How Exercise Can Improve Fatigue, Stamina and Strength
July 11, 2020 Part of the Virtual Celebrating a Second Chance at Life Survivorship Symposium 2020
- Scott Capozza PT, MSPT, Board Certified Specialist in Oncologic Physical Therapy, Smilow Cancer Hospital Adult Survivorship Clinic at Yale Cancer Center
- Scott Kramer PT, DPT, Board Certified Specialist in Oncologic Physical Therapy, University of Kansas Health System
- Mari Taylor PT, DPT, CLT, Board Certified Clinical Specialist in Oncologic Physical Therapy, Brigham and Women’s Hospital
Presentation is 41 minutes and 17 minutes of Q&A. Download Speaker Slides
Summary: Chronic fatigue is very common after a bone marrow or stem cell transplant. Exercise can be a potent strategy to help manage cancer-related and transplant-related fatigue.
- Fatigue affects 70% to 80% of cancer survivors at all stages of disease and recovery.
- Stem cell transplant survivors can improve their fatigue through diet changes, exercise, mindfulness, and activities that allow resting while also simulating the mind like reading.
- After transplant, patients may have difficulty starting an exercise plan but by working with a physical therapist you may be able to break the cycle of fatigue and pain.
08:02 Cancer related fatigue, the most common side effect of cancer treatment, is worse than everyday fatigue because it is persistent. It makes everyday activities difficult and rest does not make it better.
10:08 Transplant patients experience fatigue as a side effect of chemotherapy, radiation, low blood cell counts, pre-existing health conditions, inactivity, poor nutrition, and lack of a daily routine..
12:59 Fatigue can make the lungs, heart and muscles work inefficiently, making t harder to do simple activities.
16:53 A good diet is an important tool in fighting fatigue.
20:06 Graft-versus-host disease (GVHD) and the steroids used to treat it can contribute to fatigue and affect your ability to do normal, everyday activities.
24:36 Aerobic exercise, along with strength training, for as little as 30 minutes a day, three times a week, can significantly reduce cancer- and stem cell transplant- related fatigue. The optimal target is 150 minutes a week of exercise.
29:07 Videos and written descriptions of specific exercises that can help recovering stem cell transplant patients overcome fatigue can be found at https://partners.medbridgego.com/access_token. Access code is XAFFPF8. The phone app to access this information is https://www.medbridgeeducation.com/medbridge-go/, same access code
28:01 An easy way to start exercising is to increase activities you are already doing, like standing from a sitting position or climbing steps several times a day.
35:20 Walking is excellent aerobic activity, but it is important to start slowly, pace yourself, listen to your body and rest if you feel cramping, nausea or shortness of breath.
40:07 It’s hard to start exercising if you’re battling fatigue after transplant. Keeping track of your daily progress and exercising with a friend can help keep you on track with your exercise program.
00:00 [Moderator] Welcome to the workshop, How Exercise Can Improve Fatigue, Stamina and Strength. My name is Michala O'Brien and I will be your moderator today. It's my pleasure to introduce you to today's speakers, Scott Capozza, Scott Kramer, and Mari Taylor.
Scott Capozza is a Board Certified Specialist in Oncological Physical Therapy at Yale New Haven's Smilow Cancer Hospital. Since 2006 he has been the physical therapist for the Adult Survivorship Clinic where he helps patients address survivorship concerns with mobility, strength, and fatigue.
Scott Kramer is a Board Certified Specialist in Oncological Physical Therapy at the University of Kansas Health System. There he works with transplant patients to develop a personalized exercise program they can safely do in their home so that they can maintain strength and endurance after transplant.
And finally, Mari Taylor is a Board Certified Clinical Specialist in Oncological Physical Therapy at Brigham and Women's Hospital in Boston. She works with patients in both the inpatient and outpatient setting, specializing in cancer-related impairments and lymphedema management.
Please join me in welcoming our experts.
01:26 [Scott Kramer] Thank you. I appreciate you intro-ing us. This is Scott Kramer from the University of Kansas Health System. I want to thank all of those that are attending this afternoon or this morning if you're out on the West Coast. It's an honor to get to present to you. I wish that we were all getting to do this in front of one another, but what a great option to still get to present, even if virtual.
I want to say a quick thank you to BMT InfoNet on behalf of all of us presenters for inviting us to speak, and to get to present this information to you. We hope that it's educational, it's informative, and you can learn a little bit about what we're talking about, or learn a little bit about this topic so it may help you with your journey after transplant. So thanks everyone, and as was mentioned, if you do have questions throughout our presentation, please put them in the comment box down below and we will address them at the end.
Also, just a note. Throughout the presentation, we will be putting in some survey questions. So when we get to specific slides, we'll be pushing forward a survey for you. When you see that come up, please answer it, and we'll be able to see some live results and we get a little bit of feedback from all the participants in the room.
One of the neat things about this is having all of you attending. It helps you to know that you're not alone. You've got people with you. You've got people out there, all across our country, across the world that have gone through similar a thing that you have. So it's good to get that feedback and to say, "Hey, if I'm experiencing it, I bet somebody else is," and you understand that you're not walking alone, you've got someone with you that can support you along your way. So with that, we're going to get started.
