Fighting Fatigue: Ways to Save Energy and Build Back Endurance

  Download Speaker Slides  

Fighting Fatigue: Ways to Save Energy and Build Back Endurance

Presenters:

• Chelsea Arakaki PT, DPT,  Barnes Jewish Hospital
• Corrine Kellerman OTD, OTR/L, CLT, Barnes Jewish Hospital
• Casey O'Brien MOT, OTR/L, Barnes Jewish Hospital

Presentation is 40 minutes long with 19 minutes of Q & A.

Summary:  Cancer-related fatigue can be managed, and endurance can be rebuilt. Learn about strategies to conserve energy; adaptive equipment that can help with energy conservation; and improving stamina and strength through exercises that patients can perform at home. Also learn to identify when it is appropriate to seek help from a physical or occupational therapist.

Key Points:

• Cancer-related fatigue is an unexpected tiredness that is not relieved by rest or sleep and is more intense than normal fatigue.
• The Four Ps of Energy Conservation: Planning, Prioritizing, Pacing and Positioning are easy to incorporate into a person's daily life to help manage fatigue.
• Exercise is one of the most effective ways to treat cancer-related fatigue, and can also help with depression and anxiety, sleep, appetite, immune system strength and treatment side effects.

Highlights:

(03:47): The key to managing chronic fatigue is recognizing your energy limits and knowing which activities can be avoided.

(05:37): Planning allows you to look and think ahead of each day or week to determine what tasks may require more energy than others.

(06:59): Prioritizing involves knowing what needs to be done now and what can be put off to later.

(08:46): Use an activity grid to determine which tasks need to be completed and which can be allocated to others.

(11:15): Pacing yourself – breaking tasks into smaller portions, taking breaks and giving you’re a realistic amount of time to complete tasks  - helps you get as many things done as possible without wearing yourself out.

(12:59): Positioning allows you to expend less energy to complete tasks.

(13:34): There are a lot of products and pieces of equipment that can help you to use less energy when completing activities.

(20:44): Talk to your doctor before starting an exercise program to confirm there are no health problems that limit your ability to exercise safely.

(21:27): A walking program will improve your tolerance for activity and improve your heart health.

(22:18): Use strategies to track and stick to your exercise program, like setting short-term and long-term goals or using a calendar or fitness tracker on your phone to track your progress

Transcript of Presentation

(00:01): [Susan Stewart]: Introduction of Speakers. Welcome to the workshop, “Fighting Fatigue: Ways to Save Energy and Build Back Endurance.” My name is Sue Stewart and I will be your moderator for this workshop. It's my pleasure to introduce to you today's speakers.

(00:16): Ms. Chelsea Arakaki is a physical therapist and program lead at Barnes-Jewish Hospital in St. Louis, Missouri. She has clinical experience in the acute care setting, with a current focus on oncology, surgery and ICU patients.

(00:34): Ms. Corinne Kellerman is an occupational therapist, and she's a certified lymphedema therapist as well, at Barnes-Jewish Hospital. Her clinical focus is on oncological, surgical, orthopedic and neurological populations, in both the acute and critical care units.

(00:54): Ms. Casey O’Brien is an occupational therapist, also at Barnes-Jewish Hospital, and she specializes in working with oncology, ante- and post-partum and ICU critical care patients. Her main goal is to promote the ability of each patient to access their own care and maximize independence with activities of daily living while in the hospital and after.

(01:22): Please note that some of the exercises that will be demonstrated or discussed during the presentation are for demonstration purposes only. Please consult with your doctor before beginning any exercise program. Now, please join me in welcoming Ms. Arakaki, Ms. Kellerman, and Ms. O'Brien.

(01:45): [Casey O’Brien]: Overview of Lecture. My name is Casey O’Brien and I'm an occupational therapist from Barnes-Jewish Hospital in St. Louis, Missouri. I am here with two of my colleagues, occupational therapist Dr. Corrine Kellerman and physical therapist Dr. Chelsea Arakaki. Collectively, we have several years’ experience working within the inpatient hospital system on bone marrow transplant and immunotherapy floors, specializing in lymphomas, myelomas and leukemias. Today we are going to present to you about cancer-related fatigue, how it can be managed and ways endurance can be rebuilt.

(02:25): Overview of Presentation. Our objectives include talking about the importance of pacing oneself and reserving energy for things that are most important; finding strategies one can use to conserve energy; introducing adaptive equipment that can help with energy conservation; educating on reasons exercise can improve stamina and strength; introducing exercises recovering stem cell and immunotherapy patients can perform at home to increase stamina and strength; and identifying when it is appropriate to seek help from a physical or occupational therapist.

(03:04): What is Cancer-Related Fatigue? It is an unexpected tiredness that is not relieved by rest or sleep and is more intense than normal fatigue that you may feel if you have experienced a bad night's sleep. It is rarely an isolated symptom and typically occurs with other symptoms such as depression, pain, or sleep disturbances. Cancer-related fatigue occurs in 75% of patients who have metastatic disease, as well as 70% to 100% of patients with cancer diagnoses who may have undergone any form of medical treatment.

