How Rehabilitation Medicine Can Help Patients with Graft-versus-Host Disease

Physical medicine and rehabilitation (PM&R) physicians, also known as physiatrists, can help patients find treatments for pain and physical limitations caused by graft-versus-host disease.

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How Rehabilitation Medicine Can Help Patients with Graft-versus-Host Disease

Friday, May 6, 2022


  • Megan Nelson MD, Medical Director of Cancer Rehabilitation at the University of Louisville, James Graham Brown Cancer Center
  • Ekta Gupta MD, Assistant Professor in the Department of Palliative Care, Rehabilitation and Integrative Medicine at the University of Texas MD Anderson Cancer Center

Presentation is 35 minutes long with 23 minutes of Q & A.

Summary: Graft-versus-host-disease (GVHD) can cause physical problems that interfere with a person's ability to manage daily tasks. Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, can diagnose why a person is experiencing pain or decreased physical functioning and direct them to the correct specialist to address these problems.

Many thanks to Takeda Pharmaceutical Company whose support, in part, made this presentation possible.


  • Physical medicine and rehabilitation (PM&R) physicians often refer patients with GVHD to physical, occupational and/or speech therapists who use exercise, splints, and assistive devices to improve physical functioning and relieve pain. Nutritional experts can help relieve eating problems.
  • GVHD patients who experience problems with vision, muscle weakness, stretching, bending, walking, speaking, swallowing or thinking clearly may benefit from a consultation with a PM&R physician.
  • Click here to find a PM&R physician near you.

Key Points:

(04:26): Physical therapists work to restore and maintain mobility, flexibility and strength in GVHD patients and reduce the likelihood of future problems.

(07:33): Occupational therapists focus on improving function in the hands and arms,and help GVHD patients manage day-to-day tasks and function independently.

(09:48): Speech therapists help patients who have difficulty speaking, swallowing. They can also help with some cognitive issues (the way the brain processes information).

(15:56): Sclerotic skin GVHD causes cause skin tightening, thinning, blistering, ulcers, loss of sweat glands and change in joint mobility, making it difficult to reach, bend or walk easily.

(17:05): Skin GVHD can limit the ability of hands and fingers to bend or extend, making daily tasks, like hygiene, difficult. Possible treatments include stretching, splints, steroids, photo therapy or UVB light therapy.

(19:36): Chronic GVHD in the mouth can affect eating, swallowing and speech. Speech therapists and dietitians can help address these problems.

(21:38): GVHD can affect a person’s vision and ability to drive. Occupational therapists can recommend assistive devices to help with this problem.

(23:48): Steroids used to treat chronic GVHD often cause muscle weakness. Physical and occupational therapists can help a patient regain muscle strength.

(26:10): Low blood counts can cause dizziness, fatigue and weakness, and/or increase the risk of infection or bruising. Timing and intensity of physical and occupational therapy may need to be adjusted, depending on blood counts.

(30:48): Patients with chronic GVHD should have their bone health evaluated before starting an exercise program.

Transcript of Presentation:

(00:00): [Susan Stewart] Hello, and welcome to the workshop, How Rehabilitation Medicine Can Help Patients With Graft-versus-Host Disease. My name is Sue Stewart, and I will be your moderator for today.

(00:12): Before we begin, I'd like to thank Takeda Pharmaceutical Company, whose support helped make this workshop possible.

(00:20): Introduction of Speakers. It's now my pleasure to introduce to you our speakers for today, Dr. Ekta Gupta and Dr. Megan Nelson. Dr. Gupta is an Assistant Professor in the Department of Palliative Care, Rehabilitation and Integrative Medicine at the University of Texas MD Anderson Cancer Center in Houston, Texas. She works with stem cell transplant patients, including those with graft-versus-host disease, to optimize their functioning and quality of life.

(00:51): Dr. Nelson is the Medical Director of Cancer Rehabilitation at the University of Louisville, James Graham Brown Cancer Center in Louisville, Kentucky. She works closely with the Blood Cancers Cellular Therapeutics and Transplant Program. She assists patients in both the outpatient and inpatient setting, diagnosing functional impairments and coordinating rehabilitation interventions. Please join me in welcoming Dr. Gupta and Dr. Nelson.

(01:26): [Dr. Megan Nelson]  Overview of Talk. Hello everybody. This is Dr. Nelson, and thank you Sue for that introduction, and thank you for having us here to talk about how rehab medicine incorporates with patients with graft-versus-host disease.

(01:44): So, just a brief outline of what topics we're going to address today. One, we're going to talk about the roles of the various rehabilitation providers available to patients. Then we will transition to talking about the different areas of your body that may be affected by chronic graft-versus-host disease that can directly impact function in day-to-day life. We'll talk a little bit about how steroids impact function as well, discuss exercise, the importance of exercise, as well as the precautions we need to take when we are dealing with chronic graft-versus-host disease, and also how to advocate for yourself, how to advocate for rehabilitation services to help you through the journey.

(02:37): A large network of providers help patients with day-to-day functioning including physical therapists, occupational therapists, speech therapist and nutritional therapists. Rehabilitation for graft-versus-host-disease (GVHD) involves a network of physical therapy, occupational therapy, speech therapy and nutritional therapy. So, rehabilitation providers. There are many that fall into this definition. Many of us sometimes think about rehabilitation being more physical therapy or occupational therapy. We in rehabilitation see it as a large network of providers that help patients with their day-to-day function. So, we will talk about physical therapy, occupational therapy, and speech therapy.

