Thanks to our episode sponsor Melanie J. House, DPT, NCS Clinical Specialist Department of Rehabilitation Therapies University of Iowa Hospitals and Clinics Interview Date: April 26, 2016 Summary Myeloma treatment can be physically brutal. Melanie House is a physical therapist who shares her approach to recovery for patients in treatment and post-transplant. She tells us that laying in bed for just 35 days can create 20-25% loss in muscle strength, so staying strong is critical. She teaches us why we have decreased strength (thanks dex and chemo) and what patients can specifically do about it. She encourages patients to share their side effects with their health care team so that they are aware how the treatments are affecting quality of life. When deciding how hard to push, she tells us to let the data decide: Take a blood pressure (lying down, sitting AND standing) and watch your heart rate to know when it's too much. She also tells us how to test for balance, prevent falls and reduce pain, especially in the back. Her caregiving approach is a great example - remove barriers for the patient and use the data to decide whether a patient should be encouraged to get moving or play it safe and exercise in bed. There is so much to learn in this very important show about getting ourselves back on track. Melanie J. House, DPT, NCS on Myeloma Crowd Radio
Jenny: Welcome to today’s episode of Myeloma Crowd Radio, a show that connects patients with myeloma researchers. I'm your host Jenny Ahlstrom.
We'd like to thank today's episode sponsor, Takeda Oncology for their support.
Now we are wrapping up the first segment of our Muscles for Myeloma campaign which ran through March and April. This is a fitness campaign encouraging myeloma patients to get more fit. We did this because we heard many doctors talking about how they were segmenting patients into fitness categories (fit, unfit and frail) and basing treatment options based on those fitness levels. Our wonderful sponsors have been Sanofi, Takeda Oncology and Celgene Corporation for that campaign. So we're grateful to them and we've had hundreds of you getting fit in the last couple of months and also helping raise funds for the Myeloma Crowd Research Initiative. So a big THANK YOU to all those who have participated. (We will be leaving this campaign open indefinitely for those of you who wish to stay active and create your own events and teams) We also have another important announcement. We are hosting day long patient meetings for patients to meet up with top myeloma experts. The first will be held on May 7th in Salt Lake and the second will be held at June 18th in Saint Louis with future meetings to come. Three experts will be attending in Salt Lake and about six will be attending in Saint Louis. These meetings will highlight topics like immunotherapies, high risk genetics and effective strategies for relapsed/refractory myeloma patients. The meetings will have extra focus for high-risk patients because many of the therapies will fail them earlier than other patients. Because we also all become high risk as our disease progresses, these meetings are really for us all. So check out the Myeloma Crowd website and then you can register today to attend for some truly, incredibly important information. Now on to today's show. As part of the Muscles for Myeloma Campaign, we met up with Melanie House who is a physical therapist at the University Iowa. She attended Pat's Myeloma Survival School last month and she was on hand to talk about how to take care of yourself during and after treatments. A lot of myeloma patients who go through treatment think to ourselves, what just happened to me? I hurt or I feel so tired or we ask "How do I get my body back?" So here to help us understand more about that is Melanie House. So welcome, Melanie.
Melanie: Thank you so much.
Jenny: Let me just give a little brief introduction for you before we get started. Melanie House is a clinical specialist for the Adult Bone Marrow Transplant, Cardiology, Organ Transplant, Trauma, Gastrointestinal, Colorectal and Vascular Surgery Services and Outpatient Wheelchair Seating at the University of Iowa. She is on the faculty of the graduate program for the University in Physical Therapy and Rehabilitation Science. She recently won the University of Iowa Nursing Recognition Award for Collaboration on Quality Improvement in 2015. She is a member of the Acute Care Section of the American Physical Therapy Association and she is a regular speaker at events including Pat's Myeloma Survival School. Melanie, a lot of patients just want to know, what is it about myeloma treatment or having myeloma that makes us feel so lousy? That's a very broad question but I know we'll get into a few more details.
Melanie: Yes, I think we can break this down into some different, specific areas that depend on the point of your care that you are in. So my area of focus: I typically am working with people coming in for transplant and I'm seeing them of course, if they return to us with any complications. And here at the University, we have a program where folks are signing up for tandem transplants which is back-to-back transplants within a three-month time period. I mean they complete first transplant and come back three months later. And so that's the main group that I am familiar with. It is more of the in-patient side and preparing them to discharge to home. So I just wanted to get that out there. And just real quick, I wanted to say that any of the recommendations that I talk about here, they are not meant to be an automatic cure-all, that people listening in can turn around and start doing these things. You should absolutely meet with your local practitioner, work with a qualified physical therapist if it's exercise so that you are doing things correctly, so you don't cause yourself more harm. So specifically, I think the first thing that I would just want to talk about is decreased strength. So we can quantify strength in a lot of different ways but specifically if we look at what happens to the muscle when you are undergoing treatment for multiple myeloma, the first thing I would point out is dexamethasone is going to be a regular intervention that you'll be taking. And that is a steroid that unlike the steroids that home run sluggers are using which are anabolic steroids which makes the muscles bigger, the corticosteroid is catabolic. So it breaks down muscle and it actually prevents new muscle from being built. A person might notice that they are having difficulty rising from the chair or the toilet or they may even not realize they're having difficulty because they are relying on their arms to do this. Some of my patients noticed that they have trouble clearing a step or clearing their toes. They might have trouble flexing the hip enough to place their foot on a step. Those are some kind of early indicators that a person may be experiencing corticosteroid induced myopathy.
Jenny: And do you see that in different dosing too? Because I know some patients are on a heavier dose of dexamethasone than others.
Melanie: Right. So the thing that I have observed is it can occur with high dose corticosteroid over a short period or even people who are on low dose, chronic corticosteroid and I see that with some of my patients I have worked with in other areas such as solid organ transplant (so liver and renal transplant patients). You see it with your COPD population that's on chronic steroids. And so it is something that does not have to be at a high dose to have the effect.
Jenny: Is it an accumulative effect as well?