(03:47): How Can We Manage Fatigue? Now the question is, how can we manage fatigue? Every activity we complete consumes a certain amount of energy, depending on multiple variables such as the environment, the physicality of a task, or even a patient's normal lifestyle: Are they more sedentary or are they active? So the key is to find ways to manage fatigue and this energy consumption to create a balance between what impacts fatigue and activities that need to be completed daily.

(04:20): We do this in three ways. First, by reducing use of energy. This is done by recognizing one's energy limits and knowing what activities can be avoided as a means to prevent fatigue. Examples of this include avoiding undue lifting, avoiding heat, and knowing when to defer tasks to others. Secondly, by using tools such as planners, timers, and adaptive tools to make tasks easier. And third, by incorporating activities such as walking and arm and leg strengthening as a means to build back endurance.

(05:06): The Four Ps of Energy Conservation. One tool that is easy to incorporate into a person's daily life to help manage fatigue is to use the four Ps of energy conservation. Planning, Prioritizing, Pacing, and Positioning. This tool allows you to organize your days, recognize your energy limits and know how to modify tasks in order to increase your ability to functionally complete your tasks of daily living.

(05:37): Planning. Planning allows you to look and think ahead of each day or week in order to determine what tasks may require more energy than others. This allows you to organize your day in a way that provides time for rest breaks, or even schedule your day to alternate tasks that may be more energy consuming with ones that are not. By setting a weekly calendar or a chore routine, you can set a schedule that best fits your energy levels.

(06:06): For example, knowing that infusions and most of your doctor's appointments are on Friday is knowledge that you can use to determine that Friday may not be the best day to get laundry done or to go to the store. With this knowledge, one can create a weekly chore routine. Tuesday mornings at the grocery store can be scheduled into this new routine, because it is a low traffic time at the store and you don't typically have a lot of other activities to do on Tuesdays. This concept of planning can be used during each individual task as well. Plan tasks out to ensure all tools are gathered before the activity is started. This helps to avoid having to stop and restart and can prevent extra trips to obtain things needed. Planning ahead allows one the grace to modify activities in real time.

(06:59): Prioritizing. The second P of energy conservation is “Prioritize.” Prioritizing involves knowing what needs to be done now and what can be put off to later. Prioritization of activities can change day-to-day depending on commitments and needs. But prioritizing along with that first P of planning can help a person schedule out, not just their day, but their week, to ensure that a person who experiences fatigue doesn't just complete their necessary daily tasks or needs, but allows them to reserve energy to enjoy life with quality hobbies, social engagement, or wanted rest.

(07:44): Now I'm going to introduce you to Sally. Sally is a 67-year-old white female with a medical history of diffuse large B-cell lymphoma who underwent an auto stem cell transplant in February of 2024. Sally is now three months out of her stem cell transplant and medically doing well. She has been having difficulty managing her days due to her cancer- and treatment-related fatigue. Days she has doctor's appointments she especially dreads, because the task of going to the doctor takes all of her energy, and she feels that she doesn't have the capacity to complete any other activity. So if Sally's concern is that she can't do what she wants to do, how can we incorporate the concepts of planning and prioritization to allow for Sally to maximize her energy and fight her fatigue?

(08:46): Using a Grid of Activities. One tool that may help Sally is using a grid of activities. Using a grid of activities, Sally can determine: What are her tasks that need to be completed? How long does it take to complete each individual task? And how much energy does each task take? Then she can sort those tasks into the grid to determine if the activity is a green activity: requires little energy. If the activity is yellow, requires a moderate amount of energy. Or if the activity is red, requires large amounts of energy. By filling out the grid, Sally can determine how much energy each task will take, how important is each task to complete, and what tasks can she delegate to her husband or other members of her support system.

(09:39): Today, Sally needs to go to the doctor. She has to be dressed, drive to her appointment, walk from her car to the doctor's office, make it through her testing and all of her blood work, then make the return trip home. This is a red level task. A large amount of energy is needed for this doctor's appointment. Sally also has to organize her pill box today. She can do this seated, and Sally has her medications all together. Her husband created a nice cheat sheet for her to use to fill her pill box. This is something Sally can easily do. The activity goes into the green section of her grid for activity.

(10:17): Knowing that Sally is quite a busy lady today, she can use her energy grid to plan out her day. Bathing in the morning, giving herself time to rest and maybe complete a green level energy activity, such as organizing her pill box or paying her electric bill, is something she can do until she goes to the doctor. After her appointment, she can determine what yellow or red level task needs to be completed by her, and what she can delegate.

