Exercise to Improve Fatigue, Stamina and Strength

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Exercise to Improve Fatigue, Stamina and Strength

Tuesday, April 20, 2021

Presenters: Scott Kramer PT, DPT, Board Certified Specialist in Oncologic Physical Therapy, University of Kansas Health System • Erin Sweetser PT, DPT, Physical Therapist, Huntsman Cancer Institute and University of Utah Health

Presentation is 27 minutes long with 26 minutes of Q & A.

Summary:  Cancer-related fatigue affects up to 80% of cancer survivors. Exercise is the best “medicine” and can resolve many symptoms of fatigue. This presentation provides detailed advice on how transplant recipients can use exercise to improve their quality of life.

Highlights:

• Cancer-related fatigue can be overwhelming and unpredictable. It is more severe and more distressing than routine fatigue, is not proportional to the activity that caused it, and interferes with regular daily functioning.
• Transplant recipients often experience weight loss, loss of muscle mass, and extensive deconditioning. These individuals should start with simple, easy exercises and gradually increase the extent and intensity of exercise as they regain functional capacities.
• Cancer survivors should focus on three types of exercise: aerobic exercise, strength training, and increasing flexibility. The recommended guidelines are 150 minutes a week for moderate intensity exercise or 75 minutes a week of vigorous intensity exercise.

Key Points:

(04:57) Cancer-related fatigue can arise from cancer itself, common cancer treatments, or pre-existing health conditions.

(05:19) Fatigue can improve with better nutrition, improved sleep, and exercise. 

(08:27) Improving diet and staying hydrated help with fatigue. Look for foods that are good sources of calories, protein, and fiber.

(10:03) Graft-versus-host disease and its treatments can increase fatigue. Steroids in particular can contribute to problems with fatigue.

(13:25) Exercise decreases fatigue by improving heart function and breathing efficiency.

(16:56) Exercise can also improve cognitive functioning – memory, attention, organization.

(19:05): Yoga and stretching can improve joint areas impacted by GVHD.

(19:41) Strength training and aerobic improvement can help with chronic GVHD.

(24:46) If you experience shortness of breath, chest pain, nausea, and lightheadedness while exercising, these are “red flags” that you should modify your exercise routine.

(26:20) Finding a strategy to stay motivated to exercise is important.

Transcript of Presentation:

Note: In this presentation the speakers sometimes use the terms “BMT” or” bone marrow transplant”. For purposes of this presentation, both of those terms also apply to patients who have been through a stem cell transplant.

(00:00) [Sue Stewart]      Introduction.  Hello, and welcome to the workshop Exercise to Improve Your Fatigue, Stamina, and Strength. My name is Sue Stewart, and I will be your moderator today.

(00:10) It's my pleasure to introduce to you our speakers today, Scott Kramer and Erin Sweetser. Scott Kramer is a board-certified specialist in oncologic physical therapy at the University of Kansas Hospital. He works with patients before and after transplant and prepares them for their home discharge. He has a particular interest in helping patients with graft-versus-host disease understand how to use a safe exercise plan so that they can maintain strength and endurance after transplant.

(00:44) Erin Sweetser is a physical therapist at the Huntsman Cancer Institute at the University of Utah. She works in the bone marrow transplant clinic providing patient-centered physical therapy before and after transplant. Her goal is to help patients return to their pre-transplant level of function and improve their quality of life through movement and exercise. Please join me in welcoming Mr. Kramer and Ms. Sweetser.

(01:23) [Scott Kramer]     Overview of talk. Thank you, Sue. Thank you BMT InfoNet. I really want to show my appreciation for this great organization. On behalf of Erin and I, we are very excited to be here and to present today. We hope that you, the audience, can really gather some great information from our presentation and our topic today. I hope that you can take something from our presentation that you can insert into your daily routine to hopefully improve your fatigue, your stamina, or your strength. I lastly want to thank our transplant survivors that are in attendance today, including any of my patients or friends from KU that may be here today. I appreciate you taking time out of your day to be here.

(02:12) Just as a quick advertisement, we're talking about fatigue and exercise today, but there is a class on fatigue on Thursday as well at 11:00 A.M. That may be helpful for the audience as well. So if you're looking into that, definitely come back on Thursday for another class on fatigue.

(02:40) But today, we're going to go through several things. We're going to discuss fatigue, we're going to talk about what helps fatigue, activities or limitations from your bone marrow transplant or stem cell transplant. We're going to talk about exercise and fatigue, how nutrition can improve fatigue. We'll talk a little bit about graft-versus-host disease. We're not going to spend a whole lot of time on it. In years past during this conference, we'd all get up together in a circle and do exercises together, but we are going to go over some exercises that you can do at home, and even talk about maybe a few graft-versus-host disease exercises.

 (03:17) I'm going to move forward to our next slide. We're going to get into bone marrow transplant and what cancer fatigue and cancer-related and treatment-related fatigue is.

