Presenter: Margaret Booth-Jones PhD, Moffitt Cancer Center and Research Institute
This video is a recording of a workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium.
42-minute presentation followed by 14 minutes of Q&A.
Many people experience changes in the way they process information after transplant. These changes, often referred to as chemo brain or chemo fog, affect memory, speed with which information is processed, learning and attention. The problems usually resolve over time.
Highlights of Talk:
02:31 Speed with which you do tasks after transplant may change, but not the quality of work
03:34 Cognitive changes do not mean you are mentally impaired, and are usually not permanent
05:12 Some people are pre-disposed to developing cognitive problems after transplant
07:56 Some people have a “cognitive reserve” that allows them to function better after transplant than others
16:07 Fatigue can affect the ability to think clearly and is not necessarily caused by poor sleep
20:08 Nutrition affects the ability to think and process information
37:20 Caffeine and drugs that may speed up thinking
39:43 Physical activity improves cognitive ability
40:22 Brain games can’t hurt, but don’t necessarily help with anything other than performance on the game
Transcript of Presentation:
00:00 Introduction: Good morning. Again, I'm Dr. Booth-Jones. I've been at the Moffitt Cancer Center almost 22 years. I was hired specifically for the transplant program because we determined and decided over 20 years ago that brains were vital organs. So, if you've heard the term vital organ testing and you were at the Moffitt Cancer Center, there's a darn good chance you saw me at least once. I can't speak for other cancer centers, because they did not decide that brains were vital organs. But at Moffitt we do, and we really want to know what you look like ahead of time, so we can be there with you after, and make sense of what's going on.
So, this is the title. We've all heard the term chemobrain. In Europe it's called chemo fog. But there are a lot of issues, and it's not just one name for one phenomenon.
00:51 Goals for talk: The goals for this talk are to really talk about the incidence of cognitive changes, the type and duration, what can we do about it, how can people cope with it, what are the current interventions, sort of the state of the art, and then where does general wellness fit in?
01:09 Transplant doesn’t change intellect: So, when we talk about cognitive deficits - and a lot of people who I see say, "I just don't want to be any stupider" -Well, who does want to be stupider? Nobody. But that's not really what we're talking about. Your base intellect doesn't go anywhere. In fact, we don't even assess for it, because it's something that's been pretty much set in stone from the time you were very little.
01:30 Transplant can affect attention and concentration: But what does change are things that change with your energy level, the chemistry, either of your own personal chemistry or what we did to your chemistry by adding things or taking things away. And these are the things that really can change, and what people talk about, is the ability to pay attention and concentrate. But attend to what they want to.
I don't know how many people in this room are thinking about their right foot right now, because you learned, "Hey, I don't want to think about that right now. I want to think about what's going on in front of me." You're able to focus your attention away from things that are part of you right now, but you're not thinking about it. Hopefully nobody's thinking about what they're going to have for dinner tonight. Hopefully. Or Game of Thrones episode four. Anyone? Okay.
02:12 Memory issues that can occur after transplant: Memory means a lot of things to a lot of people. What we really are talking about in memory is things that happen in day to day life. Did I take my pills, or where did I park my car? Those sorts of things. Not, "Gee, where did I go to high school?" That's not going to go anywhere. Your autobiographical memories don't leave. It's the day to day living.
02:31 Speed with which you do tasks can change after transplant but not quality of work: Speed and stamina, we're going to talk about that a little bit more, but sort of ... my buzz phrase, and I've seen almost ten thousand transplant patients. Sometimes it's the same patient multiple times, but at least ten thousand visits. People do a lot of things really well, they just do them slower. Quality is great. Quantity might be down a little.
02:49 Executive functioning is problem solving: And then executive function. And that doesn't mean running a company, but it's really what we're talking about. The executive function is the frontal part of your brain. That's what separates us from all the other animals out there. How do you problem solve? How do you strategize?
03:04 How common are cognitive problems: So, what's the incidence? I don't know if y'all Google, I live on Google. It's everywhere. Every number out there. So, let's just pick 50%. Because on any given day, someone's going to say, "I don't think like I used to," at some point in their treatment. This goes across, actually, almost all cancers, not just transplant. So, you kind of get lumped in a little bit with everybody else at that point. However, there are some reports that say almost a
03:34 Cognitive change does not mean you are mentally impaired and is usually not permanent: Changes don't imply impairment, nor do they imply permanency. But at some point, you feel that they've really changed. And whether you're feeling it subjectively or I see it objectively on testing, I'm going to stick with that at some point. But again, it doesn't mean permanent. But when we talk about changes, if someone's superior, and a lot of people think they are, being average doesn't feel good. That is considered a moderate to severe change. Are you impaired if you become average? No, but boy does it not feel good. So, you always have to think what change means. It doesn't necessarily mean an impairment.
04:12 How long do cognitive changes last after transplant? If you look across studies, there's a lot of variation. And so, I looked at this third bullet. Studies with long-term follow-up vary with some suggesting good recovery by one year. I'm like, oh, I Googled that one. That was me. I wrote that paper a long time ago. I was absolutely flabbergasted. Oh my god, seriously.
But I actually was funded by the American Cancer Society to see people before transplant, six months out, and 12 months out. And if physically they were well, cognitively they were beautiful. And I found that very heartening. And they actually looked better than they did pre-transplant, and I have some thoughts on that.
But there are other studies that said there could be some problems for up to 60% of people at the two-year follow-up. But what do problems mean? Remember, everyone's two years older by then. And I can tell you, when people say, "I want to be just like I was before transplant," I go, "Well, you're older." I cannot do that. But I don't want to belittle it. But again, problems don't necessarily mean impairment or disability.
05:12 Some people are pre-disposed to developing cognitive problems after transplant: So why are people different? Why? We're transplanting cells. Or in some cases bone marrow, some people, stem cells. Why? Well, your brain is an electrochemical organ. So, if your electrochemical makeup changes, you can think differently.