(03:05): But in addition to that, patients need adequate nutrition to be as functional as possible. We need good nutrition to make sure our muscles can work and our bones can be healthy.

(03:18): Rehabilitation therapy can address cognitive and emotional issues experienced by GVHD patients. The treatment of these blood disorders and the graft-versus-host disease can impact other things as well, like cognition, maybe chemo brain after some of the treatments, and rehabilitation can help with cognitive issues.

(03:35): The mind and the body are very connected, and so emotional support services are critical as well. And we know if the mind is healthy, then it translates into being more active and addresses your rehabilitation needs.

(03:53): Cost-effective rehabilitation therapy can sometimes be provided by specialists in the community. There are many exercise specialists in the community as well, and it's helpful to find exercise specialists who have extra training in caring for cancer patients or patients with chronic graft-versus-host disease.

(04:09): Also, social support services are directly linked to rehabilitation. There are so many community resources available. As we know, the cost of care is high, and there are community resources that can assist patients with rehabilitation needs.

(04:26): The goal of physical therapists is to restore and maintain mobility and function in GVHD patients, treat the physical source of injury and reduce the likelihood of future problems. So, we'll talk first about physical therapy before we get to rehab physicians, which Dr. Gupta and I are. So, physical therapy, the primary goal for these patients is to restore and maintain mobility and function and treat a physical source of injury potentially. But also the goal would be to reduce future issues, preventative rehab, as we call it. So, physical therapists work a lot on patient's ability to walk around their community or walk within the home, or if there's an inability to walk, to use adaptive equipment or devices to help with mobility, whether that's a wheelchair, a walker or canes. Balance can be affected by many treatments during a cancer or blood disorder treatment, and so physical therapy can work on balance so that the patient's mobility is improved.

(05:31): Physical therapists focus a lot on sit and stand function, whether it's sitting and going to standing from a chair or a bedside surface or even toilets. So, transferring between surfaces is important for physical therapy.

(05:51): Among the tools used by physical therapists to help GVHD patients are stretching and using their hands to help with muscle tension and range of motion. The tools they utilize in physical therapy may be stretching, because tight muscles or tight joints require stretching and strengthening; utilizing equipment to help improve function and strength.

(06:08): Physical therapists can also do what we call manipulations, where they utilize their hands to help with muscle tension or joint range of motion. We also use devices that can help electrically stimulate muscles if there's weakness in certain areas, to stimulate directly those muscles to move and get stronger.

(06:33): Like I mentioned, there's a lot of durable medical equipment. That's the fancy word we use in the insurance world and rehabilitation world. Durable medical equipment is just equipment we use in our home and our community to help us be as mobile as possible. That may be a wheelchair or walker, cane or crutches. Other medical equipment can be grab bars or elevated surfaces to help us move around our environment as best as we can.

(07:03): Physical therapy focuses on mobility, walking, and managing a person’s environment. You can find physical therapy in many domains within the medical community. There are physical therapists in the hospital setting, if you're in the hospital, or in rehab facilities, outpatient rehab, which a lot of people traditionally think about. Then there are also some opportunities for home health rehab where physical therapy can come to you. So, physical therapy focuses on mobility and walking or managing your environment.

(07:33): Occupational therapy helps GVHD patients manage day-to-day tasks and function independently. Occupational therapy, we'll move on to, and their goal is also to restore function. Their goal is to assist patients with managing their day-to-day tasks and optimize independence. Independence can be affected by the underlying diagnosis or the treatments, but our goal is to improve independence, regardless of the impairment that a patient may have. So, we may treat the physical source of injury, but also help reduce future injury.

(08:09): Occupational therapy traditionally focuses more on the arms and the hands, so the task that they work with patients on is hygiene, such as brushing your teeth or bathing. They work on getting dressed, toileting, cooking, and cleaning, so the day-to-day tasks that get patients through their day and take care of themselves and be as independent as possible.

(08:35): Occupational therapists can recommend alternative ways of doing a task if the GVHD patient is physically challenged. They also ensure that patients, if they are working, have resources to adapt, to ensure they can still do their jobs, even if they have a deficit or an impairment, as well as encourage patients and show them maybe alternative ways to engage in their hobbies, if something physically has changed or even cognitively has changed. So, occupational therapy, they utilize tools similar to physical therapy, but they may just have a different focus and different goals and focus on the arms and hands.

(09:11): The durable medical equipment they utilize includes shower benches or chairs. There are adaptations you can make to toilets and commodes to make patients be as independent as possible. I mentioned grab bars earlier.

(09:27): Then if feeding oneself is difficult, there are different ways to adapt those food utensils to encourage independence. And just like physical therapy, occupational therapy is found in the same domains from hospitals, rehab facilities, outpatient, and within the homes.

(09:48): Speech therapists help patients who have difficulty speaking, swallowing or thinking clearly due to GVHD. Speech therapy, their goal is to restore and maintain communication skills, but they do more than just the speech component of therapy. They also focus on swallow, as well as cognition, and so they may utilize adaptive equipment, if the voice is impacted or strengthen the underlying voice. They may use technology as well. As I mentioned, they focus on the ability to swallow and the cognitive abilities to engage with your family, your loved ones, your friends, your environment, maybe at work as well.

(10:28): So, they strengthen the oral and swallow muscles to help with communication, as well as diet and nutrition. They utilize adaptive communication devices if the vocal cords or if the larynx or any other element that produces sound for ourselves is impacted. Just like physical therapy and occupational therapy, you can find speech therapy in a wide range across your community to assist you.

