Staying Safe and Active with Graft Versus Host Disease

Transcript of Presentation:

(00:01): Marsha Seligman: Introduction. Welcome to the workshop, Staying Safe and Active with Graft-versus-Host Disease (GVHD). My name is Marsha and I will be your moderator for this workshop.  

Before we begin, I'd like to thank Sanofi whose support helped make this workshop possible.  

It is my pleasure to introduce today's speaker, Mr. Adam Matichak. Adam is a board-certified clinical specialist in oncology physical therapy who has spent nearly a decade on staff at Stanford Medical Center in Palo Alto, California. His work focuses on patients who have undergone a stem cell or bone marrow transplant, particularly those who have been diagnosed with graft-versus-host disease. Please join me in welcoming Adam Matichak.

(00:52): Adam Matichak: Overview of Talk. Thank you very much for the introduction, Marsha, and thank you everyone who's logged in, and everyone who listens to this recording. Hopefully, everyone will gain some valuable information on how to help keep themselves safe and active after receiving a new diagnosis of graft-versus-host disease.

(01:20): Marsha did a great introduction, but just a little bit about myself. I'm an acute care physical therapist at Stanford Healthcare in Palo Alto. I have been on staff full-time since 2016 with our hematology, oncology, bone marrow transplant, and immunotherapy teams. I am one of just over 200 board-certified clinical specialists in cancer rehab in the United States through the American Board of Physical Therapy Specialties.

(01:48): Just a couple of brief learning objectives for this presentation. We're going to define graft-versus-host disease and its prevalence. We're going to identify the common organ systems that are affected and the common treatments for graft-versus-host disease. We're going to discuss steroid myopathy and its impact on mobility, and we're going to identify some safe activity and exercise practices for patients with graft-versus-host disease.

(02:17): Graft-versus-host disease is a complication of an allogeneic, or donor, stem cell transplant. Before we get into how to stay safe and active after this diagnosis, I just want to take a step back and talk about what graft-versus-host disease is, and some of the common treatments that we'll see. Graft-versus-host disease is a complication of an allogeneic, or donor, stem cell transplant. This is when a donor's immune cells see your normal healthy cells as foreign and begin to attack them. Any organ system of the body can be affected by graft-versus-host disease. As we'll talk about in the next couple of slides, there are two subtypes of graft-versus-host disease. We have acute graft-versus-host disease, and chronic graft-versus-host disease.

(03:01): Acute GVHD typically affects the skin, GI tract and liver, usually during the first 100 days after transplant. Unfortunately, depending on the research that you look at, acute graft-versus-host disease occurs in between 30 and 50% of allogeneic transplant patients. Most commonly we're going to see on the acute care side, GVHD affecting the skin and the GI tract.

(03:42): Chronic GVHD can affect more organs and tissues than acute GVHD including the skin, GI tract, liver eyes, mouth, joints, central nervous system or brain. Depending on the research that you look at, chronic GVHD occurs in 30% to 70% of long-term survivors after an allogeneic transplant. With chronic graft-versus-host disease, this is going to occur later, typically after the first hundred days following your stem cell transplant, and this can continue to affect those things that we see with acute graft-versus-host disease with the GI tract, the skin, and the liver. However, we also commonly see that other parts of the body, such as the eyes, mouth, joints, and even the central nervous system or brain, are affected by graft-versus-host disease, and these longer-term issues. Depending on the research that you look at, this chronic GVHD occurs in 30% to 70% of long-term survivors after an allogeneic transplant.

(04:25): We’re typically going to see graft-versus-host disease acutely in the GI tract and the skin. We see that with the skin, 75% to 85% of our patients will be affected. For the GI tract, 50% to 60% of patients are affected.

(04:50): And the other thing that we need to be aware of is that graft-versus-host disease can affect multiple systems within the same patient, which makes it really hard to treat and makes the side effects of those treatments a little bit more challenging to deal with.

(05:06): First line treatment for GVHD is systemic steroids and other immunosuppressive medications. Let's get into some of those treatments that we see for GVHD patients. The first line of treatment that patients are normally going to get is a round of corticosteroids. Typically, these are dosed at one to two milligrams per kilogram of body weight daily. This is the standard first line of treatment. You may see some drugs such as prednisone or methylprednisolone, or Solu-Medrol. Those are just different systemic steroids that your doctors can prescribe to help with this overactive inflammatory response when patients have graft-versus-host disease.