(10:44): In this case, Sally chooses to delegate laundry, because it is very taxing and she has already completed two red level activities today: Her shower and her doctor's appointment. This allows her time to rest and then reserve her energy for making dinner. Cooking is something she enjoys. It doesn't require as much energy as the laundry, and is able to be adjusted to be an easier or more complicated recipe depending on how she's feeling.

(11:15): [Corrine Kellerman]: Pacing. Now we're going to talk about the last Two Ps of energy conservation: pacing and positioning. First, let's talk about pacing. Pacing relates to how quickly you get through your activity. In general, the key to pacing is to try and move at a slower speed and build in breaks. This will allow you to get as many things done as possible without wearing yourself out. Some ways to pace yourself include thinking about ways to break up your activities into smaller portions. For example, if I have a load of laundry to do, I might break this up into separate sections. First, loading the laundry, flipping the laundry from washer to dryer, unloading the laundry and then folding and putting away the clothing.

(12:06): Another way to pace yourself is to give yourself plenty of time to do things. Thinking about our laundry example, it would be best to give this task an entire day to spread out. That way you can split the steps up into more manageable pieces. Another way to think about this is planning to start doing laundry before you really need it done. That way, if you don't get it done that day, you can still save the rest of those steps for a better time.

(12:32): Another way to pace yourself is to provide yourself with enough time to take short, frequent rest breaks. Thinking of this example of laundry, we can easily build in breaks between steps of this activity. For example, you could plan to take a rest break after you unload laundry into the basket, but before you get ready to fold it. You should also plan to rest before you feel tired. Planning for rest breaks while you are planning out your day can help with that.

(12:59): Positioning. The last P stands for positioning. Positioning relates to how you use your body to complete your activities. The position your body is in can affect the amount of energy you spend completing activities. For example, if you're sitting for an activity, you will use less energy than if you do the same activity standing up. Think about if you were standing all day instead of sitting at your desk at work. You would be much more tired at the end of the day if you stood all day.

(13:34): Bending and reaching more than you need to can also cause fatigue and shortness of breath, so it's important to think about how your body is positioned when you're getting ready to get something done. There are a lot of products and pieces of equipment that can help you to use less energy when completing activities. These tools mostly work by changing the position you're in. Think about them as tools in your toolkit. You won't need them all the time, but on days when your fatigue is more intense, you might need them. They could also help you to save energy on days when you're not as fatigued so you can get a bit more done that you would like to do on those days.

(14:14): Mobility Devices. Now I'm going to show you some examples of this equipment. First, we have mobility devices. These are items that can help you when you are standing or moving around. Sometimes fatigue impacts your balance or the amount of time you can stand to do something. Using something like a cane, a wheelchair or a walker can help to reduce the amount of energy you're spending and may help you to stand or move around for longer. Generally, we would recommend that you work with a physical therapist to help find the right device for you if you are struggling with these sorts of things.

(14:55): Bathroom Equipment. Another category of devices would be bathroom equipment. These are all examples of equipment that could be used in the bathroom to make everyday tasks less tiring. Most of these tools help by changing your position. First, we have a grab bar. This is a bar that can be mounted in the shower or by the toilet that would provide something sturdy for you to support yourself with when you're stepping into the shower or standing up from the toilet. Next photo is a shower chair. This is a chair which can be placed in your tub or your shower to give you a place to sit when showering. By sitting down to do this, this could help your balance and also save some energy instead of standing to shower, which is typically an activity that really wears people out.

(15:41): Another tool could be a raised toilet seat. This could be placed on top of your toilet to raise the surface height of your toilet seat. Standing from lower surfaces actually takes a lot more energy than standing from higher ones, and even a couple inches difference in height can make a big difference in the amount of energy you spend every day doing these simple tasks. The last example is a handheld shower head. This could be used along with the shower seat to allow you to wash up areas that would be hard to rinse when you're sitting such as your back.

(16:10): Tools for Daily Activities. One more category of tools I wanted to discuss are tools for daily activities. These are tools that can be used in a variety of ways when you're completing your daily routine, that can help to keep you in the best position to save energy. We usually have to bend and twist a lot to do our usual routine and these tools can help with that. The first tool pictured is a reacher. This can be used to reach for items up high but can also be used to reach for things low to the ground, and this can help to avoid bending a lot for tasks. The tool can also be used to adjust the sock or help to get pants started.

(16:52): The next tool is a sock aid. This is a tool that helps to put on socks without having to bend forward. And the last device pictured is a long-handled sponge. This is a sponge on a long handle that allows for you to wash areas of your body that are hard to reach, like your feet or your back. If you aren't sure of what tools might be helpful for you, working with an occupational therapist may be helpful to identify the right equipment for your specific situation.

(17:24): So let's go back to Sally and see what tools might be helpful for her when she's completing her tasks. Looking at this grid, we know that Sally likes to cook and take baths and does not like laundry. We also might remember that based on our activities grid that Casey spoke of, Sally listed cooking as requiring a moderate level of energy. And both laundry and showering required high levels of energy. These are all activities that she wants or needs to do, but she may need to think carefully about how she can pace and position herself to get these things done without running out of energy. Building in rest breaks can help, but she might also want to use some adaptive tools to help position herself in the best way to save energy.