(03:31) Cancer-related fatigue can be overwhelming and affects up to 80% of cancer survivors. Cancer-related fatigue is defined by American Cancer Society as: fatigue, it's worse than everyday fatigue. It lasts longer and 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 it often hits without warning. Everyday activities, talking on the phone, shopping, even lifting a fork to eat, can be overwhelming.

(04:02) Other definitions of cancer-related fatigue from the National Comprehensive Cancer Network: distressing, 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 usual functioning. It's reported more frequently than any other physical symptom of cancer and cancer treatment. It affects 70-80% 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 less likely to be relieved by rest. Fatigue can strike at any time and for any reason. Not all patients experience fatigue equally. Fatigue can be the sequelae of multiple issues that occur before, during, or after transplant.

(04:57) Cancer-related fatigue can arise from cancer itself, common cancer treatments, or pre-existing health conditions. What are some things that can cause cancer-related fatigue? There can be side effects of many common cancer treatments, such as chemotherapy, radiation, surgery, stem cell transplant, the cancer process itself, and any other pre-existing health conditions.

(05:19) Fatigue can improve with better nutrition, improved sleep, and exercise.  So in this next slide, we've created what we call a fatigue cycle, but and while it's presented as cycle, it can really rotate both ways. I would really encourage you to almost look at it more like a spiderweb where all components can impact any of the other components. For instance, any of these components can improve fatigue and hopefully eliminate fatigue. What can be fatiguing on you is if you try to take care of all of them at the same time.

(05:51) Patients should pick one area to work on at a time. One of the things I encourage my patients to do is to try to pick one of these items, whether it be work on your sleep habits, work on your activity or your exercise levels, or work on improving your nutrition intake. As you start to work on one thing, the hope is that it will improve others. For instance, if you begin to get a more normalized diet and good healthy nutrition, hopefully that will help with improving energy, and hopefully it'll improve ... Research shows it can improve your sleep patterns.

(06:27) Folks that have a lot of fatigue and feel like they should sleep all day, try more so to schedule naps and schedule when you lay down to rest or to sleep. Don't allow your body to be in a constant state of rest or constant state of sleep so that you can improve your activity. Hopefully by starting an exercise routine or activity schedule, that will improve not only your energy levels, but also hope to build an appetite for nutrition and also hopefully help with your sleep at the end of the day.

(07:02) Re-establishing a daily schedule of activities is helpful. For all my patients, I'll draw this up on the board and I challenge them all: start somewhere. Pick one of these things. Don't pick all of them. Pick one of these things, and try to create a schedule, try to create some routine. By doing that, it gives you, the survivor, control over your day and over your schedule. Do you really have routine or schedule in your life? Prior to transplant, you usually had a daily flow, whether it would be going to work or family activities, you had some form of schedule. By kind of looking at this and creating that schedule, you kind of find ... You create that new normal for you and you find some of that flow back, and hopefully, that will help with improving some of that fatigue that you're experiencing.

(07:52) Balancing activities and practicing mindfulness helps. So, a few things. We kind of already highlighted this in the previous slide. They can improve fatigue with diet, exercise, everyday activities. You want to balance your rest and your activities, so you don't want to do everything all at once. You want to try to maybe space things out, do things in moderation. Also, I'm looking into mindfulness activities such as meditation, prayer, and music. Speaking of mindfulness, there's also a class on Wednesday on mindfulness at 2:45 if anyone is interested in that.

(08:27) Improving diet and staying hydrated help. When it gets to fatigue and diet, you want to look into choosing foods that have good sources of calories, protein, and fiber. You may need to modify your meals so that they're smaller, but maybe more frequent, so not as long distance in between. In terms of fiber, you want to increase that fiber by 30 grams a day. You want to decrease all the added sugars. It might be helpful to stock at home easy-to-prepare meals. Creating a meal can be fatiguing, so maybe it's helpful to use a day during the week to do meal prep, or to just have meals that are already prepared and you just have to heat them up. Try to stay hydrated, keeping good hydration in your body, and adequate hydration will help as well. But honestly, it's very helpful to look into speaking with a local dietitian to improve your nutritional intake and getting a plan that's right for you.

(09:30) Everyday activities are often difficult when you go into bone marrow transplant recovery. Simple activities such as standing up from a chair, walking in the grocery store, climbing stairs. These what seem to be ...Even getting out of a car, what seems to be simple activities become challenging. So, what other limitations have you noticed, as survivors, and are you currently experiencing fatigue?

(10:03) Graft-versus-host disease and its treatments can increase fatigue. Moving a little bit into GVHD, and today we're not spending a ton of time on GVHD just because we want to focus more on the fatigue and exercise components. But many survivors that have undergone an allogeneic transplant may experience graft-versus-host disease. There's two forms, you have acute, and you have chronic. Acute graft-versus-host, things that can increase that fatigue is the increase in taking steroids to treat graft-versus-host. It increases muscle weakness. Steroids can make a person retain fluid, making their limbs feel heavier or tight, which can make it more difficult to move. Also, skin and GI issues can increase fatigue. A patient is having skin areas where skin might be very painful or tight as well, or GI where increased frequency of going to the bathroom can be very fatiguing on a person.