(11:00): PM& R physicians work with physical, occupational and speech therapists to help GVHD patients improve their ability to do tasks of daily living. So, going to physiatrist, it can sometimes sound like psychiatrists, but physiatrists are rehab physicians, which Dr. Gupta and I are, rehab physicians. We have specialty training within physical medicine and rehabilitation, which focuses on the goals that are listed there, maximizing patients' daily function and maximizing quality of life. We utilize physical therapists, occupational therapists, and speech therapists to help our patients. But in the beginning, when we meet with patients, our first focus is to diagnose the reasons why patients have impairments that impact their function.

(11:44): PM&R physicians identify the causes of functional problems and then recommend appropriate treatments. So, patients may have troubles walking, for instance. Trying to peel apart all the different reasons why the patients may have impacted function, and so I've listed in the bullet points, there may be reasons the cancer or the hematologic issue is contributing to impacting their walking. Or the cancer treatments may have side effects, such as chronic graft- versus-host disease, that impacts function. But there are a whole other list of reasons why patients may have functional issues and it may be as simple as arthritis or neuropathy, lots of reasons that contribute to impaired function.

(12:26): So, diagnosing all the contributing factors is our primary goal in the beginning, and then transitioning to assisting patients with creating reasonable goals that we can accomplish for each patient. We utilize a lot of tools to help, we physiatrists or rehab physicians, assist patients. Diagnostic evaluations. So, we are able to order x-rays or MRIs or imaging to help diagnose conditions. Or we may use laboratory values looking at whether a patient's anemic or not, or has other diagnoses that contribute to neuropathy, et cetera. We may refer to neuropsychology testing to assess cognitive status. We utilize driving assessments. Our mode is to try to improve independence.

(13:23): PM&R physicians can also provide vocational assessments to help patients continue to be employed. Vocational assessments, to see if we can continue patients in employment. We utilize our referrals, as I mentioned, including the rehab professionals, psychology assistants, et cetera. We also have, as rehab physicians, the ability to assist with management of the underlying reasons for functional impairments, by utilizing injections. For example, if someone has knee arthritis or back pain, injections to help treat underlying issues so they can be as functional as possible, and then we prescribe the appropriate durable medical equipment as well. You may find rehab physicians in various domains as well. It may be from when you're in the hospital to outpatient arena.

(14:17): So, now we will be transitioning to focusing on the different areas of the body affected by chronic graft-versus-host disease, and we will tackle each of these areas, domains of the body that can impact function. So, I will turn it over to Dr. Ekta Gupta for the next slides.

(14:40): [Dr. Ekta Gupta] Chronic GVHD most commonly affects the skin and fascia. Thank you, Dr. Nelson. That was a really great overview of the roles of the different providers that we work with, and what we do. So, the first area that I'll be speaking about is the skin and fascia. Fascia is basically the connective tissue that surrounds our nerves, bones, ligaments, et cetera. I do want to point out that we did pick a few areas to discuss, but there are many more areas in the body that can be impacted by chronic GVHD. So, we'll just try to go ahead and focus on these four areas.

(15:16): Skin involvement is the most common manifestation of chronic GVHD and can affect about 90 to 100% of patients. There are two types of skin manifestations, the lichenoid and scleroderma. You may hear your physician kind of differentiating between the two for you.

 (15:36): Lichenoid skin GVHD usually presents as a rash and can affect the mouth and vaginal areas as well. The lichenoid generally presents as a rash, and it can affect the mouth and the vaginal areas as well. If you look at the picture, you can see in the top left corner, they say lichen planus, like chronic GVHD, and it shows a pink or red scaly rash.

(15:56): Sclerotic skin GVHD causes cause skin tightening, thinning, blistering, ulcers, loss of sweat glands and change in joint mobility. Then, as I mentioned, the other type, which is the sclerodermoid or sclerotic can cause skin tightening, thinning, blistering, ulcers, loss of sweat glands, and change in joint mobility. If you look at the picture, you're kind of seeing that at the bottom left corner, and it shows how skin tightening can decrease joint mobility.

(16:17): There are other effects, too, of chronic GVHD on the skin. It can affect your hair and nails. It can cause rippled skin. If you look at the bottom right picture, we see brittle nails that are very commonly seen.

(16:33): We also notice that there can be oral ulcers, dry mouths, skin sores, and hair loss, which we'll talk about a little bit later.

(16:42): Swelling can be initially seen in the arms or legs, especially when the fascia is involved. Common joints affected are the wrist, shoulders, ankles, and hips, with the joints further away from the body tending to be affected first. The skin changes are often seen in both hands and then can progress over time.

(17:05): Skin GVHD can limit movement and mobility of the hands making daily tasks, like hygiene, difficult. So, as one would expect with these areas of the body affected, we see differences, and unfortunately, impairments in movement and mobility. Daily hygiene and tasks can be affected as well when we have difficulty and changes with our hands. Then job and hobbies are also changed because we're unable to do the roles or function as we expect.

(17:33): Possible treatments for skin GVHD include stretching, splints, steroids, photo therapy or UVB light therapy. So, what are the treatments? There can be stretching, and splinted modalities, and these have to be very carefully done in order to monitor your skin integrity.

(17:45): We always encourage patients to avoid pools when you have open wounds, unless you're doing specialized therapy. There will be a talk after ours, by physical and occupational therapy, which we will be discussing different modalities and treatments that the therapist can do to help with these changes that we see with skin involvement.