(05:47): We may see some immunosuppressive medications used like tacrolimus or cyclosporine, and these help tamp down that overblown reaction that we're seeing from these donor immune cells. So, we need to be aware of any other immunosuppressive medications you're taking and how your counts, including your white blood cell count and platelet counts, are doing after your stem cell transplant. And with some of these medications, like tacrolimus, your doctors are most likely going to want to keep your platelet counts up a little bit higher, because of some of the side effects that we've seen.

(06:28): If the first line treatment for GVHD doesn’t work, other drugs like Rituxan may be used. Unfortunately, some patients have what we call steroid-refractory graft-versus-host disease, and this is where that GVHD is not responsive to the steroid treatments, which are typically those first-line treatments for these patients. For these patients, the treatment may include drugs like Rituxan to help with immune modulation and immunosuppression, which helps bring those counts down and tamp down that response.

(06:58): For our patients who have skin graft-versus-host disease, we may see a procedure called photopheresis, which uses UV light, a machine very similar to a dialysis machine where your blood is filtered through it and UV light is used to help knock down some of those T-cells that are causing this immune response.

(07:25): We're going to talk a fair bit about steroids here, because it is that first line of treatment. When it comes to exercise and activity, we really need to be aware of some of the things that steroids can cause in our body, and how those things are going to affect our ability to get up and get around safely.

(07:46): Corticosteroids play a really important role in managing graft-versus-host disease. They help to suppress the immune system. This overblown immune response is what's causing those donor cells to now attack our own healthy tissues, causing problems.

(08:04): These corticosteroids are systemic, so they're going to help reduce inflammation throughout the body, and they’re really going to help with symptom management for our skin GVHD patients. They’re going to help with the skin fragility and rashes that we see with our GI graft-versus-host disease patients. Steroids help slow down the volume and frequency of diarrhea and play a really important role in managing symptoms to help improve the quality of life of patients who are dealing with these side effects.

(08:40): Corticosteroids are also going to play a critical role in preventing the progression and the severity of graft-versus-host disease and other complications. We're hoping to blunt that immune response, that over-activation of the immune system. By using those corticosteroids, we're hoping to prevent this progression, and hopefully we catch these things early and prevent the severity of GVHD getting to that stage three, stage four when it gets really hard to treat, which creates a lot of really difficult things for patients to deal with.

(09:30): Corticosteroids can have unwanted side effects like muscle weakness, skin changes, and weight gain. Some side effects, especially those from a mobility standpoint, we see with patients who are on high-dose steroids or who are on steroids for a prolonged course. One of the things that we get really concerned about from the physical therapy side is muscle weakness. We're going to talk a little bit about this more on the next slide, as we get into a condition that's called steroid myopathy, but this can cause weakness and atrophy in a lot of our large muscle groups. We think about our quads and our glutes, our shoulders, our chest, these large muscle groups that we use a lot for day-to-day activities to get up and get around safely.

(10:12): We can see skin changes with patients that are on high-dose steroids. We can see thinning of the skin, which can make the skin very fragile. We can also see patients who bruise a lot more easily. So, we want to be cautious about things like falls or bumping into things around the house and causing bleeding and bruising under the skin, especially when that skin is really fragile.

(10:37): Unfortunately, corticosteroids can also cause weight gain. They can cause the appetite to increase and patients put on weight fairly quickly when they're on steroids. Not only do steroids increase the appetite, but they also cause patients to hold onto a lot of water weight. We have this really difficult combination of things to manage, where now we have muscle weakness in these large muscle groups that we use to control our legs, but at the same time those limbs are getting heavier because of those patients holding onto more water weight. The combination of mobility and being able to do things safely starts to become a concern.

(11:18): Corticosteroids can also affect bone health, raise blood pressure, and increase risk of infection. Another thing that we'd like to talk about, from the rehab side of things, is bone health. Patients who are on long-term courses of corticosteroids are at higher risk for developing osteoporosis, or demineralization of the bone, which puts them at increased risk for having fractures. So again, we talk about safe activity, and one of those things that we really want to touch on is fall prevention.  

(11:50): Corticosteroids can also cause steroid-induced hyperglycemia, that really high blood sugar change. You want to be cautious of your diet while you're on high-dose steroids, making sure that the medical team is managing those things. And then being aware of those side effects of hyperglycemia, like confusion, that can make getting up and getting around safely more challenging.

(12:20): Like we've talked about already, we use these steroids as an immunosuppressive medication, so that puts patients at higher risk for getting infections. So of course, anytime that our patients are outside of the hospital, we want them to stay active. We want them to get up and get around safely. We want them to continue enjoying the things they enjoy doing. But just being cautious that being on these high-dose steroids can give you a higher risk for getting an infection.