(10:59) With chronic GVHD, we also see some skin tightness there. Extreme fatigue or weakness from a chronic, maybe, treatment or use of steroids for the GVHD. Some patients may see vision changes, or have vision changes that can impact their activity levels, increasing their fatigue.

(11:19) We're going to move into the exercise component. Again, I'm going to throw another question out at you, and this one is: which of the following options have you found most helpful in decreasing your fatigue? Select all that apply. Your options are: sleep, exercise or activity, nutrition, reading, music, relaxation, or nothing I've tried reduced my fatigue. I'm sending that question out to everyone. Again, please feel free to respond. As we move through our exercises, we're going to talk about some research, as well as some guidelines in terms of how much you should exercise and what exercises are safe. Then we'll even go through some pictures of exercises that are fairly simple to perform from home and safe for you to do.

(12:08) Exercise components include aerobic exercise, strength training, and increasing flexibility. When it comes to fatigue and exercises, there's been a bunch of research. In a review from 2018, with over 170 research articles, found that exercise helps to reduce fatigue after bone marrow transplant. You should focus on the three categories of aerobic, meaning exercises such as walking, or running, or cardiovascular endurance. Resistance, where you're working on strength training, and then flexibility, stretching your muscles. These are the three categories to look at. We're going to go further into detail on these categories shortly when Erin takes over.

(12:45) Recommended guidelines for exercise. When you look at the graph or the chart here though, you do see recommendations. What it's saying is looking to get 150 minutes a week of moderate intensity, or 75 minutes a week of vigorous intensity, when it comes to aerobic capacity. When we look at resistance, two days a week where you're doing 10-15 repetitions of major muscle groups with resistance training, whether that's using bands, whether that's using body weights, you can safely use dumb bells. Then stretching your major muscle groups on days when you're not doing the others.

(13:25) Evidence shows exercise decreases fatigue by improving heart function and breathing efficiency. Evidence of exercises benefits post-transplant. Evidence shows that it decreases fatigue. You can improve your heart function, which ultimately, if you have a more efficient heart, you are going to decrease your fatigue with activity, meaning you're not going to be as tired as quickly. If you got up to walk to the kitchen, you may not feel as fatigued with that.

(13:48) Exercises should help with building muscle mass, improves strength. To perform your activities, it will hopefully decrease the amount of fatigue you feel to do those activities. Improves breathing efficiency. Again, if you are short of breath, hopefully your heart rate is not going up as much and you're less fatigued with those activity. Exercises can improve your quality of life. It can also help to reduce length of stay if you're to return to the hospital post-transplant if you've been exercising and maintaining your strength. Hopefully, that will help you to discharge from the hospital quickly.

(14:30) Exercise helps prevent several kinds of cancer. This is another table quickly on the effects of exercise on health-related outcomes in those with cancer. More recently, the American College of Sports Medicine had a round table and found that exercises have been shown to aid in prevention of seven common cancers, those being bladder, breast, colon, endometrial, esophageal, kidney, and stomach. But while it's showing prevention of those, there's also implications that say by being more physically active, we can help to hopefully prevent cancer, but also reduce any of the signs or symptoms, or the consequences, after cancer as well. Physical activity guidelines, again, were recommending 150 minutes per week of aerobic exercise and two times a week of strength training.

(15:24) I'm going to hand it now over to Erin. She's going to further into the exercise interventions before we open up for questions.

(15:32) [Erin Sweetser]      Hello. Thank you, Scott. That was an awesome segue. Scott mentioned the different kind of modalities of exercise. Most of us are pretty familiar with these, but I always think it's helpful to review.

(15:51) All forms of exercise can benefit cancer patients. You can see on this slide, I'm not going to read through every single part, but we have different goals with our exercise. We have aerobic, we have resistance or strengthening, we even have balance, and we also have stretching. All these different types of exercises focus on different things and are useful for different parts of your transplant recovery. Of course, we have walking as the most common form of aerobic exercise that we have a lot of our transplant patients do. Then we also have weight lifting, which I don't love that term because it sounds kind of intense. I prefer resistance training. It's a little bit more accessible to people. You have yoga, which can be great for the mindfulness benefits, as well as stretching and strengthening. Swimming, although a lot of our patients aren't able to do that early after transplant. We also, at least at my hospital, we provide recumbent bicycles for our patients during our in-patient stay.

(16:56) Exercise can help with late effects after transplant and improve cognition. So, all these things are great. Most of these are aerobic activity, and then you have your strength training. I listened to a couple talks by one of my colleagues, Dr. Catherine Lee, and then a talk about cognitive effects of transplant. All of these things mentioned, the best way to deal with the late effects of transplant and some of the cognitive effects is actually exercise. It's highly evidence-based, so it's kind of cool to listen to their talks and then come into our talk today.