(18:07): You may hear your physicians, especially your BMT team, talking about steroids, phototherapy, or UVB light that could be explored as well.

(18:18): This chart shows how to measure how much GVHD has affected a patient’s range of motion. So, if we move on to the next slide, we see a few ways that we can monitor the effects of chronic GVHD on the skin and fascia. If you look at this slide, it starts with the shoulder, and then there are also basically minimal ranges of motion. It includes the shoulder, elbow, wrist, fingers, and foot dorsiflexion. So, one is the minimal range of motion that we're looking at, and it progresses to full range of motion of the shoulders, at seven.

(18:53): If you see with elbow flexion is what one starts at, and then it goes all the way to seven, which is full elbow extension. Same with the wrist. We're looking at being able to reach full wrist, extension and flexion.

(19:08): Then for the foot dorsiflexion, we would like to see the ankle come all the way up. Dorsiflexion is bringing your ankle up, and then plantarflexion is bringing ankle down. Generally, the changes due to skin GVHD, cause you to keep your ankle down, and ideally want to try to stretch the Achilles tendon to be able to bring our ankle up.

(19:36): Chronic GVHD in the mouth can affect eating, swallowing and speech. Speech therapists and dietitians can help address these problems. If we look at some of the oral side effects of chronic GVHD, we can see quite a few changes in the mouth. Unfortunately, you'll see in part A, you'll see erythema, which is that redness that's being caused in the gums. Sometimes you see redness on the tongue as well, which you can see in the picture on the right, and under section A.

(20:10): As I mentioned earlier, you can see lichenoid lesions as well in the mouth and the vaginal area. You're seeing kind of those changes in part B, where you're seeing the discoloration with the white changes along the gums, as well as the soft tissues. You can see ulcers developing, which you're seeing an example of on this person's lip in part C, and it can also happen in the oral mucosa.

(20:35): Then you can see mucocele, as well as sclerosis occur, which are D and E. So, having GVHD in the mouth can impact your swallowing, your speech, and there are different ways to treat it. As Dr. Nelson had mentioned, there is speech therapy, and then in the picture on part E you see an example of somebody being measured and then using the Therabite. So, this is a way that speech therapy can be involved to help you work on jaw range of motion, when you start to have sclerotic changes.

(21:09): We often also consult our dietician to assist us with recommendations regarding our diet and how to modify that, and sometimes that may mean using a soft diet, taking smaller bites, using a straw. So, there are different strategies that both speech and dietary work together to provide, to help patients dealing with this oral chronic GVHD.

(21:38): GVHD can affect a person’s vision and ability to drive. On the next slide, we talk about ocular GVHD or how the eyes are affected. Unfortunately, we know that this can affect our vision, and this can cause issues, especially with driving, and then how to kind of modify when we're not able to drive. So, that's an area that physical occupational therapy can also assist with as well as actual driver's evaluation.

(22:04): So, here in Houston, we have a company that we work with, that we refer our patients to when they're needing assistance with driving due to changes. In the picture you can see the different effects. So, there's grade zero, grade one and grade two, chronic GVHD, and you can see the changes that we're seeing in the eye.

(22:31): Chronic GVHD can affect the lungs making it difficult to breathe. On the next side, we talk about the effects of the cardiopulmonary system, so the heart and lungs related to chronic GVHD. In this x-ray, you're seeing changes that have occurred as well as a fluid or pleural effusion, as we would call it. So, fluid in the lungs, as well as changes to lung function can occur. Unfortunately, as we see these changes, we find that patients have a harder time with breathing, and then your muscles also become weaker over time.

 (23:04): In severe cases, you can also see constriction around the heart related to chronic GVHD, but there is cardiopulmonary rehabilitation that can help patients. Generally, cardiopulmonary rehabilitation is a specialized area. There are therapists that are working on your breathing while monitoring different areas, such as your heart rate, your pulse-ox and they have you doing a variety of different things to work on your breathing, being able to take deep breaths and watching how you deal with this. It's generally a supervised activity that slowly allows you to progress in your function under close monitoring.

(23:48): Steroids used to treat chronic GVHD often cause muscle weakness. In the next slide we talk about steroid-induced myopathy. This is very, very common, because many of the GVHDs are treated with steroids. So, steroids are helping decrease that inflammation that you're feeling from the GVHD, but in turn, the steroids also do have side effects.

(24:18): So, generally, when we look at the literature related to steroid-induced myopathy, we're seeing a weakness in the proximal muscles, especially the hip flexors, the neck and shoulder muscles. It is a slow onset of weakness, and it's generally dose dependent. So, for patients that are on chronic steroid use at high doses, we see more of these effects. You'll find that sometimes you'll notice that you have a difficult time going from sitting to standing, and that's generally related to that weakness that we're seeing in the hip flexors, specifically, the iliacus muscles. Then we also see it in the quad muscles as well.

(25:04): So, what do we do when that happens? Well, first we talk to our oncology team. So, we ask them, is there a way to treat the GVHD at a lower dose of steroids? Are there alternative medications that we can try to see if this helps? Often, we notice improvement as the patients are weaned off of steroids or put on a lower dose.

(25:26): Physical and occupational therapists can help patients with chronic GVHD regain muscle strength. We also start rehabilitation. So, the physical therapy team can work on sit to stand exercises that help strengthen those hip muscles, and occupational therapy can work on strengthening the shoulders and the neck muscles. By doing so, we counteract the effects of the steroids on these muscles.

