Lymphedema Prevention and Treatment: What You Need To Know

February 25, 2006 Trudy Turvey, MS, PT

LANITA MOSS: Welcome, everybody, to “Lymphedema Prevention and Treatment: What You Need to Know.” My name is Lanita Moss. I am one of the co-founders and vice president of the Young Survival Coalition [http://www.youngsurvival.org]. It is an absolute honor to be here this weekend with so many young women [and] that somehow, out of dumb luck, three women about seven years ago pulled an organization together that can impact so many people in their lives. I am honored to be in the presence of all of you guys, and I’m glad you made the trip to Denver this weekend. I would like to introduce our speaker, Trudy Turvey, the president and clinical director of HealthLinks Clinic in Boulder, Colorado. She has over 30 years of experience as a clinician, administrator and teacher. She’s well known for her expertise in the areas of postsurgical therapy for breast cancer, lymphedema and exercise assessment and training. She has been a speaker for the nationally acclaimed Day of Caring. She values her personal relationships with her patients and, above all, offers individualized quality care to each of them. I’m going to turn this over to Trudy. She’s going to give her presentation, and then we’ll do a question-and-answer period. TRUDY TURVEY, MS, PT: Thanks, Lanita. Well, thanks for being here. I’m happy to be here and absolutely amazed at the number of people who are here. HealthLinks Clinic in Boulder addresses the needs, such as lymphedema, of individuals who have been diagnosed with cancer. We try to help people once they’re diagnosed look at their lives in terms of survivorship – what are you going to do to be the healthiest survivor? – and try to pull together all kinds of things like nutrition and exercise, lymphedema care, postsurgical care and emotional support.

Through that clinic, I have, since 1999, seen many individuals with lymphedema. My approach tends to be not quite as “cookbook” as you might have encountered, those of you who have lymphedema. I try to look at the latest science and see every individual as an individual, because if you have lymphedema, your lymphedema is not like the person’s next to you. Everybody’s lymphedema is different, and you’ll respond to treatment differently. That is something I have observed through my time of treating people. Many people go to clinics and are given a cookbook way of approaching their lymphedema. Some of that cookbook works and some of it doesn’t, yet the whole cookbook is expected to be followed. That’s not how anybody should approach any treatment, least of all lymphedema, as far as I’m concerned. I encourage you during this presentation to please ask me questions. You might have tried something, if you do have lymphedema, that didn’t work. The question is, “Well, why didn’t it work for me? It worked for so-and-so.” I will try to help you through that. If you feel comfortable, if you have lymphedema, would you let me know that in the audience just with the raising of your hands? Thank you. My other experience is that people with the diagnosis often know a lot more than the people who are treating it, so if you have something to offer, this is the time to offer it to people, because I’m really open to hearing whether something different worked for you. I know everybody else would welcome that as well. Let’s talk a little bit about what lymphedema is. For those of you who do not have it and perhaps have not been exposed, lymphedema essentially is an accumulation of fluid. It’s in the tissues. If you’ve had breast cancer surgery, it would most obviously be in your arm, your trunk, your breast, sometimes your back. If you’ve had neck surgery, it would be in your neck. If you’ve had surgery for, say, colon cancer or ovarian cancer, it

more than likely would be in your legs and your abdomen. It can be in many different places. There are different ways of categorizing lymphedema. Primary lymphedema – they call it hereditary, but that’s not necessarily the truth of it. It is a lymphedema that we don’t totally understand; we don’t understand either of them, frankly, very well. [Primary lymphedema] might [arise] because there are malformations or there is a poorly developed lymphatic system from the getgo. This lymphedema might not show up for years, but later in the teens or even adulthood, something might trigger that. The treatment for that lymphedema is the same as for secondary lymphedema, which is really what we’re here to talk about today. Those of you here who have lymphedema, it would be categorized as secondary lymphedema, and it’s from some type of trauma or insult to the system later in life. Let’s talk a minute about the anatomy. The lymphatic system is not a very well understood system – I should tell you that. When your physicians don’t know what to do, it’s because this system was not really addressed in medical school. Perhaps in medical school, survivorship wasn’t as much of an issue, but now we have many, many survivors, and lymphedema as a complication of treatment or the disease certainly exists plentifully. The lymphatic system, by the way, is microscopic. For someone to actually dissect the lymphatic system is a very specialized dissection; [it requires] someone with skills beyond the normal, if you will, anatomist. It is microscopic. These capillaries – they’re called lymphatic capillaries – many of them lie right underneath the skin. That’s important to know because that’s part of why the treatment approach is used. These capillaries connect to deeper vessels, which connect and go through nodes, and the fluid is filtered through the nodes. It ultimately gets back up to the heart and dumped back into the cardiac system to be put in with the blood, and back out it goes.

Lymph fluid is not a special fluid that people with lymphedema have. It’s fluid that I have and anyone else has. They call it lymphedema – “edema” meaning swelling, and “lymph” because it’s the lymphatic system that’s not working very well. Some people have a sense that it’s some other fluid, but it’s really not. To put it in a nutshell for you, you have arteries delivering proteins, tissue nutrients and fluid to your tissues. For my arm to work, my muscles need those nutrients. Once my tissues are done with it, the venous system brings back the majority of it. The lymphatic system brings back approximately 10 percent of what’s not used. The other very important thing about the lymphatic system is that because of its structure, it is able to bring back larger molecules – the protein, the fatty deposits. Hence, if it’s not working, that stuff stays out in the tissues, and therein is the reason for the infections, the cellulitis that people get. That’s a very important thing to understand, because one of the biggest issues for people with lymphedema is the whole infectious process. WOMAN: When you were talking about the lymph system taking bigger things, do you mean bigger toxins? TRUDY TURVEY, MS, PT: Well, bigger molecules. Proteins are larger molecules, and those can’t travel through the venous system. They’re too large to get into it. WOMAN: Oh, so if your lymph system isn’t working, they get stuck? TRUDY TURVEY, MS, PT: They stay there. Right. What are the causes of lymphedema? Why would one have lymphedema? Well, certainly surgery, and that can be any surgery. It could be knee surgery, surgery totally unrelated to cancer. For individuals with a cancer diagnosis, it has some particular things that we’re dealing with. Radiation, tumor, venous insufficiency – when you see elderly people walking around and their legs are really swollen, that’s not just venous insufficiency. What happens is the lymphatic system gets overwhelmed, so those individuals also will respond to lymphatic therapy. Infection – I have two people in my practice right now who did not have lymphedema but got infections in their arms through some other process. They are breast Page 2