(17:28) I work in out-patient BMT. I'm very lucky because I get to work with patients for a very long period of time, and I get to know them really well. I hear a lot of common reasons patients don't exercise, and I completely understand them. When I see patients right after transplant, they feel awful. They've just come out of the hospital. They are just trying to get through their day-to-day. They are fatigued already, so they feel like it makes them more tired. Then they also get some soreness after.

(18:03) My talks to patients right after transplant is just talking about functional activity and how to start to incorporate exercise into your daily routine after transplant. These are some of the reasons all ... Those of you who are patients are probably very familiar with this. It's really hard to motivate. You feel crummy already. You're not really sure what to do. You're not sure what's safe. The good thing is in this talk today, we're going to actually go into some really great, simple things that anyone can do and should be appropriate to do wherever you are in your transplant course. But I just want you to know we understand these things, and this is kind of the crux of what Scott and I do, is trying to figure out what are the barriers to activity and exercise, and how can we help you overcome those. So, we deal with this a lot in our daily work with transplant patients.

(19:05): Yoga and stretching can improve joint areas impacted by GVHD. Scott briefly touched on GVHD. Again, this isn't going to be a big focus of it, but we know that yoga is so helpful, stretching based on the problem areas you're having. Most of my patients, I feel like it's wrist and upper extremity, trunk, knee and ankle, so it kind of affects the joint areas. I find a lot of my patients come in and have already figured out really great ways to stretch. I always tell people, "Feels like you're getting a stretch. It's probably decent." You kind of just have to figure out what works for you.

(19:41) Strength training and aerobic improvement can help with chronic GVHD. We also know that strengthening and aerobic improvement is helpful for chronic GVHD, especially based on which areas of the body are affected by your GVHD. I send a lot of my ... I'm not a hand therapist, but I do send a lot of patients to hand therapy for night splints and things like that. That's also something that people may not consider, but there's really great resources out there for our patients that can really make a difference and improve your quality of life, with the hand therapist.

(20:17) This slide you can see, it says "see exercise sheets." When you guys are done with this talk today, what you can do is you can go to this link. You can find the slides and the program materials. Go to this link, U of Utah Health, and then it has this access code, you do have to capitalize it. That will take you to a site that's going to have all the exercises that we're about to cover. It's really great because we're going to cover them fairly quickly today to leave room for questions, but this site will have videos of those exercises. I use this daily with my patients, and it's a wonderful resource. I do think we already had a question asking about videos, so for that person, this is ... Have your husband look at this.

(21:06) Sit to stand exercises are simple but effective in strengthening many muscle groups. Okay. Now we're basically just going to go through some exercises that Scott and I both use really frequently in our practice as physical therapists in transplant settings. This is my number one favorite exercise. It's called a sit to stand exercise. I tell my patients if you do nothing else, do this exercise. Sit to stand is exactly what it sounds. It's getting off the toilet, it's getting off the chair. We know that average people go about 45 times a day ... Not go to the bathroom, but get in and out of a chair, or in and out of the sit to standing position. So by increasing that or adding that intentionally into your day, you can really gain some functional strength. I especially have my GVHD patients on high dose steroids doing this exercise.

(21:57) You can see that picture here. This also, this exercise, it's going to help strengthen your glutes, your quads, and actually, even your core muscles. This patient in the activity, she's not using her arms, but some of my patients do need their arms, so you can push off with one or two arms. The goal is to try to use your glutes and your quads as much as you can. You want to make sure you're in a safe position so that your chair isn't moving or anything like that.

(22:41) Marching in place also activates multiple muscle groups. The next one is marching in place. Again, this is a really great exercise because I try to make my exercises really functional, and also make them so that they get multiple muscle groups. I don't love, for example, a bicep curl because it just gets one group of muscles. But this, marching in place, you're going to have some core activation, some hip flexors, some quad, and also it helps with balance. You can see the gentleman here. He's got something to hold onto. You're going to be very slowly lifting your knees up and trying to really maintain your posture and make sure your abs are tightened. Then you alternate legs, so you kind of work on the balance component. You can do this without support, or you can also do it at a counter if you need double hand support. But all of these are going to be on that link to the MedBridge site, so be sure to check that out when we're done here today.

(23:39) Step-ups help in navigating stairs. Okay, step-ups. Lots of people come to me every day and struggle with stairs. Stairs are really hard. This can be a very functional activity as well. It helps you access your home. This is ... You're going to be on your bottom step of your staircase. You can use the railing if you need to. You're going to step up onto the step, and you're really going to try and drive up and power that strength up. Then go back down and repeat on the opposite leg.

(24:12) Gradually increasing a walking routine is beneficial. Okay. I'm going to try and kind of go through these quickly because you guys have the link. The other thing we talk about is starting a walking routine. You want to just gradually try to increase that walking. You might start just ... We have a slide in a minute that will show you how to increase, so these are great to look back on after the talk. You want to have someone with you, try to choose a flat route, and try to just gradually increase your walk. You might just start out five minutes, and that's okay.