Melanie: What I would point out is that for a lot of my patients (we're working together in the in-patient side and this might be patients other than multiple myeloma diagnosis that are also taking this drug), they would say to me "Ugh, you know they told me they are going to cut back on my steroids today." The first thing I informed them of is first of all, that's wonderful. Thank goodness it's going to make our work easier but we shouldn't expect to see that benefit tomorrow. I see almost about a week's lag time even before I would say I'm starting to see we're turning the corner with improving functional strength. And that's just based on my observation in this limited setting.
Jenny: Is there anything else about Dex that you want to share?
Melanie: You know what, I'm not a pharmacist, so I don't really have too much more that I would say about Dex other than I would encourage patients, you are consumers, you are people that are undergoing treatment to benefit the quality of your life and give you more quality base of living that you need to be vocal if you are finding changes in your body that are causing you to lose your quality of life which could be the level of dexamethasone. It could be even sometimes doctors can back off a little bit on intensity or the type of chemotherapies to prevent severity of peripheral neuropathies. You need to vocalize that. Don't just assume that you should take the full brunt of whatever the complication might be because we have to find a balance.
Jenny: I agree. I think for most patients, when we start with therapy, sometimes side effects happen to us and we kind of think, "Well this is just part of going through this treatment. So I'm not going to say anything to my doctor because doesn't everybody have this happening to them?" And maybe I'm just going to sound like a whiner or something but I think what you are saying is, is that.
Melanie: Yes, and I think to take that a step further, if you go to your physician or your nurse practitioner, that's your first encounter and you say, "Look I just wanted you to know that I'm really noticing I have trouble with these different things whether it's getting up out of a chair or tingling and numbness from the chemotherapy" and you need to really tell them, "Look, I'm really worried about this. What can be done? Would it help me to work with a physical therapist to address these balance and strength concerns proactively and what can you do on your end? Can this be changed in any way? I'm just concerned about my long-term function."
Jenny: I agree, and the sooner the better. I don't think anyone will call you whiner. I should have spoken up much earlier and I think dexamethasone is probably everyone's least favorite drug that they are taking and I even wrote a song about my love-hate relationship with Dexamethasone because it's so awful.
Melanie: Did your song include anything about how hyper you were when you were on the high dose steroid and you could have cleaned your house in half an hour? That's one other thing about my acute care patients as sometimes when they get that burst of a high dose corticosteroid, I'd literally can see them coming down the hallway and know that they're on steroids today like their pace is faster, they're talking really fast. They're like oh, I could do anything. Can you show me more exercises, blah, blah, blah and then the next day you know, crash. So that's another thing to be cautious about is that is sort of a front end. Some people will think it's a benefit but again, you're going to have the backend consequence potentially of breaking down muscle.
Jenny: And I think the more that we understand, what's normal, what's expected when we take some of these things, it's kind of comforting. I think it's very comforting for patients to go oh, this is normal, this is how everyone feels. Everyone gets really crabby on the dex and feels like they are OCD about cleaning their bathroom. But let's talk about other things that affect decreased strength because dexamethasone is one of those things but you have some other things on your list as well.
Melanie: Yes. When I meet my patients, I'm actually consulted to meet with them when they first arrive. So I usually can start my evaluation within 24 to 48 hours of their admission and I always know that I have a bit more of a challenge ahead of me when I walk in and I see the patient who feels absolutely fine laying in a hospital bed, watching television and they are in their fuzzy jammies and their bunny slippers. That's the individual that I'm going to spend the extra time emphasizing that today is the day when we need to get moving. They need to be as active today as they would be had they been at home. If you would have walked the dog three times today, let's get out and walk the dog in the hallway because what studies have shown and we thank our federal government and our tax dollars for this but we have paid healthy young men, 18 to 21 years old to lay in bed for 35 to 55 days and do nothing. This is so that we could determine the effects of weightlessness for space travel. And these young healthy men who are not getting chemotherapy, not getting dexamethasone, they will show upwards of 20 to 25% loss of strength in their lower leg muscles and upwards of 36% muscle mass loss for example in the calf muscle. I come with the hard evidence with my patients if I get any push back, people saying, well, I don't have any concerns about stairs. I can do those fine or you know, I was healthy coming in. I'm not worried about it. I will come around and hit them with some of the available evidence of the secondary complications of just being immobile. And then nutrition obviously is a big factor. If you read even the basics on nutrition, if our muscles are demanding and our whole body is demanding energy but our brain is the control center. And if the brain recognizes there is not enough energy stores available in the body, it will authorize the breakdown of muscle so that it gets fed. So those are some of the key things that I think about that contribute to the loss of strength. I honestly can tell you this is again I'm sure available evidence if we look at what chemotherapy side effects are but I meet people everyday coming in for transplant who tell me I have lost 20 pounds, 30 pounds of muscle mass. Since starting their initial treatment and they're not even in for transplant yet. So that suggests to me that it's more like that chemotherapy no doubt is a cytotoxic. That means it kills cells and that that is damaging to the muscles as well because many of those people, they are not on very much for steroids. They're still eating fine. I can't really find a good explanation. So that's yet another thing that is a necessary consequence. I mean you have to have the chemotherapy.
Jenny: A couple of questions on that. When you said the healthy young men were losing strength. How many days was that again?
Melanie: Well, there is a couple of different studies that I quote and the one study was 35 days and the other one was 55 days and there are studies that are shorter duration but these two studies just really looked at more of the variables that I was looking at as far as loss of muscle mass and loss of actual strength.
Jenny: How long is the average in-patients stay? I know a lot of places do outpatient stem cell transplants but what's the average stay for an inpatient stem cell transplant for myeloma patient?
Melanie: Yes, the average stay, I mean I didn't look this information up, so don't quote me but I think we tell folks they need to really be thinking somewhere up to three weeks would be a pretty realistic average and we do bring people in ahead of time for most of our transplants, so they come in and do all their pre-med work-up before they actually get the transplant. So they're with us a good four or five days probably before transplant.
Jenny: So you are almost to that 35 days.
Melanie: Yes, and it certainly can stretch out more for folks that might have other things. I usually keep people to where they need to be physically but they are challenged with eating enough, they are challenged with drinking enough to be able to get off the IVs and go home.
Jenny: Okay. Well, your healthy young men might sound like my teenage sons on the weekend.