cancer survivors. Their arms became very swollen, and now they do have lymphedema, but they did not have it prior to the infection. Insect bites – we’ll talk a little bit more about how important insect repellent is for you all – and burns: The reason some of these things cause lymphedema, like insect bites and burns and infection, is that the body is going to respond to that and send a lot of blood to try to heal. When more blood than normal is sent and the lymphatic system is impaired, the system cannot handle that overload. There is a much greater supply of tissue nutrients than the lymphatic system is prepared to handle. The surgery for breast cancer most of the time involves removal of nodes. When you remove those nodes, you remove part of the lymphatic system. Try to visualize this with me. Nodes are not discrete little things that physicians can pull out one by one. They are, by and large, embedded in your tissue. When they’re doing the surgery, they reach in and pull out this bunch of tissue, and maybe there are four nodes in there for me; maybe there are seven nodes in there for somebody else. There’s no discreet way of pulling them out. Occasionally there will be an enlarged one, and perhaps that could be pulled out. With that [tissue] are all of these lymphatic tubules that are connected there, so now you’ve lost these ways for the fluid to get back through the nodes and back into the central system to be handled by the cardiac system. That’s what this surgery does. I’ve had people say, “But they only took one node out.” It is our hope that sentinel node surgery can reduce the risk for lymphedema. In fact, the fewer nodes you have taken out, the less is your likelihood of developing [lymphedema], at least as far as we know right now. Even with a sentinel node [surgery], I have had patients who have had lymphedema. It’s not a way of totally preventing it, having just one node removed – it’s important to understand that. Radiation itself destroys lymphatic tissue. Radiation essentially causes the tissue to be nonelastic and non-functioning. “Fibrosed” is the way you might describe it. Those tissues become scarred, and once they’re scarred, they’re really nonfunctioning; those tissues will not regenerate. There is some good evidence that without radiation, lymphatic tissues can regenerate, but not across the board. Saying to yourself, “Well, darn it, if I hadn’t had that radiation, I might not have that lymphedema,” that’s a really iffy thing. I have seen

people, of course, who did not have radiation who’ve had lymphedema. It’s not a cure-all, refusing the radiation. In fact, we know radiation does improve chances for survival, so I wouldn’t want someone to make that choice – and radiation adds only 1 percent to 2 percent in terms of the total risk for lymphedema. Tumor, of course, can block the lymphatics. When I get a patient who has new lymphedema, the very first thing I’m going to ask is, “Well, what test has your physician done?”We need to make sure it’s not a blood clot. We need to make sure it’s not new tumor. Should you develop lymphedema, you don’t go straight to the therapist who’s going to provide lymphedema therapy. You go straight to your oncologist so he or she can do these tests and make sure you don’t have a clot and you don’t have tumor. It’s very important, because treating lymphedema with tumor preset, you won’t get anywhere – you can’t. The tumor needs to be addressed as to where that tumor is, and probably there will be some other chemo or radiation to manage that. Any questions about the causes? WOMAN: I’m curious about what you were just saying about having a clot. What kind of tests would you do for that? TRUDY TURVEY, MS, PT: They would do an ultrasound. WOMAN: Of your arm? TRUDY TURVEY, MS, PT: Of the arm. Any time new lymphedema appears, I would say nine times out of ten, an ultrasound is done to rule out a clot. Let me give you an example: tamoxifen. If you were newly put on tamoxifen and you got some arm swelling, that could be a clot, and usually that is painful. That’s one way to differentiate, but don’t diagnose yourself. I mean, truly, that’s a life-threatening emergency and you need to have that addressed. With tamoxifen, as many of you may know, one of its unpleasant side effects is blood clotting. This is very important: I have had many people who have been treated for lymphedema when really what they had was postsurgical swelling. You can imagine, if any of you are in this category, getting some swelling after your surgery, going to a therapist who claims to have lymphedema experience, and he or she says, “Oh,

my gosh, you have lymphedema. You need to get these treatments. And, by the way, you didn’t have insurance, so you’re going to have to pay for these out-of-pocket, and they are about $1,000 to $2,000. And you need to wear a sleeve for the rest of your life.” I have had patients who have had that done, and the depression that follows that and the trauma of that, to me, is just really unnecessary. Most people after surgery are going to have some swelling. It would be unusual to not have some swelling in your trunk, in your breast tissue area and in your arm. It usually resolves in six to 12 weeks. The treatment is to use your arm. Move it, because moving it is going to help that lymphatic system function. Elevate it – that kind of swelling does respond to elevation. Lymphedema, unless it’s very, very early, and even then it’s a little questionable, does not respond very well to elevation – maybe a smidge; not a whole lot – but [postsurgical] swelling will respond to elevation. You can do hand open-and-close exercises; that will also facilitate the lymphatic system. Remember, this is not lymphedema, so if you have a gut sense that, “Oh, gosh, I have this swelling [but] I just had surgery” and someone’s told you that, try to get another opinion, because it’s really not lymphedema. WOMAN: I’m confused, too, now. I’ve got lymphedema. I say it’s been like six years, but last year I had three surgeries, and it would usually swell up my arm more after the surgery. The last one was in December. … It kind of swells up after the surgery, but I’ve still got lymphedema. Do I need to go somewhere to make sure it’s not? Can I have the swelling after the surgery and lymphedema? TRUDY TURVEY, MS, PT: You could have both. If you already had lymphedema and then you had some more surgery, you could have some additional swelling that goes on there. For that, the treatment would be the same. You would wear your sleeve or your bandages, whatever you’ve been used to. You could get some treatments, some massage – I will do massage for this, but I would never put someone in a sleeve for this swelling. Let me tell you this so maybe it will motivate you. The earlier you get to it, the more likely it is to respond. If you would treat it now, it would be much better than if you wait six months, and you’ll have a good chance of having it go down.

WOMAN: The first time I got lymphedema, a doctor – how did I find out I had lymphedema? They didn’t do any type of tests. It just swelled up and I took different types of therapies for six weeks, and then it went away. TRUDY TURVEY, MS, PT: Well, we’ll talk a little bit about the going away business, because it doesn’t always go away. WOMAN: That’s what she said. TRUDY TURVEY, MS, PT: Lymphedema is its own little monster. Let’s talk about prevention, and then we’ll talk about treatment. … You could just go to bed for the rest of your life, and you could still get lymphedema. I say that by way of telling you to throw out the guilt. This is not about guilt. You could get it; you could not get it. It’s not because you stood on your head or you had too much wine or anything.You just get it. People have said to me, “Well, I was really bad.” Well, the last thing any of you need is to perceive yourselves as bad. You have had more than your lion’s share of things to deal with. Lymphedema is going to come or it’s not going to come, and then the question is, “What do we do?”There are a few things I can tell you, however, that had they not happened, this person, at least at that time, might not have gotten lymphedema. The first of them is infection. It’s not like you go around asking for infection, right? Sometimes people end up having maybe a second surgery. Maybe their margins weren’t clean, or whatever reason, and they get a little infection. They might get some lymphedema. Patients who get that kind, for the most part, have a good chance of being treated and having it be minimal. Of all of the things the National Lymphedema Network [recommends], not letting someone put a needle in that surgical arm is probably the most important thing, because a needle opens the skin. Bacteria get in there, and the lymphatic system does not like having bacteria in there. I don’t care what shot it is. I have a patient right now who is 30 years out from her surgery. Thirty years – you can imagine that at that time she had the radical mastectomy. She never had lymphedema until she got a flu shot 30 years later. Of all of the things in the world I think to tell people, it’s don’t let anybody put a needle there. That includes acupuncture needles. … Do not let