Today's topic we're talking about exercise and fatigue, so managing fatigue, improving your stamina and strength. We'll be talking about discussing and defining fatigue, what is it, what also ... what helps fatigue, activities, limitations from bone marrow and stem cell transplant. We're going to talk about fatigue and exercise, fatigue and diet, get some nutrition in there, not too much but a little, talk about Graft Versus Host Disease.
At the end of our session, in past years what we'd normally do is break up into sessions and actually exercise together. Feel free if you're able. You can do a little exercise at your home or wherever you're listening to this. But we're going to go through a few exercises so that you can start to implement this into your daily routine.
Surveying the audience about fatigue after stem cell transplant
04:17 Before we get going, I do want to get our first question, our first survey question out there. So I'm sending this to you, and the question is: If you've experienced fatigue during or after your transplant, how would you have rated that level of fatigue? So if you can go ahead, if you've got the ability, please give us an answer. And what we're going to do is we're going to send those results out so that you, the audience, can see what the responses are. I'll give you guys all a couple, just a few seconds there to respond. You've got four options: extreme, moderate, low, or little to none.
I want to thank all of you that are responding. It's great to get that feedback. We've got about half of our audience is saying moderate fatigue, a little under half is saying extreme fatigue. I would say that's very common. That's a fairly normal response level, especially in the settings that we work. We see patients that have a fair amount of fatigue. I'm going to continue to move on with our slides. Feel free to keep responding to that though as you're able.
Talking just a little bit about bone marrow transplant, we're not going to break up into each type of transplant individually. Autologous and allo transplants differ in their own ways, but they each do present fatigue, but just in different ways. Patients develop mouth sores, then mucositis. Chemo regimens can be a little different leading into transplant, patients to have challenge with eating or getting good nutrition. All of these can impact your fatigue levels.
Fatigue after transplant can be debilitating.
06:30 So what is fatigue? In the past we would ask you guys to pipe up and yell at us up in the front of the room what is fatigue to you. And if you feel like it, respond in the comments, define fatigue to you, what is it, what does it feel like, how was it for you when you were going through transplant or after transplant.
A lot of common responses that we've heard in the past for what fatigue is to patients, it's typically fairly debilitating, exhausting. We've heard patients that will tell us it feels like they've been hit by a ton of bricks or just they can't even motivate themselves to get up off the couch sometimes, or no matter how much they sleep, they're still tired. They could sleep all day and wake up and they're still just exhausted.
The next question I guess is what helps your fatigue? For some people it's activities or exercise. For some people, they'll say sleeping. For others, it might be getting good food in, or exercising, listening to music, reading. So think about it, to you, what helps with your fatigue, what makes you feel better?
Cancer-related fatigue is worse than everyday fatigue
08:02 So defining cancer-related fatigue from the American Cancer Society, cancer-related fatigue is worse than everyday fatigue. It lasts longer. Sleep doesn't make it better. It's unpredictable. People describe it as overwhelming, affecting every part of their lives. Another definition, fatigue is the most common side effect of cancer treatment and often hits without warring. Everyday activities like talking on the phone, shopping for groceries, even lifting a fork to eat can be overwhelming tasks.
A further description and definition of fatigue from the National Comprehensive Cancer Network, fatigue is distressing, it's persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity, and interferes with the usual functioning.
For instance, you may have done barely anything. You stood up from your bed and you walked to the living room, which, on a normal ... any day would not take any energy at all, and it's just, that's exhausting for someone. That's kind of an example of cancer-related fatigue.
Fatigue affects 70-89% of cancer survivors and is not relieved by rest.
09:20 It's reported more frequently than other physical symptoms of cancer and cancer treatments. Typically, it affects 70% to 80% of cancer survivors at all stages of disease and recovery. Compared to fatigue experienced by healthy individuals, it's more severe, it's more distressing, and it's less likely to be relieved by rest.
For a healthy individual, they work out hard or they have a hard day at work. They come home, they take a nap or they get some good rest at night and they feel energized and they go back at it the next day. For cancer-related fatigue, you don't see that same response. So it can be very challenging because you feel like you're doing the things you're supposed to, yet you're not getting the responses that you would hope to see.
What causes fatigue for stem cell transplant recipient?
10:08 So what causes cancer-related fatigue? It can be a side effect of many common cancer treatments, so chemotherapy can cause cancer-related fatigue, radiation, any surgery that you had for your treatment. Specifically speaking with stem cell transplants, just undergoing the regimen to prepare for transplant, going through the transplant and that process that you went through waiting for your counts to recover, cancer, just the diagnosis and the process of what it ... the toll on your body. Other pre-existing health conditions. Other things that will increase your cancer-related fatigue as well, especially during and after transplant. Inactivity. Sometimes with some patients sedentary lifestyle becomes more common. So that inactivity can bring on a higher level of fatigue.