(18:06): Bathing. Let's break this down a little further. First, let's talk about bathing. Sally likes to take baths, but the process of stepping into a tub, sitting down in hot water and stepping back out of the tub later can be very tiring. Especially since Sally will also need to get dressed after this. Pacing can be brought in by planning to take a rest break before she gets dressed, but there are also a couple tools that would help with her position. One thing that might be helpful would be to use a shower chair to have a place to sit, as sitting down will take less energy than standing would. But also sitting on a chair would be more comfortable than sitting all the way down into a tub. A long-handled sponge would also allow you to wash areas that are hard to reach or require a lot of bending to get to.

(19:02): Cooking. Let's also look at cooking. This is an activity Sally enjoys. Some adjustments she could make would be to use a chair in the kitchen to prepare parts of the meal while sitting. For example, she could sit to measure out ingredients or to chop up items. Sally could also use a reacher to retrieve items from the cabinets that would require bending or reaching, and that would allow her to do more with the energy that she has available.

(19:32): Laundry. Our last example is doing laundry. We discussed how you could use pacing to make this activity easier, but let's talk about how you could change your position to do this as well. First, Sally could use a chair to complete parts of this activity while sitting down, such as folding or organizing the clothes. She could also use a reacher when putting items in and out of the washer and dryer. This would involve less reaching, bending and twisting, especially if she's trying to get to that last sock in the back of the washer.

 (20:05): [Chelsea Arakaki]: Treating Cancer-Related Fatigue with Exercise. Now that we have talked about ways to manage fatigue, we are going to talk about ways to treat it. The key to that is exercise. Not only is exercise one of the most effective ways to treat cancer-related fatigue, but it can also help lessen depression and anxiety, help you sleep better, strengthen your immune system, increase your appetite and reduce treatment side effects, per the American Cancer Society. An article in the Journal of Clinical Oncology by Courneya et al., found that aerobic exercise improved fatigue and quality of life, among other things, in patients with lymphoma.

(20:44): Things to Consider Before Starting an Exercise Program. Always talk to your doctor prior to starting any exercise program. Things to consider are low platelet numbers, anemia, bone metastasis, white blood cell counts, and other health conditions involving your heart or lungs. For the location, you'll want to avoid uneven surfaces like gravel and grassy fields that can make you fall. If exercising outside, avoid peak sun exposure and temperatures, and remember to always take a friend or family member with you. Always carry a mobile phone in case you need to call for help.

(21:27): Starting a Walking Program. I highly recommend starting with a walking program, as it'll improve your tolerance for activity and improve your heart health. Use a scale like the rate of perceived exertion scale as shown on the right of the slide to grade your intensity. We suggest maintaining a level of intensity between "fairly light" and "somewhat hard" on the scale. When you reach the point of being unable to talk and walk at the same time, that is your cue to then take a rest break. When you come back down on the scale to “fairly light,” you then start walking again. Use this strategy to start building up your total time of walking. You could also use a set interval like walking two minutes, then take a rest break, and repeat three to five times.

(22:18): Use strategies to track and stick to your exercise program, like setting short-term and long-term goals or using a calendar or fitness tracker on your phone to track your progress

(22:33): Strength Training. Another form of exercise that you can start at home is strength training. I will go over some examples of exercises for your arms and legs in the following slides. You will need a sturdy chair with armrests and no wheels, and lightweight or common items around the house, like water bottles, weighing one to two pounds, are optional to start with. Generally, I would recommend starting with 8 to 10 repetitions and do it two to three times for each exercise. For some people that will be hard, and it is okay to do less repetitions to start with. Or maybe you don't use the weights at all. For others, that will be too easy, so I would recommend adding weights.

 (23:19): Arm Exercises. For your arms, you can always start doing these exercises in sitting. Remember your fourth P of positioning. And then progress to standing and/or adding weights. The exercises from left to right are: Front raises, where you raise your arms up in front of you to shoulder level. Lateral raises, where you raise your arms up your sides to shoulder level. And bicep curls, where you fully bend and straighten your elbows while keeping your arms tucked to your sides.

(23:53): The last exercise to the right is the chair push-up. You will use that sturdy chair with arm rests and no wheels, starting in a sitting position. And with your body weight through your arms, you will push your body weight up off the seat until your elbows are fully straight and then slowly lower yourself back down to sitting. Keep your feet in contact with the floor at all times.