Some people are predisposed to not thinking as well, long-term. There is an allele called the APOE4, and the reason we know about this allele is through the VA system. When some of our soldiers were coming home and not recovering very well from traumatic brain injury, why was a certain percentage of people not recovering well? They all kind of looked the same on MRI, or similar enough, and it looks like about a fourth of people have this genetic weakness that they may not recover as well.
Some people are predisposed to having cognitive changes. Strong family history for Alzheimer's and other genetic predispositions. So not everyone's created equal.
06:19 Physical trauma can affect thinking after transplant: Sometimes during transplant and recovery, the brain has actually been impacted. I've seen this, unfortunately, many times. Very low platelets, someone falls, they have a bleed, that is a trauma. The brain doesn't like it. Some people develop HHV6, the herpes encephalitis 6 that attacks where your memory is here on your temporal lobes. You can recover from it but you do take an impact. So, there can be complications, those are just two.
06:48 Medications can affect thinking after transplant: Nature built the blood brain barrier for things to stay out of the brain. A lot of times, medications don't even cross. Some do. So sometimes there's a failure there, or there can be even DNA damage. And we know that when people get secondary cancers from the first treatment they had, and we see them for secondary AML, your DNA changed. Well, who's to say that didn't affect your brain and central nervous system?
07:13 Age affects thinking after transplant: But what are other factors? Age. Like I said, you're not getting any younger. I'm not. And there is some normal, not huge, but normal decline as we age. There's a thought that men's brains tend to mature to their fullest in their early 30s. That make sense to anybody? We can nod. Women tend to mature a little sooner.
07:44 Education affects thinking after transplant: Education actually matters. That's one of the demographic variables that we always want to collect. With more education tending to be a little bit more protective.
07:56 Cognitive reserve allows some to function better after transplant than others: There's this term called cognitive reserve. People that have just a big old bunch of intellect up there, you can lose a little bit and still be pretty functional. You may not like it, but you really can be out and about and doing what you need to do.
However, if you have limited cognitive reserve, you're sort of fragile, and that's one of the things I would see on pre-transplant testing. That you kind of already have some issues before we see you, you're probably more vulnerable. It's like a fragile bone. There's a chance it could break with stress, as opposed to someone who's got really hard bones, it's going to take a lot.
08:29 Psychological and behavioral factors affect thinking after transplant: There are a lot of psychological and behavioral factors as well. Some people come to their cancer journey with issues. They already have a history of major depression or anxiety. They could already have some really bad behaviors on board. A lot of risk-taking behaviors. This is never a personality transplant, okay?
So, if someone's already taking risks, bucking authority, saying I don't need to wear shoes, I can still garden, I can still be out in the sun five hours a day, those sorts of things, I don't care what the doctors say. These are factors that could actually just worsen your overall health and, you know, the brain is connected to the rest of your body. So, if the rest of your body is being beat up because you're not doing everything you can to stay on track, you could be at greater risk.
09:19 Head injuries before transplant can affect thinking afterward: And then there's the pre-cancer neurological status. Part of my semi-structured interview with anybody is any history of head injury or loss of consciousness.
You'd be amazed, amazed how many people have had head injuries. You'd been amazed how many people don't know they've had head injuries. I've literally had siblings say, "Yeah, I dropped my sibling on his head when he was a baby." Literally, I'm not joking. You did? Yeah.
Or someone, "Yeah, you were in a terrible car accident. You went flying out the window. We didn't have seat belts back then." On and on. So, head injuries, though people may recover and be very functional, can actually leave you somewhat more fragile.
10:04 A history of depression can affect thinking after transplant: So, I mentioned the psychological factors. Now some people come to transplant with a history of depression. Could be major depression, it can be postpartum depression, it can be the perimenstrual depression, bipolar depression, these things can happen.
But for some people, they had no depression, no mood instability at all. But they get the cancer diagnosis and they become absolutely petrified on the inside and don't see the future the way they thought they would. That's called an adjustment disorder. I hate to use the word disorder. I actually use the word reaction on my visit. Unspecified adjustment reaction. Because I hate to give people psychiatric diagnoses that have the word disorder in it if I don't think you're disordered. I think you're just having a reaction. So sometimes it's just truly an acute change in the moment.
10:55 Steroids and Keppra can affect mood and thinking after transplant: But, also, the medications they give you. Has anyone, and I don't need a show of hands because I don't want to get into people's personal stuff, but been put on high dose steroids? And they put you on an emotional roller coaster? Has anyone ever been on steroids and become sleep deprived, that they really can't think well?
Some people are prophylactically put on Keppra, so they don't have seizures. Great anti-seizure medication, but it's dampening your brain down so you feel like the world is sort of flat for some, gloomy for others. I don't know if anyone knows Winnie the Pooh, but I see a lot of people on Keppra looking like Eeyore. I'm like, hey, but you're not having a seizure, so I'm happy with it. I'm not going to change it. But I want you to understand, medication that's designed to change your brain chemistry can change your mood.
11:40 Anxiety can affect thinking: Anxiety. We need it. If you all didn't have a little bit of anxiety, you would not be in this room today. You would still be somewhere else. In bed. You need a little bit to get up and go.
There's something, I don't even want to tell you. It's called the Inverted You. So, it's a little bit of anxiety's good. It gets better and better until it hits a point when too much anxiety freezes you up. Then you're not doing well.
Some people have a long history of anxiety. Some people, it's literally just because of the diagnosis and what they're going through. For some people it's specific. The night before MRI. The night before biopsy. Seeing me. Testing. A lot of people have test anxiety. Be really aware of the anxiety levels. And of course, medication side effects can also make people feel somewhat anxious.
12:26 Lack of good sleep can affect thinking: Sleep. There are studies everywhere saying, without sleep, your brain is just not very happy. There's classic insomnia. At some point, someone's not slept well. But there are other things that we really want to look at.
Obstructive sleep apnea, snoring. Quite often the patient doesn't even know they're doing it, but their loved one does, very well. I have to say that people who have untreated sleep apnea can look like they have Attention Deficit Hyperactivity Disorder. And it's one of the things that we see when there's really no other clear explanation, and the loved one is saying, "Oh my goodness. You would not believe what our nights are like." Sleep study, really need to have one.