(12:49): We want to be cautious of being out in crowded areas, being around different environmental factors. Really windy days - out here in California, we have these really high pollen counts right now. So all of those things blowing around in the air, we don't want anything getting into your lungs and into your respiratory system that can cause you other medical complications.

(13:08): We've talked about this muscle weakness that comes along with being on corticosteroids. And one of the things that patients always tell me is, "I'm on steroids. I thought bodybuilders use steroids to build these big strong muscles," and unfortunately the kinds of steroids that we're using to treat graft-versus-host disease are not anabolic steroids, but these systemic corticosteroids that actually can cause muscle breakdown.

(13:40): We have this condition called steroid myopathy, which is muscle damage and muscle weakness due to prolonged corticosteroid use. Unfortunately, the incidence of this is pretty high, around 60% in patients who are on chronic steroids, and the risk does increase with higher doses. Typically, anything over 10 milligrams a day for greater than three months puts you at a higher risk for developing steroid myopathy.

(14:10): Being dose dependent, the other thing that we get concerned about is patients who are starting off on a much higher dose. We consider anything over 40 milligrams a day to be high-dose steroids.

(14:25): The clinical features that we see of steroid myopathy from the rehab side are this proximal muscle weakness. We talked about those large muscle groups. Proximal just means closer to our trunk. So those hips, the quads, the glutes, all those big muscles that we use to be able to get ourselves out of a chair, to get up off the toilet, all those big muscles that we use to walk and climb stairs. We look at the big muscles in our chest, our shoulders, and our back, those muscles that we use for that nice, tall, stable posture when we're sitting or standing.

(14:59): When we have weakness in any of these muscle groups, especially in the hips and quads, it makes everyday activities like getting up and ambulating safely more difficult. It also puts patients at a higher risk for having balance issues and falls.

(15:17): One of the things that concerns us as we start to see quad weakness in patients, especially when they have to walk long distances or climb flights of stairs, is that we worry about their knees buckling. Getting out of position, taking too long of a step to avoid a crack in the sidewalk, or to step around somebody, and not having the quad strength to be able to catch themselves. So we will always want to make sure that we're keeping patients safe, and really, that education on how much of a fall risk you become when you're on these high-dose steroids becomes really important.

(15:59): Before starting an exercise program for GVHD, patients should get clearance from their doctor and keep them informed. We do have some considerations before we get into what you should be doing for exercise after a graft-versus-host disease diagnosis. The first thing is that you want to make sure that you have medical clearance from your doctor. They want to make sure, or we from the rehab side want to make sure, that your doctors are screening for any active graft-versus-host disease, any infections that might be superimposed on that graft-versus-host disease, and what organs are involved in your GVHD, because it's going to change the things that we do treatment-wise and some of the safety precautions that we need to take.

(16:37): We want to make sure, anytime that you are going to see a new physical therapist after a diagnosis like GVHD, that your provider is aware of any active treatment that you're on. You need to let them know that you're on steroids, and what your steroid dose is. If there are any changes in those treatments, up or down, as they start to wean you off of steroids if things are getting better, or if you're having a GVHD flare and they need to go up on that steroid dose, your rehab provider needs to be aware.

(17:18): Exercise programs for GVHD patients should taken into account that GVHD patients can become fatigues more quickly than usual. We always want to make sure that we educate on fatigue and energy conservation. We need to ensure that we adjust the intensity of therapy based on the symptoms you're experiencing. We know that GVHD and being on high-dose steroids can cause patients to fatigue a little bit more quickly, and it can make recovering between exercises or bouts of exercise a little bit more challenging. We want to make sure that we're adjusting intensity based on where you're at in your treatment cycle.

(17:50): One way to conserve energy is to create a daily schedule. That means making sure that you're planning out your day, building rest breaks into your day, so that your activity is spaced out. Especially when I have acute GVHD patients in the hospital that are on this new really high steroid dose to get things under control, I always educate about getting up in the morning. If you're feeling good, I don't want you to order breakfast and then hop in a shower and eat and go for a walk. We want to make sure that you're spreading that activity out over the course of the day, and that we're building in rest breaks so that you're able to recover. We don't think about the shower as a bout of exercise, but you're expending energy and it's going to take you some time to recover from that.

(18:41): Some other considerations. Like we had talked about already, fall risk. You want to make sure that your rehab providers are assessing your walking, your balance, letting your provider know any history of neuropathy that you have before progressing mobility. All of these things are going to put you at a higher risk for having a fall. Some of the other side effects like we talked about, the osteoporosis, the thinning of the skin, having a fall while you're actively going through GVHD treatment on these high-dose steroids, can lead to a lot of medical complications.