(24:18): Leg Exercises. For leg exercises, always start out with holding onto support during the exercise, like the back of that sturdy chair or a kitchen counter. From the left to the right, the exercises are: Marching, that is standing and lifting your knees up like you are marching in place. Heel raises, which are when you're coming up onto your tiptoes. And hip abduction, which is kicking your leg out to the side. You can also do the marching and heel raises in sitting to make it easier. With all these exercises, remember your four Ps of Plan, Prioritize, Pace and Position. It is totally okay to modify your pace and position each day based on your energy levels.

(25:09): Exercise Resources. If you would like to progress or need more guidance with your exercise routine, here are some resources for you. You can ask your oncologist for an outpatient physical therapy or occupational therapy referral. I recommend asking for PTs and OTs with oncology experience. And if you are immuno-compromised, ask if private treatment rooms are available at the clinic or schedule appointments during less busy times.

(25:36): There is the Live Strong at the YMCA, which is a 12-week program at a low or no cost. It does, however, require a referral from your doctor. You can go to the BMT Info Net video learning library or you can check with your local cancer centers to see if there are more resources specific to your community. Like in St. Louis, there is the Young Adult Cancer Survivors Fitness Group through the Siteman Cancer Center for ages 45 or younger.

(26:06): What’s Next? Now back to Sally. Next year, Sally wants to take her children to Hawaii. She decides she is going to start walking. She is going to put a star on her calendar in the kitchen every day she exercises to hold herself accountable. She starts by walking inside her home, going from the kitchen through to her living room and back to her bedrooms and around. She can no longer talk and walk, so she stops for a rest break in the kitchen, then starts again. She does it three more times that day, and continues to do it every day over the next few weeks. She progresses herself to walking in her neighborhood in the mornings, before the sun gets high in the sky, for 15 minutes each day.

(26:49): It has been two months now since starting her journey and Sally is feeling more energy every single day. She is ready to start the next step and decides to go to outpatient physical therapy. She now has a physical therapist she can work with to progress her exercise program over the next 12 weeks. Sally is now ready to conquer Hawaii. This concludes our presentation and we are now going to move on to questions.

Question and Answer Session

(27:17): [Susan Stewart]: Thank you very much. That was a very interesting presentation. It's now the question and answer period. Let me start with this one: Some of us also have autoimmune diseases like lupus and exercising tends to deplete our energy even more. Do you have suggestions for using energy conservation while still having a quality of life in these situations? Perhaps, Corinne, you might answer that?

(27:57): [Corrine Kellerman]: Sure. I would say in that situation you might be more heavily leaning towards thinking about how you could use these four Ps of energy conservation to help maintain your current level of independence, rather than focusing on heavily introducing exercise. And the times where you might want to try and more focus on saving energy, versus trying to build up your endurance, those might change and really fluctuate.

(28:30): But I would say if you're in a period of time where you're really struggling with energy and you know that exercise doesn't help, I would really focus on thinking about how you can use those four principles of energy conservation. So thinking about how you can use planning, pacing, prioritizing and positioning in your usual routine. So then you can focus on being able to get done those activities that you really want to be able to do.

(28:57): [Susan Stewart]: This individual is seven years post-transplant. He's 43 years old, no history of depression, and he's exercised the whole time, some years more so than others, since his transplant. He doesn't have enough energy to work and also his energy got worse two years ago after pushing himself too hard for several months. Any thoughts on how he might address this issue?

(29:27): [Chelsea Arakaki]: I think the key is to set appropriate short- and long-term goals, and understanding that if you do push yourself past... Everyone has certain limits. If you push yourself over that limit that you can set yourself back, and so you want to be mindful of pacing yourself. And being also mindful that your recovery and your strengthening will take longer than another person may. And not trying to push yourself too quickly.

(30:00): Previous exercise prescription principles won't necessarily apply to your body, and you need to kind of... I would recommend going to an outpatient physical therapist because they can taper the exercise plan to be very specific to the goals that you have. But it's also just being very mindful of your pacing with your exercise prescription.

(30:24): [Susan Stewart]: Can you please address our reluctance – that is, shame – to use tools like a cane or a walker or a raised toilet seat because it signals illness and dependence to oneself and also family members, friends and co-workers?

(30:46): [Casey O’Brien]: We see that a lot, especially when patients come into the hospital. And I think the word reluctance – I understand that, but I try and tell my patients, use it as a change of perspective. If somebody needs a walker or a raised toilet seat to give them independence, to create a source of capability, it's giving you something that you weren't able to do before. It may look a little different, but it's creating independence in a way.

(31:18): And creating it in a safe way. Just as you wouldn't put a child on a bike without a helmet, when you're getting up and you're walking and you're feeling weaker, if you need a walker in a short-term setting, it's giving you that independence to do what you wanted to do before with just a little bit of a safety net. And I think that just having the perspective of it's to help increase your independence instead of holding it back because of a disability, I think is the best way to do that.