13:14 Pain, anxiety, frequent urination and peripheral neuropathy can interfere with sleep: But mostly for my patients it's not insomnia or sleep apnea, it's pain, anxiety, or actually symptoms of peripheral neuropathy. Rolling over and the sheets, getting the feet, up again. The other thing I didn't put is frequent urination depending on what they're on.
You've got to be able to get through that whole sleep cycle. If you're not dreaming, you don't have to remember it, but if you're not going through a whole sleep cycle, you really aren't having a healthy brain.
13:40 Too much caffeine can interfere with sleep: So, we really want to talk about sleep hygiene if that does seem to be the issue. Full disclosure, I've already had two cups of coffee today. I love caffeine. I don't like it past noon, because that's my cutoff, but I like it, and I think I'm better on caffeine.
There are a lot of studies in my world of neuropsychology, where we take - we always use undergrad students just because they're there, and they want three extra points at the end of the semester. And so, if you take 100 undergrads and say, this side of the room, off caffeine. And 100 undergrads on caffeine and give them a neuropsychological test, who's going to do better?
Oh yeah. Five points here, three points there. So, we know for most people, it's relatively safe. But when you're feeling that fatigue and you're dragging, you might start having more and more and more of it, thinking more is better, and get to the point where it's interfering with your sleep. So, you want to manage it.
But in my semi-structured interview I ask about smoking, drinking, illicit drugs, and then caffeine. They go, "Why do you put caffeine after street drugs?" I'm like, "It's just the way my test was. It's good. I already had mine."
14:56 Blue light can interfere with sleep: With sleep I also talk about setting a routine. I don't know how many people go to sleep with the TV on, with an iPad, getting that white light, bathing your eyes, or the blue light, rather. There's really only one handheld that's acceptable, really, to help the brain shut down, and that's the Kindle Paperwhite. Because the blue light is known to disrupt. So that's another way to check your routine.
15:24 A cold room is best for sleep: You should also sleep where it's cold. You do better if you're cold and covered. So, if you're hot and sweaty, get a fan on, lower the AC, take off more clothes. I don't know. Whatever works for you.
15:36 Reset your sleep routine after a hospital stay: But the real routine has to be reset after hospital stays. I don't know if anyone can remember getting woken up every two hours, or multiple times in a two-hour window.
When I visit people, sometimes there are signs that say, "Nobody come into my room unless essential." I'm like, oh crud. They called for me. Am I essential? And I'll start walking away, I don't know.
Did you want me? Yes. But don't wake me up. If sleeping, do not bother.
And it's really hard for people to reset. But without sleep, you're not going to think well.
16:07 Fatigue is not necessarily caused by poor sleep: So, disease recurrence, fatigue, and cognitive changes are the three biggest complaints that we hear. So, fatigue, after disease recurrence, is really going to be my number two. It's very common.
You can be exhausted and actually sleep well. You can be exhausted and sleep too much. And I really want to help people understand, I believe, and the way I've conceptualized this for the last few decades, is we're all given just a certain amount of energy every day. Let's call 100. We call get 100 energy units every day. But when you're going through a transplant, any kind of cancer care or recovery, a lot of your energy units are just being used up on the inside. You look like you're just sitting there doing nothing, but you're not doing nothing. You're working full time, triple overtime, no vacation.
And then you're asked to do these other things on top of what your body is already doing. Trying to regrow an immune system. Try to tolerate all the medications, all the disruptions. So, you can be utterly exhausted and people around you may think, "But you didn't do anything." I'm doing it right now. You just can't see it. So I really want people to understand, fatigue is not necessarily poor sleep.
17:20 If your body is fatigued, so is your brain: But if your body is fatigued, so is your brain. They are connected. Right here. So, when I have people say, "You know what? I'm going to take care of all my medical insurance forms today," no you're not. You might get through a couple, shred the duplicates, circle, highlight the ones ... but you're not going to sit and do it all. You'll be making mistakes.
The bigger one is, “I'm going to empty my inbox on my email.” You're going to be replying to all with spelling errors. Stop. Pace yourself. Because you are fatigued, I want your quality to be excellent and your quantity to be smaller. Two or three emails, take a break. Do something different.
18:00 Doing something different can ease fatigue: But I also want to point out, when we all go on vacation and hopefully we've all had one at least once in our life, did we sleep?
No, we did something. We did something different. When you are feeling fatigued and you think you've had enough sleep and there's no medical reason that you can't be up and about, do something different. Test one of your other senses. That old saying, stop and smell the roses - they probably don't want you to be anywhere near plants - so don't do that one. But do something else.
Go get a cold drink. Maybe walk to the mailbox with sunscreen. Get your mail. Do something other than just sit and do another cognitive task.
18:38 Pacing yourself helps thinking: There's an interesting analogy, just one of the other hats I wear is I work for the National Hockey League. I'm with the Tampa Bay Lightning. Been with them for 22 seasons. When someone has a concussion, we want them to recover, we put them on a rehab where they do 15- minute increments. 15 minutes of rest, 15 minutes of cognitive activity - I don't know, Sodoku, read, paperwork, whatever - and then 15 minutes of physical [activity]. It's called a circuit. In 15 minutes. And then you have 15 minutes, I don't know what you do with the other 15 minutes, do something. But you see, can I get through a whole circuit and stay functional?
We don't say, "Sit down and get all that paperwork done" because you will not do well. But take these breaks. It's called pacing. Or kind of get in the idea of circuits. And this really helps people recover from the trauma of a concussion, which is an electrochemical injury. Kind of like you guys have long term ... or some of you ... long term as opposed to an acute injury. Pace yourself, break it up with restful time, cognitive time, and physical time.
19:42 Measuring fatigue level before transplant is helpful: But I think I mentioned, I'm part of the vital organ testing at Moffitt because I can see this fatigue even before they come to transplant. So that's another thing we always want to measure. Because remember by the time I've seen somebody for transplant, they've already had chemo. You guys don't come to me brand new. And also, obviously, fatigue can be related to low counts, medications, and so forth. So, we have to take that all into consideration. Those should all be time limited.