Poor nutrition. For those of you that experienced mucositis or those mouth sores during transplant, it's probably safe to say you were eating less or drinking less, and that lack of nutrition brought on an increased level of fatigue. I always tell my patients you think of food for your body as gasoline is to your car. A lot of times going through transplant, it's like you're running on an eighth of a tank. And every time you fill up to an eighth, you do one activity and you're back to E. It's exhausting to just fill up to an eighth of a tank constantly all day, every day, for weeks on end.
Also, something that some folks don't realize is that lack of routine. Prior to transplant and diagnosis, you're used to going to work or taking care of your kids or being active, whether you have meet up with friends or you go to an exercise class routinely, you have that routine or that schedule. And after transplant sometimes you have a lack of routine. By changing or flipping that schedule it's just so hard to kind of create that adequate energy level that you need to get through.
Speaking of fatigue, I do want to put a little advertisement plug in here for a session coming up for BMT InfoNet later this week. It's called Fatigue and Transplant, New Insights with Dr. Kenneth Miller. That's on Monday at 12:30 Eastern Time. To kind of get more information on fatigue and transplant, make sure you check into that seminar as well, because that'll be a nice opportunity to learn more on fatigue.
Fatigue affects the lungs, heart, vasculature and muscles after a stem cell transplant
12:59 Speaking on how does fatigue affect the body. When you kind of look at the picture on this slide, we're looking at a couple different organs. We're looking at your lungs, we're looking at your heart, we're looking at your vasculature, and we're also looking at our muscles. So when you are very fatigued or you've gone through transplant, sometimes our lung performance decreases, meaning we're not as efficient with getting our oxygen in our body, as well as our heart performance. Our resting heart rate might be increased and any activity increases our heart rate higher than normal, so our heart's working harder for what would normally be a simple activity.
Sometimes because of our inactivity, we have a poor blood flow throughout our body or poor circulation. Our heart has to pump oxygen and blood to our muscles so our muscles can function at a high capacity. So if we have poor blood flow or poor vascular circulation, then the function of our muscles decreases. And if our muscles aren't functioning at their highest capacity, then we're likely not doing the activities that we would need to do on a normal everyday basis, where we're fatiguing very quickly. So those muscles are running out of their fuel source and running out of that oxygen too quickly to be able to do an activity for an elongated period of time. So this all equals in low endurance and poor tolerance for activity.
Things that affect that obviously are some of the medications that you have taken during transplant, as well as treatments post-transplant. If any of you have had to take steroids or anything after transplant, those steroids can obviously bring on muscle weakness, which brings on increased fatigue, decreased function.
How patients can manage fatigue after a stem cell transplant
15:17 Speaking of a couple things that can help to improve fatigue, and we're going to ask you a little bit more about this in a poll question later, but a couple of things and Scott Capozza is going to go further into this, but diet, exercise, just everyday activities like I mentioned a little bit ago, kind of getting that routine or that schedule in.
You have to work to balance your activities. Sometimes finding that schedule, but some patients are very used to like, "I get up early and I do all these things." Sometimes you got to spread all those activities that you're going to do out throughout the day. So your work, your play, your exercise, you got to have a nice balanced routine with that.
Also, other mindfulness activities, meditation, prayer, listening to music, reading books, these are all things that keep your mind sharp but also allow you to rest but hopefully improve the level of fatigue that you have.
With that I'm going to pass the baton to Scott Capozza, and he's going to continue talking about fatigue and ways that we can improve fatigue through activity. So Scott with that, it's all yours.
16:09 [Scott Capozza] Great. Thank you, Scott Kramer and thank you BMT InfoNet for having us and again Scott thanks for inviting Mari and I along to be a part of this presentation today. So as you were just saying, yeah, one big part of going through the bone marrow transplant process and dealing with the fatigue is your diet and your level of nutrition and how you're able to actually fuel your body at post-transplant. I don't want to get too much into it because there is a great session that's coming up on Monday, Optimizing Nutrition After Transplant. That's going to be on Monday at 3 o'clock Eastern Time.
A good diet is an important tool in managing fatigue
17:12 I know that they're going to get more into detail here, but to kind of set the stage really quickly, as you are taking care of yourselves at home and how you could think about fueling yourself, one of the things that I can point out quickly and the oncology certified dietitian that I work with, she talks about making sure that you're limiting the amount of sugar that's in your diet because that can really affect the GI tract if it's experiencing any issues post-transplant. And she points out that so often we get a lot of our calories or we can get a lot of our calories from liquids.
If you're going to Starbucks or someplace else, you're getting these grande mochaccinos. There's a lot of sugar in those things. So those aren't necessarily the best thing for anybody's system, but especially if you're post-transplant and you're experiencing some GI issues because of that. So when we talk about making sure that you're hydrated and increasing your fluid intake to at least eight cups per day, make sure that it's all quality, it doesn't have a whole lot of calories there.
Fatigue can wreak havoc with activities of daily living
18:08 So as Scott was talking about, this level of fatigue that you might be experiencing, it can really wreak havoc with what we consider, what we call activities of daily living or ADLs, so things that normally are not a big deal that you would just do without thinking about like getting up from a chair and going to the grocery store, going up and down stairs, those types of things. They all become more challenging because you're experiencing this level of fatigue.
