are concerned: the bottom line with medications is there's no magic pill for "chemobrain". There's no FDA approved drug for "chemobrain" at this point in time.
What we do at my hospital is—and I don't prescribe, I'm not an MD, but I work with the MDs—what we do is, in some cases, we will try some things to see if they work. A good example is the use of stimulants. These are drugs that we use to treat ADHD with. When I have a cancer patient that's struggling with fatigue, lots of fatigue/energy issues, and has attentional problems, I think about stimulants because stimulants do a really good job at helping with arousal, and can do a good job with maintaining attention.
If there are prominent mood issues, we got to treat the mood problems. If there's sleep issues, we treat the sleep issues. There are other drugs that have been experimented with a little bit like everybody's heard of Aricept for Alzheimer's. I don't suggest that with my "chemobrain" patients. We've tried it in some of our brain tumor patients, but, again, I'm not convinced that has a role.
42:49 Beware of over-the-counter supplements: My last thing I want to say is be aware of over-the-counter supplements, again, that promise you all sorts of different things. If you are tempted to spend money at Walgreens or at the supermarket to buy the latest, greatest whatever it is that's going to help with your memory, have a conversation with your doctor about it, because what it really comes down to is the majority of these products have no science to back up their claims. A lot of these companies are getting slapped by the FDA for making false claims. You want to know what the science is behind something before you start taking it.
Then, the other thing too is supplements and all these things can also affect whatever medical treatment you're getting. Be careful with all that. The hope is through compensatory strategies, through perhaps speech therapy, addressing factors such as sleep and fatigue issues and mood issues, we can start to clear the fog. We might not make it disappear, but if we can clear some of it, that will translate to better quality of life. That's what I got for you today. How about questions if there are any?
Questions from the audience:
43:43 Impact of alcohol on brain function: The first question was, "What about alcohol?"
I'm a stout porter guy. No, it's a good question. You know, I'll give you my opinion—and it's not based on publications and stuff. Everything in moderation. I mean, you can have a glass of wine, great. The research goes back and forth all the time about "chocolate's good for you, chocolate's bad for you, caffeine's good for you, caffeine's bad, having wine's good for you, bad." The bottom line is everything in moderation. Alcohol can have neurotoxic effects. What I worry about is when there's regular alcohol use. If you're drinking three, four drinks a night every night, we're going to have a conversation about that because that can have neurotoxic effects.
44:21 Question from audience about difference between dementia and chemobrain: I hope you didn't address this because I arrived a little late. The difference between dementia and "chemobrain", how would you know which was which?
Dr. Sabsevitz: That's an excellent question. Everybody heard that question? The question was: differentiating between dementia and "chemobrain". How do you know which is which? I can answer that.
First, I'll define what dementia is because a lot of people misuse the term dementia—not that you are. Dementia is a term that basically refers to pretty significant changes in thinking that are severe enough to compromise your ability to function independently; so managing money, medications, things like that. Many things cause dementia. Alzheimer's is the most common in older age, strokes, things like that. Many diseases can cause dementia.
"Chemobrain" is very different. As far as "chemobrain", it's extremely rare and atypical that it would ever reach the severity that would warrant the term dementia. That's the first thing I'll say. Getting at your question about how do you differentiate between, "Am I showing some early Alzheimer's or is this just 'chemobrain'?" They look different on neuropsychological testing and that's where neuropsych testing comes in handy.
A patient that's showing signs of early Alzheimer's will have certain patterns on our testing that will be different than the patterns we'll see, let's say, in chemobrain that will be different than patterns, let's say, with strokes and vascular changes in the brain. The neuropsych testing is one way to get at that. It does a pretty good job at that.
"Chemobrain" doesn't progress over time. If you're on an ongoing chemotherapy, you know, maybe, but once you're done and had your transplant and now you're off treatment for a while, we don't expect worsening over time. That would be a potential indicator something else might be going on and we would want to evaluate potentially for dementia.
Imaging has a relatively minor role in all this. We have some imaging techniques that have come out recently where we can measure certain structures that shrink in Alzheimer's. If I have any questions and my neuropsych data is not conclusive, I might send my patients for advanced imaging to see if that helps; but again, the main things are neuropsych testing and of course. We test you, we bring you back in a year if we're not sure. You shouldn't decline if you have "chemobrain".
46:31 Question from audience about how long doctors follow patients with chemobrain: How long on average do you follow a patient?
Dr, Sabsevitz: It varies. I'm a big proponent in doing baseline testing. It doesn't get done a lot, unfortunately. I keep telling physicians we need to be doing this. In my fantasy world, every patient that's diagnosed with cancer that's going to go through any kind of treatment would have a cognitive screening. That would be, in my world, the first time I'd see you. I'd do that to increase my sensitivity in picking up on changes, which translates to earlier intervention.