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them do that. I don’t care where else they want to put the [needles], but not in that arm. IVs: I had another patient who had a problem with putting them in the opposite arm, but you’ve got to make the health care worker work a little harder and find another place for that IV She had . an IV put in her surgical arm, and she got arm lymphedema and breast lymphedema. This is number one: Don’t let anybody do this. Good skin care: Again, I say these things because these are things you can do. In the winter when we get these little cuts … on the end of our fingers – they’re very prevalent, and it’s hard to not get them. Try to keep your skin very well moisturized, because dry skin is more prone to having openings and more prone to inviting bacteria in. I urge people to use something that does not have a fragrance, because you never know when you might have a reaction to a fragrance. Some of my elderly people, I tell them to just use the canola oil in the cupboard. That’s great – non-aromatic, and it really keeps the moisture in. Put moisturizer on when your skin is still wet, not after you’ve dried, because the whole idea of cream is to keep moisture in. Once you’ve taken it away, the cream is just there. Protective gloves: I urge people to do this for a couple of reasons. If they work with roses in the garden, thorns can really cause a problem. I am a gardener and I hate gloves, but around the rose bushes is a good place to wear them. Also, use protective gloves when you’re reaching into the oven, because burns can cause lymphedema. Your body wants to heal that burn, so it’s going to send a lot of stuff there. Those are the two places I think are most important in terms of gloves. Insect repellents: If you have an arm or a leg that already has some kind of impaired lymphatic system and you get a mosquito bite … it’s an invasion of the system, and your body is going to try to heal that area, right? It’s the same thing as a burn. Use the insect repellents. I know people have a problem with DEET and all of that, but you can use the other ones and just put them on a lot more frequently. That’s a really important one. I had a gentleman who had primary lymphedema. He just all of a sudden had these legs that swelled. We had treated for about six weeks, and he was looking great. He walked out in his garden with shorts on; his leg came back bigger than when I first saw him because he had one mosquito bite. Please be careful about that.

WOMAN: I was just wondering, is the lymphedema worse [when there’s] bigger, more swelling? Is that how you tell if it’s worse? TRUDY TURVEY, MS, PT: Yes. That’s how it’s graded. There are a couple of different grading systems for lymphedema, but a simple one uses mild, moderate and severe grades. Mild is less than an inch compared with the other. I don’t typically call that mild, but that’s the system that’s been set up. An inch to 2.5 inches is moderate, and anything more than that is severe. WOMAN: I also have a frozen shoulder that I developed. If I do too many of the exercises for the frozen shoulder, the lymphedema comes and I get a fever. I never get that swollen, but I get a little swollen, so then we cut that down. Can you ever redirect your lymph gland system? TRUDY TURVEY, MS, PT: Yes – that’s what the treatment is aimed to do. I’ll talk about that in a minute. I’d also like to address your frozen shoulder. When you say you get a fever, do you get a temperature change, or does your arm just get warm? WOMAN: My arm and my breasts get warm, but I actually get a fever. TRUDY TURVEY, MS, PT: In that instance, probably what’s happening is – well, one [possibility] would be the type of activity you’re doing and the intensity of it. Because your shoulder is frozen, the lymphatic system doesn’t have a very good leeway, if you will. It’s not open for that fluid to get through, and then it sits there, and then you get a little cellulitis. I’m going to talk about cellulitis in a minute. Signs of an infection: Infection is really important for you to treat – not tomorrow, not the next day, but as soon as you think you have an infection. This type of infection can land you in the hospital if it’s untreated. What happens is that if the lymphatic system is not working – remember, the lymphatic system is responsible for bringing those proteins and fatty deposits and all of that back, and if that sits in the system, it’s a medium for a bacterial infection without you doing anything. Just sitting there, you can brew an infection. People say, “I didn’t do anything. I don’t have a cut or anything, and I have an infection.” And that is very true.

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If you think you have [an infection], run, don’t walk, to your physician and get antibiotics. I try to get my patients to think about this way ahead of time. If they travel, they need to know where they are going to get antibiotics if they’re out of the country. I’m thinking of one patient who had gone to Costa Rica. She was on a hiking trip, got a ton of bites and didn’t take antibiotics. Oh, my goodness – she was so swollen, and not for months, but for years. Really, [if you get] an infection, take those antibiotics. Take a scrip with you if you’re going to be in the United States. If you’re out of the country, take the antibiotics with you. If your physician will give them to you, take the antibiotics with you so you can just take them immediately. Now, there is a difference between an infection and an arm that just feels warm. If the lymphatics get irritated – and they can get irritated by aggressive activity or because they’re going to get irritated – the arm may feel a little red, a little warm. That’s called lymphangitis, by the way. A lot of people postsurigcally have breasts that are red and warm, and antibiotics don’t do anything. That’s because that’s not an infection. It’s really a lymphangitis, and the thing that helps that the most is the massage that I’m going to talk about – very gentle lymphatic drainage massage. [The redness and warmth] can last for months, but that is not an infection. Any time you have redness and warmth, though, you should at least try the antibiotics and see if that’s what’s happening. Temperature and chills: If you have temperature or chills, it’s gone a little too far. You need to get into your doctor or get into the ER. I had a patient who came to me who had pretty significant lymphedema, and we had been treating it. Her arm was a little warm, but the telling thing was that she said, “Oh, Trudy, I’m so cold.” I mean, this was summer in Boulder, and she’s a big woman, so it wasn’t like she was skinny and didn’t have anything to keep her warm. Systemically, she was getting an infection. Not only was it in her arm, but she needed IV antibiotics and needed to be in the hospital. Don’t ignore temperature and chills – very important. Prevention of burns: Well, we’re not supposed to be getting a sunburn anyhow, right? That should be pretty clear to people. When you think about a sunburn, it’s a burn. It’s not just, “Oh, I’m tan.” It’s a burn, and a burn is going to require your system to respond to it. Again, a lot of blood goes to that area and tries to heal it. I’m hoping that if