(19:17): Your rehab provider might issue you a cane or a walker to make sure that you're able to safely get up and get around. And if you feel like you're unsafe mobilizing and that it hasn't been made an option for you, that's always something that you can ask about: “Is there any equipment that you can use to make sure that you're able to safely mobilize?”

(19:39): We talked about bone health a little bit earlier, but just to hammer that point home, being on high-dose steroids for a long time can lead to decreased bone density, and so we especially want to let your doctors know if you're starting to have pain in your hips or your groin, as this can be a sign of a condition called avascular necrosis, which we see in the hip and the head of the femur, a site that's very common for fracture.

(20:10): Hydration and electrolyte balance during exercise is very important for patients with GI GVHD. For patients who have gastrointestinal or GI graft-versus-host disease - this is the stomach and the intestines - GVHD can cause issues into the colon and the bowel, the mouth, and the esophagus. Hydration and electrolyte balance are very important because these patients that have GI GVHD, they tend to have a lot of diarrhea.

(20:40): And the inflammation of the lining of the stomach and the intestines causes really poor absorption of anything that they're taking into their body. This makes it harder for patients to adequately hydrate themselves, as even water can upset the lining of their stomach and cause vomiting or diarrhea.

(21:03): For patients with lung GVHD, we want to make sure that you're using one of those little pulse ox machines to monitor your O2 saturations while you're exercising. We want to keep exercise on the low-intensity side with lung GVHD because of that risk for developing respiratory issues.

(21:20): For our patients with skin GVHD, we want to avoid excessive friction or tight clothing. With these patients in the hospital, we want to make sure that when we're getting a patient back into bed that they're in a good position, so that we don't have to do a bunch of rolling or use those chux or repositioning sheets to slide them in bed, because that friction is going to cause skin breakdown. And any skin breakdown is going to be another chance for an opportunistic infection to get into their system.

(21:58): Patients who have graft-versus-host disease in their muscles and their joints, or have skin GVHD, should do stretching and doing range-of-motion exercises to prevent joint contractures. So that's where those joints start to get stiff and tight, and we lose some of that range of motion that allows us to go through our day-to-day activities and be able to manage things independently.

(22:27): After a diagnosis of GVHD, any type of exercise can be safe as long as patients follow precautions. What should you be doing for exercise if you have this new diagnosis of graft-versus-host disease? Really any kind of exercise, any kind of activity is going to be safe as long as we're following precautions. We'll talk about the precautions for each of these exercise types as we go through the next few slides.

(22:50): Aerobic exercise, going for walks, resistive exercise, making sure that we're maintaining your strength, and those flexibility and balance-training exercises to make sure that we're keeping you moving, able to engage in everyday activities, your ADLs (Activities of Daily Living), and we're preventing those falls and things like that.

(23:12): Aerobic exercises can help with fatigue. With aerobic exercise, the goal is to improve your endurance, to stave off some of that treatment-related fatigue that we see with any kind of cancer treatment, but especially with the new graft-versus-host disease diagnosis that's being treated with steroids. We want to improve endurance to help reduce that treatment-related fatigue.

(23:32): Some of our guidelines for aerobic exercise - we want to keep that intensity a little bit on the moderate side, you're going to see this RPE (rate of perceived exertion) scale. We'll talk about that a little bit more on the next slide, but it's a zero to 10 scale. We want you to stay somewhere in the middle, in that four to six range.

(23:54): We want to aim for 20 to 30 minutes per session, three to five days per week. Again, we want to keep these things more on the low-impact side, joint-friendly activities, walking, stationary bike. If you don't have any ports or PICC lines or anything, and your doctor says it's okay to be in the water, then swimming is a great option for aerobic exercise to keep things more on the low-impact side.

(24:22): We know there's concerns with being immunosuppressed and being in the water. Different conditions like skin GVHD that may react poorly to the chlorine that's in swimming pools. If you're going to be in the water, make sure that you have that clearance from your doctor first.

(24:47): This is the RPE, or rate of perceived exertion scale. This is the modified board scale. It's a zero to 10 rating and it's really just, “how hard am I working?” Zero being very, very easy, almost resting, to 10 being your maximal effort that you can put into an activity.

(25:08): We want patients to aim for that four to six range, that ‘somewhat hard’ to ‘hard’ rating, but you should still be able to carry on a conversation while you're up and walking around. If you're finding yourself short of breath, having trouble continuing sentences or having to catch your breath between words, it's a good indicator that it's time to sit and take a break.