So I wanted to, at this point, I wanted to actually pull in our next survey question which is: Are you currently experiencing any fatigue after transplant? It would be nice to know where everybody is right now as we're talking on this Saturday. Are you experiencing any levels of fatigue? I'll give everybody a second to respond to that.
As you're responding, again, I will let you know that, yes, that's what ... I think that's one of the tough parts mentally through this whole process is all these things that you're so used to doing, being able to do the laundry in your house, washing dishes, playing with your kids or playing with your grandkids, those are all your activities. That's all how of define yourself, especially if you're still working and that sort of thing. Wow, and it's a lot of you out there, almost 80% of you currently are experiencing some level of fatigue. That's a pretty significant number. Hopefully what we're talking about today is going to be able to help you guys all move forward from there.
Graft-versus-host disease can contribute to fatigue after transplant
20:06 I'm going to take just a minute to talk about graft-versus-host disease and how it affects your function. And there's really, there's two distinct phases of graft-versus-host disease. There's this acute phase. A lot of times we can see this in the first couple of weeks, following transplant. And what happens is the fatigue, this graft-versus-host disease it really affects your proximal muscles. And when we say proximal muscles, we're talking about your shoulders, your hips, and all the muscles that go along with those joints, which do so many functional things that we take for granted on a regular basis. Again, like going up and down stairs or being able to reach up in the cupboard to get a dish or something like that. Our shoulders and our hips do so much work, but they can be weakened because of the steroids that you might be taking because of the transplant. So simple things again like getting in and out of bed and getting up from a low chair or something or getting up from the floor, things that used to be easy before are a little bit more challenging.
Steroids can contribute to fatigue after transplant
21:20 But what could also come along with this increased steroid use is this fluid retention. So if your body is retaining extra fluid, you just feel heavy. Again, it feels harder to get out of bed or to get out of the chair if you're retaining all of this fluid because of the steroids. And then, one thing that we need to be mindful of also is how your skin and your GI tract can become affected by this steroid use. And the issues with when it's more of the chronic graft-versus-host disease. Sometimes we see like a binding down of the skin or we see a lot more of those GI issues, how the GI tract is becoming affected by this.
So from a therapeutic standpoint, what we might have to be doing as a physical therapist is working with you to work on the integrity of the skin and to work on the integrity of the connective tissue that is just below the layer of the skin. So you might have to work with a physical therapist to do some manual therapy to actually help loosen up some of that tight scar tissue that you're experiencing.
We're going to now get into some of the exercises and the research behind that, but before I do, I'm going to ask another question here, make sure everybody is still awake and paying attention. I wanted to find out ... I want to list a couple of options here and I wanted to know what did you find most helpful in decreasing your level of fatigue. We're going to send out a couple different options here and it would be interesting to know what have you done so far, what have you done to this point that has kind of helped with your fatigue to this point. I'll give everybody a minute to fill that out.
Well, that's encouraging to see that we have a pretty even split between exercise and sleep. And I think that that could be a whole other discussion right there, making sure we're getting good quality sleep that ... It's good to see that a lot of you have been exercising. That's really great. I won't tell the team that's doing the nutrition talk on Monday that less than 10% of you have used good nutrition, so hopefully you guys will get some good information on that day as well, but this is great. So a lot of you and over half of you have been exercising. That's really great to see.
Research shows that as little as 30 minutes of exercise a day, three times a week, can improve fatigue
24:36 I don't want to get too bogged down in the research because I want to make sure that we've got time to get to Mari because she's got all the actual practical exercises to get to, but we've been going off of these recommendations for all cancer survivors and especially somebody who's gone through a bone marrow transplant. And the goals initially were based upon the general guidelines for all Americans really. Initially they came out with these goals or these recommendations of 150 minutes a week of cardiovascular exercise, as well as some strength training and some flexibility. And over the years we've seen this explosion of research that has shown the benefits of exercise, again, for all cancer survivors and specifically for bone marrow transplant survivors.
One of the things that came out in the fall, that just came out in the fall of 2019 that we get really excited about is that this international group of representatives from all different aspects of cancer care, from the American Physical Therapy Association, from the American Society of Clinical Oncology, from the American Cancer Society, all got together, they looked at the research, and they were able to put together some very specific exercise recommendations. They were actually able to say if you are experiencing cancer-related fatigue, we have more targeted exercise recommendations for you. And they were saying that as little as 30 minutes three times a week is enough to make an effect on fatigue.
And the other interesting thing was that previously they were talking about strength training and it was kind of like a nice to have, but now this is a lot more definitive that we want you to be doing strength training twice a week because your muscles are weak because of the Graft versus Host Disease post-transplant.
So this has been really exciting for us that now we can say, "Oh, we have these very specific guidelines and very specific recommendations that we can give based on how you're presenting in front of us." And again, there's a lot of different ways that you can get your exercise. I think especially now, being able to walk in your neighborhood or to be able to go for a walk someplace that's kind of quiet is probably your best option, but obviously there are other options like swimming and cycling. Yoga, again, is great as far as that flexibility for your skin and for your connective tissue there. And again, the strength training which Mari's going to get into in a minute.