20:08 Nutrition affects thinking: Nutrition. Quite often, our patients are on an immunocompromised diet, but I've had people that are malnourished. There's a term called cachexia, when the body is actually just so far below, it's actually eating itself to survive.
You've got to eat. You've got to eat fat and protein. I consider transplant patients being filled with between two and five million newborn babies. You don't give newborns celery sticks. You don't give them apple slices. You don't fill them up on water. I mean, stay hydrated, but you don't do that. You feed them the building blocks of a healthy body, fat and protein.
20:48 Sugar level can affect thinking: It's also important to watch sugar levels, especially if you've been put on high dose steroids. So, you may actually have a physical crash after eating, but you will have a mental crash, too. So you may think, "Wow, I didn't have chemobrain this morning, but boy, I ate lunch, and it was really simple carbs. I ate all this ... jelly sandwich and donuts or something, and then I crashed, I couldn't think my way out of a wet paper bag."
Yeah, that's not chemobrain. That's blood sugar and nutrition issues. But these things are really important. If you need to really be sharp and be on, you want to be really aware if you are one of the people that's prone to blood sugar issues. Don't overload on the simple carbs.
21:30 Physical deconditioning can make the brain feel sluggish: A lot of my patients are so small when they come out of transplant. Just deconditioning, but also, to regrow those stem cells into an adult immune system took thousands of calories every day. And chances are you didn't put thousands of calories in.
So, we see physical weakness. People have wasted muscles. They may not be unhappy with the total weight, but they'll hold up their arms and go, really? There's nothing there. And that's something that can actually ... if the body is deconditioned, the brain can actually feel sluggish and slow as well.
22:03 Physical stamina and mental stamina are linked: Obviously, particularly with our myeloma patients, the peripheral neuropathy can limit movement. Physical activity, like I said about the circuits, being able to have some restful sleep, cognitive time, and physical time. If you're not able to move because your feet are on fire, or they're so numb you can't feel, it may be hard to keep that movement going. But physical stamina and mental stamina are linked.
22:26 Learning disability. ADHD need to be accounted for when assessing thinking skills after transplant: So, when I do my intake for part of the transplant, again, people are coming with their own personal history. Some people are learning disabled. There's a certain percentage of our population that has a specific learning disability existing in childhood. Am I going to call them impaired on a list learning task if they have some sort of verbal learning disability? No, it's just evidence of their learning disability.
Some people have Attention Deficit Hyperactivity Disorder, some of my older patients may have MCI or mild cognitive impairment, a precursor to a full dementia, a dementia, or severe mental illness.
23:01 Cognitive assessment before transplant does not affect whether or not you can have a transplant: Just a little ... some people are worried about my appointment. My appointment does not stop a transplant unless the person says, "Get me out of here, I don't want a transplant." Which has happened twice, by the way, because you're alone with me. You don't have your family pushing you.
But let's say, it's a go, everyone wants it. These pre-existing conditions are risk factors, so we can make you safer. So let's say you do have a dementia, and just an example, one attending sent the same patient back to me three times so they could pass the memory test. I said, "Dementia's a progressive disease. Every time you send her back she loses three points. Stop sending her back, let's get two caregivers, and make sure everything's presented in writing to the caregivers. Keep her safe." She did really well. So, again, these aren't rule outs for transplant, these are, “what can we do to keep you safe in transplant?”
23:50 Alcoholism can affect brain function: We also want to know what you might be bringing into transplant that could be causing cognitive problems. Alcoholism, not good for the brain. You are going to have some memory problems. Substance abuse, it depends on the substance.
24:06 Nicotine may have a positive effect on thinking, despite overall health risk: Nicotine and tobacco, [do] not necessarily hurt the brain long-term functioning, but a lot of people actually do better on nicotine. They feel more calm and able to focus.
We say to you, "Hey, you can't have that" and they actually look a little more chaotic on testing. So, it's important to know that. And I'm not advocating nicotine for anybody, I'm just saying, it's important that I know where you are on your tobacco/nicotine dependence journey if that's an issue for you when I do testing.
24:28 Marijuana can affect thinking: Marijuana, of course, it's everywhere now, medical or not. Whether you know it or not. It could be in your CBD if you've gone to CBD. It's usually at 3%. And so, long-term use, you may look like you don't have the world's best short-term memory. But you're really pretty calm about it. So, if you don't care, I don't care. I'm not joking, by the way. It sounds funny.
24:56 Why do pre-transplant testing of cognitive function? So why do I do the testing? I want to know what's happening right away in the pre-transplant. So, is there a problem that's present, and what's the severity of it? Because we want to be able to watch this over the transplant course.
And for me, transplant isn't just getting you out of the hospital or getting you home. It's really that first couple of years. Because we want to be able to know if there's an intervention that would help. Hey, do I want you on more caffeine? Do I want you on ... we'll talk about the pharmacy later.
25:26 A patient’s subjective assessment of thinking can differ from an objective assessment: But also, anyone who's ever worked with me, I give feedback immediately. I'm scoring as fast as I can. I give feedback [at the] same appointment.
A lot of people come in and they miss one or two things on a list learning task, [and say] "See? I have Alzheimer's. I'm stupid. I'm a moron. I'm so stupid. It's all that chemo." I'm like, "You actually just scored about two standard deviations above normal. You're actually superior, or you're high average, or you're average. You're just a scooch under."
Or, if you're in really bad shape, you usually don't care. But, for everyone else, subjective complaints and objective complaints don't match. They just don't. So I have people that say they have phenomenal memories and they don't. And people who say they have horrible memories and they're wonderful. So, it's really important, because subjective and objective just don't match.
26:11 Purpose of neuropsychological evaluation: I don't think everyone always has to have a neuropsych eval, but if you're going to have one, we need to be ready for you. And what we need to know is, address all misconceptions. Be really clear, the purpose is not to weed you out from transplant but to understand how your brain is working. Because I come from a strengths perspective. If I can find something that's working, that's what I'm tapping into.
So if you're much more visual spatial, I'm going to tap into that side of you. Or if you're more verbal. In the real neuropsych world, testing can be like, ten hours. I'm happy to get one hour. And that's what I try to target. One good hour of your energy.
