Chronic Fatigue: Reclaiming Your Energy after Transplant or CAR T-cell Therapy

Good afternoon, everybody. Welcome to the workshop, Chronic Fatigue, Reclaiming Your Energy After Transplant or CAR T-Cell Therapy.

My name is Marla, and I'll be your moderator today.

Before we begin, I'd like to thank Sanofi, whose support helped make this workshop possible. It is my pleasure today to introduce our speaker, Ashley Nelson.

Dr. Nelson is a clinical psychologist at the Mass General Brigham Cancer Institute. She specializes in psycho-oncology with a focus on supporting individuals and families affected by blood cancers, including those receiving a stem cell transplant or CAR T-cell therapy.

Her research aims to better understand and improve the quality-of-life concerns that many patients experience during and after blood cancer treatment.

Please join me in welcoming Dr. Nelson.

[00:55] Dr. Nelson: Well, thank you so very much for that warm welcome, Marla.

I'm incredibly excited to be here with you all today to talk about fatigue really is more of a chronic issue and opportunities to reclaim energy in the long term after a stem cell transplant or CAR T-cell therapy.

I'm going to be doing this by starting to talk about what fatigue is and how common it is, as well as what commonly contributes to it in the short and long term after some of these treatments.

[01:26] Then we're going to be spending a lot of time talking about different kinds of strategies and opportunities to manage this symptom over the long term.

[01:35]  I like to start with the voices of people who've actually been there and lived it.

[01:41] I have some quotes for you from some of our research projects with people who've actually been through stem cell transplant and continue to experience fatigue over the long term.

[01:53] They said this about their fatigue.

[01:57] I just feel depleted.

[01:57] I just feel tired, like I want to go take a nap.

[02:02] I'm exhausted.

[02:02] I take a lot of naps.

[02:02] My energy level is low.

[02:08] You just feel the tank running empty and it's like everything kind of slows down.

[02:12] Thinking gets fuzzy.

[02:12] I'll get irritable.

[02:15] In the beginning, I had a very bone-weary exhaustion.

[02:18] Now that I'm working, I don't necessarily always have clarity of thought.

[02:22] And I think that affects my work.

[02:25] And it wasn't until a few years out that I really realized that this was not going to go away.

[02:30] I encourage you to think about whether these quotes resonate with you in your own experience of fatigue or if fatigue shows up differently for you.

[02:36] As you're hearing from some of these quotes, there's a lot of overlap in people's experience of fatigue, and there's some common themes, but there's also ways in which there's departures and differences here.

[02:41] That really brings us to the question of what fatigue actually is.

[02:46] If we take a step back from the setting of illness, we know that under usual conditions, fatigue is generally an adaptive response to physical or psychological exertion or stress.

[02:52] If we deplete our resources, for example, by running a marathon or taking a very important test or attending an all-day work conference, then fatigue actually helps us to take a step back and rest and recover those resources before going back out into the big wide world that's really full of challenges.

[03:30] However, I really love this quote by M. Jane Paulson, who says that the deadening fatigue, which invades the very bones of cancer patients, is totally unlike even the most profound fatigue of an otherwise well person.

[03:42] This really highlights that cancer or transplant, or CAR T-related fatigue is often quite different from everyday tiredness.

[03:51] Compounding this issue is that we actually don't have any one accepted definition of what fatigue is.

[03:57] In the work that I do, I tend to rely on this definition that's put forth by the National Comprehensive Cancer Network.

[04:04] And that's what you're seeing on the slide here.

[04:06] You can see it's a really wordy definition.

[04:09] So I'm just going to highlight some important parts.

[04:12] One is that fatigue is a subjective symptom, meaning that your experience of fatigue is something that really matters here.

[04:21] Additionally, if you're somebody who thinks that fatigue is a physical symptom, you're absolutely right.

[04:26] It is.

[04:27] But fatigue also has emotional and cognitive or mental components to it.

[04:32] It's also much more than just a physical symptom.

[04:36] Importantly, this is also the kind of fatigue that tends to interfere with people's everyday activities and their usual functioning.

[04:45] Once we know a little bit more about what fatigue is, we can start to ask questions about how common it is.

[04:51] I want to make it very clear from the get-go that fatigue is a normal and expected part of transplant and CAR-T for at least about the six months following some of these treatments.

[05:03] That's really what you're seeing reflected in the graph on the slide.

[05:07] This is data that comes from the University of Wisconsin and includes hundreds of people who've been through stem cell transplant, both who've received their own cells as well as a donor cell transplant.

[05:20] The red line reflects the average fatigue severity for hundreds of people over time.

[05:28] And everything above the gray dotted line indicates what we call clinically significant fatigue.

[05:33] This is fatigue that's more than mild in severity.

[05:37] And there's a couple of important things that I want to note out to you.

[05:40] First, even before the transplant starts, the average fatigue level is above that line.

[05:46] So people are starting out on average already fatigued before transplant.

[05:50] But we also see that fatigue really spikes during the first month or so after transplant.

[05:56] That makes sense because that's right around the time that people are receiving the chemotherapy conditioning.

[06:02] Then we see that there's a recovery in fatigue over the first few months, about through six months post-transplant before things really level off.

[06:12] Now, importantly, this recovery process looks smooth because the line is smooth there.

[06:18] But that's just because this is an average of all those people.

[06:21] There's a lot of individual variability around how that recovery process really looks.

[06:28] And that's to be expected.

[06:31] Now, the other thing I'll say is that I'm sharing a lot of examples with you from stem cell transplant because transplant's been around for decades.

[06:40] And CAR-T is relatively newer by comparison.