You can see that there are some reasons why patients don't necessarily exercise, and that's where working with a physical therapist helps because we can kind of break down some of these misunderstandings that we have for exercise, and making you realize that being able to move is going to help kind of break this cycle of fatigue and pain.
Yoga can help maintain flexibility and improve fatigue after a stem cell transplant
28:01 Again, as I was talking about before, the stretching, being able to maintain your flexibility is going to be very, very important. And this is really going to be a lifelong thing that you want to be able to engage in as far as doing some sort of flexibility. And I would say too that, especially now in the times that we're living in, there are options as far as being able to do yoga online. I know there's a lot of different yoga classes that are online. What I would say is that as you're doing your research on that, make sure that these classes are specific to cancer survivors, to make sure that it's not just anybody just putting up a yoga instructional video, that it's actually somebody who has experience working with cancer survivors that's giving these classes there.
And with that, I'm going to turn it over to my colleague, Mari Taylor. She is going to run you through some specific exercises that you can do at home.
Demonstration of exercises to manage fatigue after a stem cell transplant
29:07 [Mari Taylor] Thanks Scott. We have compiled a few exercises that target most major muscle groups and allow for a wide variety of ability levels. At this time normally we would break into groups and perform the exercises together, so bear with us as we have had to alter our format like everyone. We won't have time to review all of the exercises that are on our program, but you can access all the exercises along with videos of the proper way to perform and written descriptions on the above website.
To access all the exercises, you just enter the code above when you get to the website https://partners.medbridgego.com/access_token XA3FFPF8
And then there's also the option to download the app MedBridge Go for patients on your phone https://www.medbridgeeducation.com/medbridge-go/ And you can still use the access code to bring up all the exercises. I think just one thing to note is that it automatically defaults to a video format. But if you're more of a person that needs the written description, if you click on the I, in the top right hand corner of the video, it'll still bring up the written description.
Keep in mind some of the videos include use of Therabands. But don't worry, if you don't have those at home. I know a lot of us don't. You can easily adapt by using a can of soup or a water bottle, whatever you would like to use.
We thought it would be nice to highlight a few of these exercises and talk about general recommendations which I think is of most interest, but first, we have a little poll question. So at any time, let me put it out, have you seen a PT for fatigue or weakness? So I'll wait for some responses here, before we move on to the actual content.
Okay. All right. We're getting some responses in. It almost looks like an even split here between those of you that have seen a physical therapist and those of you that have not. All right. So let's get back to our content here.
Increasing activities you normally do during the day is a good way to start an exercise program
31:12 All right. I think one helpful and important way everyone can improve their strengths and endurance is to add in functional exercises throughout your day. And what we mean by that is things that you're already are doing every day. So no matter the fitness level you're currently at, incorporating functional exercises like sit to stands or step-ups can help improve your physical health.
Research shows the average healthy adult goes from sitting to standing 45 times per day. What we can all do is try to increase the amount you stand up from a seated position throughout the day. So try adding in intentional sit to stands through your daily routine, for example performing five sets of five each day.
Depending on what your mobility level you're at, you can opt to perform sit to stands or you can do a mini squat. So for a sit to stand, it's okay to use your hands to push up from the chair or armrest if you need to. You want to make sure that you're coming all the way into standing before returning to the seated or squat position. And it's important to be mindful of this especially as you fatigue. Like all of us, as you start to get tired, our form starts to break down a little bit. So whether you're performing a sit to stand or a mini squat, make sure your chair is secure behind you and isn't going to move.
Another thing that I'd like to add is that a common mistake that people make when performing a mini squat is letting their knees come too far forward over your toes as you're coming into the squat. So to target the right areas it's important to stick your bottom out, almost like you would actually be doing if you're going to sit, and be mindful that your knees are not coming forward over your toes. We have photos from the MedBridge exercises. And as you can see, she's performing a squat and on the photo on the left you can see that her knees are not over her toes which is important to know.
Marching in place is a good aerobic exercise that can also improve strength.
33:53 The next exercise we'll highlight is marching in place. It's a good idea to stand next to a table or a counter and use it for balance if you need to. But I think it's a good idea not to overuse it. I think sometimes if it's fair tempting to lean on it as you get too tired, but certainly use it for balance if you need to. And you want to slowly lift one knee up to waist level and then slowly lower it. As you're doing it, you want to also ensure that you're maintaining a nice tall posture and that you're not leaning too much to the side or forward. Try to also keep your hips level as best you can. So you alternate legs doing it 10 times on each side.
I like step ups because they're a great functional exercise. It's great because it allows for both aerobic and strength training at the same time. And if you have a training step, great, but I'm sure that most of us don't have one, you can certainly use your staircase if you want, and certainly use the railing for safety if you need to. So you want to step up onto the platform with your strongest leg first, driving upwards so that your opposite foot can raise up to the step. Slowly lower back down and repeat on the opposite leg. Work up to 10 repetitions on each leg. Again, the idea is a slow, controlled motion.