(25:48): So, the literature shows you actually have to do a combination. Ideally, you need to treat the steroid myopathy by decreasing your steroid dose, but you also have to do a moderate level of exercise in order to really see an improvement and counteract the effects of the steroid-induced myopathy.

(26:10): If a patient’s red blood cell count is low, physical and occupational therapists can suggest ways to conserve energy to that the patient can do activities he or she would like to do. So, what are some precautions that we need to keep in mind when we're talking about working with therapy, especially in the setting of chronic GVHD? So, blood levels. I know that several people have anemia, which is having a low red blood cell count, and that can make you tired, feel faint, dizzy, or just overall feel weak, and have difficulty doing activities. So, we need to be aware of what our blood levels are and set goals, based off of where we generally live with our blood counts. So, if your hemoglobin is normally seven to eight, you may feel some of these effects, and there are strategies by physical and occupational therapy to help you conserve your energy, so that you can focus on doing the activities that you would like to do, with the awareness that your blood levels are low.

(27:06): A low white blood cell count increases the risk of infection but should not preclude patients from getting help from a physical or occupational therapist, provide they take steps, like masking, to avoid infection. We often also see neutropenia, which is a low white blood cell count. This puts you at risk for infection, and it is very commonly seen after a bone marrow transplant. Your bone marrow team has generally put you on antibiotics or antifungal medications that are prophylaxis to avoid obtaining infection, but what can you do with the therapist? So, it's being aware, wearing gloves and a mask when you're in a therapy setting. It should not restrict you from going to outpatient therapy, but you just need to be cautious. Always wash your hands after you do your therapy, and then try to be aware that if somebody is sick near you, that you have your mask on, and then request that they have their mask on too. I think during the COVID era, this has become a lot easier, as most patients are masked when they're in the therapy setting, both outpatient and inpatient.

(28:05): A low platelet count increases the risk of bruising and may limit activities. The other thing to keep in mind, thrombocytopenia, so low platelet counts, put you at risk for easy bruising and bleeding. There have been several studies that have shown that actually a count of less than 10,000 or so, still does not cause major events, but we want to be conscious of this. So, depending on where you are in the community, sometimes the physical therapists will limit what activities they do with you, depending on your platelet count. There's more and more literature that is appearing about this, and so I always recommend you have a talk with your physician regarding cutoffs for platelet counts.

(28:52): Here at MD Anderson, we're a little bit more liberal with our platelet counts, meaning we will allow you to do TheraBands, which are those stretchy bands that have some resistance, even with platelet counts of 10 to 20,000. Sometimes in the community, they cut you off at about 50,000, and I think that's a discussion that you do have to have with your team to help decide what's best. If you see bruising by doing the resistance bands, obviously you want to hold off and maybe change, so you're doing a lighter resistance band. If you've ever noticed there's a lot of different colors of resistance bands, and that's basically a change in the level of resistance that band is providing. So, we can start low and then try to advance the resistance band and see how you respond.

(29:46): Patients with low blood counts should be take care to reduce the risk of falls, to avoid the risk of blood in the brain. I think one thing to keep in mind, especially when you have low blood levels of all three of these, is to be very conscious as to your risk of falls. That's the one thing that we try to avoid, because falling when you're thrombocytopenic can cause you to break a bone, to have blood in the brain and other issues that require immediate intervention. In addition, keeping in mind that your blood counts are low should make you conscious about falling. So, when you have anemia, you don't want to try to get up and go right away. You may need to give yourself a moment to stand up, and then pause before you try to do your next activity.

(30:31): I mentioned this earlier, but other things to keep in mind, so when we have skin breakdown with GVHD of the skin, we should avoid pool or water exercise, and then avoid stretching that pulls or tugs at a wound.

(30:48): Patients with chronic GVHD should have their bone health evaluated before starting an exercise program. Last but not least, in terms of things to keep in mind, weakened bones. So, often related to treatments, as well as steroids, we can see osteoporosis, as well as something called avascular necrosis of our bones, especially the heads of our femur. These are the long bones in our legs, and they do a lot of the weight-bearing for walking. So, it's very important to kind of be aware of your bone integrity and bone health. Resistance training can help you build bone integrity, but as I mentioned, if your counts are low, you need to do this with the advice of your physical therapist and physician.

(31:30): If you're having pain in your bones, you need to have it evaluated before you start exercise programs. We need to know if you're at high risk for a fracture, because then we will limit some of the activities that we try to have you do, in order to modify and help you just work on bone strength, but not put you at higher risk for fracture.

(31:52): So, next, I'll pass it back over to Dr. Nelson, who will finish up, and then we'll move forward with questions.

(32:03): [Dr. Megan Nelson] Summary of presentation.  Thank you, Dr. Gupta. So, essentially in summary, the next few slides are just to reiterate that rehabilitation services can help maintain function with the goal of not losing function, rather than waiting to lose function. Hopefully, prevent worsening of function, but also our hope is always to restore some function, and utilizing the various rehabilitation providers.

(32:32): If you are able to be evaluated by a physical medicine and rehabilitation physician like Dr. Gupta or me, we can help diagnose conditions that affect your function. Physical therapists can help you work on your mobility, whether it's within the home or out in the community, and occupational therapist primarily work on the arm and hand function. So, if you're having difficulties with your activities of daily living, bathing, dressing, toileting, hygiene, occupational therapist would be the right avenue to request a referral to them. And speech therapy to work on swallow, as well as your vocalization and communication.