[06:44] However, there has been early research in the CAR-T space that really suggests that there's quite a similar pattern around fatigue in CAR-T, where fatigue seems to be elevated even before CAR-T, that there's a kind of spike around the CAR-T procedure and hospital stay, and then there's a recovery period over those first six months, but fatigue's really probably still elevated around that time.

[07:09] We don't have as much data on what happens long-term after CAR T because CAR T is newer, but we do have a lot of data from the stem cell transplant space.

[07:19] And so you can see in this study, fatigue doesn't improve over those next six years post-transplant.

[07:26] In fact, in this study, we see that it actually ticks up slightly.

[07:30] This really makes the point that fatigue can become a chronic symptom after stem cell transplant for sure, and likely after CAR-T as well, although we're still waiting to get those long-term studies in.

[07:43] Now, data from the exact same study is presented here, and we can see that 64% of people are continuing to report clinically significant fatigue six years after transplant.

[07:55] So that is a lot of people.

[07:58] If this is affecting you and you're in these shoes now, I'm here to tell you that you're not alone in this.

[08:04] Importantly, this is the kind of fatigue that doesn't always match how somebody looks to others.

[08:11] Again, we're talking about being years post-transplant and CAR-T.

[08:16] A lot of aspects of appearance have really kind of returned to quote unquote normal.

[08:22] And yet people can still feel this really devastating impact of fatigue on the inside.

[08:28] It's often this mismatch between how somebody looks on the outside versus how somebody feels that can really drive a lot of distress.

[08:38] In fact, a lot of research supports this.

[08:41] We see that people who are dealing with fatigue chronically often have lots of impairments in their everyday activities.

[08:47] They have trouble focusing and paying attention.

[08:51] They may have trouble maintaining meaningful relationships and having kind of the give and take of those relationships.

[08:57] They may struggle going back to work or have impacts on mood.

[09:01] This came up a lot in some of our research interviews that I was mentioning before.

[09:06] People said things like the fatigue commands them.

[09:09] It is a defining factor now.

[09:11] This person in the orange bubble is talking about having impacts on their ability to engage in activities with their young daughter.

[09:20] She says a lot of activity that I would really like to engage with my daughter.

[09:23] I can't do that.

[09:26] this person in the green bubble is saying that they feel really changed by their transplant and accepting the outcome so far and being grateful for that outcome.

[09:35] But I would like to have come back out whole again.

[09:38] This brings us to the all-important question of what's actually contributing to fatigue, right?

[09:43] What's going on here?

[09:44] The infographic on the slide is giving you a sense of just some of the things that are playing a role more generally in terms of fatigue, but also specific to CAR T and transplant.

[09:56] We just don't have nearly the amount of time that we would need to go through all of these topics in detail.

[10:01] Maybe if the entire symposium was focused on this, we could achieve that.

[10:06] I want to just say here is that some of these aspects are playing more of a role early on in the transplant and CAR T space.

[10:13] And some of these things become more relevant over time later on.

[10:20] For example, the cancer or the disease and the treatments themselves are playing a big role in experience of fatigue early on.

[10:27] Like when you get the chemotherapy conditioning, what's happening is that chemotherapy is killing cancer cells, but it's also killing healthy, rapidly dividing cells and causing damage there.

[10:32] Your body is using a lot of resources to step in and try to heal and repair that damage.

[10:39] And that's playing a big role in why you experience fatigue over those first six months.

[10:46] Now, we also know that inflammation is highly linked to fatigue.

[10:58] It turns out that there's a lot of different sources of inflammation in the stem cell transplant and CAR-T space.

[11:05] So if you've been through CAR-T, you will have heard of ICANS and cytokine release syndrome.

[11:11] These are associated with inflammation.

[11:16] If you've been through stem cell transplant, you will know about acute and chronic graft-versus-host disease if you've had a donor transplant.

[11:21] And for everybody, people are immunocompromised after these treatments, and so they're at higher risk for infections, which also kick up inflammation and can lead to fatigue.

[11:35] And additionally, beyond inflammation, we know things like low blood counts and anemia can become a problem for folks in the long term after these treatments.

[11:44] This is exactly what makes fatigue such a tricky issue after some of these treatments is because there's just so many different things that can be playing a role.

[11:55] And this is why the waters really can become quite murky.

[12:00] I think it's useful to have an organizing framework to help understand this.

[12:05] And that reflects fatigue for the complex biobehavioral symptom that it is.

[12:10] And that's just a fancy way of saying that fatigue is influenced by both physical and behavioral factors.

[12:16] And so within the framework that I use in my work, we can start by identifying the kinds of things that trigger fatigue initially.

[12:25] We call these precipitating factors.

[12:28] There are things like the chemotherapy conditioning I was just talking about or the inflammation or the low blood counts.

[12:35] They're things that trigger fatigue to occur.

[12:41] Additionally, once we have fatigue on board, as individuals, we get affected by that, right?

[12:47] Like we respond to it because fatigue isn't a fun experience.

[12:47] What we tend to do is  to rest more and be less active.

[12:53] We might nap during the day.

[12:59] We might clear our social calendar.

[13:06] We might even start to feel a bit helpless or hopeless in the face of it.

[13:11] Some of these responses actually feel good momentarily.

[13:18] Like things like taking a nap can feel good in the moment, but some of the responses can serve to feed fatigue over time and actually cycle into fatigue.

[13:25] Another way to say this is that our responses to fatigue can also modulate our experience of fatigue.

[13:31] It can help fatigue or it can feed fatigue.

[13:36] This is really important because where we're moving to for the rest of the talk is really talking through different kinds of strategies and things that you can think about doing to try to manage fatigue.