you understand the physiology of it, then when other circumstances come up that I missed and didn’t address, you can say, “Huh, this is probably what’s going to happen here. I better take care of this this way.” That’s why I’m emphasizing this. Use oven mitts when you reach into the oven so you don’t get a burn. Saunas and hot tubs – the biggest question I get is, “Can I please go in the hot tub?”Well, physiology, again: If your core gets hot, how does your body try to cool down your core? It sends blood out here, right, or to the legs? If it sends blood out here and your lymphatic system is compromised, it has a devil of a time getting rid of that. What I tell people is to go in up to here. Keep your arms out and keep part of your trunk out so the heat can be dissipated without sending it out to your arms, but go ahead and go in. Saunas are the same way. It’s a little harder to keep part of you out of the sauna, however, so I feel like maybe you don’t want to do that. To tell you the truth, do we have good research about this? No. Those recommendations are purely based on physiology and what might happen. Have I ever had a patient come to me and say, “I got this when I was in the hot tub”? No. I’m a big believer in living your life, by the way, and not giving you a long list of don’t-dos. These are the things I’ve seen problems with, so I will tell you those. I’ve seen more than one problem. These are not things I’ve seen once in my lifetime with lymphedema. I’ve seen it over and over again. The once-in-a-lifetime things could have been anything, and I’ll give you an example of that a little later, too. Constriction: The biggest issue might be backpacks, hiking, heavy purses. If you were at risk for lymphedema and you hang something here, you are shutting off that pathway that’s already impaired. A good thing to think about doing: Get a fanny pack; get a purse that doesn’t hang on your shoulder. Besides that, most people have shoulder problems after their surgery anyhow, and that purse is not helping them. I like to have people try to minimize that, and don’t carry everything but the kitchen sink in it, either. Blood pressure: This is a big one. Everybody’s been told, “Don’t have your blood pressure taken in that surgical arm,” because one person said, “I got my lymphedema after I did the blood pressure.” Probably not. There was a study done, relatively in the last couple of years, where they took women who had carpal tunnel problems, women who had had breast cancer surgery – carpal tunnel, for those

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of you who don’t know, is basically a wrist-pain issue – and when they do that surgery now they put a tourniquet on, and you have that tourniquet on for four hours. None of those people developed lymphedema, and in none of the people who had lymphedema did it get worse. Is the blood pressure thing a real issue? I would say not. Do I still take blood pressures on other arms? Yes. Because people are so freaked out about it, it’s not worth it to me to freak them out more and give them the big, long lecture about the study. But, just so you know, it’s probably really not the issue. Range of motion: It is really important for you to have the best range of motion possible in that surgical arm. That includes minimizing scar tissue. If you have not seen a physical therapist after your surgery, you should see a physical therapist who can evaluate the extent of scar tissue and can treat it. Physical therapists know how to treat it, and it’s really important, because just having scar tissue massage can minimize lymphedema. That’s all it might take. Now, if you have full range of motion and everything feels really lose in there, chances are you don’t have a lot of scar tissue. But there are many people walking around whose range of motion is less than what I would say is desirable, and they have a fair amount of scar tissue. Some people scar more than others internally and externally. You know, when you get cut, some people get scars there, and for other people it’s just flat as could be. That’s just a difference in our bodies and how much keloid we produce. Scar tissue massage is a very important thing if it’s appropriate for you. I was at a talk several years ago where a woman on the panel was a gardener, and she had some lymphedema and was told essentially to never garden again. Well, if you tell me to never garden again, I’m checking out, because that is my love. It’s my therapy. It’s the only thing that keeps me sane, and that’s what was true for her. She was just in tears. She was also told she couldn’t go to altitude. In Colorado? What is that about? I couldn’t really say anything in that panel because the person who was treating her was on the panel, but the woman sat next to me in the next conference and I asked her if she’d had PT. She said no, so I referred her to a PT in her area who did scar tissue massage on her. Her lymphedema went away. She was able to do all this stuff. So, don’t stop – I just want to urge you to get good treatment.

WOMAN: What kind of doctor or massage person would do scar tissue massage? TRUDY TURVEY, MS, PT: A physical therapist. WOMAN: But a physical therapist dealing with ... ? TRUDY TURVEY, MS, PT: Dealing with lymphedema and breast cancer surgery. WOMAN: You haven’t mentioned, I think, repetitive motion. TRUDY TURVEY, MS, PT: I’m getting there. We’re going to talk about gentle massage. Go get that massage, but around your shoulder and your trunk and your surgical side, it should be very gentle, not deep tissue massage. Really deep tissue massage can worsen lymphedema or produce it if you’re at risk, so make sure your massage therapist realizes that and don’t do deep tissue massage there. Active range of motion: This is my plea to get the best range of motion you can get after your surgery. That does not mean that you do the Reach to Recovery exercises and say, “Oh, great, I can get up here.”You know what? That’s not anywhere near full range of motion. You really need someone to evaluate that. Those Reach to Recovery exercises are great to get you started, but it’s a rare bird who can figure out, “I don’t really have full range of motion and I need someone to help me with this.” Please go for that. Progressive resistance training: This is the whole repetitive motion issue. For a long, long time all of you in the room – three years ago, even – would have been told to minimize your exercise and don’t do any repetitive motion. Probably some of you are being told that even today. It’s not the repetitive motion that’s a problem. It’s the eight hours of canoeing or the eight hours of washing your windows that are a problem when you haven’t done it in months. The research is showing us, and I will say to you that PTs’ experience, PTs who specialize in this, is that if you train someone and start slowly and do progressive resistive training and get that arm strong with full range of motion, then the repetitive motion is not an issue, unless she does it for eight hours. But you know what? I shouldn’t be doing eight hours of repetitive motion. Some of it is a little bit of common sense in terms of what you do.

When I see people for exercise – these are women who maybe were pretty active prior to their diagnosis – and I hand them a one-pound weight, they look at me like I’m crazy, but I’m not. They need to start out very low, some of them without any resistance, and build up. I build them up from one pound, five repetitions, up to ten. No pain and no problems? Great – two pounds, five repetitions, then six, seven, up to ten and come back; then three pounds. By and large, they do just fine. They have very few shoulder problems, unless they had preexisting shoulder problems; then it’s a little different. A lot of women get rotator cuff issues, maybe because they were really active before or they were really weak before, and there are some special considerations there. By and large, though, a slow, progressive resistive training program is how you want to do it. It may seem silly to you to lift one pound if you lifted 25 before, but I guarantee you if you do it that way, you’re going to be far happier and you won’t set yourself back. WOMAN: I was thinking more like using a computer mouse or washing dishes or even walking outside with an arm swinging, like, in the heat. I haven’t had swelling, but all of those caused my arm to ache for a longer period of time. One of the young women I know who has lymphedema, it started to hurt after she was working on the computer and using the mouse quite a bit with that hand. I just wondered what you thought of that. TRUDY TURVEY, MS, PT: The question – without knowing her, of course – that I would have is whether lymphedema was bothering her arm or she’s developing a carpal tunnel, which is almost like an epidemic that we have. Probably what happened in that instance is … she had irritation. She probably had some inflammation of her forearm tendons because of the computer work. Again, the body sends blood [and nutrients, etc.] to heal it, and her whole arm swells because she has a compromised lymphatic system. What should she have done? She probably should have started on the computer very slowly, for a few minutes. Work up to five, work up to ten, so those muscles are not going to get inflamed. It’s the inflammation that’s the problem. It’s not the activity itself; it’s what the activity does to us. WOMAN: So, an arm that aches without any swelling – is that an early sign of lymphedema or a concern?