(33:21): Also, speech therapy is wonderful for cognitive dysfunction. Whether it's foggy thinking after the treatments that you've endured. So, advocating for yourself and knowing potentially whether you need physical therapy, occupational therapy and/or speech therapy.

(33:44): How to find a physical medicine and rehabilitation physician. If you feel like you would benefit from physical medicine and rehabilitation physician, there is a link that we've included in the slides. You can click on that link and put in your zip code and look for a physical medicine and rehabilitation physician near your area. Ask your medical providers, your oncologist, they may be aware of a rehab physician that they've worked closely with throughout the years. And I always think it's super helpful to talk to your support network, whether that's your loved ones, friends, or other patients and support groups or online support. There are so many ways to advocate for yourself, and they may have great tips and tricks to help you with your rehabilitation needs. We thank you so much, Dr. Gupta and I, for listening to this presentation and we will open it up to questions.

Question and Answer Session

(34:49): [Susan Stewart] Thank you so much, Dr. Nelson and Dr. Gupta, that was very instructive I think, in helping us understand how physical medicine rehabilitation specialists can help us as we're dealing with things like graft-versus-host disease.

(35:19): The first question I think relates, Dr. Nelson, to the last slide you showed. You indicated how to find a rehabilitation medicine specialist. How do you find one that understands graft-versus-host disease?

(35:36): [Dr. Megan Nelson] Wonderful question. If you're in more of an urban area, reaching out to the list of rehab physicians available, you may want to contact one of them. If they don't, online, show that they have specialty in cancer rehabilitation or bone marrow transplant patients, I think reaching out to whichever one you can contact. A lot of times our rehab professionals, our rehab doctors are connected. We're a fairly small community. So if that individual, that physician does not have training in patients with chronic graft-versus-host disease, they will be able to reach out to their colleagues in the community or beyond their community, and still hopefully be able to assist you.

(36:25): [Susan Stewart] Thank you. Dr. Gupta, this person wants to know that, given the concerns people have about COVID these days, is it possible to consult with a rehabilitation specialist or an occupational therapist online as opposed to in-person?

(36:42): [Dr. Ekta Gupta] Thank you. Yes, it is. It just depends on the setting, in terms of the state you're in. So, at MD Anderson, we still do virtual visits, but I think that's changing per state. So, maybe something to look into in terms of state guidelines. I would suggest, as Dr. Nelson said, trying to reach out to a rehabilitation provider near you, and then asking that question, whether or not it's possible for them to refer you to an occupational therapist who does virtual visits.

(37:18): [Susan Stewart] All right. Thank you. Dr. Nelson, this person wants to know whether exercise or having a physical therapy or occupational therapy before and/or during treatment, in addition to after treatment can reduce the risk of developing GVHD or the severity of GVHD.

(37:39): [Dr. Megan Nelson] I'm not aware of the interventions during that timeframe necessarily preventing chronic graft-versus-host disease, but what we do know is it can help with the severity of the symptoms, such as reduced joint range of motion. The earlier we can be involved with stretching, whcih is helpful to prevent further tightening. But also I think it's important that rehab providers can take notice earlier of reducing range of motion or reducing function that may be occurring. Then the rehabilitation providers can notify the oncology physicians earlier and say, "We're seeing reduced function," and that may prompt earlier interventions from a medical and rehabilitation standpoint.

(38:35): [Susan Stewart] Thank you. Dr. Gupta, this person wants to know whether you have any insights into edema as a manifestation of chronic GVHD. Her family member's edema has not responded to initial treatment but has been referred to a nephrologist due to elevated kidney values. Are there any particular rehab considerations related to edema that is greatly impacting his mobility?

(39:04): [Dr. Ekta Gupta] Thank you. So, that is a complex question. I think there are important things to rule out when we address edema. So, seeing the kidney doctor, for example, to see if it's related to the kidneys is important. Ruling out any blood clots that could be causing edema in that specific extremity if it's just one extremity. Generally, if we're seeing the same level of edema in both legs, it is usually not a blood clot, but that's always something that's important to do.

(39:39): The next question that I would ask is there anything going on in terms of lymph node involvement? Are we seeing edema related to lymph edema? If we're not seeing edema related to lymph edema then does elevating our legs on pillows at night, for example, help? If it does, have we tried compression stockings? There are several different levels of compression stockings, meaning they apply a different pressure. So, a lot of the in-hospital ones, basic over-the-counter compression stockings start at 10 to 20 millimeters per mercury. So, it's a consideration to start there and then see if it helps. If it doesn't help enough, you may need to see a specialized provider such as a physical therapist who deals with this edema and can provide you with more specialized stockings. So, there are interventions, but I think it's important to figure out the cause of the edema first.

(40:43): [Susan Stewart] All right. Thank you. Dr. Nelson, does daily or regular incentive spirometry help prevent lung GVHD, and what about aerobic exercise for the same issue?

(40:57): [Dr. Megan Nelson] Yeah. Thank you for that question. Incentive spirometry, I am not aware either whether that helps prevent lung GVHD. However, incentive spirometry is very helpful on maintaining lung function, as best as you can. It also is a preventative technique to help reduce risk of pneumonias. So, again, I'm not aware of it preventing chronic graft-versus-host disease in the lung, but I think it's a really beneficial technique to enhance your function. And if you do develop graft-versus-host disease of the lung, despite using incentive spirometry, you're maximizing your lung reserve, which is helpful going forward. Dr. Gupta, are you aware of incentive spirometry, preventing graft-versus-host disease?