[13:36] This is a bit of a roadmap of where I intend to go.

[13:42] We're going to talk about staying informed and curious, talking with your doctor about possible underlying medical contributors, learning about and using self-management and behavioral strategies.

[13:55] This is the largest bucket that we're going to be discussing.

[13:58] Then seeking a referral to a specialist and finding opportunities when you might want to do that.

[14:06] Okay, so staying informed and curious.

[14:08] By the way, congratulations, because you're already doing this in part.

[14:13] Just by nature of being here at this symposium put on by BMT InfoNet and being here at this talk, you're demonstrating curiosity.

[14:22] Whatever brought you here, welcome.

[14:24] It's great to have you.

[14:26] I hope you can take whatever is useful from this talk and leave the rest.

[14:32] Staying informed and curious can sound pretty basic, but I will say it's pretty hard to do in the face of a chronic symptom.

[14:40] Yet, even in the face of chronic fatigue, fatigue is still a symptom like any other that can change and fluctuate over time.

[14:48] With this in mind, it's really helpful to be able to take a step back and get clear on how fatigue and energy are showing up for you now.

[14:54] One strategy to help you do this is to really track what's coming up for you, both in terms of fatigue and energy, but also in terms of other things that might be influencing it.

[15:01] I have an example of a tracking log on the slide.

[15:14] This is by no means perfect or the only way you can do it, but hopefully it gives you a sense of what this might look like.

[15:22] Tracking fatigue over the course of several days or over several weeks might help to see whether there are any patterns in things that are affecting fatigue for you.

[15:33] It's really best to try to approach this exercise from a place of curiosity rather than judgment, if at all possible, just because you're going to get more out of it.

[15:44] Now, the next thing is talking with your doctor about your fatigue.

[15:48] We've been talking so far on how fatigue is quite common, but it turns out that there's actually a lot of instances in which people might not be talking about this with their doctor.

[15:59] And so much so that there's actually research into this.

[16:02] Some common reasons people have for not speaking up about this is because they think their team already knows or isn't interested, thinking that fatigue is not fixable or nothing helps.

[16:15] Hopefully some of what we're discussing today can help challenge that or change that a bit for you.

[16:21] Thinking that there's other issues that are more important or urgent.

[16:24] And that's certainly true, right?

[16:26] In transplant or CAR T, there's all kinds of things that can come up.

[16:29] Sometimes fatigue just slips down the totem pole.

[16:33] Thinking that fatigue feels minor, doctors not asking about it or not wanting to be a bother.

[16:41] Again, this is another thing that came up in some of our research interviews.

[16:44] This person says that they've tried to manage fatigue on their own and never really talked much about it with their doctors.

[16:50] And she says, I don't know if that was a mistake because maybe they have more tips and tricks that I don't even know about.

[16:57] Now, another reason to bring this up with your doctors, though, is to check for whether there's any medical contributors that could be underlying your fatigue or changes in energy.

[17:07] As we've been discussing, there's a whole host of things medically that can happen that can contribute to fatigue.

[17:14] Particularly if you're having a sudden increase in fatigue that's really unexplained, or if you're having fatigue that really interferes in your everyday life over a long time, then it might make sense to talk with your medical team about whether there's any kinds of tests or treatments that could be helpful.

[17:33] So that's something to explore.

[17:36] Now, another reality that can contribute is that after transplant or CAR T, it's really common to need to be on many medications at the same time.

[17:45] And sometimes it's the interactions in these medications that can be driving this symptom.

[17:50] Then there's certain medications themselves that can contribute to fatigue.

[17:55] Some of those medications are listed here on the slide and include things like medications for pain, sleep, anxiety, allergies and blood pressure, Alcohol is certainly not a medication, but it has a sedating effect.

[18:08] That's another thing that can be playing a role.

[18:11] Sometimes, trying to improve your fatigue and energy might start with asking a trusted member of your medical team or an oncology specific pharmacist to really take a review of your medications and see if there's anything that can be changed there.

[18:28] It doesn't always have to be as dramatic as stopping a medication that's helping you.

[18:32] Sometimes it's just about changing the time of day that you take a medication or maybe change a dosage.

[18:39] Again, another thing that you might consider exploring.

[18:44] Now we're moving into the section of the talk where we start to talk more about different categories of things that we do every day that can affect fatigue.

[18:53] The first category we're going to discuss is nutrition.

[18:56] There's been a lot of research that demonstrates that there's links between nutrition and fatigue.

[19:01] There's probably a lot of different mechanisms by which that happens.

[19:06] The good news is that, you know, the basic guidance we've heard in terms of nutrition guidance over time to, you know, eat regularly and eat, you know, varied types of foods and whole foods is actually really the foundational building blocks on which we can sort of manage fatigue and improve energy.

[19:30] Now, one thing that does happen with nutrition is that sometimes more nutritional foods take more time and effort to prepare.

[19:38] I've seen patients sometimes who say they've really gotten into a habit of reaching for convenient but non-nutritious options, or they've gotten into a habit of just running through a drive-thru every day, or maybe even skipping meals altogether because, you know, it just takes a lot of effort to prepare the nutritious options.

[19:48] If that's happening for you, you can think about different strategies that work in your life to try to prioritize getting the nutrition you need.

[20:10] Sometimes this is something like batch cooking healthy meals and really making use of your freezer so that it's just more readily available.

[20:16] Or if you live with somebody else, kind of delegating certain aspects of meal preparation or cooking to them as well.

[20:28] Sometimes it takes a village to do these kinds of things.

[20:31] Beyond that, I will also just add to not neglect hydration.

[20:37] We need good hydration to carry waste away from cells.