To answer your question, I typically see patients often a single time because my role is more neurodiagnostic. My question is, "Is there 'chemobrain' going on and what other factors might also be contributing?" Then, I typically send my patients for treatment with other providers. If there's any question of progression over time, if there's any question of differential diagnosis like, "Is this something else? Could be this dementia?" I'll often see my patients more than once. That's kind of how I see my patients. Some neuropsychologists actually do treatment. My practice, unfortunately, is not set up that way, but some neuropsychologists will see a patient several times for more of the treatment side.
On the pediatric side, we've been a little more fortunate and we have smaller numbers, so our neuropsychologist dreams are realized. They see them before. They see them afterwards. If there are problems after a year, they may see them again, but they don't treat. They refer to their colleagues who treat. That doesn't happen [crosstalk].
Yeah, especially with adults. We do that with brain tumors. I have a brain tumor clinic and that's what I do; but yeah, with systemic cancers, breast, lung, blood type cancers, yeah, it's not done a lot, unfortunately. That model that he's talking about is the ideal model, especially in pediatrics when there's development issues you want to catch early and intervention makes huge differences.
48:23 Question about incidence of chemobrain in leukemia patients: I hope my "chemobrain" doesn't interfere with my question. I noticed that you put statistics up for breast cancer as far as the "chemobrain" prevalence and percentages. Given the neurotoxicity levels of leukemia type stuff, would that be higher?
Dr. Sabsevitz: I had a slide. The question was, I put up some data about breast cancer about frequency and rates of seeing chemobrain and things like that. He asked a question about, in patients that undergo bone marrow transplant, there's typically more intense preparation, chemotherapy drugs that are used to prepare for the bone marrow. That has a high risk of neurotoxicity. He's wondering are the rates higher for cognitive changes in this population compared to let's say breast cancer.
I had a slide up, it's in there actually, that says cognitive changes, I think, with BMT or something like that. If you look at the rates, they're actually kind of similar as far as the prevalence rates and things like that. There's a lot of similarity between them. In both populations, a third of patients will show some cognitive issues even before they get the chemotherapy. There's a lot of similarity. I think the clinician in me would say that, yeah, I think we could see more significant cognitive changes given the intensity of therapies that are given in some cases. I guess for some of these bone marrow transplants, you do brain radiation too with pediatrics, right?
Audience member: If they have CNS leukemia.
Dr. Sabsevitz: CNS leukemia. So you don't do prophylactic at all? Yeah. Anytime the brain is involved with radiation, that changes the game. There's much higher rates, obviously, of cognitive changes associated with that.
50:05 Neurotoxicity with CAR-T therapy: The other area that has yet to be explored but everybody's heard about all these new miraculous CAR T-cells, nothing is free. There is an incidence of neurotoxicity, that we are just now appreciating the acute part. It will be physicians like my colleague here [who] will help identify what are the longer term, if any, consequences of that miracle therapy. It truly does affect miracles in people who are resistant, but it has its own neuro issues.
50:40 Question about onset of chemobrain after transplant: Is it typical for an individual to start experiencing the symptoms of "chemobrain" weeks to months after the exact treatment?
Dr. Sabsevitz: It is not atypical in the sense that what happens. I mean, take a typical person going through treatment. Let's say the person's working. They typically take time off work to go through their treatments. There's a period of time where the cognitive demands that are placed on them are probably lower during that time period.
Then, they try to go return back to work and then they return back to their normal life activities and they start noticing cognitive symptoms. It's common, again, for patients to say, "Yeah, I started noticing six months after my chemo when I went back to work." I don't think it's that the symptoms delayed six months. I don't think that's the case. I think that patients notice it more when the cognitive demands increase around them. The typical onset is during and shortly after chemotherapy. If you get long delays, that tells us it could be something else, not in your case. Don't worry about that, but I'm just saying think about life demands and cognitive demands.
51:47 Question about level of oxygen affecting brain function: I was just thinking, and blood marrow transplant patients, their blood counts get pretty low and, therefore, their oxygen level gets pretty low. Could that affect the brain, I know short-term probably, but long-term? Do you get the new normal? Is that a possible symptom correlation, maybe?
Dr. Sabsevitz: I'd be curious what my medical doctor colleague would have to say about that. My experience is that you can get acute changes in response to severe anemia and other things like that that typically improve and resolve once that is addressed. I'm not aware of any permanent residuals that would result from that.
You'd have to be every anemic for a very prolonged period of time. It is usually not something we would expect even in congenital or inherited diseases that result in long-term anemia.
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