(25:39): With resistive exercise, the big goal is to help counteract steroid-induced muscle atrophy. We want to keep those large muscles strong. The guidelines for resistive exercise with the GVHD diagnosis are to keep things a little bit lower on the frequency. Two to three times a week, not working these muscles on consecutive days, because you're going to have a little bit harder time recovering after bouts of exercise.

(26:10): We talked about weakness in those glutes and those quads. If those muscles are feeling weak from your exercises and then you try to go for a walk or try to climb up the stairs, that's going to put you at risk for knee-buckling, having a fall. Those are things we want to avoid.

(26:30): Intensity-wise, we want to keep this on that ‘low to moderate’ resistance level, so somewhere around 30 to 50% of a for a maximum of one repetition. You should be able to do eight to 12 reps of an exercise without seeing your form break down. You should be able to maintain good posture, good muscle control while you're going through those exercises. 10 to 15 reps of an exercise, one or two sets, low to moderate intensity. We want to make sure that you're able to recover after exercise. And we want to focus on those large muscle groups, the hips, the quads, the shoulders, and I'll have some examples of exercises coming up in the next couple of slides.

(27:21): There are many types of resistive exercise patients can do to strengthen different parts of the body. Some exercise examples for resistive exercise. For working on the hips and the thighs, sit-to-stand from a chair is a great option. Doing step-ups on a small step. If you're back in the gym doing exercises, or in a physical therapy clinic, doing a seated leg press or a leg extension with some added resistance to it. We always want to start with body weight exercise and add resistance, whether that's bands or weights, to the extent you can tolerate.

(27:56): For the shoulders and the arms, using light dumbbells or resistance bands to perform rows or shoulder presses. Doing pushups against a wall or a countertop if you're not able to get down on the floor to do pushups.

(28:10): We want to avoid excessive overhead lifting if we have any GVHD around the shoulder. We just want to be cautious of lifting weights overhead if you don't have the strength and stability in that shoulder. We don't want you dropping something on your head.

(28:24): I always tend to, especially in the hospital, give patients bands, the elastic resistance bands to be able to do exercises with. It provides a good amount of resistance, but it allows us to do things a little bit safer.

(28:43): Some core and trunk stability exercises. Doing things like bridging, where you're lying on your back and picking your hips up. Core activation, things like seated marching, are always a great option. And we really want to focus more on core control. That nice tall posture, bringing that belly button in towards the spine. We're doing these exercises to keep that core nice and strong, but we're not going to put you at risk for having a fall.

(29:19): Looking down at the ankles and the feet, things like seated heel raises, pulling your toes back towards your face with a band around the toes, or working on some of these balance exercises, are going to keep those calves strong, help you maintain your strength in your feet and your ankles for fall prevention and gait stability.

(29:43): Some pictures of these exercises, moving from left to right on your screen. We have that bridging, laying down and picking the hips up. The sit-to-stands from the chair, the wall pushups and those banded rows. These are all great options. If you're unsure of where to start with exercise, please have your medical team put in a consult for physical therapy. We're always more than happy to come help patients exercise and be able to exercise safely.

(30:12): Flexibility exercises can help in avoiding falls. With flexibility, our goal is to maintain joint mobility, prevent contractures in those soft tissues, so the skin or the muscles, the tendons around the joint, and we want to use our flexibility to help reduce falls. Looking at the shoulders and the arms, doing an overhead reach or doing a pec stretch at a doorway. We want to avoid aggressive stretching if we have a diagnosis of skin graft-versus-host disease. Again, just that fragility of the skin, we don't want to put a lot of tension on it.

(30:49): With our hips and our legs, doing a hamstring stretch, stretching your hip flexors, keeping your calves and your feet and your ankles loose. All of those things are going to make sure that you're able to get up and walk and maintain that nice posture without having tightness in your lower extremities.

(31:09): With the feet and the ankles doing a standing calf stretch, that runner's lunge stretch against the wall where you have one leg forward and one leg back. When you're sitting or lying down, moving your feet up and down, or doing ankle circles to make sure that we're maintaining that range of motion in all directions. Keeping those feet and ankles nice and loose helps make sure that we're able to balance and get up and walk around, that we have normal gait mechanics so that we're not having that risk for falls.

(31:42): Just some examples here. That first one, sitting in the chair, one leg out, leaning forward, stretching those hamstrings. In the second, the one in the middle there, just holding onto that door jamb and turning away, stretching that shoulder and pec. And that last one, that runner's lunge stretch: one foot forward, one foot back, trying to get that back heel to the ground to stretch those calves out.