[20:42] And so, keeping things like water bottles around, especially the kind that have like the numbers and the tracking on them.

[20:47] So you can kind of know how much you've been drinking can be really useful.

[20:52] If you're not much of a water drinker, don't worry, there's lots of different good sources of fluids.

[20:57] And some of those are on the slide.

[21:05] The other thing I want to say before I move on is that I just want to put a plug out there for registered dietitians who have a ton of expert knowledge around nutrition and how it also affects fatigue.

[21:12] If this kind of basic approach just isn't enough for you, certainly there's a lot of complex things that can happen in the aftermath of transplant and CAR T where, you know, you can have a lot of specialized nutritional needs, then that might be a reason to reach specifically out to a registered dietitian for support.

[21:19] Now, the second category that we're going to talk about now is activity and fatigue.

[21:42] I want to start by just showing you two common patterns of activity that are pretty associated with chronic fatigue.

[21:50] Now, the first pattern or profile we see is called the peaks and valleys pattern.

[21:55] Sometimes in the literature, this is called the boom-and-bust pattern.

[21:59] And what this is, is it reflects that people who are living with fatigue chronically tend to have these good days and bad days.

[22:07] And on the good days, they tend to do a lot and be really active and try to catch up on all the things that they've been missing.

[22:14] As a result, they end up pushing themselves into this peak of activity.

[22:20] Then in response to that, they crash down into a valley.

[22:24] It usually takes them several hours to several days to start feeling better again.

[22:29] And then the cycle repeats.

[22:30] So you get this kind of mountain range of really high highs and really low lows of activity.

[22:36] Now, the second profile that we sometimes see, I call the flatlands pattern.

[22:42] I think people who have been through transplant and CAR-T are particularly at risk for this pattern because there's just so many restrictions around transplant and CAR-T.

[22:53] If you're not very intentional about things, it's easy for activity to really get low over time.

[23:01] Sometimes if that goes long enough, people can get into this cycle where even small amounts of activity can feel really overwhelming.

[23:09] Sometimes people keep their activity low out of fear of experiencing more symptoms.

[23:16] These are two common profiles, but the question is, what can we do about it?

[23:21] One of the strategies we use is called activity pacing.

[23:24] This strategy is particularly useful for people who are in the peaks and valleys of activity, the really high highs and the really low lows.

[23:32] Activity pacing is just what it sounds like.

[23:35] It's all about balancing rest and activity.

[23:38] There's actually a lot of different ways that you can pace your activities during the day.

[23:43] There's no one right or wrong way to do this.

[23:46] But the overall goal is to achieve more of a gentle rolling hills pattern like you see on the slide.

[23:52] So you're still getting variation in activity and highs and lows, but the highs aren't quite so high, and the lows also aren't quite so low.

[24:03] We're going to turn to how you can pace your activities next.

[24:06] But just before I do, I want to say that one common hang up point that I sometimes run into is people say, well, why shouldn't I keep going if I feel good?

[24:16] And that makes sense.

[24:17] This is an issue I have a lot of sympathy for, because as we've been talking about, transplant and CAR-T have all these different restrictions.

[24:25] Once you're like years out from these treatments, you want to, you know; it makes sense that you want to seize the day, especially if, you know, you're feeling good pretty rarely.

[24:37] And yet doing this just kind of overdoing activities when you feel good often comes at a very high cost.

[24:47] And the cost is often to fall down into that valley.

[24:50] If this is happening for you, essentially what's going on is you're kind of robbing Peter to pay Paul, right?

[24:57] You're robbing your future self out of the opportunity to potentially feel better for longer because it feels good in the moment to keep going.

[25:06] I'm certainly not here to be the activity police, but I do want you to be aware of how some of these things might have effects on your life so that you are better informed and can make choices to support yourself.

[25:22] Now, as I said, there's lots of different ways that you can do activity pacing, and this has a list that you can kind of look through on your own time.

[25:29] I'm going to go through just a couple of examples in terms of the amount of time that we have here today.

[25:35] The first item on this list is you might think about engaging activities based on time rather than how you feel.

[25:42] An example of this is maybe, you know, raking leaves for 30 minutes instead of all afternoon.

[25:49] Now, the next thing on the list is you can classify activities whether they require a lot of physical effort or if they are more mentally taxing or socially taxing.

[25:59] Then if you can incorporate different types of activities throughout your day, that's one way you can support yourself.

[26:05] Because what you don't want to do is have all physical activities in one day or all social activities.

[26:12] That's another way that we can exhaust ourselves over time.

[26:16] The third thing on this list is breaking tasks into smaller steps or engaging in simplified versions.

[26:22] An example of this is that instead of cleaning the entire house, you might dust one day and vacuum another.

[26:30] Then skipping ahead a little bit, we've been talking about this idea of proactively incorporating opportunities for rest.

[26:36] That's great.

[26:38] One thing people sometimes forget about is also incorporating opportunities for flexible time into your schedule.

[26:46] That's because you can have the best schedule that's absolutely doable, even at your current capacity.

[26:53] But who hasn't had the experience of having the doorbell suddenly ring, right, and getting an unexpected visitor or having a phone call that you weren't expecting and being on the phone for an additional 45 minutes.

[27:05] Sometimes it's these unplanned surprises that really push us into that peak of activity.

[27:12] If you build in flexible time to your schedule, your schedule is just better able to absorb some of those things.

[27:19] There's more here too, so feel free to peruse that in your own time.

[27:25] Now, beyond activity pacing, another strategy that we sometimes use is building up your activity level slowly and consistently over time.

[27:34] This is also sometimes called graded activity increase.