So, what's really important here? I have had people literally get out their drivers' licenses to show me who they are. "This is who I looked like before cancer got to me." I had hair, I'm not puffy, I look good. But I also want to know who you were before educationally and occupationally. It's really important. You're not just a number to me.
I review medical records, I read everything. Outside records too. But I also want to, like I said, people come to me already impacted by their cancer treatments. Got to look for substance use. And then I always want to know, as you're sitting with me, are you in pain, are you fatigued, are you having distress? Because I want to address those things.
I always throw in a cartoon. This is a short-term memory clinic. Shoot, what did I come in here for? How many people, and I will take a show of hands, have walked into a room and go, "What am I in the kitchen for?" Do y'all have chemobrain? No. I haven't had chemo and I did it. I do it all the time.
Literally, we are multitasking constantly. You could have been distracted. You might have heard the click of your mailbox as you're going down. What you really want to do is get the chicken out to defrost so you can actually make dinner, but you heard the click, and you go, "What was I in the kitchen for?" It's not a sign of anything other than, you were distracted at that moment.
28:16 No need to test intellectual ability before transplant: So, when we want to test, like I said, intellectual ability, I'm just going to assume that I can get that from a reading test. I will not do IQ testing. But I really want to look at simple and complex attention, because that's probably the number one complaint. People say it's memory, but it's really attention. Speed, learning, language, and like I said, executive function.
I've already kind of answered this. IQ testing is just not essential. So, if you go in the community and they go, "I'm going to give you a WAIS IV." Okay. They're going to charge you over a thousand bucks, give you an IQ number that I can get on a reading test in three minutes. It's just a lot of money for someone.
28:56 Cognitive testing should be done when you are alert: But let's talk about attention and concentration. Not everyone is alert and oriented when they walk in.
"Did you just have a Xanax?" "Yeah, I was so nervous seeing you." I'm like, "Well, I'm not testing you." I might interview you, but you're going to have to reschedule because your eyes aren't even focusing on me. I'm not joking. It really does happen.
Or I just had my biopsy with anesthesia. Let's do the memory testing. No. Come back. So, I really have to know, are you with me?
Sometimes I have people at their best, and they're not okay, and I'll take them then. But got to be aware of that. Can they focus and follow instructions? Not always. But they have to be able to focus across tasks. I have a lot of people that start strong and then peter out as the 45 minutes goes on. That's important information to me. Still valid. It means your mental stamina is
29:48 Working memory tests: So how do we go ahead and look at tests of working memory? There's something called Digit Span. So, I will say some numbers. When I'm done saying them, you repeat them back to me. So, let's do it as a group. Two, four.
[Audience] Two, four.
Six, three, nine.
[Audience] Six, three, nine.
It goes up to a series of nine digits long, I'm not doing it. Because I won't know if you're accurate or not because I can't remember that many. But that's as far as it goes. But then, I'm going to say some numbers and I want you to say them backwards. Let's try this one. Five, three.
[Audience] Three, five.
Seven, two, nine, six, four, seven, three. I'm telling you. I don't even know what I said. But that's an example of working memory. And most people should be able to get digits forward longer than digits backward. And if you actually do better on backward, I usually think you're malingering. You're kind of faking me out. It's one of our little cheats, you should know that.
List learning. You'll be given a list of words that's longer than seven. Why longer than seven? That's called super span. It's bigger than your working memory, to see if you can learn over time. This is a direct impact on how you're going to learn in the real world.
So, a list of words will be repeated to you multiple times. You'll be saying them back, and so forth.
31:05 Memory of stories more important than lists: There are other ways to look at attention on a computer. But when we look at memory and learning, and again, this is really important to me. We don't go around trying to learn lists of words, do we? We've got smart phones, we've got little steno pads, post it notes. But our world is stories.
So a story will be read to you, and you'll be asked to repeat it back word for word. It'll be read to you again. Repeat it back. Twenty minutes later, do you remember that story? That is what life is. Life is stories. So when you went and saw your doctor and they said, "Hey, this is what your MRI said. This is what your CT said. This is your schedule. This is who I'm referring you to." That's a story. It may sound like a list, but it really is a story. That's really, really important to me.
31:48 Non-verbal or visual spatial learners: So immediate memory is kind of the here and now. And in our world, delayed memory is just a few minutes after. But we also have people that, words just never clicked for them. Weren't great readers, wouldn't really pick up a book without pictures. And that's fine. I have people that just can't even read. It just happens every now and then. But boy, they have great memory for figures and pictures.
It's called nonverbal or visual spatial. I really want to tap into that because in a verbal world, a lot of people don't feel like they're doing okay, but when I can show them - because I'll have you copy a design and then I'll ask you to draw it from memory later - and if you pull off something I can recognize, I'm really happy with you.
And by the way, about my testing, I always say this. You can't fake good. So, when people go, "No, I really don't have a good memory," I go, "Well, how did you get 10 out of 10? How'd you get 20 out of 20? 18 out of 20?" Because you all don't know what's normal.
I have normative data, I've been doing this for almost 30 years, I know exactly what's normal and what's not normal. It may not feel perfect to you guys, but I can tell you if you're actually functioning well. Because that tells me I don't need to send you for a brain MRI. If you can pass all my tests, your brain is fine. But let's figure out what's going on instead.
33:04 The quality of thinking may be good, even if speed is not: I really like speed. Like I said, people do very well qualitatively. I can get a lot of answers right. But quantitatively, I may not give you as many. So there's something called a Trail Making test. Put your pencil on the one and connect targets in a certain pattern.
But another thing I look for is verbal fluency. This is one we can do. So, in one minute, and this is going to be interactive, I want everyone to list off as many fruits and vegetables as they can. Go. Fruits and vegetables.
I'm hearing more fruit. I want more vegetables. Okay. All right. I heard cucumber twice. You can't repeat. I don't know if it's from you. I want to say, how many do you think you should get in a minute?
Did someone say 60? Do you own a produce store? Damn.