Jenny: We need to get everyone up and moving which is why we created the Muscles for Myeloma Campaign. It was just really critical. This three-week time when you're having transplant, you feel the worst. You don't really want to get up and get moving. You kind of want to say, "You know I really just would rather lie here. Thank you very much and have somebody come and bring me some food."
Melanie: That reminds me of something you had asked me ahead of time. How do you motivate people who otherwise just can't. The thought of getting up is enough to wear them out. And I find that what really works for my patients is you know, I come into the room with a spirit of sympathy or empathy and knowing what they are up against. I have seen it in so many people and I know as they approach 0.0 for white blood cell count that the mere thought of getting up is exhausting. For those patients who want to do something they really do want to get up -- you know I'm right there putting their slippers on for them. I am helping them with their hand hygiene and putting the gloves on and managing the lines and IV pole and just removing all other possible barriers that could slow them down and that has shown to be really effective because literally if I stood back and said well, they should put their own shoes on. They should do these themselves. They should do that. Honestly, some of them would have already just lay back down. And so I think by being supportive and acknowledging that you are really going to fatigue quickly. Let's really conserve our energy for the important thing that we want to accomplish here and also setting more realistic goals. So when they first check in with me, I'm telling them they need to be out walking three times a day and to do a minimum of about a thousand feet each walk and that is a minimum, but I set that minimum so that it's not so jarring to them when those counts get low and they look at that and go oh my, gosh. I'm failing. It's just considered very minimal community distance. So being realistic with them and having a backup plan and recognizing what is possible today and the little victories that we can accomplish today and this is a temporary state that we are getting through.
Jenny: So I think that's helpful advice for caregivers too as we have caregivers listening in and they want to help the myeloma patients as much as possible and they want to motivate them or encourage them so they could say let's go on a walk together and I'll help you get ready and we'll keep it short, and then we'll try to do it a little more tomorrow. And then I know there are certain days during transplant where you are just really slammed. Your counts are at their lowest and you need to be very cautious about your safety too. So when you say you have patients come in, do you stage when you are having them get up and move or do you wait until those critical days are over and then you start kind of building back up again or how do you handle that?
Melanie: Again the initial evaluation when I meet them, it is largely as educational session. I have my monologue that I go into. I mean I interview them about any issues they are coming in with, what things are limiting them in terms of strength or endurance or possibly pain issues or pre-existing problems and then letting them know here is what the introductory package is. This is what everyone on this unit is being asked to do and it's kind of a minimal expectation that you can do this and if there is any reason you cannot, let's talk about how we would modify this. And then moving forward, I can tell them that I am there as a resource to them. And if they have any questions or anything new comes up that I am to be paged but I will reappear without fail when their counts approach 0.0 because it's at that time when we really do need to revamp the program and I am probably teaching them some exercises to do in the room because something I should mention and I don't these are giving away secrets by any means and everybody needs to benefit from this. But if you look at the limited research that's been done on bone marrow transplant and exercise, the thing that I see that I feel is a shortfall for our patients is we're not really challenging their lower extremities enough for strength training. So you'll see a study where it says the patients got weaker while they were here whether they did therapy or not, they just got less weak if they were doing therapy. Those individuals were not doing a formalized strength training program. They were only doing a step program like eight-inch aerobic step if they weren't able to get out and walk. Well that's replacing aerobic. That's replacing strength training for aerobic.
Melanie: Yet it's just an afterthought. So I actually have instructed my patients on how to use the New Step that's a specific machine that is very well tolerated and very popular in clinic settings and we use it in a unique way. I don't ask them to use their arms at the same time. We're focused only on legs and I have found a way to get them to use their leg muscles in a way that simulates both going up some steps and coming down the steps. There are two different kinds of contractions and truly the one coming down the step is the one that has the potential to trigger increased muscle formation. So giving exercises that are sufficiently challenging that target the key muscles that we know that are risk of losing is really how I try to be efficient and respectful of the limited energy that they have.
Jenny: And if you're considering something in the room, and I have learned this doing this Muscles for Myeloma Campaign actually because I was researching different tips to email out to the group on a daily basis and writing different posts about it and that was consistent that this just follows consistently with what I read that if you had to choose between and a cardio and a strength training program, you are better off choosing the strength training program. Of course, both are important but for muscle loss and things like that and the strength training is by far the best for even weight loss too.
Melanie: Well that's absolutely true. In other populations, I found that to be true for people with spinal cord injury when you're rehabilitating them after spinal cord injury. It turns out that they actually can improve their endurance because in building in muscle, you build the vascular supply to the muscle and therefore in the process, the muscle, you're building and improving endurance while at the same time building strength.
Jenny: And when you look at, think about exercising even in a bed kind of situation, they are in your worst days. You want to just do something small to keep those lower extremities. Can you use bands? Do you ever do that with the patients?
Melanie: You know, I'm glad you asked because I just was dealing with this, this week. I have a patient who has got a different diagnosis but is in for transplant and he came up with it. I want to use this resistance band and watch and he was putting it around his foot and holding it with his hand and all I could picture was that band slipping off the end of his foot and snapping him right in the face. And truly we've had problems with injuries of that nature and these people have low platelets. So that's a concern and I also have a concern about the hygienic part of this resistance band, some people are in the hospital. You know when they fall on the floor, there you have static electricity. They pick up all kinds of dust and debris. So I don't actually give resistance bands. I do what we call closed chain strengthening which just means your foot is in contact with the earth or the bed. So the exercises that I have found that can get people through the 0.0 phase really is an exercise we call pelvic bridging that's going to work the glutes and the hamstrings and also quads and calves a little bit and something so simple as the straight leg raise and you would be amazed at how challenging that exercises for people as they hit 0.0. You can actually see their leg trembling and that is challenging for them to just do a straight leg raise. So those are my two go-to exercises once they hit 0.0. And the pelvic bridging, the only precaution I would offer there is many of my patients have compression fractures and they can be at the lumbar spine. So with the pelvic bridging, I truly have had probably a 95% tolerance rate for that exercise but I do have to be mindful that sometimes we have to not lift the pelvis up quite as high in order to not aggravate any of those former fractures or low back issues.