[27:38] The reason why this is important is because a more common pattern for people to get into when they're trying to get back to doing activities is that they have a tendency to dive back in in the way that they used to be able to engage in activities or in the way that they think they should be able to engage in activities.

[28:00] I'll say that this is a really big trap and often leads to limitations in what people are able to do.

[28:08] And then a lot of like disappointment and frustration around it.

[28:12] Maybe that's even happened to you.

[28:14] This has a way of really shrinking as opposed to creating opportunity that isn't helpful.

[28:21] A better approach that we've found is this idea of starting at a level of an activity that you know you can definitely do.

[28:29] That's based on what your current capacity is.

[28:32] You can do a little testing to figure out where that level is.

[28:36] You start at that current capacity, not based on what you used to be able to do or what you think you should be able to do.

[28:43] From there, the idea is to increase a little bit with that activity every day or on a consistent basis.

[28:51] For example, if you're doing walking and maybe you started off at one minute of walking or five minutes or 10 minutes, depending on what you're currently able to do, then you might add a minute or two of walking each day.

[29:05] Some people also do this through tracking their steps.

[29:07] If you have a pedometer or most smartphones now track steps, that's another way that you can build over time.

[29:16] But the idea generally is to increase that this sort of small step increase can lead to big change over time.

[29:26] Now, there's lots of evidence for exercise being helpful.

[29:31] The good news with this is that it doesn't seem to matter what kind of exercise you engage in.

[29:39] If you're doing strength training or resistance training, it all seems to be useful in terms of improving fatigue.

[29:44] I think the main things to keep in mind are that sometimes there's safety things that you need to pay attention to.

[29:50] After transplant or CAR T, there might be changes to blood counts or bone metastases.

[29:57] If you have questions about this, just make sure you're in touch with your medical team about this.

[30:03] Then you also want to be able to choose an exercise program that works for you and that you'll actually do, right?

[30:08] The only exercise that's helpful is what you're actually engaged in.

[30:15] So that's worth keeping in mind.

[30:22] One other tendency to note around activity is that when energy is low, people sometimes naturally start cutting out enjoyable or meaningful activities first, and they prioritize their responsibilities or obligations.

[30:27] That's really understandable, but over time that can actually make fatigue feel heavier because those activities are important to our overall wellbeing.

[30:33] Part of managing fatigue is being really intentional about this and making sure that even with limited energy, some of it is going towards things that you enjoy and that really gives you a sense of meaning.

[30:56] Again, this doesn't have to mean doing a lot.

[31:02] Sometimes it's just small things that you can build on over time, just like we were talking about before.

[31:07] It's about prioritizing those activities as essential and not optional.

[31:13] Over time, protecting that space for what matters can be a surprisingly powerful way to live better with fatigue.

[31:18] There's actually a talk on this later today in case you're interested.

[31:27] We're going to move next to the next categories on sleep and fatigue.

[31:33] This is a really important one as sleep can play a big role in people's experience of fatigue.

[31:33] Sleep problems are really common after transplant and CAR T.

[31:39] Some of the more common conditions or sleep disorders that show up include insomnia and sleep apnea.

[31:45] Here are some common warning signs to keep an eye out for things like persistent trouble falling or staying asleep, loud snoring, gasping for air during sleep, really significant day intense sleepiness where you're having trouble keeping your eyes open throughout the day.

[32:02] If any of that's going on, that's something to talk with your medical team about and see if it might make sense to have a referral to a sleep clinic.

[32:10] Again, getting diagnosed and treated for some of these sleep disorders is a great way to improve your fatigue.

[32:16] There's wonderful treatments for these sleep disorders that tend to be quite effective once you're in them.

[32:22] Cognitive behavioral therapy for insomnia is a gold standard treatment for insomnia.

[32:28] It's generally very widely available.

[32:35] One downside is that there can tend to be long wait lists.

[32:42] If you're in that situation, one resource to think about is a free app called CBT iCoach.

[32:42] It's available through the app store.

[32:42] Like I said, it's free.

[32:51] That might be a resource to look into.

[32:51] Beyond sleep disorders, sleep can still affect fatigue, even when you don't have a sleep disorder necessarily.

[33:02] And that's because each of us has an internal clock called the circadian rhythm that helps us know when to be awake and when to be asleep.

[33:11] There's different ways in which that clock can stop keeping time effectively.

[33:16] One way is that when we're tired, we might tend to nap or doze off during the day, and this can worsen sleep at night, which then reinforces the need to nap or sleep during the day.

[33:27] The question is how to deal with this.

[33:30] Two of the strategies that we use in tandem to try to help that clock keep time better is to follow a sleep schedule and to limit or eliminate daytime naps and lying down.

[33:44] This first point about doing a sleep schedule just involves having a set bedtime and a set wake time that you adhere to on a consistent daily basis every single day for at least several weeks.

[33:57] You'd be surprised how quickly that sleep clock kind of writes itself.

[34:02] Now, the one caveat using this strategy is you need to make sure you're leaving enough time to get the rest your body needs at night while you're in bed.

[34:10] No amount of consistency is going to fix things if you're only allowing yourself five hours of sleep, for example.

[34:18] The second point on limiting or eliminating daytime naps and lying down is also really important, particularly if you're years out from transplant or CAR T, as sort of these are the kinds of things that can really perpetuate fatigue over the long term.

[34:38] There are certain situations where you may absolutely need a daytime nap.

[34:43] For example, early on after CAR T or transplant, if you're in the first few weeks or months, a daily nap is fine.

[34:51] But in this case, you might want to limit to just one nap a day.

[34:55] Try to be consistent on the time of day that you're taking a nap so that your body can sort of adjust and expect it.