(24:46) Some reactions to exercise are red flags meaning you should reduce your activity. I always talk about this with my patients, so kind of the red flag signs. If you're having any of these symptoms, shortness of breath, chest pain, nausea, lightheadedness, or if you know that your blood counts are not appropriate for activity, which can be the case. You can also just kind of be a little more cautious of your activity, but there's always something you can do.

(25:11) Walking routines should gradually increase distance, speed or time performed. This is with the walking program, how do you pace yourself? You kind of want to choose the intensity that you can maintain a conversation, but you're still pushing yourself a little bit and getting some increase in your heart rate. Then this is really key, is how to increase your walking program? You want to just be able to increase either distance or speed, or time performed. You want to just kind of bit by bit go up, so just choose one of those things. Scott mentioned this earlier with just choosing one to improve strength, or nutrition, or sleep. Same thing with the walking program, you want to just choose intensity, you want to choose increased time, or a more difficult course.

(26:02) This is a really good way of how to structure it, and I use this all the time with my patients. You start walking 10-15 minutes, and then you increase each week by about five minutes. Then the goal to make it, you can walk for 30-45 minutes.

(26:20) Finding a strategy to stay motivated is important. Strategies to stay motivated, it is very dependent on your individual desires. You're going to maybe using a Fit Bit, walking apps, having a accountability buddy, setting a goal like a 5K walk, or being able to do a certain walk in your neighborhood or on a vacation, planning ahead and kind of just making it as easy as you can for yourself.

(26:48) Okay. Sorry that I sped through that last bit, but you guys all have really good questions and we want to be able to get to as many questions as you can. If you ... There's a question that is, how do you get to the code for the exercises? If you download the slides, you just type in that address to MedBridge, and then you just enter that code in at that page and you'll be able to get to them. They all have videos attached to them.

(27:17) [Sue Stewart]       Q & A. Thank you, Scott and Erin. That was a great presentation. Actually, I'm going to go back to that slide because there were several people asking to see the address. You can copy it from here, but also if you look above the presentation, there's a tab that says resources. If you click on that, in tiny print it's got the name of this workshop. If you click on that, that's got all the slides. There's two ways to get to that information. I'll leave that up for a couple minutes just so everybody who wants to copy that down can copy that.

(27:51) So, first question is: how soon after transplant and chemo can you build muscle? Scott, do you want to take that?

(28:01) [Scott Kramer]      Sure. Everyone is always interested in when do I get my muscle back. Everyone likes to get some of their glamor muscles back as well. You can definitely begin building muscle. It's going to take time. I know there's been several questions out there as well with lost body weight. When it comes to building muscle and mass back, it starts as a slow process. You're getting through the transplant. You're getting through those first 100 days. You're building energy. You're slowly getting hopefully a little bit of just basic strength back for everyday activities. With that, you can get back into more of an exercise routine that will allow you to begin building some of that muscle.

(28:49) Part of building muscle comes with balancing nutrition as well though. That sometimes is a challenge for longer periods for some transplant survivors. To say a time frame, I have patients exercising before transplant, during transplant, after transplant. Erin will say the same thing. It's really going to be kind of a balance attack in terms of getting good nutrition, setting up a routine, getting an exercise workout routine that works for you, that's safe for you, but also challenges you over time, which will allow you to begin to build that muscle mass back.

(29:35) [Sue Stewart]      All right. Erin, perhaps you can take this question. This person developed chronic fatigue syndrome, myalgic encephalomyelitis, chronic fatigue syndrome after her auto-transplant. Crashes are often triggered by exercise for her. She says the greatest therapy doesn't work with chronic fatigue syndrome and seems to make the symptoms worse. She wants to know what you suggest to handle that.

(30:04) [Erin Sweetser]      Wow, that's a really hard question. First off, that has to be really frustrating to be dealing with that after you've already gone through a stem cell transplant. I guess, to be honest, not having treated a patient with these exact issues but having treated a lot of patients with, for example, Guillain-Barre syndrome, which we have to be really, really careful not to over-exert the patient, I would say you have to probably keep it at a very light level. You'd have to think about instead of increasing intensity, increasing frequency of activity. For example, I would recommend ... And again, I don't know what parameters you've tried. But instead of trying to increase weight, maybe doing more body weight activity or being more active every hour. So every hour having a timer set, you walk around the house for a couple laps, but then you have time to rest so that you don't over-exert.

(31:05) But that's got to be a very challenging problem. I hope that's helpful. I think the challenging thing of these type of conditions is you find that limit and you've already kind of done the damage, so it's always having to keep it very light.

(31:22) [Sue Stewart]      Thank you. Scott, I know you have an interest in GVHD, so I'll give you this one. Can scleroderma GVHD that restricts range of motion cause underlying muscles to weaken and atrophy? If so, what can you do to counter that process?