(32:12): Balance training can help you do daily activities safely and avoid falls. The last one is balance training. There's ways that we can start slow and modify things, make things more challenging, and there's some things to slowly progress from a two-legged stance to working on a single-limb stance, to improve both our statics, or our balance when we're standing still; think about when you're doing your oral care at the sink or if you're back home when you're standing at the sink, washing dishes, something like that. And our dynamic stability, or our stability when we're actually moving around.

(32:54): Looking at exercises like tandem stance, where we try to hold that heel-to-toe position between our two feet. This is going to improve static balance. And we can use a stable surface, or an unstable surface, like having someone stand on one of those half balls or a squishy pad. Using your arms or your hands as support with these exercises allows you to slowly progress things. Find that comfortable position, safely work on your balance without putting yourself at risk for having a fall.

(33:29): Doing things like standing on one leg. Start small - five, 10 seconds at a time - and just slowly work up as you feel like that balance is improving. Single limb stance is great for improving our dynamic stability. When we're walking we spend most of our time on one foot as we transition from foot to foot, so we want to make sure that we're able to do that safely.

(33:52): Weight-shifting side to side is going to improve our lateral stability. Think about our community ambulators that are out and about in the community, they need to move around people. Or if they get bumped into, they have to be able to take a step and keep themselves safe.

(34:08): Seated reaching tasks improve your ability to do seated ADLs, activities of daily living. Seated exercise, even things like brushing your teeth, reaching for something on a countertop, making sure that we're keeping that core nice and strong.

(34:30): Looking at some of these balance exercises - holding onto a table, holding onto a countertop while you're doing tandem stance, that's heel toe, or when you're doing a single limb stance, like there in the middle, standing on one foot. Start safely holding onto a surface and then slowly remove that support. The last one there, that lateral shifting side to side, working on that dynamic stability as you get your body weight outside of your base of support.

(35:09): Just some of the key takeaways and recommendations. Graft-versus-host disease, and steroid myopathy specifically, can significantly impact mobility and strength. We want to make sure that if you're having these issues related to your treatment, that you're reaching out to your care team, you're asking your care team for that recommendation for physical therapy, whether that's in the hospital or home health, or outpatient PT, so that we can start to address some of these mobility issues.

(35:41): Safe exercise prescription should be individualized and evidence based. We shouldn't be a cookie-cutter program. If someone has a diagnosis of graft-versus-host disease, what areas of your body are affected, what organ systems? If you're on corticosteroids, do you have a specific muscle group that we need to target? We really want to know what your concerns are as a patient, and make an individualized exercise plan for you.

(36:13): A multidisciplinary approach is essential. The communication between your medical team, your physical therapist, your occupational therapist, your dietitian. We want to make sure that everyone is on the same page so that we can optimize your recovery. PT (physical therapy) can help with interventions that are going to improve your function, your quality of life, and your long-term outcomes of treatment.

(36:41): If at any time after a diagnosis of graft-versus-host disease you have questions, you have concerns about your strength, your mobility, your ability to engage in everyday activities or recreational activities that you enjoy, please have your team put in the referral for physical therapy. We are always more than willing to help patients regain that sense of control of their lives.

(37:09): These are the references that I pulled statistics from. Thank you very much. I think we've got plenty of time to answer some questions.

(37:22): Marsha Seligman: Thank you for this excellent presentation. We will now begin the question and answer session.

Question and Answer Session

(37:37): The first question is, “Does exercise before, during, and after treatment reduce the risk of developing GVHD or the severity of GVHD?”

(37:50): Adam Matichak: Unfortunately, exercise is not going to reduce the risk of developing graft-versus-host disease or the severity of it. The risk of GVHD and the severity of GVHD are going to be more related to medical complications from your stem cell transplant. The really important role of physical therapy, exercise, and activity after a graft-versus-host disease diagnosis is to make sure that we keep you strong, we keep you mobile, and most importantly that we keep you safe when you're up and moving around.

(38:27): Marsha Seligman: “Are there any exercises that can help with swallowing problems due to GVHD?”

(38:37): Adam Matichak: I'm going to defer this one to speech therapy. If we're having issues with swallowing, especially if a patient is in the hospital, those mechanics are going to be much more easily addressed by a speech and language pathologist. If you're not in the hospital, make sure that your medical team is making that referral to a speech and language pathologist. They can do swallow studies; they can give you exercises to make sure that they're addressing what the specific concern is with your swallow.

(39:14): Marsha Seligman: “I have fasciitis that really impacts my quality of life. Would any type of exercise help with this?”