[35:02] And doing it earlier in the day is better so that it's less chance of impacting your nighttime sleep.

[35:09] Limiting to be under an hour is really best.

[35:14] Now, there's lots of other extra tips here on getting better sleep-wake habits in general.

[35:20] We've all heard the guidance around limiting your screen time around bedtime because that's really activating for the brain.

[35:26] What we're trying to do around bed is generally create relaxation and a wind-down routine to really get your body and mind into a place where it's ready for sleep.

[35:38] That's where some of these recommendations come from.

[35:38] Also, using your bed only for sleep or sexual intimacy is really important, too.

[35:38] Being out of your bedroom during the day is important.

[35:52] If you have trouble getting up in the morning, you can try planning activities in the morning just to support yourself in getting the day started.

[36:00] Now, if you try any of these strategies, I'd encourage you to do it for just, you know, one or two for several weeks at a time, because, you know, there's a lot of variation in just a day.

[36:13] You really want to try it for several weeks.

[36:17] The last category that I'm going to talk about is stress and emotional well-being.

[36:23] After transplant or CAR T, it's really common for the body to feel on high alert for a long time.

[36:29] And that ongoing stress response can be physically and mentally draining.

[36:32] Things like worrying about the disease coming back, low mood or feeling on edge can all really make fatigue feel worse.

[36:39] If you're feeling this way, it's important to recognize that this is part of fatigue.

[36:44] Just as important, this kind of fatigue is not a sign of laziness or personal failure.

[36:49] It's a real whole-body response to everything your system has been through.

[36:56] Some of the tools we've been discussing can actually help protect your energy.

[37:01] Things like pacing your day, building in rest breaks, staying connected with supportive people, and using simple strategies to manage worry.

[37:09] Things like mindful awareness have really been shown to help.

[37:12] And importantly, you don't have to figure this out alone.

[37:12] Psychologists, social workers, and group support have all been shown to help.

[37:23] If you're here as a family member or a caregiver, one of the most helpful things to do is to understand that chronic fatigue is not something the person just simply pushes through.

[37:33] One of the most powerful ways to help is to validate that fatigue is real, even on days when they look fine, right?

[37:40] That kind of understanding can really reduce stress.

[37:43] It's also helpful to support pacing.

[37:45] Again, you can help by planning activities together, prioritizing what matters most, building and breaks before exhaustion hits.

[37:53] Practical support can also make a big difference.

[37:55] So helping with cooking or meals.

[37:58] Just as important, listening and gentle encouragement is also really useful.

[38:04] Supporting small and gradual steps without pressure or judgment helps people keep going.

[38:10] Again, the goal isn't to force energy back, but to create the conditions where it can slowly build and people can thrive over time.

[38:18] I don't have time to cover this but just know that in partnership with some of my collaborators at Moffitt Cancer Center in Tampa and the University of Amsterdam, my research team has been developing and testing a program to try to treat fatigue in the aftermath of stem cell transplant over the long term.

[38:39] We've been really excited by some of our preliminary work, and we're going to be doing larger studies on this.

[38:46] You can be doing a lot of the things that I've been discussing so far, and I recognize that that's a lot.

[38:52] This can be overwhelming, but you can be doing a lot of this and still struggling.

[38:56] If that's happening for you, it's important to know that that's not your fault or a sign of failure.

[39:02] It just reflects that fatigue is complicated.

[39:04] What it is, though, is it might be a sign to reach out for others for support and help.

[39:10] I've included some information here about different specialists and the kind of expertise they have and the interventions they do for fatigue to try to help you in guiding what you might lean towards.

[39:24] I think at this point, I am going to wrap up there and just recognize that fatigue is complex, and I'm sure that there's questions.

[39:32] I'm looking forward to taking your questions.

Questions & Answers

[39:37] Moderator: Thank you, Dr. Nelson, for that very helpful presentation.

We'll now get to some Q&A. If you have a question for Dr. Nelson, please type it into the chat box on the left side of the screen and we'll answer as many questions as we can.

The first one, someone just asked if you could mention the name of the app regarding sleep that you talked about.

Dr. Nelson: Yes, that's such a great question. I'm so glad you came back to that because I didn't have it on the slide. The name of the app is CBTI Coach, Coach like C-O-A-C-H.

It stands for Cognitive Behavioral Therapy for Insomnia, Coach.

The app was developed by researchers at the VA hospital and has a lot of great tracking tools and information about insomnia that can be useful.

If you're waiting to receive care for insomnia, if you're waiting to receive CBTI, or sometimes people use this app too when they're working with a therapist on CBTI.

Lots of different ways that it might be useful, but it is specific to insomnia.

[40:43] Moderator: Thank you. This person wants to know if they're creating a bad habit that contributes to their fatigue. They go to bed at 10 o'clock and fall back to sleep in the morning after waking up around 6 a.m. And then they wake up again at 8 a.m. Is that not a good routine to get into? Should they not fall back asleep in the morning?

Dr. Nelson: I hear that. One of the things that I think that's such a great question.

I'm really glad that you've shared your experience here.

One of the things that can happen when this kind of pattern develops is people can just feel really frustrated by being in a pattern that doesn't match what they're hoping to sort of, how they're hoping to support sleep and their behavior around sleep.

I think that is something that could be contributing to fatigue, particularly if you're not consistent, right?

Maybe if you're waking up at seven o'clock some days and eight o'clock other days and nine o'clock other days after that brief awakening, that is absolutely something that could be contributing to fatigue.

So getting more consistent sleep, I think really matters. And then, falling asleep later in the day can also really contribute.

I think it depends on the consistency around that, but it sounds like it could be playing a role.