TRUDY TURVEY, MS, PT: Well, it would be a concern for me. What you need to know is that for an arm to be visibly swollen, the tissue has to have an increase of about 60 percent of its fluid in there. I can’t measure it until it’s that high. Chances are, there is some fluid in there, and one of the best tests for that is to find someone who’s a specialist who can wrap you with short stretch bandages and see if that helps. If it’s a lymphedema issue, I would be willing to say that is really going to help you. Most people say, “Oh, gosh, this feels so good.” Do you live here? WOMAN: Yeah. TRUDY TURVEY, MS, PT: If we could find someone who knew how to do this wrapping for you, that would be a good thing. WOMAN: What do you mean by short stretch? TRUDY TURVEY, MS, PT: They’re called short stretch bandages. When you think about Ace bandages, if I pulled it like this, it would stretch forever, right? Well, short stretch, that’s the amount of stretch. Those are the types of bandages that are used in lymphedema treatment. I urge you to keep walking, though. I would never say to you, “Don’t walk.” Let’s figure out if we can help with this achiness and figure out why it’s really aching. Is it lymphedema? Is it postsurgical weakness? There are a lot of reasons for that aching to happen. Again, let me say to you, please, if you’re not exercising, please find yourself someone to work with you on progressive resistive training as well as some other stuff, which we’ll talk about. It’s very important for you. Normal body weight: Not that people who have normal body weight don’t get lymphedema, but increasing your weight or being overweight at diagnosis increases the risk. I have had people who normalized their body weight after they came to me for lymphedema whose lymphedema by and large was not visible to anyone but them and myself. Losing weight makes a big difference in lymphedema. WOMAN: What about waxing underneath the affected arm? Page 6

TRUDY TURVEY, MS, PT: Ouch. I don’t know. If you wax, having never done it, I’m thinking it would cause inflammation there. I don’t know. Those of you who do it, you’ve got to tell me. Does it cause inflammation? WOMAN: If you’re pulling your skin, it could probably … TRUDY TURVEY, MS, PT: I would think it would inflame that area. WOMAN: It would be like sunburn. TRUDY TURVEY, MS, PT: Yeah, it would be an irritation, and the body is going to want to heal that. It may depend on whether you’ve always waxed and your skin is toughened there, whether repeated waxing would coarsen the skin. I don’t know. WOMAN: No, it’s much softer. TRUDY TURVEY, MS, PT: Oh, it’s much softer? Really? I would look to see if it’s red. That would be the indication to me that it’s a little inflamed. It may be just fine. Again, I would hate to tell you to do that, but people have done worse and been just fine. There is certainly no study.They do tell you to shave with an electric razor. I don’t know about you guys, but I have never cut my underarm with a regular razor, so I think, well, why would you do that? The caveat would be over the scar that you had your lymph nodes removed from, because that doesn’t have very good sensation. I would be very careful there, because you might not know you’ve nicked yourself. WOMAN: Doctor, as opposed to pains in the arm itself – I don’t have any pains in my arm – but I do often enough in the armpit itself. Would that be relative to lymphedema in some way? TRUDY TURVEY, MS, PT: How long ago was your surgery? WOMAN: Ninety-eight.

TRUDY TURVEY, MS, PT: I would say those are more related to scar tissue. When you get nerve regeneration, the nerve doesn’t always regenerate and produce normal feeling. The medical word for it is “dysesthesia,” kind of like dysfunction, or abnormal feeling. Sometimes that’s mixed in with the scar tissue. Sometimes you can get little nerve endings that are stuck in that scar tissue, which is why scar tissue massage is kind of nice. Also, at least people tell me, it kind of never really feels the same again. Those might be some of the reasons. WOMAN: Have you found swimming to be helpful? TRUDY TURVEY, MS, PT: I think swimming is a great activity, once you have good range of motion and if you start slowly. It keeps you really limber. The water pressure tends to push fluids back into the system, and it keeps you very fit, so I think it’s a great activity. We’ll talk about more activities, too. We now know that moderate exercise and – contrary to that study that came out a week and a half ago – a diet with about 20 percent fat does reduce recurrence. Is it going to reduce recurrence in 100 percent [of people]? No. But it is as effective as or has the same risk reduction as taking tamoxifen. Wow. That’s something you can do for yourself. I’m not talking about running or doing marathons. I’m talking about going out and walking four or five times a week and doing some weight training three times a week. You all know – those of you who have been introduced to the lovely tamoxifen and what it does – that weight gain is part of that. We’re trying to mitigate that weight gain, and it’s also going to help the lymphedema. The lymphatic system responds to activity. It does not respond to inactivity.Think about patients who have been in the hospital in bed for two weeks; if you look at their extremities, they tend to be swollen. That’s because their lymphatic systems are not very active. Exercise is very important; that’s a big, big moderator for these things. Signs of lymphedema: Well, often someone comes in and says, “My arm feels heavy or full. My skin feels a little tight.” Everybody, look at your wrist on the side. When you look, those of you who don’t have lymphedema, you should be able to see tendons and veins pretty clearly on both sides. Sometimes one of the first signs is, “Huh, I can’t see that tendon on this side, and my vein, it’s

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not the same.” Don’t ignore it; have someone look at it. Also, your jewelry might be tight: “My ring is tighter. My watch is tighter. My sleeve is tighter.” Something is going on there, so you need to find some way of addressing that. Let’s talk about treatment. First of all, good skin care. I already talked about that. Keep your skin moist, clean; minimize the chance for bacteria to get in there. The type of treatment that’s most recognized for lymphedema includes the manual lymphatic drainage. It’s very light massage. Remember, the capillaries are right underneath the skin, so the skin being moved by that very light massage opens those lymphatics. It’s very important to understand that there are people out there, including PTs and OTs, who never have had any specialized training, so they decide the best way to treat this person’s swelling is to pump the arm up toward the chest, because that’s where all fluid is supposed to go, right? Well, they do it deeply, and to tell you the truth, it doesn’t really work. When you do deep massage, you’re pushing against those lymphatics. You’re probably closing them rather than opening them. If a therapist who doesn’t have lymphedema experience says, “Oh, I can treat this,” you’re going to go, “Let’s talk about this a little bit. What kind of massage are you going to do? Where were you trained? What kind of training?” Let’s talk about training, all kinds of training. There is Vodder training. There’s Leduc training. There are different methods. There has been no study whatsoever that says Vodder training is better than Leduc is better than this. What you really want to know is whether they have a good sense of this whole program of lymphedema management. If not, they won’t do the rest. They won’t talk to you about compression sleeves and bandages. They won’t talk to you about the exercise research. Be wary; be a good advocate for yourself in terms of these people. Let’s talk about compression bandages and sleeves. Along with the massage, you want to have some type of compression, because the compression does a couple of things. It supports the tissues, and it feels better.The sleeve does mostly that. For some people, it minimizes the fluid that’s going out in the arm, and it maybe treats it a little bit. For other people, what treats better are these bandages that I just spoke to you about. In fact, we know that with those bandages on, particularly when you exercise, you can increase lymphatic flow by 15 times its normal rate. Wow, that’s great.