(31:51): [Corrine Kellerman]: And actually I would like to chime in on that as well, Sue. I think there are a lot of products out there on the market that can look pretty subtle too. A good example of that is, let's say if you don't want to have a toilet raiser. If maybe you were planning on making some updates to your bathroom anyway, you could just look into installing a toilet that's naturally a taller height. Because really, taller surface heights work for everybody, and then that's a modification that no one's going to notice but it's helpful to you as well. You could also think about if you have two bathrooms in your house, you could think about keeping all the equipment that you use in your bathroom by your bedroom, and keeping it out of the guest bathroom if you want to keep that more subtle.

(32:43): [Susan Stewart]: Are there walkers that work well on uneven terrain, something that makes it easier or safe to walk in the woods for example?

(32:59): [Chelsea Arakaki]:  Sue, I'll take this question. There are actually versions of Rollator. Rollator is a brand name, but you can Google it under that term. It's basically a four-wheeled walker. There are lots of different versions of it, but I have seen patients actually utilize Rollators on uneven surfaces, going out onto grassy fields, into wooden terrain, different things like that. It just depends on the wheels on that Rollator. But the Rollator typically comes with brakes to help you slow it down on inclines and declines. It typically also has a seat and a storage basket that can be provided for seated rest breaks that you may take while you're out.

(33:51): [Susan Stewart]: How can I be sure that my lack of energy is due to fatigue or depression? In other words, how do I know what's causing my fatigue?

(34:12): [Corrine Kellerman]: That's a great question. One thing I might think about is, fatigue tends to fluctuate. You might go through – even day by day – some changes in your fatigue levels, versus if you have true depression it's more of a persistent sort of feeling. So that might be one thing that you could think about. Is this kind of coming and going or is this staying pretty steady?

(34:37): Certainly, if you are noticing that this is going on and it's going on for a while, I would definitely reach out to your doctor about it to help decide what's going on there. Those would be my initial thoughts. It's a tough question though, which I think is why it can be really hard to realize whether it is fatigue or depression, hard to separate out.

(35:02): [Susan Stewart]:: After stem cell transplant for multiple myeloma, at what stage would you recommend restarting cardio and resistance exercise for someone who was previously very fit and has been exercising for the past two months, just starting transplant? This individual is 60 years old. Chelsea, is this something you want to take?

(35:28): Chelsea Arakaki]: Yeah. After... Stem cell transplant, multiple myeloma...

(35:33): [Susan Stewart]: He's 60 years old and had an auto transplant, I presume for multiple myeloma, wants to know when it's safe to start doing cardio and resistance exercise. Was previously very fit.

(35:48): Chelsea Arakaki]: The first thing that pops into my mind is also being mindful of lab values. Things like your platelet numbers, your hemoglobin numbers. It just really depends on how those have returned after transplant. You don't want to start any type of resistive exercises with platelet numbers that are too low because that can cause other side effects like hematomas.

(36:21): I would definitely talk with your doctor to determine if your lab values and everything else treatment-wise are conducive to restarting an exercise program. And especially if you were very fit or physically active prior to transplant, outpatient physical therapy would be very, very beneficial for you. They don't even have to see you every week, or twice... Anything that frequent they can help just get you set up on a plan so that you can take that plan and then check in every month or so, just to give you that guidance of exercise prescription.

(37:01): [Susan Stewart]: This person is two years post-CAR T-cell therapy. She walks two miles every other day, but she still experiences fatigue. What recommendations would you make?

(37:17): [Casey O’Brien]:  That is common. Because of the treatment, it is common to still experience fatigue two years out, even with continuous exercise like they've been doing. What I would do is really start to schedule out your days. And even sometimes journal what you did each day and say, "How did I feel after each activity?" So knowing that bathing may be exhausting for them, and if that's the case, modify that.

(37:52): Another thing that you can consider is your nutrition. That can affect your fatigue. Are you getting enough nutrients? Are you getting enough carbohydrates and protein? That could also have an effect. But I do think that having and keeping a journal of knowing what activities are going to take as much energy out, and then being able to plan and prioritize your days with that will help.

(38:17): [Susan Stewart]: How soon after transplant would a light yoga routine be recommended?

(38:29): [Corrine Kellerman]: In general I think that's a wonderful exercise activity. I would, though – going back to Chelsea's response a little while ago – I would definitely talk to your doctor about how your lab values are doing. If your platelets are running low, probably those more resistive exercises or activities may not be the best idea to start right away. You could also think about how to modify this activity in the meantime. Looking up activities online for chair yoga might be a great way to help ease yourself back into that and help build back into that activity if that's something you enjoy.

(39:15): [Susan Stewart]: This person is a marathon runner and wants to know if you have any recommendations pre-transplant as far as exercise. Chelsea?

(39:28): [Chelsea Arakaki]: I would say you just maintain your exercise program that you are currently on up until transplant. The stronger that you can be leading into transplant, the better your body responds, the quicker you bounce back, you're not experiencing as much of a drop in your energy and strength levels. So we always recommend to be in as best physical shape as possible going into transplant. So I would say if your lab values are looking great, I would maintain that exercise program you're currently on.