Walking is a good aerobic exercise for patients after a stem cell transplant
35:20 As we mentioned earlier, including aerobic activity into your exercise program is an important part of overall fitness. We have a few general tips for starting a walking routine. It's a good idea to start by choosing a route that's close to home or indoors even if you have a treadmill, and also it's a good idea to bring a buddy for many reasons. You want to breathe easily and you should be able to hold a conversation while exercising, which is also another good reason to have a buddy with you besides the company. It will help you determine if you're working too hard.
Finally, it's important to wear shoes that fit properly and don't tend to come off too easily or move around too much in your foot as that's not very comfortable, but it also can increase your fall risk due to the fact that it can be making you unstable or you can catch it on the ground.
Symptoms that may mean you should stop your exercise
A few things that you want to note that are really important in terms of if you should stop your activity and take a break or stop altogether. These are not always but can be signs that your heart isn't responding as well to activity as it should be, so it's important to listen to your body if you're having these symptoms. You know yourself better than anybody else.
Shortness of breath. Initially you may have some shortness of breath as you begin your walking program, but it shouldn't be significant and it shouldn't limit your activity. You should also not have a sudden change in the shortness of breath that you're having. That would be where you want to pause, take a break.
Chest pain. I think all of us probably know that is muscle cramps. Nausea. If you experience a sudden onset or change in nausea, it's important to rest. I know some of you may be struggling with ongoing nausea. So, for those managing that, you'd want to look for a sudden increase in what you're having. Faintness or lightheadedness, cold sweat, and we don't mean the normal sweat that you would have with activity. What we're talking about is more about like cold, clammy feeling. Palpitations, that fluttering feeling, excessive fatigue. If you experience these, you should let your physician know or seek medical attention.
It's important to pace yourself with a walking program
37:47 As with all your activity after a transplant, it's important that you pace yourself with your walking program. You should walk at a comfortable pace taking rest breaks if you need to. I'm sure some of you are familiar with the BORG rate of perceived exertion scale or RPE, but in case you need a little refresher, it is a scale that goes from 0 to 10, measuring how hard you feel like you're working. 0 is nothing at all, the easiest it could be. 5 is strong. 10 is very, very strong, the absolute worst it could ever be. When you're starting a workout program, it's recommended that you stay in that four to six range, that you're getting a workout but you're not overdoing it.
Again, this is completely based on your own rating, so you know your body best. If you're starting out at home and you haven't really been doing much activity lately, gradually begin your program. And as you start to feel that your current walking program is too easy, you can increase the amount of time that you're walking or speed if you're feeling well. As long as you stay in that four to six level, you're good. Remember that it's okay if you can't increase your distance or speed because of fatigue or other difficulties, and it's okay to remain at that level until you're able to comfortably progress. It's not a race.
What we have here is an example of how to pace yourself. If you are starting at being able to walk 10 to 15 minutes right now, week one you might walk for 10 to 15 minutes two to three times a day but that you have those rest breaks built in. Week two you would then maybe go to 15, 20 minutes a day. Week three, 20 to 25 minutes. And then week four, 25 to 30 minutes for two to three times a day. Again, as Scott mentioned, the overall goal is around 30 minutes a day, five to seven days a week, but research is showing that at least three times is beneficial as well. So just as is recommended to do a one to two minute warm up, you also want to do a one to two minute cool down too.
Tips for starting an exercise routine after a stem cell transplant
40:07 Some strategies to keep moving. Like anybody, it's hard to get going into a routine but especially when you're really battling this fatigue. So write it down and track your exercise. It doesn't have to be fancy. You could use a pen and paper. You could use FitBit. There is a ton of walking apps out there, too many to mention.
And then exercise with a friend, your family. They will definitely hold you accountable and I think it's also just more enjoyable to work out with some other people. Set specific goals. Most 5Ks also have a walk associated with them. If that's your goal to do a 5K, it doesn't always have to be the run.
And then plan ahead. If you built in time through your day, that will help you to set aside that time and then look at throughout your week those opportunities that you could have exercise. And even with the current times, many people are still holding room workouts or walking outside with social distancing. So there's a lot of ways that you can incorporate activity throughout the day.
That concludes our portion. We want to thank you for the honor of being here with all of you today. Our moderators will help field your questions for us.
Question and Answer Session
41:31 [Moderator] Thank you very much. That was a great presentation. Now we're going to take questions. And as a reminder, if you have a question, please type it in the chat box on the left side, lower left side of your screen.
The first question for any of our speakers, I'm going to throw it out there, is: Do you know if it's safe to exercise if you're on a steroid taper and your adrenals haven't woken up yet? Taper being below the normal 7.5 milligrams of cortisol equivalent. If I understand correctly, exercise eats up your cortisol, and I wonder if you have to be careful or wait for your adrenals to recover. Scott Kramer.
42:24 [Scott Kramer] Sure. With this, you're right, with the steroid taper, with exercise you release cortisol. You understand that correctly. But I do think it's still important to exercise. It may change the type of exercise that you're performing. So it may be something that you want to start off with more of an endurance based exercise or even repetition exercise, but maybe with lower resistance levels to it. Like we talked about with the walking program, especially with GVHD and steroid tapers what I found is repetition exercise is going to be one of the most beneficial things you can do. So something that you're doing repeatedly over and over, walking, you're taking a step over and over and over again.