If you have lymphedema and you’re exercising, you should have bandages on, or the sleeve. I think the bandages work better. They’re a nuisance – no doubt about it – but I think they work better. Do they work for everybody? No. There are a number of people in my practice for whom they don’t do a thing, and neither does massage. They end up in sleeves because it’s the only thing that seems to matter, except for the exercise and losing weight. This person who’s treating you should know all of this. When you exercise, if you have lymphedema, use the bandages. WOMAN: Do you always have to get the bandages put on you, or can you put them on yourself ? TRUDY TURVEY, MS, PT: I teach people to do it themselves. It depends on whether you’re left- or right-handed. If it’s your right hand and it’s your left arm, you do pretty well. I teach families, whomever. WOMAN: I have a question about the compression sleeve. I had a sleeve that was custom made. They did the measurements and all of that, but the sleeve seems to cut into my inner arm. If it’s a custom-made sleeve, is there any hope that getting a different one would help in that particular area, or is there anything I could put in that particular area that would help? TRUDY TURVEY, MS, PT: When you say it cuts, do you mean it rubs or it actually is too tight? WOMAN: It rubs and causes almost an abrasion. It’s not tight at all, but it rubs. I still have the scars from the last time I wore it, so it’s a problem. TRUDY TURVEY, MS, PT: Even though you were measured, it probably was not custom. You can get measured. Custom sleeves are for arms that have distorted shapes or are really, really big, and you don’t look to me like you qualify. Yes, they measured you, which means you get a size one, two, three or four. That would be my first question to whoever got it for you. I would take that sleeve and say, “This isn’t working. I need something else,” because a sleeve should not cut into you. It should not cause problems, except at the elbow there are some problems.

WOMAN: On the elbow side, I had no problems, just on the inside. TRUDY TURVEY, MS, PT: Probably that wasn’t a custom sleeve – I’ll repeat that. What you can do is have a piece of silk sewn in. They can do that at the place where they ordered it, like Juzo or Jobst, depending on where you got it. People take it to seamstresses. That would be the best solution; anything else will just kind of crinkle and be a problem. Yes? WOMAN: I was going to answer her question. Maybe the sleeve was too long. You can take some of the slack out of it or put something ... TRUDY TURVEY, MS, PT: It’s a frequent problem, that elbow stuff. It may be a little too long or not fit you snugly enough at the top to stay up. That could be a problem. I would recommend, if you’re going to get an arm sleeve, to get the silicone tops. For many people, the ones without a top slide down a little bit. It depends on the shape of your arm as to whether it slides down. You might check that out. Yes? WOMAN: My question is along the same line as the previous question, except that I’m having problems right here in the thumb area. It’s all red. TRUDY TURVEY, MS, PT: Is that a glove, or is that part of the whole sleeve? WOMAN: It’s one sleeve. It goes from here up to here. It’s getting sore and red in there. Would I do further damage if I put something like some cotton or something in there? TRUDY TURVEY, MS, PT: I don’t know that you’d do further damage. First, it’s not fitting you well if you’re red. That’s a concern. There is a type of soft, cotton batting. Are you from here? WOMAN: I’m from Houston.

TRUDY TURVEY, MS, PT: You could try cotton batting, and there are a lot of different types of gloves. Some of them have seams in there. Do you have a seam? Sometimes that is just not the right kind for you. It fits everybody differently. The one Margaret has just brought to me – see, hers is very different. Hers is separate. It’s also a lighter weight. With the ones that have the sleeves built in, you’re kind of committed to wearing that hand piece all of the time, so you can’t take it off for dishes and you can’t take it off to do anything. I try to get people two separate pieces. But it should not be so tight. We have repeated problems with that. If they measured you for a true custom one, you really have the right to go back and say, “This is not working for me.” With the standard ones, which are a lot less expensive, you end up having more of those problems and trying to solve them. If it’s causing redness anywhere, though, you don’t want that. That’s irritating your skin, and it could cause breakdown. You definitely want something different to be done. For those of you who have to wear sleeves but want to be fashion bunnies at the same time, we have something called the [Sliver Sleeve]. Kim is going to show it to you. Stand up, Kim, and show yours. A lot of people don’t like that boring beige, and if you want to go out, I just wanted to show this to you. This is Kim’s new company, and she has some great bookmarks up here to show you what stretches you should be doing. … They’re all adjustable, and you can ask questions about them after. I think they’re pretty cool. Another question? WOMAN: I just had a question. I don’t have lymphedema yet, and I hope I don’t, but in lifting weights and things like that, should you wear the sleeve when you’re lifting or doing exercise like that now? TRUDY TURVEY, MS, PT: My next thing about sleeves. If you have lymphedema, you should wear them. If you don’t have lymphedema, I don’t know. I have a real thing about getting people to wear sleeves if they don’t already have lymphedema. It’s like being told to wear one when you fly. Let’s talk about flying. That recommendation came after a retrospective study, which means they wrote to everybody who had lymphedema on this list and asked them how they got their lymphedema. One of them wrote back and said

she got it after a plane ride – one out of 100 women. How does she know she got it because of the plane? How does she know she didn’t get it because she lifted her suitcases, because she was under stress, because she had a lot of salty food, because she sat on the plane like this? There are a lot of ways to get lymphedema. Unless someone is really scared, I don’t usually get them [a sleeve]. The same with weight training – if you don’t have lymphedema, no, that’s not where I start. WOMAN: I was told specifically that … you have to do that. TRUDY TURVEY, MS, PT: I never had a patient who flew who came back and said her arm swelled. I just had a patient who flew all the way to India and back who has lymphedema who said she didn’t wear anything and it was fine. Does that mean that out of this whole room one person isn’t going to come back swollen? Maybe, but why? Is it really because you were on the plane, or is it because you decided to lug those suitcases and eat salty food and caffeine and you didn’t hydrate well enough? I don’t know. I would not recommend that you [wear a sleeve] as a preventive, and the reason is that we don’t have any study. We have no study at all that says it prevents it, so that’s a huge market and a lot of money. WOMAN: On that same note, I was told never to lift anything more than 15 pounds. TRUDY TURVEY, MS, PT: Oh, my gosh. Why don’t you just go to bed? WOMAN: I know. TRUDY TURVEY, MS, PT: I’m sorry. This just drives me crazy. You can lift 15 pounds, but not if you haven’t ever lifted 15 pounds since your surgery. You get yourself strong so that 15 pounds is nothing. That’s the whole point of it, and that’s the research that’s coming out. That is not a recommendation anymore. It’s a recommendation if you’re just postsurgical and you haven’t had any PT and you haven’t healed and you haven’t done any exercise to get you there.