(39:23): Adam Matichak: Yes. Fasciitis is basically inflammation of the fascia that covers our muscles, and so any kind of gentle stretching, range-of-motion routine helps alleviate some of those symptoms. When we have patients that have fasciitis, whether that is in the connective tissue around the muscle, or whether that starts to get into the layers of skin, one concern is those joint contractures. We want to make sure that patients are stretching daily, that they're staying loose, especially if they have a specific area of their body that is being affected by that fasciitis or that skin tightness from graft-versus-host disease of the skin. Work with your rehab provider, make sure that that intervention program is targeted for your specific needs.

(40:15): Marsha Seligman: “What about people who have GVHD manifesting as chronic fatigue? What is the goal in exercise? I am not on any GVHD meds and have none of the GVHD specified in this presentation other than chronic fatigue, and muscle spasms and cramps.”

(40:35): Adam Matichak: I think chronic fatigue as a cancer patient is probably one of the hardest things that you deal with on a day-to-day basis. One of the interventions that we use to manage that fatigue is low-intensity exercise. It might be worth working with either a physical therapist or an exercise physiologist to look at heart rate variability during training, so that you're able to better manage your symptoms. It gives you a better idea of what a good working range is for you, so that you can monitor your exercise and your exertion level appropriately. We want to make sure that we're getting that good rest in between sessions, that we're not overexerting because, with this manifestation of graft-versus-host disease. It's that inability to fully recover between bouts of exercise that we get concerned about.

(41:40): Marsha Seligman: “Can avascular necrosis (AVN) be seen in the shoulder joint? What is the testing to diagnose AVN?”

(41:48): Adam Matichak: Yes, we can see avascular necrosis in the hips or the shoulders. Those are the two most common places that we see. It is those wide-range-of-motion ball and socket joints. The testing for avascular necrosis is an X-ray, to see the bone loss and the demineralization.

(42:12): Marsha Seligman: “What exercises do you recommend for leg muscle tightness? No GVHD meds, and no GVHD mentioned in this presentation, but my calf muscles get tighter and tighter every year, eight years post-bone marrow transplant.”

(42:29): Adam Matichak: Yeah, the stretching. One of the issues that we tend to see with patients that don't have that guidance from a physical therapist or an exercise physiologist is they focus on the one area that they're having an issue. If you're having a lot of calf tightness, you can stretch and stretch and stretch, but if we're not addressing that whole chain - a joint or a muscle can also be affected by dysfunction, above or below it. If you're doing your calf stretching daily, but still having a lot of calf tightness, we also might need to look at the range of motion you have around your ankle, looking at any loss of range of motion or stiffness in the hamstrings or the glutes or the low back. Making sure that we're addressing the whole body, even though it's only manifesting as this tightness in a single muscle group.

(43:31): Marsha Seligman: “Is there any overall lifestyle that can lessen the possibility of experiencing GVHD? How much is brought on by ourselves without us knowing it?”

(43:43): Adam Matichak: No, there's no lifestyle modification that you can make to lessen the chances of developing graft-versus-host disease. It has more to do with your transplant type. So the higher your HLA match is with your donor, the less likely you are to develop graft-versus-host disease after transplant. But having a donor type like an umbilical cord transplant, or a haplo transplant where we're only seeing that 50% match, because we're having a hard time finding a suitable donor for a patient, is going to put patients at higher risk for developing graft-versus-host disease. It has more to do with the medical side of things than it does with lifestyle or exercise or diet.

(44:34): Marsha Seligman: “The next person is asking about ads that they've seen for deep tissue massage machines and they said they're pretty expensive, but do they help?”

(44:46): Adam Matichak: My recommendation anytime that a patient comes to me and says, "I've seen this," or "Another patient has told me that this modality works for them," whether it is a massage machine, electrical stimulation, hot pack, cold pack, any modality that we add onto the treatment that we're doing as a rehab team, it is going to be very patient specific. There's no one-size-fits-all when we're treating these things. It's something that we have to figure out through trial and error. I don’t recommend things that are a huge out-of-pocket expense for patients, because the likelihood of it working is usually pretty low. The risk/reward usually doesn't match how much of an out-of-pocket expense that is for a patient.

(45:41): There's a lot that we can do through self-soft-tissue mobilization, so teaching patients how to massage themselves, teaching caregivers how to do a proper massage so that they can have that support at home. But I am always a little bit hesitant to recommend a piece of equipment, especially one that comes with a high out-of-pocket price tag for a patient.