And same thing with resistance exercise such as the sit and stand exercise that we had discussed or simple bed level, chair level standing exercises at a sink where you may not be adding any true resistance like a weight in your hand or resistance band, but you're going through the motions. And then as those levels improve, as the steroids maybe have been tapered all the way and you're able to increase your intensity levels, then we can look more at adding the weights, adding the intensity. Scott, Mari, if you have any additional comments to that, feel free to chime in on that also.
44:02 [Mari Taylor] I think you answered that wonderfully.
44:04 [Scott Capozza] Yeah, that was perfect.
44:07 [Moderator] All right, the next question. Mari Taylor, can physical exertion trigger GVHD, meaning doing a hard workout like cross training or heavy lifting?
44:18 [Mari Taylor] So it can't trigger GVHD to my knowledge. Certainly, it can exhaust you and maybe set you back in terms of the next day and maybe much harder to do other activity, but to my knowledge it can't trigger the GVHD. I don't know Scott and Scott you know otherwise.
44:38 [Scott Kramer] No, I would agree.
44:42 [Scott Capozza] Go ahead Scott Kramer.
44:44 [Scott Kramer] So I would say I absolutely agree. Exercise is not going to trigger your graft-versus-host disease. Remember graft-versus-host disease, it's the transplant that you received that's attacking you, the host, the body, or the body vice-versa responding to the transplant. Exercise is not making that happen. Exercise is something your body needs. Think of exercise for you right now it's just everyday activity. So you have to do everyday activity regardless of that transplant being in there. So you're not causing GVHD by exercising. And in fact, I think you're going to hopefully decrease the severity of potential GVHD by staying more active. Go ahead Scott.
45:29 [Scott Capozza] Yeah, I was just going to add to that. There's a study that came out in 2015 that said that, no, exercise does not trigger the GVHD, and it can actually benefit the GVHD. So just like you guys had just said.
The one thing that I would say, and this is what I say to all of my survivors that I talk to is, again, you want to start an exercise program slowly and progressively and build up. If you have not been exercising, we don't expect you to instantly get to that 150 minutes a week of exercise. I am not a big fan of what we call kind of these ballistic exercises where we're flipping tires and throwing sledgehammers around and that sort of thing. So again, if you're doing a slow, controlled, progressive build-up of your exercise, you're going to be fine.
46:25 [Moderator] Scott, somebody asked: Can I gain weight with a lot of protein intake and exercise?
46:32 [Scott Capozza] That's a great question and I would almost say that maybe save that question for the presentation that's going to be on Monday at 3 o'clock. But for what I know, I think again it's very individual. If you have actually lost weight through this whole process, then you might want to talk with an oncology certified dietitian about the right amount of protein that you need to be taking in, especially as you are starting to exercise because, yes, your muscles are going to need this extra protein to help rebuild itself. So you may need a slightly higher percentage of protein in your overall diet, depending on where your body is. So yeah, I would definitely, if you've been treated at a major cancer institute, they should have oncology certified dietitians there that you can reach out to.
47:36 [Moderator] Great. Scott Kramer, how do you find a physical therapist that knows about GVHD give you the most appropriate exercises?
47:47 [Scott Kramer] That's a good question. I think the three of us would agree while there's great resources out there and we're finding more and more, the three of us are all certified oncology specialists, there's a lot of physical therapists out there but not all of them have worked with patients that have undergone transplant and have GVHD. What I would first do, my first step would be to talk to your cancer center and your physicians and which helped you get through transplant, those nurse practitioners, those transplant coordinators. I think that's your first step. There are resources out there that will have information on oncology certified specialists but it's hard to say. And Scott, maybe you have a better response. Regionally where I'm at in Kansas City, there's not a lot of physical therapists that work with GVHD. So, you do have to do some homework on this actually.
48:56 [Scott Capozza] Yeah, I would agree with you. This board certification in oncology physical therapy is brand new. Scott Kramer, Mari and I are in the first class. The second class just took the test this year and they passed. So, I know that for us as a profession, we are working with other physical therapists to get them prepared and feel comfortable treating this population. But, yes, Scott Kramer to your point, to be able to, first and foremost start with your oncology team and see who they would refer out to. You can also go to the American Physical Therapy website which is apta.org and you can search for a physical therapist that way where you live and you could try to sync up that way as well.
49:52 [Moderator] Great. Mari, is there any data on how long after transplant that fatigue lasts?
50:01 [Mari Taylor] So it can extend quite some time. Certainly after a year patients are still experiencing that. It's something that typically does not go away immediately after transplant, and after you've gone home. It's something that certainly persists for quite some time, like I said, often after a year. I don't know if Scott, you want to add to that as well.