(41:54): [Dr. Ekta Gupta] I'm also not aware of any literature supporting that. I think, and I may have skipped over this, but in terms of the answer to that specific question, no, I'm not aware. One thing that I didn't mention was seeing a pulmonologist who may perform pulmonary function tests, and that can also give you an idea as to what type of restriction you may have in terms of your lungs. Sometimes they can then help direct whether or not incentive spirometry may help you maintain that lung function. Does that make sense?

(42:32): [Dr. Megan Nelson] Yes. Sure, absolutely. Thank you for adding that.

(42:35): [Susan Stewart] All right. Thank you for that. Dr. Gupta, this person is from a small place in Europe, and there are no specialists for GVHD. She wants to know whether lung GVHD rehab resembles lung rehab after COVID.

(42:56): [Dr. Ekta Gupta] Thank you. So, it is slightly different, and I think that's, once again, as I mentioned, those pulmonary function tests would be useful in seeing exactly where you have the restrictions, so what type of rehab might benefit you, based off of your pulmonary function tests. I don't want to say trying to do some of the exercises that you may do related to COVID could not help you. I just don't know if I could say that they're exactly the same, if that makes sense. I don't know if you have any further input Dr. Nelson.

(43:39): [Dr. Megan Nelson] I agree with you. I think it really is determined based upon your lung function, and then the rehab professionals, knowing whether you have what we call either restrictive or constrictive lung function can then determine the best rehab intervention. So, I do think pulmonary rehabilitation will be helpful, and our pulmonary rehabilitation providers are used to treating both different types of lung conditions, so they would be able to tailor it specifically for you.

(44:18): [Susan Stewart] All right. Thank you. The next question for Dr. Nelson. I've seen ads for deep tissue massage machines for $100 or more. Are these useful or should I steer away from them?

(44:34): [Dr. Megan Nelson] So, deep tissue massage can be difficult when you have skin graft-versus-host disease. Several layers of the skin can be involved with the graft-versus-host disease, and sometimes what that translates into is the skin is more friable or not as strong as it once was, and a deep tissue massage device could impair the integrity of the skin. I think it's really important to kind of think about it person- and patient- independent. If an individual has had wounds, skin wounds, because of chronic graft-versus-host disease, or reduced joint range of motion, then we know that level of graft-versus-host disease is a little more advanced. I would think it would be a risk to use a deep tissue massage device in that scenario. Now, in a milder level of chronic graft-versus-host disease, it may be better tolerated, but still, graft-versus-host disease can be somewhat of an inflammatory component too, so a deep tissue massage may enhance inflammatory component. Dr. Gupta, do you have any other additional input on that?

(46:01): [Dr. Ekta Gupta] No, I would agree.

(46:04): [Susan Stewart] All right. Thank you. Dr. Gupta, as long as you're on, I'll direct this next question to you. This listener said "I've been diagnosed with fasciitis, and it really is affecting my quality of life. What do you suggest to help with this?"

(46:23): [Dr. Ekta Gupta] So, there are different treatments, depending on the location of fasciitis. So, stretching can definitely make a huge impact. So, for example, if it's plantar fasciitis, while it might be related to the graft-versus-host disease, we can treat it kind of similarly to what we might treat it in other patients. So, sometimes splinting can be an option too, to provide like a static stretch onto that area, and then working with therapy on strengthening, as well, may help you.

(47:02): [Susan Stewart] Thank you. I'll mention again, I think Dr. Nelson mentioned it earlier, that the next workshop that follows this, there'll actually be some demonstrations of what's splinting, and some of these other interventions are for those of you who are interested.

(47:16): Dr. Nelson, how does GVHD interact with neuropathy? Does it make it worse?

(47:25): [Dr. Megan Nelson] So, graft-versus-host disease can directly impact our nerves, which if our nerve health is compromised, can cause neuropathy where you may feel numbness, tingling in certain areas of our body. So, graft-versus-host disease, whether it directly affects the nerves, or the other way it can affect the nerves is by affecting the tissue, the skin, the fascia, all the muscles even, all the tissues that surround nerves. If those get more fibrotic and tight, it can also put pressure on the nerves. So, chronic graft-versus-host disease can have a direct impact on the nerves itself, but then also a secondary impact by affecting the tissues around it. So, it is connected, for sure.

(48:22): [Susan Stewart] Thank you. Dr. Gupta, this person wants to know if there are any medications that you should not use once you've developed neuropathy.

(48:39): [Dr. Ekta Gupta] So, do you mean in the setting of vitamins? I guess what I would say in the setting of vitamins, when we think about neuropathy is you should get your levels checked. Just taking vitamin B complex over the counter is not always appropriate, because you don't want to be overdoing it, and you don't want to have abnormally high levels of vitamins that might contribute to your neuropathy if you're abnormally high. In terms of other medications, there's possibly side effects related to medications, but in general, there's not one that I think I would say that you specifically need to avoid per se. I don't know, Dr. Nelson, if you have any thoughts on that.