(46:06): Marsha Seligman: The next question asks, “they have issues with bending the knee past 90 degrees, putting on shoes and socks, and going up and down stairs. The steroids have helped a lot, but had nasty side effects, and it took a long time to get off of them. The issues are back, and physical therapy helps some, but they're still restricted with motion and flexibilities. Having issues in major joints, their hips, their shoulders, their knees. They think they need massage therapy and possibly chiropractic help to free up the joints. Do you have any thoughts, and is this something that insurance would cover, and should this be done in conjunction with physical therapy? And they'd like to know if there's anywhere they can find knowledgeable people in their area. They're in Connecticut?”  

(47:10): Adam Matichak: Some of those joint mobility issues can be caused by those joint contractures that we see with shortening or tightening of the structures around those joints. Whether that is a skin issue, or a muscle issue, it's hard to diagnose these things through a couple of words on the screen. This is something to refer back to your rehab provider. It sounds like you've used PT in the past and it's been helpful. So that's something that I would encourage you to continue to do.

(47:49): There is a directory of graft-versus-host disease rehab providers on the BMT InfoNet site that you can use to help find someone in your area. And one person that I know personally on that site that does practice in Connecticut is Scott Capozza at the Yale Cancer Institute. So that would be a good place to start for any recommendations for people in Connecticut. As far as other healthcare providers, chiropractic care or anything like that, I am always all about collaboration as long as the other providers are aware of your cancer history and the treatments that you've been through.

(48:32): Marsha Seligman: “Are there any exercises that specifically help people with lung GVHD? Is pulmonary rehab something they should consider? If so, please compare what happens during pulmonary rehab.”

(48:48): Adam Matichak: Exercises that we do with patients with lung GVHD, from the physical therapy side, we focus a lot on the core strength. Sometimes it's a pelvic floor issue. Our thoracic, our chest, and our abdomen - those cavities are pressure-based systems, so any weakness in the core muscles, any weakness in the pelvic floor, any diaphragmatic weakness, those things all need to work together.

(49:16): We're going to start with that strength assessment and see if there's anywhere along that chain that could be causing problems with being able to take a deep breath, or to manage your breathing. We're going to focus a lot on postural strengthening, making sure that we're opening up that rib cage so that those lungs have some room to expand. Working on taking those deep breaths, using pursed lip breathing or box breathing, that slow inhale through the nose, the slow exhale through the mouth to make sure that we're managing your breathing while you're exercising.

(49:54): If you're having restrictive lung issues and pulmonary rehab is an option for you, most pulmonary rehab is done by a respiratory therapist and they're going to use different machines, different modalities to work on strengthening your airways, so being able to work on the elasticity of your lung tissue and to provide that more in-depth, more targeted therapy.

(50:29): Marsha Seligman: “Can you talk about TENS therapy and whether it helps GVHD patients?”

(50:36): Adam Matichak: Yes. There's another question here about scrambler therapy, and I'm going to lump them together. Scrambler therapy or TENS therapy, they're transcutaneous electrical stimulation devices, so they're little pads that you put on your skin and then the machine provides an electrical current. There is very little research that says that it helps with the side effects of graft-versus-host disease or the symptoms of graft-versus-host disease, but they are great modalities for managing chronic pain.

(51:11): If you're having issues with pain related to your GVHD or related to any other treatments or side effects that you have from your treatment, as long as it is cleared by your medical team, there are these sticky electrode pads that have to go on your skin. We want to make sure that you're not going to have a negative reaction to those being stuck on your skin, especially our patients with graft-versus-host disease of the skin. As long as you have clearance from your doctor to use those electric modalities for pain management, that's going to be where you get the most benefit from those things.

(51:49): Marsha Seligman: “Someone would like to know how you find a pelvic floor exercise therapist to help with vaginal GVHD?”

(52:03): Adam Matichak: I think the easiest way to do this in your area is to go to abpts.org, that is the American Board of Physical Therapy Specialists. We have a directory of specialists on that website. You can search by your zip code and the distance that you're willing to travel and look for women's health specialists. Some people are dual board-certified in oncologic physical therapy and women's health, and those are the people that you want to target if you have one in your area. If you don't have somebody in your area, you can always reach out to one of the women's health specialists on the ABPTS website, and see if they can find someone in your area that has the skills that you're looking for. I think that's the easiest way to go about that.

(53:04): Marsha Seligman: Closing. On behalf of BMT InfoNet and our partners, I'd like to thank Mr. Matichak for his very helpful presentation. And thank you, the audience, for your excellent questions. Please contact BMT InfoNet if we can help you in any way.