No, anything really over 16 makes me happy. But what I'm looking for is, can you stick to fruits and vegetables and not hit the bakery and dairy section, that's called losing set. That's a sign of not being able to stay focused. I also look to say, did you give me maybe 16, 17 in the first 30 seconds and then nothing for the last 30. I'm running the stop watch and I'm hitting 15-minute tick marks. You petered out.
So, if your quality was good, I know you've got it in there. You got that. You're pulling up, you've got apples, bananas, cherries, strawberries. Did you do anything smart? Did you go, strawberries, blueberries, blackberries, raspberries? Did you hit the berries? Did you hit the citrus? Did you hit the salad bar?
Those are what I'm looking for. Are you using higher strategies to get me all these fruits and veggies? I tested my husband 20 some odd years ago, and I'm thinking, why are you doing this? He thought they had to be alphabetical. He was like, "Apples, apricots, bananas, cherries, oh, cantaloupe, cherries, dates," I'm like, "What?" I never said that. This is crazy. So, I make sure I'm really clear with what I want.
We do some motor speed testing, but I'll tell you, if people have peripheral neuropathy, it's not valid. So, I don't really do it very much.
35:25 Testing for executive functioning: But for executive function, problem solving and planning, and tests of inference, I really want to make sure you can focus and think and plan. Because that's really where we are different from every other person out there, or creature out there. I always want to know, where is your mood, your current quality of life, and I do a really good clinical interview, and possibly a loved one.
So, wherever you get tested, make sure they're using real tests with real normative data and not just something someone kind of kluged together. And it's really important to get feedback almost immediately. And it's really helpful to have pre-transplant, so if someone's concerned post, because I really want to get into our interventions. So, testing's been done, I saw you ahead of time, you looked great. You went to transplant, you don't feel good, I now see you. What happens?
36:11 Managing mood disorders can help with thinking: Well, if I think your testing is still pretty darn good but you look like you have a mood disorder, you can either have some therapy, you might actually ... just the feedback alone might make you feel better. Like, "Yay! My brain's working so I'm not going to be stupid." But if it's still a mood overlying disorder, I probably will want you to see a psychiatrist or at least someone probably in your community. Obviously with sleep, got to address sleep. And if you don't know you're not sleeping well, I will ask your loved one.
36:44 Managing pain, nutrition and substance abuse can help with thinking: If you're physically in pain, and this is very common - people may still have some pain issues or some symptoms - I'm good, but I can't make that go away. So, I really want your transplant team to see you. Or if I think you're the size of my pinky finger, you may know the rules of nutrition, but there may be ways to get a little bit better use of having a referral to a nutrition specialist. If you're still using substances, probably not going to help your brain. It just isn't. So maybe the psycho-education is enough, but you may actually need a referral out.
37:20 Caffeine may speed up thinking: So, let's say we've ruled out all the things that are pretty easy to fix. All right, so I've got you sleeping well, you're off the crack, you're eating again. I mean, we fixed everything, and you still feel like you can't think your way out of a wet paper bag. Well, chances are, I will tell you, if it looks like it's just a speed issue, I'm probably going to want you to consider something that will increase your speed. Instead of necessarily running out and getting amphetamines - Ritalin is an amphetamine, or a non-amphetamine stimulant like Provigil, and both of them are great medications - I want you to try caffeine. How do you feel on caffeine? Is anyone better in the morning than they are in the afternoon? Anybody? I am. Good thing they asked me to speak in the morning. It's a really good thing.
38:06 Drugs that speed up thinking: Some people are automatically put on a drug called Namenda, which is a Memantine, which is an Alzheimer's medication. It increases the availability of acetylcholine. Jury's out.
Why not? It probably doesn't hurt. But it can be sedating, and so can Aricept. But that's what some people choose to do, and if you are put on any of these pharmacologics, I'm going to want to see you a couple months out. See if we're at least holding your own or getting you a little bit better. I just don't want you to take it just because.
38:36 Figure out what works for you: But I'm really a big fan of knowing what works for you. I'm so old, we used to have palm things, like little handhelds. Palm Pilot, thank you. And then the Dad of this one patient said, "Stop recommending it. He's lost three." So, it was not a good compensatory strategy, they were expensive. But post it notes, write things down, or use someone else's brain. I'm a big fan of having a caregiver, loved one, "Hey, honey? Remember where we parked the car?” We're in Snoopy 17. Yes, Snoopy 17." Literally, use someone else's brain to help you.
39:13 Reduce distraction to help thinking: If you have something important to do, reduce the distraction. If you can, turn the phone off. Turn the music off. If you're trying to cook dinner, help your kid with homework, and the doorbell rings because FedEx needs a signature, you're burning dinner, snapping at your kid, and the dog's going to get out when you sign the FedEx. Because you just can't do all these things at once. So, reduce your distractions.
And I keep talking about pacing. Aha, you didn't know that? This is why elephants never forget. Didn't know that.
39:43 Physical activity improves cognitive ability: There is some research that says physical activity is actually improving cognitive activity. And I'm a big fan. We always say that when you're physically in the transplant, get up and move. Get out of bed. Honestly, you can't eat too much, drink too much, walk too much, or talk too much. Move. So even just gentle walking, puttering. Sitting isn't good for any of us, too much.
40:05 Meditation and mindfulness can help thinking: The idea of meditation and mindfulness training is showing some promise, mainly just to be more self-aware and to reduce some of the distress. A lot of people have this running internal dialogue. "I'll never be the same. I had a transplant. I'm stupid now." If you can kind of get the noise out, you might be able to tap down and focus a bit better.
40:22 Brain games can’t hurt, but don’t necessarily help thinking: People ask me, should I do Lumosity? Should I be watching Jeopardy? Probably not right now with that one guy. I wouldn't watch. Seriously. Damn. But, there is some evidence that it just makes you really good at those things. Like if you play Lumosity, you're going to get really good at it. Does it translate into the real world? Any game does. You could play Candy Crush. You could play Solitaire. It's just one of those activities that's not bad for you, but there's no clear evidence, but there's no clear detriment.