Jenny: Right. So we have talked about the factors of why we lose muscle, the strength and you have mentioned some things that you can do to ward off the muscle loss. What else do you see is important for patients to do? And is there a point where your platelets are at a certain level because I was reading something that said on a myeloma website actually that was saying if you're platelet count is at a certain level then maybe you shouldn't do any exercise because you can have internal bleeding. Is that ever a caution or you just don't see that?
Melanie: Well, so we obviously need to pay attention to clinical practice guidelines on this topic because not just for the patient's benefit but for your own legal concerns. So when you're prescribing exercise, it's no different than prescribing medicine. It has to be dosed properly. It has to be given at the right circumstances. And so exercise prescription in cancer is actually a topic. I have spoken on before and I apologize I don't have my reference sheet in front of me to tell you the name of this reference but it is commonly available and what they say is that you should not be doing high intensity aerobic exercise. If your hemoglobin level is below eight, I tell all my patients on the in-patient side, you will not be doing high intensity aerobic exercise the entire time you're here and likewise, when they discharge our physician team does not advocate for high intensity aerobic exercise for three months post-transplant. You should also not be doing that when your white cell count is below 0.5. Well I can tell you anybody below 0.5 isn't doing anything. I mean it's high intensity for them to try to get up and just get over to the commode. They could be short of breath. They could be tachycardic. Their heart rate could be quite high and then it also is recommended that the platelet level below 50 and we transfuse when people drop below 10 here. So those guidelines don't even become a factor because for my inpatients, I tell them you're not doing high intensity aerobic exercise period while you're under my care because I cannot find a reference anywhere that would support me in a court of law and I certainly don't want you to suffer the consequences of an adverse event. What is an adverse event that could happen? Well one thing is if your hemoglobin is low which we call anemia, which means you are usually while they're here, if you're at eight, that's like half of normal. And so when the count is that low, these people are at risk, they don't have the oxygen carrying capacity. So just because you are exercising and you're thinking oh, this feels good. The problem is that you have half the number of vehicles delivering oxygen to your muscles and your heart is a very important muscle that needs its' share. So that's really important and then of course the platelet level is the concern for your ability to clot and so I don't give my patients any type of ballistic exercises while they're undergoing transplant or even after transplant. We don't want them taking any risks where they could fall, cut themselves or cause an internal bleed from striking something.
Jenny: Well we have a lot of different topics. So I don't want to jump around too much. But I think we were going to be coming back to that.
Melanie: Balance was --
Jenny: I think we're going to move to balance but I think we'll come back to that a little bit because I remember we're talking to you about this at Pat's Beach Party and what you were saying was really important and that refers to blood pressure. So let's talk about balance first and then we can make sure we come back to this issue.
Melanie: Okay, absolutely. The thing that I always remind people of is that as humans, we have three systems we rely on for our balance and vision is one of them. Sensory function for the feedback we get from stretch receptors and pressure sensors and our muscles and joints in our lower legs and also our inner ear. So when you're going through transplant and you've had chemotherapy or diabetes that's given you peripheral neuropathy. Now you're down to really just two systems you can rely on. So I'm always reminding people that they need to turn on the lights. They need to have a well lit environment to see what they're doing make sure their eyes are open that they have their glasses on and especially in our hospital setting where everything changes all the time and they can't always predict where equipment will be or where their lines are and so those trip hazards and things right there in the room that could make them susceptible to falling. So decreased sensation and then what people don't realize too is that you usually also have decreases strength in your lower legs if you have peripheral neuropathy especially in your plantar flexors or your calf muscles. So that also affects your reaction time, how much you can move to clear your toe or spring up to make a quicker movement to avoid a fall. And so those are the two main things: decrease sensation, decrease strength but we address that really with my patients when I evaluate them I will be able to identify when they walk in front of me, I can usually tell if they have impaired balance or have the start of peripheral neuropathy simply based on how wide apart their feet are and this is an interesting thing if you ever go out to the mall and just sit there and watch people, you'll see folks and the way they walk. There are people that are walking just fine right in front of you but if you ask them to stand on one leg, they would tip right over. And so that is a test that I'll do is a single limb balance test strictly to see how well can they coordinate their balance on one leg and you wouldn't believe it but we could fill the room I'm in right now with research articles that have been done specifically to look at single limb balance and it's been studied so extensively that you can actually plug in the patient's gender, their age and how many seconds they could balance for on one leg and it will spit out a prediction of hat their likelihood is falling in the next certain time period.
Melanie: So it's something that I think some people get nervous about and they'll say oh my, gosh. You can't do that. These people could fall or if they fall, they are going to get hurt. Well unless you are put in a position with supervision to see that you have this deficit, a lot of people actually don't even realize it. They don't realize how much they're relying on a wide base of support or their IV pole. For example, that becomes something that my patients get quite dependent on for support while they're here and I sneak it away from them in that last week and sometimes I get some dirty looks like hey, what are you doing? I was holding onto that.
Jenny: That's really helpful to know that. That could be a kind of a good indicator that someone could do maybe standing close to something. So you're not putting yourself at risk at all but see how long you can balance.
Melanie: And again, I do urge the audience that's listening in to not just simply go over and try to stand in the middle of your living room on one leg because the 911 call that would be to follow would be devastating to me. I have my patients standing in the corner of a room so that they are cradled backward into either side and they have a chair in front of them with the chair back turned so that they start out with their fingertips supporting themselves on that chair back when they actually do the training. When we do the testing, it's a standardized position so the arms are folded across the chest but for the actual training, we set it up in a way that they can begin to start making good predictions and putting their foot down or putting their hand down to help prevent the fall but to build confidence and to build their ability to stand on one leg for at least ten seconds. That's the goal that I have chosen. The research literature uses 30 seconds and I think that's just a little excessive for everyday life. But when you think about walking, it truly is single limb balance over and over.
Jenny: When you talk about falls, what else can patients do to prevent falls. I know you went through kind of an extensive process, you were learning some new things that you were teaching people at your facility about fall prevention because it's something that you are measured on, right?
Melanie: It is.
Jenny: So how do you prevent falls?