(31:41) [Scott Kramer]      I think the answer would be absolutely yes because if you're restricting range of motion and movement, then likely those muscles are not being used. If the muscles are not being used, then they're likely getting weaker. They're losing strength. How do you prevent this? How do you help this? Keep stretching, number one. If you're not stretching, start stretching. But let's look to find activities that maybe work on stretching and on strength, and that can be with just general weight-bearing. Whether it's through your arms or wrist, could you find ways to work on weight-bearing? In a modified push-up, not on the floor, but maybe against the counter or a wall where you're bearing a little weight through your arms and that's working on some strengthening, but also gently working on some stretching of that tightened skin and tissue. I think that's where I'd start. Yeah.

(32:47) [Erin Sweetser]      I also work a lot with scleroderma patients. The problem is you've likely been under a high dose steroid, so that really impairs your muscle function and it truly just melts your muscles away. All of Scott's recommendations are really helpful and essential, but also having some kind of grace with yourself and knowing that some of the systemic therapies you've been put on to help the scleroderma have really impaired your ability to build muscle mass. It is a frustrating thing for people, but just trying to work within what you can tolerate is important.

(33:24) [Sue Stewart]        All right, that's great advice. Erin, since the exercise sheet's up there with the University of Utah, maybe you can answer this question. This woman's husband can walk and sometimes do 20, 60 minutes of a stretching video. She wants to know if you have any websites about stretching that are appropriate for transplant patients that you would recommend.

(33:52) [Erin Sweetser]      Yeah, and I feel like Scott might want to chime in as well. I generally keep it pretty low tech. On YouTube, you can search gentle yoga is my favorite thing to do. But Scott, I don't know if you have anything more official as far as ...

(34:08): [Scott Kramer]      As far as exercise videos? No, I don't have any go-to. Typically with my patients, through assessment and through observation, I learn what areas may be more tight or may be more susceptible to muscle tightness and try to educate them on simple hamstring stretches. But I don't have, I guess, any go-to videos that I've sent out. But I would agree with Erin, finding ... There's videos all over online. You just have to be careful of what you choose because some of them may be more aggressive than what most are ready for.

(35:00) [Sue Stewart]      All right. This question comes from someone who I believe is getting ... Excuse me, is getting ready for transplant. The person says they're 57 years old and they lost a lot of weight from treatment. Is it possible to rebuild muscle mass after a major loss of muscle mass?

(35:19) [Scott Kramer]      Yeah. I think this kind of goes back to one of our questions from earlier. It's tough to see your body lose that much mass through this whole process. Muscle mass, weight mass, it can be regained. It just takes time, and sometimes it takes more time than most folks realize. But I do think overtime, and as I said earlier, balancing good nutrition, creating routine, and whether it be with exercise or activities of daily living, the muscle ... You may not get it back the same way. Your body type might change slightly going through transplant. It may be adjusting somewhat to a new normal, the body type. But you still want to be high functioning, and you still want to be able to do your activities of daily living, go for walks, or go back to work, and spend time with family. That can all be done, it's just you may have a new you that may take adjustment to getting used to.

(36:29) [Sue Stewart]      All right. Erin, perhaps you can answer this one. This person would like to know how to balance exercise and GVHD-related fascia inflammatory reactions to the resistance exercises?

(36:41) [Erin Sweetser]      That's a great question. This kind of fits in with a lot of things I talk to my patients about, is starting really slowly. Starting really light weights or body weight, and then seeing what your body can tolerate. Go a lot easier than you think, and then if your body tolerates that ... So let's use the example of sit to stands or kind of a mini squat. Maybe start off doing a set of five, and then okay, maybe that seems too easy, but you feel okay the next day. Then you can increase it to 10, and then maybe you can add into a couple sets of five. Then it's kind of like the parameters we do for the walking program. That could be really helpful for some of our patients who have really inflammatory conditions. Because the problem is, is if you push it too far like the person we talked with chronic fatigue, then it flares up the condition and then you sort of feel like you're back at square one. My recommendation's always to start way easier than you think you can tolerate, and then we can kind of build that bit by bit.

(37:51) [Sue Stewart]      All right. Scott, I wonder if you can handle this one. This person is concerned that if she exercises and generates heat, it will activate her GVHD. Is that possible?

(38:05) [Scott Kramer]      This is an interesting question. I've heard patients talk about heat, but I've heard them talk about worries ... concerns for GVHD by being in the direct sunlight, like the heat from direct sunlight. As far as from a ... When I look at research articles and read research articles, I haven't come across anything ... Maybe Erin can help fill me in so that we can get the best possible answer to this member. I haven't seen anything that says exercise is going to cause or activate GVHD. I almost feel like a hypocrite then if I'm sitting here telling everyone, "Hey, exercise is helpful and good for you, but it's going to cause GVHD." I haven't found any research about this, and I've looked into it and haven't found anything. But maybe Erin knows more about this and can fill in a little bit also.