50:28 [Scott Kramer] Yeah, sure. Fatigue, and like you said, it can last extended periods of time and it really varies from person to person, and there's no great measurement of or predicting tool to say you'll have fatigue for x amount of time. I think everyone's perception of fatigue is different. It's like saying you have pain. My pain might be different than your pain, and sometimes fatigue can be similar. Your fatigue, one person's fatigue to the next person's fatigue is so different, and some people, even our survey that we had today, some people said they didn't have very much fatigue and other people said yes it was extreme, it was debilitating. And that could be frustrating for us as providers because we would love for it to be something easy to predict so that we could make you feel better and tell you the perfect answer that you want to hear, and unfortunately we don't have it to give you.
51:33 [Moderator] Scott Capozza, there's a sugar question. When you say sugar reduction, do you also mean fresh fruit?
51:39 [Scott Capozza] Oh no, no, definitely not. The dietitian that I work with at Yale New Haven, she is all about the rainbow. You need to be able to eat the rainbow, all different colors to be able to get those phytonutrients which are so important for proper nutrition, so to be able to eat something blue, to be able to eat something yellow, to be able to eat something red because all of those different colors correspond to different phytonutrients that your body needs. So absolutely, you should be eating your fruits and your vegetables, and that really should be a big portion of your diet.
52:25 [Moderator] That's great. Scott Kramer, are there any good exercises for those of us who have GVHD of the lung?
52:39 [Scott Kramer] For GVHD of the lungs I would encourage to start with more of an endurance activity such as walking. For patients that maybe walking isn't feasible there's options of like a recumbent bicycle. And for people that don't have access to that, I'm not a salesman or anything, I'm not plugging products in terms of you should buy certain ones, but there are like chair ergometers or little bitty bicycle pedals that you can put in front of a chair or a bed in which you could begin a light endurance like activity. What I would encourage is pick the number of time. So, start with five minutes and then kind of maybe start a journal that says, "Okay, I wasn't too short of breath, I felt okay," and expand from there maybe 10 minutes.
Now that's just endurance activity to improve the lungs, but maybe even a meeting with your doctor or pulmonologist to discuss ways in which to exercise your lungs, whether it be through an inspirometer or a tool like that to work on improving the efficiency and lung capacity, because just working on deep breathing exercises, so big inhalations in through your nose and out to your mouth, I always say smell the roses and blow out your birthday candles. So just working on opening up that rib cage opening up your lungs to get a nice big deep breath in and improve your capacity to hold oxygen.
54:21 [Moderator] Here's a question for Scott Capozza. What about an exercise for helping with connective tissue recovery? What would you recommend?
54:34 [Scott Capozza] So that would be probably a combination of maybe some low-level exercises like Mari was describing. Again, if you're working with a physical therapist, to start off with some of those resistance bands. Those resistance bands are color-coded so we usually start you with the yellow and we can progress you through that way.
But you may also need to work with a physical therapist to work on actually having that therapist use some manual techniques, some mobilization if you're having some tightness in your hands or in your feet, that sort of thing. Because for us to be able to actually physically get our hands on you, we can try to help release some of that tightness that you're experiencing, and then again, we can prescribe a very specific stretching program that you can follow through with, whether you're trying to stretch out your ankles or stretching out your hands or that sort of thing.
And I would also say, too, and this maybe goes back to the previous question, if you're having issues with your breathing, everything Scott Kramer said is great. I would include in that even being able to stretch out your rib cage, so kind of the classic like if you point your hands to the ceiling and then you kind of lean to one side and you lean to the other side to kind of work on opening up those ribs, that can help maybe with that lung capacity as well.
56:11 [Moderator] Great. A question for Mari-
56:15 [Scott Kramer] Sorry, I was going to add on with Scott. There was a one quick comment on, there was a question about LymphaTouch and we were talking about connective tissue and that is a modality that we spoke about last year with the GVHD conference. And while it's out there and it's being used, I don't know if there's a ton of research yet to support how it's doing. Some patients do get some relief from it. Other patients it sounds like it takes a lot of ... quite a few treatments, and you have to be very patient with it because the recovery that you get it's slow, it doesn't happen just that quickly with one treatment. And then you have to pair it with exercise, with stretching, with ... Stretchiness it's a daily thing. You have to spend hours a day doing.
So, I just wanted to address it quick because I know someone did mention that in the comment section there. So LymphaTouch is an option if someone has it available to them, but it's hardly ... it's not a quick treatment or a quick recovery from it either.
57:18 [Moderator] I'm sorry, this is Michaela O'Brien. We've got time for one more question and then we've got to end it. We're running out of time. This has been a great discussion and excellent questions coming in from our participants. This is a question regarding wearing a mask. It's two part. Is exercise while wearing a mask harmful? And secondly, can wearing a mask make chronic GVHD worse?
57:45 [Mari Taylor] I can take that one. So absolutely not, wearing a mask while exercising isn't harmful, especially while you're exercising right now, given the current situation. And then in echoing what Scott had mentioned about exercising and making GVHD worse, it's similar to that. It's not going to cause or make the GVHD worse. So definitely wear your mask. The infection risk is much more of a concern than anything that the mask can cause.
58:26 [Moderator] Well, that's great. Thank you so much. On behalf of BMT InfoNet and our partners, I would like to thank the panel for their very helpful remarks, and thank you again to the audience for your excellent questions.
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