(49:33): [Dr. Megan Nelson] I agree with you. I think what's also important in addition to not overdoing vitamins, is to make sure your other medical conditions are well-managed, especially the other medical conditions that can contribute to neuropathy. So, for example, if you have diabetes, we know diabetes can contribute to neuropathy, so being very cognizant of taking your medicines for diabetes to ensure that doesn't contribute to neuropathy. Or if you have a thyroid disorder, making sure that is well managed, so it doesn't exacerbate your neuropathy. I agree with everything else you said, Dr. Gupta,

(50:18): [Susan Stewart] Thank you. Dr. Nelson, as long as you're on, I'll direct this next question to you. This individual wants to know whether prophylactic swallowing exercises are helpful to maintain swallowing function in the setting of GVHD.

(50:33): [Dr. Megan Nelson] That is a great question, that I'm not aware of the literature regarding preventative exercises for swallow, but I, this is me speaking on my own thinking, is that it would be beneficial to maintain muscle strength, especially when you have oral graft-versus-host disease involvement, to try to maximize and maintain function. I think about it for all the rest of our muscles in our body. When we want to keep strength in our arms and our legs, we have to continue doing exercises and maintain strength. I would think it would be the same for those swallow muscles, but again, I'm not up to date on the speech therapy, swallow literature in chronic graft-versus-host disease on that specific question.

(51:29): [Susan Stewart] All right. Dr. Gupta, can you explain what TENS therapy is, and when it's used?

(51:40): [Dr. Ekta Gupta] Sure. So, TENS is transcutaneous electrical nerve stimulation. So, what it is, basically, is a series of pads that are applied generally onto the muscles that are tight or having spasms, and it sends electrical impulses through the pads. The idea of TENS is that it can help kind of stimulate different endorphins, and try to decrease the pain that we're having, as well as the spasms in muscles. It can be pretty effective for many patients, especially for that pain management. We'll use it a lot for low back pain. However, I think the caveat with TENS for GVHD is, once again, the same issues that Dr. Nelson had mentioned related to skin. So, if you have skin GVHD, that's something you consider, because those electrical impulses may feel differently and they may transmit differently through fibrotic or thickened skin and thickened fascia, compared to non-thickened areas.

(52:56): So, I generally use TENS when somebody is complaining of that kind of spasms. I'll use it in the upper extremities, the neck, the paraspinal muscles, but we have to be really careful about what their skin is or what their skin looks like and feels like in that area. Then the other thing you can do is try it at a low frequency and see how it affects the skin or their skin changes that we notice. What is the pain level with the application? So, does the pain actually improve or does it worsen? Luckily it is a topical pad, so you can remove the whole TENS unit, but that would be my suggestion. I would just be very, very cautious regarding the skin GVHD, and the use of TENS.

(53:46): [Susan Stewart] Thank you. That's helpful. Dr. Nelson, can you explain what scrambler therapy is and when it is useful?

(53:56): [Dr. Megan Nelson] So, I have not used scrambler therapy on a particular patient at this point, but scrambler therapy is somewhat similar to TENS unit, in the sense of it's trying to prevent painful signals getting to the brain by distracting the brain, essentially. So, distracting those painful signals, and readjust your perception of stimuli coming to the brain. So, I have not had a specific patient use scrambler therapy at this point for chronic graft-versus-host disease. I'm curious, Dr. Gupta, if you've had a patient use scrambler therapy yet.

(54:39): [Dr. Ekta Gupta] So, we do use scrambler therapy here at MD Anderson, but it's the same issue with chronic GVHD. It's the skin GVHD that makes it a limitation, I would say. Generally when I've referred patients for scrambler therapy, it's related to severe peripheral neuropathy or central neuropathy that's causing severe pain in an extremity, and I've had very good results. But I think once again, in the setting of GVHD, you need to be aware as to the changes of the skin, the fascia, that sclerotic thickening, and how that might be affected if you try such a modality.

(55:22): [Susan Stewart] All right. Thank you. Dr. Gupta, while you're here, this person wants to know if someone has sensitive skin, and they have graft-versus-host disease, what are some of the best tips on how to exfoliate the skin safely?

(55:40): [Dr. Ekta Gupta] To be honest, I'm actually not sure if I know the answer to that question. I mean, because generally we say avoiding anything with irritants in the face wash lotion, things like that. I always advise mild, very mild lotions, like using CeraVe. If you're using a face wash, using one with sensitive skin. I'm not sure regarding exfoliation. Dr. Nelson, do you have any thoughts?

(56:17): [Dr. Megan Nelson] I'm unaware as well, but I think what would be really helpful is to ask your primary provider, your oncologist, based upon your level of graft-versus-host disease, if it would, if your particular skin would tolerate like a very light exfoliation ointment or cream or wash, and that way they could better direct you specifically.

(56:45): [Susan Stewart] All right. This individual wants to know if you have any thoughts, any comments on red light or near infrared therapy for skin or muscle. Dr. Gupta.

(57:01): [Dr. Ekta Gupta] So, to be honest, I do not know very much about that. I know that there is some growing areas of use when we're talking about muscular changes. So, I think they're looking at it for using use in the quads and things like that, but I have never used it clinically, and I'm not sure if there's any studies that have affect, looked at safety in our GVHD population. I don't know if you know more, Dr. Nelson.

(57:36): [Dr. Megan Nelson] I do not. I am unaware of that research either.

(57:42): [Susan Stewart]   Closing. Well, thank you, and with that, I'm afraid we're going to have to wrap up the workshop. This has been an excellent and very informative presentation. Again, I do encourage those that are interested in this topic to watch the next presentation, which is actually going to demonstrate some of these therapies. I want to thank Dr. Gupta and Dr. Nelson for their time, and for this wonderful information, and I want to thank the audience for some terrific questions that have been submitted. 

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