Melanie: The falls are obviously a multi-factorial issue. We actually use a fall risk assessment scale that our nurses fill-out every shift and the topics that they are rating the patient on are elimination problems which means do they have urgent stools? Did they need to get up frequently? Is this a new problem? So they are likely to not have figured out how to do this without rushing or tripping or falling, their mobility and their ability to ambulate, so they are rated on how much assistance they need and whether one category is that they were to be on bed rest or unable to walk. Mental status is one of the things that you're rated on. Sensory function in other words really your ability to see well and that has to do with whether you're wearing glasses or not or if they have some eye condition that we can't correct for. Medications that affect your heart and vascular function, medications that affect how your brain functions so that could make you less alert. A narcotic would be an example that makes you less alert. There is different anti-anxiety medications and even anti-nausea medications that will depress your kind of level of alertness and also the timing since your last fall. And then the age of the patient is also included in the total score. But the other thing that we have done as an initiative at our unit here is we have initiated daily orthostatic hypotension vital signs. What does that long phrase mean? It means that every morning, every patient will be assessed. Their blood pressure and heart rate will be measured when they are laying flat, when they're sitting at the edge of the bed after two to three minutes and when they are standing after two to three minutes.
Jenny: Why the difference?
Melanie: Yeah, if the definition of that is if the person experiences greater than 20 millimeter mercury drop from either laying to sitting or from sitting or laying to standing and also if it has an associated greater than 20 beats per minute increase in their heart rate, that is considered a slam dunk. Yes, you are positive for orthostatic hypotension. The person then is rated on are they symptomatic? Are they not symptomatic? And that just means whether they complain of oh gosh, I feel lightheaded or some sort of a symptom like that. But the thing I want a caution people about is I've actually been doing this type of work for 21, almost 22 years and especially in patients with a more chronic type of an ailment, what I have observed is that the majority of people will not ever tell you they feel lightheaded or dizzy but they could have a blood pressure 70 over 40 in standing. All they'll tell you is, well first their knees will start to buckle and they'll kind of come down with a thud on the edge of the bed. And if you ask them what went wrong, they will just say they felt "so weak" and this is actually consistent with some studies that have been done looking at advanced cancer patients where they actually looked at those patient's autonomic dysfunction, in other words the drop in their blood pressure. In this one study, they found that 47% of these patients had severe autonomic dysfunction. Zero percent reported that they were lightheaded and 30% of our patients every day, we find have a positive orthostatic finding. This resulted in us seeing a dramatic, dramatic drop in the rate of falls on our unit and we have recently had more challenges. I think because we have introduced some more aggressive chemotherapies. And so we're constantly working to try to minimize patients' fall risk in a hospital setting. Obviously it's bad for those patients and the outcome could really be life-ending if they were to fall and their platelets were low. So it is a very serious thing that we are striving every day to help prevent and that leads me to one other thing. I should mention about the balance that I didn't say and that is that it's not that uncommon also for patients undergoing transplant to experience some sort of inner ear problem while they are here. It could be a side effect of the chemotherapy but I think it may also be simply related to their electrolyte imbalance. So when you're having frequent stools or diarrhea, or nausea and vomiting, you know your electrolyte balance is off and that can actually contribute to what happens in the inner ear and I have treated many of my patients who have had different forms of inner ear problems. And so again diminished sensation in their legs, maybe their site isn't the best or the lights are dimmed and now you add this vestibular problem and you have a person who could fall rather frequently.
Jenny: Multiple causes. So what you're saying is in a facility, you are taking three sets of blood pressures and I think that's very uncommon. So I think for patients and I have never ever heard of that before that you could take a blood pressure lying down. You could then take your blood pressure sitting up and then you could take your blood pressure standing and see potentially a dramatic difference in those three. And so what you are saying is 30% of your patients when you do that are having issues. They have dramatic differences in their standing versus sitting versus lying down. So that causes falls. When you take those blood pressures and you know where that patient is at, then you know. I have never had that done for me.
Melanie: Well, you know, I'm with you on that. I am appalled on a daily basis that acute care hospitals have not embraced the fact that probably every patient, every day should have this done because if you're in a hospital, you're sick. You're undergoing changes in your hemodynamic, your blood volume levels, your fluid status were changing your blood pressure medications. We're introducing different drugs that you don't know how your body is going to respond to and I'm sorry but if I look at the blood pressure readings on my patients, where the nurses have charted on them for the last two or three days, it's a sleeper for me. I would just want to yawn because, sure their blood pressure looks absolutely fine but who cares because they are lying down. You know you can make changes to their medication based on that but the important thing to ask yourself is what is going to happen when we stand up? Because that is the only time really the patient is now at risk for falling down. So it's such an important piece of the patient's health status and I literally do it with any of my new evals throughout the hospital. It doesn't matter what age they are. I find pediatric patients who can go from 120 over 70 lying down to 90 over 60 sitting to 70 or 60 over 40 in standing. Without that documentation, without me doing that sort of vital signs, I can tell you that that child or that adult could be asked by nursing staff or therapy staff to say "Come on, you can do this. You don't need to be so worried about it. Just let's walk over the bathroom." You should be able to do this and it's a very gentle form of kind of pushing someone to do something that they don't feel confident about and they don't feel confident about it because when your blood pressure drops, you do feel a little bit of like kind of anxious. Something is not right. But you just can always find the right words. So yes, I think it's extremely important for folks that are going through any form of chemotherapy or who were experiencing what they might call weakness or they might say I'm just so tired when I get up or some people did say, my knees just want to give out or maybe they have an unexplained fall after they stood up. Those are all indicators that set of vital signs should be done.
Jenny: And what about the myeloma treatment causes that change in blood pressure?
Melanie: Well my understanding and this is -- some people may want to argue this but my experience is that people come in and they are just as strong as anybody on the street when they check in. Within a week is when we might start to see this very sudden change and I initially, I was getting called to come up and reassess because Mrs. Jones is so week she can't stand up. She is de-conditioned. These are the things I was being told. Well I'm sorry but in one week, Mrs. Jones is not going to become so de-conditioned. She can't stand up especially because she has been walking. She has been doing my exercises I gave her. So I think we need to be very careful about labels and assumptions that are placed on patients. When in fact, if we just looked at the objective information, we would know what the problem is and I lost sight of your original question because I really just wanted to express that efficacy point.