(40:03): [Susan Stewart]: This gentleman raises a couple of interesting questions. He's 13 years post-transplant for acute lymphoblastic leukemia. He's on immunosuppression drugs for GVHD, which has recently gotten worse in his lungs, and he's short of breath. He has no muscle anymore. He's 77 years old and essentially wants to know is this a combination of age and GVHD, and what can he do about it – and maybe one of you might want to address pulmonary rehabilitation?

(40:43): [Casey O’Brien]: Yes, it is definitely probably a combination of aging and the GVHD. Also, the immunosuppression drugs have an effect on that as well. If that is the case, I do think the best idea would be consulting your doctor to see if you can be admitted to a pulmonary therapist who can specialize in a walking program where you are being monitored. It would be the same type of program that somebody who is post-cardiac surgery would go through, and I do think it would be beneficial in this situation as well.

(41:19): [Corrine Kellerman]: The idea of that would be to try and help improve your endurance by maybe trying to build up the distance and the time that you're spending moving and walking while also having somebody who has the specialization to keep an eye on how your oxygen is doing, how your energy is, and be able to help gradually ease you back into that, and help find what your current limits are.

(41:49): [Susan Stewart]: This person just wants to throw out a couple of suggestions. She said, “Silver Sneakers has various levels of exercise I've tried and I tend to like their stretch and Tai chi, as these do not require high energy, such as Zumba and power walking.” So just a thought there. Next person wants to know whether the exercise class is recommended at the YMCA. Have these leaders received special training for cancer survivors?

(42:22): [Chelsea Arakaki]: I apologize, I don't know the specifics in regard to the training that the leaders have. I just know that the YMCA... It varies based on your location. Certain YMCAs have the live strong program and certain ones do not. You would need to reach out to your specific YMCA that has that program to ask that question.

(42:49): [Susan Stewart]: Another comment someone made, “Please mention that if fatigue is persistent, one might consult a mental health professional in addition to consulting a medical doctor,” which is a good idea. Next question: Is there anything you can do in the hospital in terms of exercise when you've just undergone stem cell transplant – that is, for the first two to three weeks in your hospital directly after the transplant?

(43:17): [Casey O’Brien]: The biggest thing we tell everybody is, first and foremost to be out of your hospital bed as much as you can tolerate every single day. The more you are sitting up in a chair, the less muscle wasting you will experience. The other thing that we will tell patients is to be moving and walking as much as you can that is safe. So understanding that a couple days post-transplant, you may start to experience fevers or become what we call orthostatic, where your blood pressure will drop. And if that's the case, we don't want patients walking unsupervised because it can cause an increase in falls when they don't have platelet counts, it could lead to bleeding. But making sure that you are out of bed in a safe manner is just the number one thing that somebody can do.

(44:15): [Corrine Kellerman]: I'll just add one more thought in, too. There is a fair amount of research that shows that it really doesn't take long at all from being in the hospital and not moving to start to lose some muscle mass. And it can take quite a bit longer to regain that strength than it does to lose it. And you do, in general, quite a bit more moving around in your day-to-day routine at home than you do even when you're trying to move in the hospital. I couldn't say it better than what Casey has said, but just know that there is a lot of science and research to support that. So try and just move as much as you can as long as you're being safe about it.

(44:54): [Susan Stewart]: While we're on the topic of muscle wasting, this individual has muscle wasting after years of dexamethasone for myeloma. Wants to know if there's anything specific you would suggest to address this particular type of muscle loss.

(45:11): [Chelsea Arakaki]: Typically, steroids will target your proximal muscle groups, which are around your hips and your shoulders. So I would specifically utilize the exercises that I had in the previous slides that will target your shoulders and your hips. The standing exercises with the chair will be good, as well as the arm exercises with the front and lateral raises.

(45:43): [Susan Stewart]: This person wants to know whether the loss of energy is the same after CAR T-cell therapy as it is after a stem cell transplant.

(45:54): [Casey O’Brien]: Yes. Fatigue is a universal symptom. The type of fatigue, it's the same sort of feeling between both. And yeah, it tends to affect everyone – or quite a few people – anyway.

(46:11): [Susan Stewart]: This gentleman said his wife has lost a lot of independence due to the lack of physical activity and physical mobility. She has GVHD and he wonders what types of physical therapy are best for someone who's struggling with GVHD?

(46:31): [[Chelsea Arakaki]:  That is a great question. I would need to know what type of GVHD that they're experiencing because there are so many different types. If it's affecting your lungs or if it's affecting your skin, if it's affecting your GI system, you'll present with different symptoms that we need to address. So I would definitely, again, I know I've said it a couple of times, but I would recommend for that specific case going to either your doctor or your outpatient physical therapist to get a more specialized program because it really depends on what type of GVHD you have.