40:52 Learning new things helps thinking: Where there is some evidence is people get better for learning something new. I'm going to plant ... maybe not planting, that's probably not good. I'm going to teach myself a foreign language, or I'm going to try cooking a new cuisine. Something new. I'm going to take up art appreciation. The brain likes novelty. Like going on vacation, like I said before, you don't go on vacation to sleep. You go on vacation to do something new.
41:15 Cognitive rehab is for people with major trauma: Cognitive rehab is really for people with major trauma, so it's not really designed for the subtle changes of chemobrain. But there may be something out there. There's a few that have been adapted. No clear evidence. Can be very expensive. But there may be some pearls.
41:29 Most transplant patients have changes in thinking at some point, but most get better: So some final thoughts, because I've got to zip it here: Most patients have some change at some point of their treatment. They really do. It's real. That's why you have caregivers. That's why you have things presented in writing. You're not supposed to remember everything all the time. It's okay.
But, most patients return to their pre-disease levels, or at least their pre-transplant levels. And I can prove it, because I've done it over and over again. People are so surprised. It may be a little more effortful, but those scores don't lie. You can't fake good on my testing.
I think patients really benefit from the knowledge. Knowledge is power. You think you missed one and you're stupid. You missed one and you actually got 110, which is a high average score. You don't necessarily know the meaningfulness of walking into a room and not knowing what you went in for. It's pretty normal.
But if there are issues, I'm very multidisciplinary. So, if I think maybe your labs are low, you're not sleeping well, you're depressed, you're on really crazy pain meds that are making you all fuzzy. Multidisciplinary.
42:32 Question and Answer Session: So now we switch to questions.
42:46 Audience question about CDB oil: Thank you very much. What are your thoughts about CDB oil?
Booth-Jones response: Well, I learned a lot about it yesterday. Actually, the day before yesterday.
There is apparently only one that is prescribed. Epidiolex. Anyway, that has absolutely no THC in it. There's only one. It's FDA approved. All others have 3% of THC added, potentially.
So, if you are in a state where THC, which is the chemical compound of marijuana, is allowed, maybe it's not a big deal. But the CBD from the FDA approved list - there's only one [that] has been shown to help people be more calm. So, people can turn down their internal dialogue of, "Oh man, I'll never be the same. I feel bad." It may be helpful that way.
But there are other ways. But I have nothing negative to say about it. But I think the jury is so, so out on it. So brand new. Because most of it, we don't even know where it's sourced from. But there is one FDA approved one.
44:02 Audience comment about value of pre-transplant cognitive testing: Not really a question but just more of a comment. I had my BMT at Moffitt and had the opportunity as part of my pre-transplant workup of the psychological piece, was not aware it was not standard. But that one element really helped me to feel as though they were looking at me as a whole person, not just a physical aspect. And
44:34 Booth-Jones response: Thank you for that. It is absolutely standard and mandated at Moffitt, and has been for now 25 years, but it is not standard elsewhere. So, when I have patients coming from another center for their second transplant, or now they're going to CAR-, because I do the CAR-T patients as well, and they're like, I never saw one at Acme Hospital elsewhere. I'm like, hmm, okay. I don't know why.
44:56 Audience question about trouble with math in college after transplant: My question and comment, thank you so much. Because you helped my daughter at Moffitt, I remember seeing you. But she was a college student prior to her transplant, and she's just now getting back into college as of this year. And she's finding it extremely difficult for the classes that she used to have so much fun in.
How can I help her so she won't take it out on herself and say, "Well, Mom, I've just got to keep taking this class load." Because it's frustrating her, because I don't know how to help her with that.
Booth-Jones Response: Well, two things. College is the time where you're learning more than ever, right? So it's not just getting through your day, it's actually adding new information. So, my comments, number one, again,
Booth-Jones: Great. Good start. Is she accommodated in anyway?
Audience member: Yeah. They're letting her have extra time for tests and extra time for study hall whenever she needs it. So she's got the extra study hall with class, and she's got the extra time for testing. But she's so frustrated because she loves math, but now it's like, it's just not there for her. And she's just frustrated.
Booth-Jones: We can talk later. Is math essential for her degree?
Audience member: She wants to do marine biology, so yeah, it would be.
Booth-Jones: Because we can always get a core substitution, which is an option.
With a little bit more assessment. There are ways around this. It's actually an issue nationwide of having math ... college algebra has become a stumbling block for letting kids get past their AA or AS degree. So nationwide they're looking at
46:48 Audience question about educating employers about cognitive changes after transplant: One thing that events like this has helped immensely with is understanding things that you didn't know you had to learn. And my employer has been extremely supportive, but they don't know what they don't know, that I know about this. Any resources that you could suggest that can help them understand myself or any other people in the company that may be dealing with these types of situations?
Booth-Jones response: Well, my concern would be, you could overwhelm them with the contents of a talk like this. But I think the take home message is, the quality of my work will remain exceptional. The quantity may go down for a while, but I will pace myself. And some jobs don't tolerate that. And some jobs can.
It sounds like you have a great employer which makes me happy. But really, for most people, the quality is fine, the quantity just goes down. So, I don't know that you need to get them into the weeds of, well, the neurochemistry says. I think they'd be like, oh, okay, just do your job. It's too much. But I think that's really important. Unlike someone who's had a massive head injury, it's not an injury per se.
Audience member comment: [inaudible 00:48:01] this year for both because last year was a disaster. This has helped me to realize it's okay to back that off a little.
48:13 For some people after transplant, the brain stays in “idle mode” for a little bit longer than other before it reacts: Can I just say one other pearl I meant to say earlier? It just didn't get embedded in my talk.
So, I went to this chemotherapy conference, it doesn't matter, a couple years ago. Anyway. Functional MRI shows that certain groups of people that have had chemotherapy, their brain stays in idle, sort of an idle mode, for an extra two to three tenths of a second. So, it's called your reticular activating system, RAS.
Remember, functional MRI is an MRI where we actually see activity. This means regular doctors will believe it, because it's a functional MRI as opposed to me talking. So, a functional MRI means it is actually objectively documented that there's a certain group, maybe 25-33% of patients who've either had high dose steroids, chemotherapy, or so forth, who's reticular activating system stays in idle for an extra two to three tenths of a second. That doesn't sound very much, but if I said, "And get me the this, that, and the other," you'd be like, "I'm sorry, were you talking to me?"