WOMAN: I’m not sure whether this is lymphedema, but it sounds like it, based on the slide you just showed. If you have tightness in your arm and your wrist is swollen and your watch isn’t fitting anymore, does it just go away? And if it does just go away, is it not lymphedema? Don’t you have some kind of treatment in order to make the swelling go down, like you mentioned? TRUDY TURVEY, MS, PT: Maybe, but I will tell you that for a lot of people, it does go away. WOMAN: It can just go away by itself ? TRUDY TURVEY, MS, PT: It could. I would never tell anybody to not get it looked at, though, because it might not [go away]. WOMAN: If it does go away by itself, should you take precautions, like wearing the arm sleeve to go fly, even though you said you don’t have to wear it? Do you have to take precautions then? If you’re prone to it once, are you prone to it over and over again? TRUDY TURVEY, MS, PT: Yes. Once you have it, you have it. There is no cure for lymphedema. Can it be minimized? Can you actually say, “Well, my arms look pretty close to normal”? Yeah, you can definitely get there. But once you are at risk for lymphedema, you are always at risk for lymphedema. These precautions that I’ve given you, you always should have those in your head. Should you wear a sleeve every time you fly? As I said, I don’t think we know that. People tell people that, but there is no research that supports doing that. WOMAN: I just gained a lot of weight, so I’m not used to seeing my arms as large as they are, and it’s hard for me to tell. Today I had a short-sleeved shirt on, and on my surgery arm, the sleeve was tighter than on the other one. What else can I look for to see if that’s a sign of lymphedema or if it’s just fat? My arm is irritating me, but it has been since I had surgery. TRUDY TURVEY, MS, PT: How old is your surgery? WOMAN: August.

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TRUDY TURVEY, MS, PT: Was the sleeve tighter on the non-surgical arm? WOMAN: It wasn’t as tight. It was tighter, yeah. I mean, I’ve gained a lot of weight. It was tighter, but it wasn’t as tight. TRUDY TURVEY, MS, PT: Are you right-handed or left-handed? WOMAN: I’m right-handed. TRUDY TURVEY, MS, PT: Which is your surgical side? WOMAN: My left. TRUDY TURVEY, MS, PT: You should have somebody look at it to see. The best answer would be, “You’re fine,” but it’s different, isn’t it? When something’s different than what it was, that’s when you get it looked at. Hopefully the answer from somebody who really knows lymphedema will be, “We’re just going to watch this, no big deal.” I say that a lot. Like, “Okay, let’s just try this.” WOMAN: I just didn’t know if there would be any other obvious signs that I could look for. TRUDY TURVEY, MS, PT: Well, that’s a big obvious sign. The other thing you could do is measure yourself at home or have somebody measure you. Measure yourself before your wrist bones, at your elbow and then maybe in the middle of your arm on both sides. If there is a difference of more than a centimeter, or more than a quarter of an inch, I would want you to be looked at. You’d have to go to your physician. Now, here is the thing. I have to tell you, I’m married to a physician, so I get to say anything I want about physicians. Our physicians are focused on the primary thing, which is the cancer, and that’s as it should be. Many of them are not going to think a tiny bit of swelling is [a problem]. It’s your body and it’s your life, and I urge you to say, “Well, I appreciate that you see it that way, but I would like to see a physical therapist, and please write me a prescription.”

There is nothing wrong with being your own advocate. Don’t take that, “Well, you’re okay.”You know something is different, right? So act on it. The worst that could happen is that somebody says, “Yeah, I think this is lymphedema; here is what we need to do,” and you’ll feel better rather than it getting worse. WOMAN: I was diagnosed at 25, and I’m 16 years out. (Applause) Sixteen years ago, they didn’t ever tell me not to do these things, and I’ve been doing them for 16 years. In the past six months or so, I’m having an extreme amount of swelling on the left side of my body, which is where my surgery was. It’s not just my arm and my trunk, but all the way down into my leg, my ankles, my feet, toes, the whole shebang, and a lot of joint pain. I’m confused. Could it possibly be lymphedema? Do I need to look at something else? My doctor just gave me Lasix. I can’t say it helps. After flying in yesterday, I have to admit, I swelled up like a balloon on the left side of my body, and I’m very uncomfortable. TRUDY TURVEY, MS, PT: Did you take the Lasix? WOMAN: Yes. TRUDY TURVEY, MS, PT: Did it help? WOMAN: No. TRUDY TURVEY, MS, PT: Lasix does not help lymphedema – that’s number one. WOMAN: What is Lasix? TRUDY TURVEY, MS, PT: Lasix is like a water pill. It gets rid of water. WOMAN: It’s a diuretic.

TRUDY TURVEY, MS, PT: Yes, it’s a diuretic. Lasix doesn’t help. Almost everybody gets Lasix to try. I’m not clear about why you would swell on the entire left side of your body. That doesn’t make physiological sense in terms of just your cancer surgery. If it’s new and they haven’t quite figured it out, I would ask them to do a few more studies to try to find out why, because that’s not normal. Having both of your legs swell on a flight, that’s perfectly normal. Most people do; that I can see. Swelling in your left arm – that might be lymphedema. WOMAN: Normal? TRUDY TURVEY, MS, PT: But it’s kind of odd that it would also come with swelling in your leg. I’d be asking them to figure that out. You have to also remember that if you’re on a new medication, medications can cause swelling. Arimidex can cause joint pain and some swelling. Try to look at everything that’s changed. WOMAN: I don’t actually see an oncologist anymore. Three years ago, my oncologist said he didn’t need to see me anymore. Do you think I should start with an oncologist? Should I see a family doctor? Where do you think I should start?’ TRUDY TURVEY, MS, PT: I’d be at the oncologist. WOMAN: Regarding the repetitive motion discussion, I have a couple of things that I just want your opinion on. You were talking about carrying a purse. What about carrying things like bags down? TRUDY TURVEY, MS, PT: That’s okay as long as it doesn’t have the kitchen sink in it and your arm is prepared to carry it. I think that’s fine. WOMAN: What about pulling something like a suitcase? You were talking about lifting a suitcase. I understand your point was whether you’re prepared to lift that kind of weight, but pulling something or pushing something, like sweeping or a vacuum cleaner? TRUDY TURVEY, MS, PT: If you’re healed surgically and you’ve been active and you start slow and you don’t decide you’re going to clean the whole darn house, yeah. Those are normal activities, and you should be able to do them.