Jenny: Oh, no. I think this is very important but I’m just wondering what causes that change in blood pressure so you do feel that so weak which kind of leads you into that fatigued feeling.
Melanie: So think about the peripheral neuropathy that is caused by these chemotherapies. So there is actually something called autonomic neuropathy. So the nerves that control how your blood vessels respond, how they constrict, how your heart constricts, those are just as susceptible to the side effects of chemotherapy and many of the drugs that our patients are given, if you read this fine print, it will say that this drug is cardio toxic, that this drug can cause drops in blood pressure. It can cause dizziness lightheadedness, falls. So we do have patients who literally experiencing a temporary heart failure while they are in-patient which does in fact improve because we have seen their echocardiogram that was done before they were admitted and we see it afterward and it recovers. But during that time, they can have an echocardiogram that may show that their heart function is diminished. The strength of the contraction is diminished. And not everyone has that. That's the thing. You don't know how your body is going to respond to a given drug. There is a wide range of how we all respond to these medications but you certainly won't know if you are not having your blood pressure checked. It may just be that you are labeled as being lazy or you are labeled as being -- she just won't do anything. She is too anxious. I don't know why and you take that blood pressure and you go "Oh, that's why."
Jenny: If some patients could ask their nurse just to say I feel so fatigued, but this is normal for me. You can take it three different ways.
Melanie: Right, and you know as well as anyone that the word fatigue is such a garbage pail term and cancer-related fatigue has been coined for what, 20 years probably or more. But what is it? And that's why I really like that study was done on people with advanced cancer that really showed that there is almost 50% of these people who have an autonomic dysfunction, a severe autonomic dysfunction where their blood pressure just drops every time they get up. And I make a lot of analogies in my line of work and I might say, you know, if you were a car, if your wife called you and said, "Honey, the car is two quarts low on oil." What would you tell her? "Oh, I'd tell her get over to the shop. Get some oil put in there. You can't drive that on the interstate today" and these people are the same way. They need some support and unfortunately at this time in our medical practice, the only way we really have identified how to treat this problem is to give fluids. And this can instantly, within an hour two, have their blood pressure improved to the point where they feel fine, up and moving and they are ready to get back out and do their thing. Unfortunately, though, sometimes that approach can lead to accumulation of fluid, build up of fluid on their lower extremities and more problems with taxing the heart just because of excess of fluid. They can literally have weight gains of 10-15 pounds of fluid being an in-patient. And I have seen higher numbers, actually. So it is a time, in my experience, when we just need to be smarter and maybe that patient who is already having trouble with being able to tolerate fluid, an IV bolus to address a low blood pressure, that might be the patient that we just say you know what, we think their fluid status is fine. It's just this autonomic thing going. And so instead of expecting them to get up and walk the hallways, we're going to walk in the room with supervision. Instead of expecting them to get up and go into the bathroom, we're going to put a bedside commode there and a urinal. So that gives them this safety net during this time when their autonomic function is dysfunctional, because it will improve. It's just that there is going to be this period of time for quite a few of these folks where they experience this.
Jenny: So this is temporary and what you're saying overall here is that you have this dance you have to do between making sure the patient is safe and not doing too much when necessary, but also getting up and moving to prevent further muscle loss and damage. So you are trying to weigh that balance at all times as a care provider.
Melanie: That's exactly right.
Jenny: It's individualized. And so we can't say "Okay, you need to get up. It's time for you to get going." I think sometimes it's a challenge for caregivers too to know okay, when do I encourage this patient I'm caring for and when do I just say "Hey, it's time to take it easy." And so I think your approach is great. You have a very compassionate approach.
Melanie: Well I'd like to say too, it's compassion but it's also objective. You know, and I think that's what can be missing sometimes and we have so many numbers in front of us. We collect so many data points on these people but why not use what's available in front of you? Why not look at what the numbers are telling you and knowing what someone's activity tolerance might be under those circumstances and then just respond accordingly.
Jenny: Well, let's talk a little bit about endurance briefly and then pain or pain management because I know you have a lot to share for that. So how can patients increase their endurance?
Melanie: So a lot of times, and this is going to depend on where you're at in the process but the main thing that I'm going to advice to do if you are in the process of undergoing transplant or if you are post-transplant and you are trying to build back up to where you were. Often you simply need to set realistic goals and when you are discharging from the hospital post-transplant, the thing I will tell people is look, you might be thinking that each day, I'm just going to get better and better and better and better. But what you need to know is that it is very possible that you will still need blood transfusions after you discharge, not everyone but quite a few people do. So when I give them some exercise goals based on where they were at when they are discharging, I'll say look if today, you can walk for 20 minutes, and tomorrow you can walk for 20 minutes and the next day, you do five minutes and you're just gassed, you need to be thinking it's time to call the clinic. You may be needing a transfusion. So they don't have the knowledge of every morning having their blood drawn, seeing what their counts are and just being given a transfusion, they are having to base it off of how they are feeling and how their exercise tolerance may have changed. So setting realistic goals. I think consistency is important. If it's endurance, I think that's something we work on every day. It's not something you postpone every other day but each day you are looking to say, "Okay, I know I can walk for ten minutes before I'm going to need to rest." Well ten minutes is a small enough or short enough walking time that I would probably encourage that person to walk for ten minutes, sit and rest as much as they need to even if it's five minutes but get up and try to walk a second time even if it's five minutes, seven minutes and that we call interval training. So that's really just about paying attention to your fatigue, resting and sitting down before you become fatigued. So you are not putting yourself at risk for tripping or falling or getting too anxious. If you are feeling like you are getting short of breath or something like that, then that can make a person make kind of hasty decisions that could cause them to possibly fall. Did that answer your question?
Jenny: Yes, it did. So let's talk about pain. It's easy to have the time go quickly.