(39:02) [Erin Sweetser]      Scott, I feel pretty similar to you. However, the one thing I think is important to think about is that for our patients getting sick, like getting a cold or even the flu, or COVID, or even when they get their vaccinations, that can trigger some GVHD, a little flare of GVHD. I am not saying, like Scott, that exercise can do that, but if it potentially could, I don't think it's been seen in any research. But I think like anything when you're dealing with chronic disease, you have to kind of just always be conscious of trying to increase your activity bit by bit, but not overdoing it, over-exerting it and causing some kind of flare.

(39:51) I don't ... I'm not saying it can cause a flare. I just know we know other medical conditions can cause GVHD flare, so just to be clear.

(40:00) [Sue Stewart]      All right. Great answer. Do myeloma patients who suffer ... Actually, this woman is a myeloma patient who suffers from spine and wrist injuries and wants to know what exercise can help with those?

(40:26) [Erin Sweetser]      I work with a lot of myeloma patients in our out-patient setting. I always make sure I talk to the team, the medical team, and they tell me what the stability of the fracture is that these patients have are. But from what I understand, once they start on treatment the fractures are usually fairly stable. We really advocate a lot of weight-bearing treatment to strengthen their bone health. Really the routine that we provided today is a great starting point for that, and that should be safe. You want to avoid kind of the BLTs, so the bending, lifting, twisting. But otherwise, most of the exercises we have put up here should be appropriate for that.

(41:11): [Sue Stewart]      Okay. How many ... How do you know how many reps to do when you're short of breath just doing normal activities?

(41:23) [Scott Kramer]      If normal activity is wearing you out, then that might just be what you do, normal activities. Just try to increase the frequency of those after you've caught your breath and you've been able to relax your breathing. I know there was another question on, I think, breathing and a lot of times if you're short of breath, I always encourage my patients I use the saying, "Smell the roses, blow out your birthday candles." So, breathe in through your nose, and blow out through your mouth. Try to relax your breathing, slow your breathing down doing that technique.

(41:59) But if just doing normal activity, getting up, going to the kitchen, going from bedroom to bathroom is exhausting and fatiguing, it's going to be pretty hard to then say, "I need to add exercise on top of that." That's almost too much for me. I think what the challenge would be is do that more often. Get up, go to the kitchen, sit and rest for a few minutes, catch your breath, walk back to where you came from, and start to increase that frequency.

(42:28) As that becomes less fatiguing, then you're more ready to start in with maybe the sit to stand exercise, or just a simple exercise that challenges your body and your muscles. But keep it within moderation that if you're struggling with the normal activities, I ... When I'm working with my patients, it's hard for me to throw a ton of exercises at them if we're struggling with the simple stuff. We'll work on the activities in terms of getting out of bed, or getting out of a chair. When we get good at that, then we're going to go into some of the more challenging activities.

(43:10) [Sue Stewart]      All right. Thank you. Erin, this next question is from somebody who just sounds like they're the other end of the spectrum. He said I had non-Hodgkin's lymphoma and an autologous stem cell transplant three years and three months ago. He's 71 years old and he wants to know if his fatigue is going to increase or decrease as the time passes. He plays tennis two to three times a week.

(43:38) [Erin Sweetser]     Yeah, I would say your fatigue will likely decrease. However, I always remind my patients during the process of the chemo and the transplant, you've also increased your age, or your birthday has advanced a couple years usually. So there's usually ... It's sometimes hard to separate out the normal age-related changes or age-related muscle loss or fatigue with the cancer fatigue. It sounds like you're doing some really great things with the tennis, so I would expect that you could add in a little bit more and see if your fatigue improves. Maybe not the intensity of tennis, but maybe add in more walking or activity. But I would think your fatigue would probably get better, I would say, as long as you're not having more treatment. You could expect that things will improve bit by bit. But it's very slow, just frustrating.

(44:32) [Sue Stewart]      The question was from a gentleman who was working with a physical therapist who was given some stretching exercises for pain. As he became stronger, he increased in number and duration of each stretch. However, his knees and ankles started to swell three times the size of normal, so he stopped stretching and swelling went down. He wants to know if this is common or just a coincidence. Scott, can you handle that?

(44:57) [Scott Kramer]      I can try, but I might let Erin. Honestly, that sounds coincidental? But it could be overuse as well. If you're overdoing the stretch, or overusing that joint or muscle, potentially that could cause ... It sounds like coincidental because we also don't know if there's any other medication involved at the time, fluid levels, you name it. It's hard to say to answer that exactly without putting eyes on it to see. Sorry I might not have the best answer for you.

(45:40) [Sue Stewart]      All right. Erin, maybe you can handle this question. This individuals wants to know if a person has anemia or an infection that's causing fatigue, could exercises actually make that worse?

(45:57) [Erin Sweetser]      That's a great question. I think this is the first question I'm seeing. Yeah. Anemia is a challenging one because it causes people to be pretty short of breath and it can cause dizziness. We used to be really cautious and not allow patients to exercise at all if they were anemic, but anemia is sort of a relative term in transplant. Most of our patients are a low level of anemia, and then but there's a difference if you're needing actual blood transfusion. I try to wait until after the transfusion to work with a patient.