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WOMAN: Or you can use it as an excuse not to do that anymore. TRUDY TURVEY, MS, PT: Well, that, too. Let me see if I can just finish the slides, and then I’ll stick around for any other questions. Deep breathing: One of the things the lymphatic system responds to – it facilitates it, it makes it more active – is deep breathing. When you are exercising, if you are treating yourself in terms of lymphatic massage, deep breathing is really important. It creates a pressure inside the chest. It helps to empty the system. It pulls in the parasympathetic nervous system, which is your calming one. That’s what facilitates the lymphatic system versus the sympathetic one, which is your fight-or-flight, let’s get out of here kind of thing. That’s a really important thing. Again, normalize body weight. Exercise: I cannot stress it enough. Flexibility exercises, strengthening exercises, aerobic exercises, core strengthening exercises – all of those things are good for you. Everybody in this room should be doing that if for no other reason than it’s something you can control. It’s a way to hedge your bets about recurrence. It’s going to make you feel good. It’s going to improve your quality of life, and it’s going to help with lymphedema if you have it. I heartily recommend that. Well, you all asked me about simple things. Let me tell you some of the wild things people are doing. Has anybody seen the dragon boat stuff ? WOMAN: Yeah. TRUDY TURVEY, MS, PT: It’s so exciting. These women in Canada, all breast cancer survivors, some with lymphedema, some not – Susan Harris started this with one of her patients and trained people to row these dragon boats and compete. They did progressive resistive training, flexibility and aerobic activity, and you know what? No one’s lymphedema is worsening, and no one got lymphedema doing this. There are now, I think, over 30 dragon boat teams in Canada, and it’s gotten very big in Australia, I’m told – over 31 teams.

WOMAN: They just did it in Houston a couple of months ago. TRUDY TURVEY, MS, PT: That is great. Look at that kind of activity that people are doing. Golfing: Linda Miller is a therapist in Philadelphia – those of you in that area, Linda Miller is, I think, one of the best therapists you could go to; I trained under her – and she takes her patients golfing. She thinks it’s one of the best things for range of motion, strengthening, you name it. Walking. There is a study right now on bench presses to see if it’s a problem, since you’re told not to do this. Swimming. Dancing. Sherry Lebed has put out a video on dancing for lymphedema. I don’t know if it was her or her relative who had breast cancer surgery. Anyhow, it’s kind of cool. Triathlons – we have patients doing triathlons. Don’t limit yourself, but do it smart. Figure out what it is you need to do to get strong and flexible, and take care of yourself and figure out the best way to do it. Don’t give up something you love to do. WOMAN: Just as an aside, you guys, I ran a marathon seven months post-surgery, and my arm didn’t get any worse for the wear. TRUDY TURVEY, MS, PT: Yay! WOMAN: Not that I like doing them, but I was told not to do push-ups because of the downward weightbearing motion. Is that just a myth also? TRUDY TURVEY, MS, PT: Yeah, I don’t see why you can’t do push-ups. I wouldn’t tell you to do 20 to start, but ... WOMAN: Oh, I wasn’t.

TRUDY TURVEY, MS, PT: There is a way to progress push-ups, too. You start on the wall, which is much easier than lifting your body weight. Boy, that would be great for your scapular muscles. What are the problems with exercise? This is where people get into trouble: too much, too fast. They don’t warm up and they don’t cool down, so your system doesn’t get a chance to get back into an equilibrium. You need to gradually build your endurance for all activities, both muscular and cardiovascular. Vigorous, repeated activities when you’re not prepared – those examples I gave you were real life. Someone who was really fit prior to her cancer decided she was great. She went out and canoed for eight hours. She could have just done that for a couple of hours; she didn’t have to do the whole day. That’s the kind of stuff that happens. Keep hydrated. Keeping hydrated facilitates your lymphatic system, makes it move more fluid. If you have lymphedema, during these activities, do wear your sleeve and/or bandages. What’s new? Well, gosh. I wish I could tell you wonderful things are new. I will tell you a couple. Something called kinesiotaping – anybody know about this? What’s your experience? WOMAN: I developed lymphedema four years postsurgery, and I’ve tried basically everything at this stage. I tried the kinesiotaping as well. This is in the past couple of months. It had a short-term effect. When I put it on or wore it, you could see the difference, but I wouldn’t wear it all of the time. I just continued to wear my sleeve. But it was easy to wear. TRUDY TURVEY, MS, PT: We need more research in this. Let me explain to people. Kinesiotaping is a way of taping, and you tape along the lines of where you want the lymphatic flow to go. Margaret’s experience was that it helped while it was on. Did it last for any time after you took the tape off, Margaret? I’ve had a couple of patients I’ve tried it on. One was a post-surgical total knee replacement with a huge amount of swelling. I also did a massage. But I couldn’t keep the bandages on her, so I thought, “Oh, heck, I’ll just try this.” I was absolutely amazed. The next day, she came in and it was probably down a half-inch. Her swelling was a little different from lymphedema swelling.

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I just tried it on another woman whose swelling was the result of an infection, so it was relatively new swelling. While it didn’t change the girth, what it changed was the induration, or the amount of cellular debris, so there was some change in the lymphatic flow. My sense is that we need some more research. It may be that the extent of fibrosis in the arm is the dictator of how well the kinesiotaping works. I don’t know, but I think it’s an interesting area that we’re looking at. There is a physician in Arkansas looking at laser and infrared. It’s a preliminary study; there are no results. I did have a patient who used infrared on her leg swelling. She felt it helped a great deal. I have mixed feelings about it, because I continue to treat her. I’m not really sure. Then again, only she knew how her leg felt. Then there are homeopathic remedies. Does anyone have any experience with anything that they felt worked? There are a couple of things. They are doing a study at [University of Wisconsin]Madison where they’re looking at horse chestnut, which has been used in Europe for years for venous insufficiency…

The other big thing is that in Australia and a number of countries they have used benzopyrenes, otherwise known as coumarin – not Coumadin, which many of you have been or are on, but coumarin. This helps to break down that cellular stuff and really helps lymphatic flow. Unfortunately, there were a lot of liver toxicity issues. There are foods that are high in coumarin: celery, for example. I thought to myself, “I wonder if that would have the same effect as the coumarin itself.” You can get coumarin through some pharmacy in Texas. You would have a very different time getting a physician to prescribe it for you here, however, because of its toxicity. We’re looking more and more. A new research group that’s been established is feeling like many of you with lymphedema do: that there has got to be some other way to do this. So, with hope, we may see that change.

WOMAN: How much celery are you talking about? (Laughter) TRUDY TURVEY, MS, PT: I have no idea. I only throw that out, as I thought, “Well, that’s very interesting that that’s in there.” There is no study. There is nothing to tell you. You might turn green before it does anything, so I don’t really know. … LANITA MOSS: A quick housekeeping, guys, because we’re running over. Thank you, Trudy, very much. It was very informative. TRUDY TURVEY, MS, PT: Thank you. Great. Thank you. If anybody has any questions, I’ll be happy to be here. [END OF TRANSCRIPT]

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