Melanie: Yes. So pain. Yes, the first thing I would say is the first thing I do when I'm doing a chart review is I'm heading right to imaging and I'm looking for any compression fractures or other lytic lesions throughout their bony skeleton and paying attention to any pain complaints they might have. Some of my patients have had surgeries to correct some of the pathologic fractures in the vertebrae so that's called kyphoplasty. So I am always paying attention to their posture and generally their ergonomics or how they move when they are doing different things around the room. And something people need to realize is that when you have a compression fracture, it's typically the front edge of the vertebrae that collapses. So imagine a series of blocks on top of each other and it's the front edge that collapses. That's going to tend to make that set of blocks curve to that side or curve forward. That means that when you're feeling weak and tired, if you do not have proper back support and you are sitting in a way that's making you slouch, you are not only going to wear yourself out faster because your muscles are trying to help hold you up but also you are adding undue stress to the front end to those other vertebrae that are susceptible. So posture is really important for preventing further injury also for energy conservation and so I will address strengthening for these folks with a specific exercise that is not crunches, that is not sit-ups. We call it back stabilization but basically we are looking to strengthen the core muscles throughout the abdomen and even along the spine and this can be done in a way that's very challenging for the patient and yet very safe. And it's something I'm not even going to try to explain over the phone but certainly something that a qualified therapist could help these individuals with.
Jenny: So that's one strategy, proper posture and strengthening that core so that you have that. Okay, what else can patients do to navigate pain?
Melanie: Some of my patients have what we can call nerve pain or ridiculer pain and that's typically coming from the lumbosacral region to the low back area and that can be from narrowing of the opening where the nerve comes out because of the collapse of some of the vertebrae or possibly a small bulging disk or something of that nature. Regardless of the cause, the thing that I emphasize with my patients is again posture is important, sleep when you are sleeping on your back. If you have low back pain, it's very important that you have support under your knees. Keep them flexed so that those little openings where the nerve root exit don't become very tiny because that's what happens when we lay flat on our back. Our low back extends and it narrows those openings. So there are a few exercises that I teach people. One of them is just a simple seated hamstrings stretched and with tall posture and the heels set firmly on the floor and the knee in extension. As a person leans forward from the hip. What they do is they stretch the hamstring. But that in turn stretches the nerves that are attached to it. And that stretch can make them just a little skinnier but also just a little more mobile through that area where they might have been experiencing some pressure and this has been very effective at helping to alleviate that type of pain from my patients here on the bone marrow transplant.
Jenny: When you talk about pain, you can also talk about neuropathy. Are there physical therapy exercises you can do to reduce neuropathy or improve it or even make it go away?
Melanie: Well the specific treatment for neuropathy, actually I was glad you asked that question because it always pushes me to go back to the evidence and so I did a little research online and a review just came out in February. Let's see, I think it was February of this year and it's entitled "Natural Products and Complimentary Therapies for Chemotherapy Induced Peripheral Neuropathy, a Systematic Review." And in this article, they talk about the benefits of massage as a possible treatment for neuropathy and that when you do massage and I have even heard from a few patients of mine with neuropathy that they have had specific treatment to their feet which they refer to as reflexology but when you think of what is reflexology, it's like a form of massage and the fact that you are using your hands to push different points on the feet and it tends to improve circulation. And so I also think that sensory inputs can help because it can create a different sensation for the brain to pay attention to rather than the negative sensation it's getting from the neuropathy pain. Sometimes stretching can help as well with that and then generally keeping physical activity going so that you get the benefits kind of that runner's higher, that endorphin release, from taking that walk that actually it made you feel better by the time it was done even though before you started you thought - oh there is no way.
Jenny: And I've had some friends who have gone through multiple transplants that exercise actually helps reduce their neuropathy. That's not scientific fact.
Melanie: I know. We don't always have -- we don't always have randomized control trials to support things but you know another reference that was made in this article is actually for acupuncture and I thought that was a pretty robust finding that they had. I didn't go to the actual article. But within a three-week time period, these individuals and they had a placebo group that got capsules and they had the group that had acupuncture. They showed some really significant improvements that were actually rated on standardized assessment tools. And that occurred over a nine-week period of 20 acupuncture sessions two to three times a week. I have never had acupuncture. I have done what I call acupressure which is very, very effective at alleviating muscle spasm in the patients that I serve. So I know that helping to address the health of the motor point and the muscle in that area can definitely help improve circulation in that area and relieve pain.
Jenny: And I just have I guess one more set of questions and then maybe we'll open it up for caller questions. So be thinking about your questions. If you have a question for Melanie, you can call 347-637-2631 and press 1 on your keypad. But what about muscle -- you have talked a little bit earlier about electrolytes and your balance is getting off and I know some of the drugs can kind of increase the frequency of muscle cramps in your legs and your feet. So do you have any suggestions for that or even leg swelling?
Melanie: So for muscle cramping, I mean it depends on what type of cramping but we know that a muscle cramp usually responds to some form of stretch. It basically helps it reset and I have experienced some of my own muscle cramps before and I know the last thing I really wanted to do is to lean in and stretch it because it hurts when I first start. But that actually disrupts that particular spasm in that moment. So stretching, I would think some again, manual therapy that might get in to some of those areas of the foot for example where you can't really stretch it, any means that with your body, we're shifting your body in any way. It might take actually getting in and manually getting some pressure on the muscle to stretch it. And then as far as swelling in the legs, we advocate for these patients in the inpatient setting to elevate their legs if they experienced swelling and to perform ankle pumps which is just pulling the toes back to stretch the calf muscle and that is like a -- it functions like the pump in your basement that will help. When it stretches the calf muscle, it squishes the veins which have one way valves and that moves that, you split out of that area and helps the lymphatic drain so that can be very effective. I've had patients, one gentleman in particular I'll never forget. He didn't -- he refused to take Lasix. He was very frustrated with the whole Lasix process and he said "What do I need to do?" and I showed him how to use a recliner to tilt so that his feet were at the heart level and did ankle pumps the rest of the night and the next morning, he flagged me down to say he had lost eleven pounds of fluid.
Jenny: Oh, my, word.
Melanie: Yes, that was without Lasix. So that can be very helpful. I know there are some cases where the fluid can become actually move into a different space where this type of approach doesn't help and sometimes those people actually need to be given albumin which is a protein that helps to draw that fluid back into where it can be moved. And then we have done some work on our unit with using tubigrip or compression socks. It's something that I think we could probably investigate a little bit more as far as who to use them on and how best to manage people swelling because unfortunately, the T.E.D hose that you can get from the hospital stores, they are not custom fit and then of course people's volumes change so much that what you think is fitting today is now kind of dangerous to even to put on tomorrow and so that is a very difficult thing to manage and certainly something that hinders patients from really doing as much as they want to do being up and walking as much or as well.