[42:24] Moderator: Thank you.

Next question is, certain specific probiotic strains have small clinical trials demonstrating stress hormones, cortisol reduction, and sleep quality improvement.

What is your opinion on probiotic supplementation?

Dr. Nelson:That is a great question, and I am unfortunately going to have to defer that question because it's just not an area of expertise of mine as a psychologist.

There is some, I hear you, and there's some interesting research coming out around probiotics. It's just not something that I feel very qualified in speaking about and giving you kind of the most up-to-date evidence on.

And so this is another area where I think dietitians can offer a lot of specific guidance. So I'd encourage you to seek out their expertise if you're comfortable.

[43:24] Moderator: Thanks. This is a question from a care partner. They are exhausted and unmotivated. Their partner has the 100-day mark post-transplant, and they're both over 70 years old.

What can they do to help themselves?

Dr. Nelson:Thank you for writing in and just sharing some of your experience.

I think it's so true that caregivers and caretakers absolutely can feel the impact of going through transplant and CAR T too and often have fatigue levels that rival those of patients going through it.

I'm really sorry you're going through this experience. It's both emotionally and physically very tiring. And so I want to say that. I also want to say that there's no one right or wrong way to handle this, that you're doing a lot.

Give yourself credit for what you are doing. You're juggling a lot during this time. I'd encourage you to try to seek, to lean on your support system.

I recognize that really looks different from person to person but see what you can do to bring others into this experience so that if you feel like you're going through it alone, you are less alone.

[44:48] Leaning on your support system to come in and do some of the practical things around the house that they can do.

There might not be some things that everybody can do. There might be some things that you absolutely have to do.

But can they step in and provide practical support around meals or transportation or some of your work around the house that will free you up for also getting some relaxation in or opportunities to step away from that role as a caretaker?

We all need breaks at times. And so if others can step in and help, I really encourage that for you.

And I really, you know, there's other things too, like prioritizing good sleep and getting activity. Regardless of your age, these things can be the foundational building blocks off of which we can feel better over time.

And then also just recognize that you're 100 days out, I think you said. So the experience of what people need over time really does change. Hopefully the further you get out from transplant, the less taxing some of these things can become.

I hope that's helpful to you. I really just wish you all the best with this. I know it's a lot.

[46:07] Moderator: Thank you. Next question is, can someone have symptoms of CFS before a cancer diagnosis or transplant?

Is this something you have seen before?

Dr. Nelson: So the question is, can somebody have symptoms of chronic fatigue syndrome before a transplant or CAR-T even happens? And yes, chronic fatigue syndrome is a separate kind of illness that people can come in and be diagnosed with.

So that is true. And as we've been talking about, we are seeing elevated fatigue on the average for people before transplant or CAR T.

Some of that might be because people are coming in with a preexisting symptom or illness that is contributing to fatigue already. I think that's maybe why you're asking that question.

However, we also know that oftentimes people are coming to transplant and CAR-T after going through lots of other different kinds of treatments that can be really exhausting in and of themselves.

That's another reason why we think that fatigue is elevated even before some of these treatments.

[47:21] Certainly the disease or illness that you're getting transplanted or you're getting CAR-T for may still be playing a role too. So the situation is complicated there. But yes, people may come into transplant or CAR-T dealing with CFS.

[47:43] Moderator: Okay. Next, do you have any suggestions? This person is back at work, but they're still, they're finding themselves moody and tired at work and their employers are just not understanding what they're going through or their tools they can get to, you know, share better with their employers or anything that you can suggest?

Dr. Nelson: Thank you so much for writing in with that experience. Like before, the other person that wrote in, I'm really sorry you're going through this.

The last thing you need after going through something as big as a transplant or CAR-T is to sort of get back into different roles that you have in your life and find that you're struggling in those roles and finding that people around you aren't supportive.

Thankfully, for the most part, we see that oftentimes settings are very supportive to this, but it's really hard when you are dealing with people that are unsupportive.

One thing I just recommend for you is to take care of yourself through this time. You talked about being moody and irritable.

That's naturally going to happen when you feel like the situation that you're living through isn't matching what you need to do well, right?

And so take care of yourself through that.

Find opportunities outside of the work setting to really feed your soul and support your wellbeing as much as possible.

Good, healthy sleep, getting activity, finding opportunities to connect with people who care and are supportive of you can be really helpful when you're in environments that are otherwise unsupportive.

Then, in terms of work, it really depends on your situation.

Some people feel comfortable having a direct conversation with their employer on what's going on with them.

If fatigue is a chronic symptom, you can decide whether it's appropriate for you to talk with your employer about fatigue as an ongoing symptom and how you might have certain requests or needs in the work setting to do well in that setting.

Sometimes employers can be responsive. Now, I recognize that that's not always the case.

We might not feel we're able to do that and be as direct with employers and/or we just might not have good responsiveness from them.

[50:16] And so in that case, it's really about leaning on your support system or deciding whether that works work environment is the right fit for you with all you've been through.

[50:24] And you are in the best shoes to be able to make that decision.

[50:31] But please do reach out for help and support if you need it.

[50:37] And I hope that's helpful.

[50:48] And I wish you well.

Moderator:

[50:55] Thank you.

[51:02] Next question is, someone has mentioned the use of Vyvanse to help with fatigue.

[51:02] They said that someone had mentioned in the talk last year about Vyvanse for chronic fatigue.

[51:02] And this person is wondering if there are any studies being done on the use of Vyvanse and chronic fatigue now, or will there be,

[51:08] or what are your thoughts on that?

Dr. Nelson:

[51:17] So Vyvanse is a stimulant medication.