So, if your loved one seems to always be one step behind, "Honey, I told you three times we're going to Moffitt in like ten minutes, go." I never heard you. They mean it. They're not lying.
Say their name first. My husband is Graham. I'm just using him as an example. "Graham, honey. Graham. We're going out to dinner at 6:30. Be ready. 6:30, okay?" And he literally will be like, okay.
But if I said, "Okay, we're leaving at 6:30," what? Say their name, get the eye contact, because their brains, for a certain group of people, might be just a hair behind. And that's just enough time to lose the plot.
Audience member: Permanent change?
Booth-Jones: No. Not permanent. But very real.
50:00 Audience question about pacing self to prevent fatigue later in the week: My wife, who you know, she basically has times when she'll ... I notice on Thursdays, she just wears down tremendously. I'm trying to get her to change her ways she does things to the earlier part of the week, so it will make it easier for her on Thursday. What do you think about something like that?
Booth-Jones response: I think pacing shows up in a microcosm of within an hour and across the week. I just think your energy is literally being used up. I mean, we all kind of go, TGIF, woo hoo, it's the weekend. We get to relax. But I just think you're petering out sooner. So, I don't know if you have the option of loading the front week, but still staying purposeful and active for shorter amounts of time as the week goes on. It just all comes down to pacing and having realistic expectations.
50:54 Audience question about memory issue while on maintenance therapy: I have multiple myeloma and I'm on maintenance chemo. And you talked about the recovery time after bone marrow transplant. What for recovery time now for that? I'm still on chemo, am I still going to be as affected as much for recovery?
Booth-Jones response: I know everyone's maintenance is different. My understanding, it's somewhere between 1/7 and 1/10 the dose you had before, is that correct?
Something in that range. If you're keeping your general wellness, you should stay pretty good. So, if it's not interrupting your sleep, I hope it's not leading to
Audience member: A little bit.
Booth-Jones: Yeah, I know. That's the double-edged sword for the maintenance for myeloma. So sorry about that. I would imagine that whatever big hit you took from the transplant's going to recover pretty quickly. And then you'll kind of be floating around 95% for a while on maintenance.
52:03 Audience comment about cognitive executive dysfunction: Mine is more of a comment. I did not go to Moffitt. I will not name where I went. My wife was a nurse, had been an oncology nurse, and so afterwards I was having the same symptoms. They did finally refer me to somebody there at the center who said I was definitely not depressed, so we ruled that out.
But on our own, we went to an expert like you, and anyway, they came up with a ... damn, I'm having chemobrain right now. This was 14 years ago. Executive cognitive dysfunction.
So I went back and told my transplant doctor that, he said, "Oh, don't worry about it. Just get a secretary."
Booth-Jones response: Well, I know that sounds flippant, but first of all, that's an unusual diagnosis to say. It probably meant the higher-level problem solving and the time it took you to do things was down.
And so, I kind of was joking, but I wasn't really, when I said you might need to use someone else's brain to remember higher level stuff. Or bounce things off other people. Or to kind of, hey, let's stay on task. Let's double check we're organized. And kind of pair up and balance your strengths with your loved one's strengths and do it that way. But that is a little bit of an unusual diagnosis. I'm sorry.
I'm not sure what that person was referring to.
53:40 Audience question about whether returning to teaching after transplant will be a challenge: Hi, I did have my transplant at Moffitt. And so just, thank you, because I didn't realize how important that part was going in to transplant.
My question is, I was an elementary school teacher for years before my first diagnosis. Went through chemo, didn't have transplant, went back to work fine. Relapsed. Now I had my transplant last summer. I am going back to work in August in a second grade classroom, which, I'm happy. I'm thrilled because I miss it. But I have a lot of reservations.
My principal's wonderful, my school's been wonderful. My biggest concern is putting it off on the kids if I am forgetful or get off topic. How do I go about explaining to seven and eight year-olds why their teacher might just be a little out there.
Booth-Jones response: Luckily, seven and eight-year-olds only think about themselves. So, you're off the hook on that. Seriously, developmentally, they really think about them and what they're having for snack, and is their homework going to be hard.
So, if you do something, chances are it'll be bigger for you. Like, “Oh, I forgot to ask them to turn their homework in”. Chances are you're going to have a little know-it-all in the front that's going to go,
"Do you want our papers?" You know what, lean on that person, because that person's going to love it.
Audience member: You're my assistant teacher. Yeah, okay.
55:06 Booth-Jones - It takes two to be embarrassed: But I really think, one of my favorite sayings in the world is, "It takes two people to be embarrassed." Right?
So if you do something and no one reacts, trust me. It didn't happen. No reason to be embarrassed. Seriously. So if you, "Oh my gosh, I just called little Suzie Q little Stacy Q, dang." If she didn't notice and they still responded. They won't care. They'll just love having you.
55:55 Audience question about whether cognitive changes are ever permanent: I'm just wondering if you see any permanent cognitive changes, and how common that is if it does happen?
Booth-Jones response: Well, permanent is an interesting word. Because I've been there a long time, and we don't really know what permanent means, but long-term. Let's use the term long-term.
Yes. I have seen people who have had some long- term changes, but it's not usually from the chemo. It’s usually because there was an event, or it was really at a really crucial developmental time when the event happened.
And so, if we look at adults, there really aren't too many critical developmental times really, for men after the age of 33, for women about the age of 24. So, we're not going to see that. But if there was a stroke, an infection, if someone had PRESS, or if someone took a fall and had a bleed, those can be permanent.
But the chemo itself, the thought is, really, you're going to get about 90% of what you got after the first year, and 10% the second year, and then you're kind of where you are. So, it could be subtle, but I haven't seen anything.
There could be individuals, but it's pretty rare, and I see a lot of follow ups. I probably do a follow up ... new patients probably 15 a week, follow ups, probably two or three a week. Most people are blown away that they're still doing so well.
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