Jenny: Okay, great. And I guess my last question would be, after hearing these doctors talk about the need for patients to get up and get moving and get fit, we just thought it was an extremely critical thing to address from a patient standpoint to encourage one another to do it. When we think about building Muscles for Myeloma, I like that we chose that I wanted to do this on annual basis because we've had some patients say you know, you really changed my life by doing this program because it's consistent. It's self-directed. It's just a goal that they feel like they can accomplish. If you had to weigh in with your opinion about doing a campaign like that or participating in a campaign like that, what would you say?
Melanie: Oh, I think the first thing I would say is that there is absolutely benefit in finding that peer group that doesn't necessarily push you or that you have to compare yourself too but that you feel somewhat accountable too that you can relate too and say "Oh I know they are going through this too." I know they are trying to get better and I'm trying to get better and you share your stories and in that way bolsters your motivation and your courage to really get out there and do it knowing that you are not alone and that there are other people that are going through similar difficult times and in that way, you could be a resource to each other. And the other thing I would say is what I kind of said before which is start where you need to start and work on improving you. Don't try to compare yourself to someone else because you have no idea what other issues they are dealing with that are different than yours, where they started out and it doesn't frankly matter. You're just trying to get better within yourself.
Jenny: Right, I agree. And I think patients can feel a lot more empowered about taking care of themselves and what they can do in life and I do think it helps them as they recover especially from stem cell transplant or other myeloma therapies.
Melanie: You know, there is one more thing I should mention just because I failed to when you asked me about endurance and I don't have the references right in front of me but I know that they are available on the internet. For those people that are working on improving their cardiovascular conditioning and their endurance, something that is helpful to do is actually monitor your heart rate, so your resting heart rate when you're standing, your peak heart rate when you're exercising and there are specific guidelines that we use to try to estimate where a person should be to get the benefit and what's reasonable maximum for them, for their heart rate. So if you are seriously looking at pushing the endurance thing, that's something that I would recommend you seek out guidelines for based on your medical condition.
Jenny: And then you can track it and do it safely.
Melanie: Yes, and that way too, you are not worried about if you should do more. Am I doing enough? Well, look at the evidence. How is your heart doing? It'll be informed.
Jenny: Great suggestion. Thank you. Okay, we have a caller with a question. So I will bring you on and go ahead with your question.
Paul: Melanie, hi. This is Paul Ahlstrom, Jenny's husband. Thanks for taking the time. So I have been listening to the show with great interest. So I'm her caregiver but she is way more fit than I am.
Melanie: I'm not going to ask how much she paid you to say that but okay, yeah. Go on.
Paul: Well everybody knows and she's running a 5k on Friday and I'm going to be watching. Very informative show today. Thank you for taking the time. You made it very real and very compassionate and very practical but also I liked how you approached things and you put yourself in kind of an outcome based approach saying you took your ego out of the middle of the conversations. What should you do to get the patient moving versus, ugh, they should just be able to get up and get going. This is such a very unique perspective to bring. I just wanted to thank you for that.
Melanie: Well I feel really fortunate that the universe brought us together and I need to thank Pat Killingsworth and Patty Killingsworth for their invitation to Pat's Myeloma Beach Party because that was truly something that invigorated my heart and got me really reinvigorated about what I do and the difference that can be made but also how there is people out there like your wife who is setting the bar high. So it was really great to have this opportunity.
Paul: Yeah. She is a one-woman cyclone. She is amazing at many levels. So thanks again for your support. She came back and told me after the conference.
Melanie: Oh, cool.
Paul: About a lot of the tips and I have been doing the blood pressure standing and lying down. You are right, there is a difference. It's amazing.
Melanie: Yes, we can expect a little bit of difference somewhere in the healthy state but it's when that's significant enough drop and you know one other thing I didn't state is one of the numbers I pay close attention to is actually a number that the lay person probably doesn't know about and it's called your mean arterial pressure and that's a complicated average. It's a complicated average of the top and the bottom number. You can find the equation on line. There are a couple of versions but 60 is the minimum that we need to profuse our vital organs. That means your brain, that means your heart and normal is 70 to 110. So for my patients you know when I see a blood pressure and I go uh, that MAP is way too low to expect anything. That's a real easy line for me to draw on the sand and say nope, sorry. We are just going to do some bed exercise.
Paul: All right. Well keep at it and say hi to Dr. Tricot for us and we'll keep you in our thoughts.
Melanie: Sounds good. Thanks, Paul.
Jenny: Well, Melanie was cornered at the beach party by many patients asking about their specific issues. So Melanie, we are just so grateful that you joined us today. We're thankful for all the research that's gone into your efforts and for your care and I think we all want you to be our physical therapist at our facility. So maybe we need to consider the University of Iowa for our care.
Melanie: Well, it would be a lengthy commute for most people. But I think on that note, what I was hoping to do in presenting on the material I did at the beach party but as well today is to really empower people to know what they should be asking for, to know what is it that I really want out of that therapist who is trying to help me because it's actually been determined in the literature that for the majority of people whether they've had a stroke, a spinal cord injury, whatever their melody or their ailment might be, we tend to under-treat people. We don't tend to challenge them enough. We have the division one athlete. We pushed them, but for those of us that are athletes of life, we don't always get that objective guidance to really be pushed to our full potential and like I said, it's not just about pushing people. It's about doing it with appropriate inputs. So I hope that people can take away these guidelines and these stories to help them really shape what it is that they want out of their therapy sessions because you are the consumer and I have trained you know, hundreds and hundreds of PT students. I know what these kids know what they have been taught in school. Now we should expect all of us to use that knowledge to help patients of all types.
Jenny: Well thank you so much and thanks for joining us because it was a very, very practical and informative show.
Melanie: You're very welcome. Thanks for the opportunity.
Jenny: Thank you for listening to another episode of Myeloma Crowd Radio. Join us for future shows to learn more about the latest in myeloma research and what it means for you.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.
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