[51:26] I'm not familiar with any studies that have specifically used Vyvanse in transplant or CAR T setting.

[51:26] In general, medications for fatigue management have largely been pretty disappointing.

[51:31] They generally tend to show no great effects.

[51:39] We tend to use them not as a first line approach to fatigue management.

[51:44] We tend to try to prioritize some of these behavioral things because research has shown that these tend to have much larger effects on improving fatigue over time.

[51:50] But sometimes medications are prescribed.

[51:53] Stimulant medications are one category that patients that are often being prescribed around this issue, particularly for refractory fatigue, right?

[52:04] When you go through some of these behavioral strategies and they're just not helping, then they might try stimulant medications like methylphenidate or Vyvanse.

[52:17] The other medication that people sometimes try is bupropion, which is also known as Wellbutrin.

[52:25] So that's another medication that is sometimes considered.

[52:31] I hope that helps.

[52:31] And I'm sorry, I don't know of any data on Vyvanse specifically.

Moderator:

[52:37] That's okay.

[52:38] That's why we ask.

[52:38] That's good.

[52:38] This person wants to know if there is a correlation between

[52:45] chronic fatigue and chronic GVHD.

Dr. Nelson:

[52:55] Yes, yes, absolutely.

[53:03] Fatigue is an incredibly common symptom with chronic graft-versus-host disease.

[53:10] That's because the donor cells are attacking your tissues throughout the body.

[53:18] And that's causing a lot of inflammation.

[53:25] As we talked about at part of the talk, inflammation is highly related to fatigue.

[53:29] And so, yes, there's a strong relationship there.

[53:36] Chronic fatigue can, you know, sometimes it clears up.

[53:36] Sometimes it lasts for a long time.

[53:36] Sometimes people go through periods of flares.

[53:36] But using some of the strategies we're talking about will hopefully be helpful in managing that fatigue through however long you're experiencing chronic GVHD.

[53:36] So I hope that helps.

[53:36] And great question.

Moderator:

[53:45] Thank you.

[53:53] All right.

[54:00] Let's see what we got here next.

[54:06] This person is 15 years out of an auto transplant and they have fatigue daily, but intermittently it's extra bad and they really have trouble functioning.

[54:06] They're asking if this is common and if you have any suggestions for living with it, for example, like planning and a commitment.

Dr. Nelson:

[54:06] Yeah.

[54:06] Thank you for the question

[54:13] and sharing your experience.

[54:19] Even 15 years after auto allogeneic transplant, people can still experience fatigue is a chronic symptom.

[54:25] It is common.

[54:32] That's exactly why we were sharing some data around this.

[54:40] It can become a long-term, many symptoms, many years later, or even decades later.

[54:46] And so some of the strategies to deal with it are some of the things that I was talking about through the talk.

[54:46] You can try tracking your symptoms, like I said, to try to see if you notice any patterns on what's actually impacting fatigue on a daily basis for you.

[54:52] For some people, they might have a sleep issue that's really highly contributing years out from transplant or CAR-T.

[54:59] For other people, they might be really in that activity pattern that we were talking about with the really high highs of activity and then the low lows, or they might be dealing with just very low activity persistently.

[55:06] Some of the strategies around activity management, the activity pacing, the sort of slowly and gradually increasing your activities, these are things that can be helpful but are really dependent on what's affecting fatigue for you that far out.

[55:10] So I hope you can, and if you want, this talk is being recorded, so you can also come back and re-listen to this talk and take another look at what might be most relevant for you now.

[55:47] Again, if you need more guidance, I'd encourage you to think about reaching out to a specialist, whether that makes sense for you.

[55:53] Psychologists like me do cognitive behavioral therapy for fatigue.

[55:59] There's also exercise physiologists that can support you in increasing your activity levels.

[56:05] So there's lots here that might be useful.

Moderator:

[56:10] okay great and this is going to have to be our last question we're running out of time this person is writing about how the brain rewires itself to protect itself after trauma and they said they had a lot of brain fighting and they've been working on it and they want to know if chronic fatigue plays into this brain fighting aspect of engaging in things that they want to do. They're having trouble reengaging.

Dr. Nelson:

[56:45] I'm not sure that I completely understand the question.

[56:45] Brain fighting is sort of the trauma of going through transplant and CAR-T.

[56:55] Or just kind of, one thing I will say is that there can be a lot of cognitive issues after transplant and CAR-T.

[57:01] And in fact, there was a talk on this, I think a couple days ago, through the symposium.

[57:07] Hopefully that's helpful.

[57:07] Also, there's emotional issues that can come up.

[57:15] And frankly, going through transplant or CAR T can be a traumatic experience, right?

[57:19] There's lots of things that are stressful about that.

[57:28] Supporting your emotional well-being and cognitive health are all really important.

[57:34] Hopefully you can take away some strategies from the cognitive talk.

[57:40]  I did have a slide on sort of stress and emotional well-being, you know, things like being connected with others or potentially working with a psychologist on if you're feeling like your stress response is kind of chronically activated and you're not finding a good way to kind of dampen that and be able to live your life, then that can be an important thing too.

[57:47] I'm not sure if I fully answered your question.

[57:53]  I would love to talk to you more.

[57:58] It's a great question.

[58:04] I just, I wish I could have a discussion with you to better understand where exactly you're hoping to get information, but I hope that was helpful.

Moderator:

[58:16] Thank you, Dr. Nelson.

[58:16] I think that you did a good job with that one.

[58:21] On that note, thank you for this excellent presentation and thank you to the audience for the wonderful questions.

[58:27] On behalf of BMT InfoNet and our partners, we appreciate joining us today.

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