(46:33) However, if you're having kind of anemia that your ... Let's say your hemoglobin is anywhere above seven. Exercise is actually very safe. You just have to work within what your tolerance is. We do actually ... I was just reading an article a couple weeks ago. We actually know because exercise improves blood flow, there's a possibility it could improve engraftment and improve anemia, but you have to be pretty cautious. It depends on what your signs and symptoms are.

(47:03) As far as an infection, that is a little bit more cut and dry. If you're dealing with a really acute infection where you're having a fever and you're on antibiotics, that is definitely a time that people need to be more careful with exercise. We are always kind of dealing with these things with our patients and kind of navigating it. The infections especially seems to kind of to give a really quick hit on patients, so at that time we're deferring to the medical team to try and have them address the infection. Once they're stable from that point of view and their infection's being treated, then we can start to grade up the activity up again.

(47:41) [Sue Stewart]      All right. Thanks. Scott, this is a common question, I think. This person would like to know what's the appropriate way to warm up for exercises and cool down afterwards?

(47:54) [Scott Kramer]      Some simple stuff I have patients do sometimes is just range of motion. Get the joints lubricated and warmed up. It depends on what your exercise is going to be. If you're going to go for a walk, maybe just a very light gentle stretch of your hamstrings. When you're sitting there at the edge of the bed or chair tying your shoes, can reach down, reach for your toes, stretch your hamstrings. A nice way to warm up is simple range of motion, some simple stretches.

(48:28) Then cooling down, it kind of depends on what your workout is as well. If you do go for a walk and maybe you go for a fairly brisk walk and you really get your heart rate up, your cool down could just be coming back, slower walking, taking your time, and then end with a simple, again, stretch of the hamstrings, stretch of the calf. Hydrate, make sure you get plenty of water, replenish your electrolytes as you finish your exercise routine.

(48:58) [Sue Stewart]      Great. Erin, this person wants to know what the best exercises are to do if you have COPD, chronic obstructive pulmonary disease?

(49:10) [Erin Sweetser]      I think with that, we talk a lot about pursed lip breathing, which hopefully your pulmonologist has been able to demonstrate to you. But that's a really good technique. It's called the pursed lip breathing. If you want to look it up, there's some good videos how to do it. Then aerobic activity, but really light short bouts, so maybe even just a minute or two with a little break recovering, and then a minute or two. Almost like intervals, but with decent recovery in between.

(49:44) You also want to do some stretching of your chest. A corner stretch, of course we don't have the video of this, but you're going to kind of be in the corner of your room and stretching your chest out so you can open that area up so that you can hopefully have some lung expansion. That would be my recommendation, but I think yoga could be helpful too.

(50:08) [Sue Stewart]     Thanks. Scott, this person wants to know if you don't have a staircase in your home, do you have some suggestions for what you can use, like a step-up and step-down exercise?

(50:19) [Scott Kramer]      Yeah. If you don't have a staircase, you could do a couple things. Say you have a wide board, such as a two by 10, you could use that or a cinder block. If you've got a very thick book that you're not reading and you can stick it against the wall, you could use that. I'm trying to think of some other simple things that may be around the house ... You don't want to just use anything that could slide though. You want to be really cautious about that.

(50:55) To pair this, there's another question about how high your step ups should be, and I'm going to pair up quickly just to help that question as well. Any step up is helpful. The higher you go with your steps, the stool or whatever source, the harder and the more challenging the exercise will be. So if you're just starting this and trying to start step ups, you may want to start with a lower height, and maybe that is just a simple two by 10 that's sitting there. Or if your steps are relatively low, two to four inch step is probably a safe way to start. Then you can work your way up from there.

(51:39) [Sue Stewart]      Great, thank you. This one has to be our last question because we're running out of time. This individual said they tend to hold their breath when they exercise and wants to know if we have some tips for helping her to stop doing that.

(52:00) [Scott Kramer]      Yeah. So again, I would go back to the breathing exercise that I talked about, breathing into your nose, out through your mouth. Smell the roses, blow out your birthday candles. A lot of times if you're doing a resistance exercise, as you bring that band or weight towards your body and then when you're going to push it away, as you push, push your air out with it. Then inhale when you bring it back to you to allow yourself to breathe so you don't find yourself holding your breath there as much.

(52:33) [Sue Stewart]      Great, thanks a lot.

(52:39) [Erin Sweetser]      Those meditation apps have a great a way to work on breathing that helps you kind of incorporate it into your life. Calm is really helpful, and it just gets you more aware of your breathing, and then you tend to bring that into other aspects like exercise.

(52:54) [Sue Stewart]      Closing. Great suggestion. Thank you. So with that, we're going to have to stop. I want to thank both Scott and Erin for a really helpful conversation about exercises that are safe and the benefits of having exercise after transplant. I also want to thank the audience for asking some really excellent questions.

(53:13) This will conclude our workshop for today. Thank you everybody for participating. Have a great rest of the day.