(47:12): [Susan Stewart]: This next person wants to know whether the strength exercises that you would recommend are different from someone who has multiple myeloma and a high risk of fractures before treatments than you would recommend to other patients.

(47:29): [Casey O’Brien]: Yes, they are going to be slightly different. Knowing with multiple myeloma they are at high risk for fracture, we would consider more what we call body weight, or light activity, as compared to somebody who may not have the lesions of the bone. Another thing to be very cautious of is when you go and see your physician, asking them when they're doing imaging, ‘is there any new lesions that I should be concerned about?’

(47:58): Because if they have a new lesion in their humerus, which is your upper arm bone, you may not want to be putting a three-pound weight when you're doing your arm raises above your head. But doing that without a weight and just using your own body weight would be okay.

(48:16): [Corrine Kellerman]: I'll add one more thought onto that, thinking about in the examples of the exercises that Chelsea went through. A very good adjustment would be to just do those movements against gravity. Don't try and add any weights into that.

(48:33): [Susan Stewart]: This is another question from someone with multiple myeloma: I struggle with back weaknesses after having three compression fractures, T-8 through T-12, prior to my auto transplant for myeloma 20 months ago. Can you recommend two to three specific exercises I could do to build back my back strength so I can stand straight?

(48:57): [Chelsea Arakaki]: I think one key thing would be to do the walking program. Because that will build your activity tolerance in general, especially your back muscles or your posture muscles. They need to have endurance training, so they need to be able to hold up over long periods of time, and that walking will provide that type of a stress.

(49:23): Another one that you could do that's not in the slides is essentially repetitive sit-to-stand. So you're going from a seated position in that sturdy chair and then you're standing up trying to get as tall as possible before sitting back down. You want to be very mindful of your posture during all of those activities.

(49:45): And honestly, even if you did any of the activities that are in the slides, you just have to be very mindful of your posture and maybe you do those exercises standing against a wall, so that way you are standing fully upright and you can feel when you're starting to slouch. Or trying to look into exercises that will help your abdominal strength or your core, which will also help strengthen up your back.

(50:15): [Susan Stewart]: Do you know how long someone can receive physical therapy if they're on traditional Medicare?

(50:27): [Casey O’Brien]: I do not know the answer to that, especially because Medicare varies so much state by state. That would be something that they would need to talk to their insurance provider about.

(50:38): [Susan Stewart]: This person is wondering whether COVID added a level of fatigue since patients were not as active. She's had CAR T-cell therapy during the past year, which has also increased fatigue.

(50:54): [Chelsea Arakaki]: COVID has definitely added another component to all of this because, yes, a lot of patients are not as physically active as they were prior. They're also a lot more isolated than they were previously. I do think there have been patients who have now sought more outdoor activities, which is a good thing. It does help their activity level in general and they're not in enclosed and confined spaces as being immunocompromised. But overall I think it has really impacted our patient population.

(51:32): [Casey O’Brien]: One other thought that I'll add to that is, at the same time, I think because a lot of people just in our society in general have struggled with fatigue after having COVID, I do think it's given a much better awareness in general where people are generally more aware of fatigue and how it can affect you, and are a little bit more understanding I think in general, just because we've had more people in the last several years that have begun having challenges with that.

(52:03): [Susan Stewart]:. Can you comment on some exercises that you could do if you're having issues with balance?

(52:16): [Casey O’Brien]: One activity that we do within the hospital that can be easily done at home is, you can work on sitting balance activities where you're sitting unsupported at the edge of the bed and just leaning to the side, going down on one elbow and then pushing yourself back up into an upright sitting position. That's one option you could do in a seated standing.

(52:42): Another thing that you could think of doing is standing in front of your kitchen counters and just reaching and grabbing items at a different height level. So above your head, in front of your face, down at counter level and down below. And also just standing and weight shifting, holding onto a counter from side to side or marching in place side to side.

(53:09): [Susan Stewart]: Are there any specialized exercise programs for older adults who have considerable osteoporosis or osteoarthritis? Is there anything available online that a person could use?

(53:35): [Chelsea Arakaki]: I honestly am not fully aware of any that are very specific to those. In general, exercise programs that involve weight-bearing. So anything that is standing or putting weight through your arms is going to help with bone density. I would be curious if programs like the Silver Sneakers would have something that is a little gentler on your bones. Like a lot of the exercise classes that are completed in chair yoga and chair Zumba and things, those are all going to be pretty gentle on your bones.

(54:19): [Susan Stewart]: We have two other questions. They're not really pertinent so much to your topic, but I'll just comment on them. One woman is asking how CAR T therapy affects driving a car. And I can tell you it's the neurotoxicity that they worry about, which is why you're prohibited from driving a car for a certain number of weeks after CAR T-cell therapy.

(55:03): I think we are out of time and I want to thank all three of you for an excellent presentation, and thank the audience for their helpful and very insightful questions. If you have any other issues that you need help with, please do contact BMT Info Net.