Canada’s Lymphedema Magazine
Pathways
Acc Path ess w Onli ays ne See pag e4
FALL 2017
Empowering patients and professionals
Quality of life after surgery
Lymphedema medication brings hope
International conference review NOUVEAU... B959_CLF_Pathways_Fall2017.indd 1
une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways 2017-08-25 4:27 PM
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Editor’s Message
A glimmer of hope I
f your summer seemed to go by quickly, perhaps it was because it was late getting started. The Canadian weather certainly has been unusual in most parts of the country. My summer started in Syracuse – an inspirational venue for an international conference. I was privileged to listen to new research, treatments, protocols and products that will help drive lymphedema care forward. We were fortunate enough to have two other Canadians there as well. Thank you to Dr. Anna Towers and her sister, Lina Demanins, for their great conference overview and for acting as great ambassadors for the Canadian Lymphedema Framework. Through their promotion of our own Canadian conference and Pathways magazine to the delegates and exhibitors, we welcome several new advertisers in this issue and as exhibitors this fall. A news release from Stanford University earlier this year spurred a lot of excitement around a study finding the first possible drug treatment for lymphedema. Dr. Stanley Rockson, the chief investigator of a current clinical trial, was kind enough to sit with Dr. Anna Towers and me to give an overview to our readers about this development. Although many years away yet for clinical practise, the study provides an extraordinary glimmer of hope to the lymphedema community. Surgical options for lymphedema are gaining momentum and we thank Dr. Alex
Munnoch, who gives his perspective that quality of life is an important measure when evaluating the success of any treatment. We are eager to hear more about this topic this fall, as we are honoured to have Dr. Munnoch as one of our keynote speakers. Of course, Combined Decongestive Therapy continues to be the cornerstone of lymphedema care. Edith Mulhall and Wendy Leroux, two lymphedema therapists from Manitoba, share a case study where this approach, used by an interdisciplinary team of health professionals, made a huge impact on their patient’s quality of life. Where will new treatments lead us in the future? We rely on dedicated researchers to lead the way. Robert Kilgour, Hassan Rivaz and Anna Towers share their research regarding Elastrography (a new ultrasound technique) as a diagnostic tool for lymphedema. This issue also profiles researcher Pierre von der Weid, who is conducting innovative research developments in Alberta, courtesy of a generous donation made by the Kipnes Foundation. Alberta is also leading the way in making provincially funded lymphedema care assessable to all lymphedema patients. Lori Radke and Elizabeth Girling share their province’s protocol. Although not yet a perfect system (i.e. long waiting times to be reduced), it’s a start for Canadians who hope that reimbursement of care can be the responsibility of our health care
system, regardless of how they developed lymphedema or what part of their body the swelling may be affecting. Mike Holloway provides his perspective on living with a spouse who has lymphedema and the impact that may have on a relationship. We applaud Mike for sharing this personal story and reminding us that lymphedema impacts many aspects of our lives, beyond just the physical complications. In closing, let me introduce two new Pathways Editorial Board members, Lori Radke and Angela Dunphy. Lori is a physiotherapist from the Tom Baker Cancer Centre in Alberta and a repeated contributor to our magazine. Her clinical knowledge will serve us well. Angela is one of the founders of the Lymphedema Association of Newfoundland and Labrador and provides the patient perspective on our board. Her experience in preparing and editing submissions will help round out our editorial team. Welcome aboard! LP
Anna Kennedy
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Contents
Lymphedema medication brings hope
5 9 12
Exciting potential for a new pharmaceutical solution.
................................................. Fall 2017
n
Quality of life following surgical management of lymphedema
Volume 6 Issue 4
Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates. Editorial Board Angela Dunphy Pamela Hodgson PT David Keast MD FCFP Lori Radke PT, CLT Anna Towers MD FCFP
Evaluating important outcome measures.
............................................. Report from International conference
Experts discuss global progress in lymphedema diagnosis, treatment, research, and education.
............................................. Lymphedema management in Alberta Health Services
Editor Anna Kennedy Editorial Interns Nicole Boulet, Rhianna Davis Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or reflection of the views and opinions of the CLF and its Editorial Board. Contents may not be reproduced without written permission of the Canadian Lymphedema Framework. Subscription Rates (1 year) Canada–$25. United States–$50. International–$65. Single copies and back issues–$7. Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca Stock photos in this issue: CanStockPhoto Other photos are courtesy of Alberta Health Services, E. Mulhall, L. Demanins, W. Leroux, A. Munnoch, SkylineServices, S. Rockson, T. Smith, P. von Der Weid, S. Little, R. Kilgour.
Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 Printed in Canada
Leading the way for provincial lymphedema care.
....................................................................... Advancing technological innovation with ultrasound in breast cancer-related lymphedema
Developing a new diagnostic tool: Elastography.
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........................................................... Profile of a researcher: Pierre-Yves von der Weid
Understanding the critical role of the lymphatic system to provide relief to lymphedema sufferers.
Lipo-lymphedema in an elderly female patient Working collaboratively to improve a patient’s life.
................................... Living with lymphedema
A spouse’s perspective.
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CASE STUDY
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TO ACCESS PATHWAYS ONLINE Login information: www.canadalymph.ca/pathways-online User name: PathwaysSubscriber Password: medication
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Research Advances
Lymphedema medication brings hope
Exciting potential for a new pharmaceutical solution Dr. Anna Towers and Anna Kennedy recently sat with Dr. Stanley Rockson at the International Lymphedema Framework Conference in Italy to learn about the clinical trial underway for an exciting new potential pharmaceutical solution to lymphedema. The purpose of this interview is to help our readers understand the drug’s mechanism of action, its potential for use in clinical practice and when we can realistically expect the drug to be approved for general use. Anna: A recent article published in “Science Translational Medicine” created a lot of buzz within the lymphedema community. Not only did the article provide hope for a pharmaceutical solution to lymphedema, but it surprised many people by describing lymphedema as an inflammatory process, rather than a “broken plumbing” issue.
microscopic nature, and the idea that we could undo the damage through growth factors and such did not seem promising. It occurred to me that in many diseases, the difference between somebody who is prone to a disease and somebody who has the disease has to do with how adaptable their tissues are to the underlying problem. We first needed to understand: what is lymphatically diseased tissue doing, what is it expressing and how is it Dr. Rockson: It has taken Dr. Stanley Rockson, professor of cardiovascular responding to the flow problem? a long, 15 to 18-year journey medicine and the Allan We started by studying to get to the findings of the and Tina Neill Professor the model of lymphedema in current study. When I began of Lymphatic Research mice and found an extraordilooking for drug treatments and Medicine at Stanford University. nary profile of inflammation. for lymphedema, it became Almost everything we could apparent to me that it was detect in the skin of the lymphedema mouse, unlikely that we would be able to rebuild the compared to the normal mouse, had to do “broken plumbing” seen in lymphedema. with inflammation and the immune response. The lymphatic system is of such a fine and Dr. Anna Towers MD, FCFP is a physician and Director of the Lymphedema Program at the McGill University Health Centre, Montreal. She is actively involved in various working groups and research, as well as being an advocate for lymphedema related issues. Anna Kennedy is the Editor of Pathways, Executive Director and founding member of the Canadian Lymphedema Framework. She was also appointed to the International Lymphoedema Framework board of directors since 2011.
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Stanford University, California. This was somewhat of a surprise in that era (approx. 1996), since until then, people were thinking of lymphedema largely in terms of flow issues. We repeated the work with human lymphedema patients and found again that the predominant picture was inflammation. Based upon that notion, I thought it was important to think about whether we could treat the inflammatory response of the skin to make the lymphedema go into a more latent phase. Again, we went back to the mouse model, and I chose a non-steroidal antiinflammatory that has two pathways by which it reduces inflammation. The first pathway involves an enzyme called cyclooxygenase. That’s the pathway that most anti-inflammatories work on (Aspirin, Aleve, Advil, Motrin and Ibuprofen). They all impair the cyclooxygenase process. We took a drug that does all of that, plus it impairs another pathway called 5-lipoxygenase (5LO). Ly m p h e d e m a p a t h w a y s . c a 5
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The results not only gave us hope that lymphedema could be treated medically, but challenged the notion that the structural changes of lymphedema are irreversible. We know that the products of the 5LO enzyme have a profound capacity to create inflammation. Upon using this drug in the mouse model, not only did the lymphedema resolve, but when we looked at the skin and tissues under the microscope, they also normalized. Everything that we can see in untreated lymphedema, as a pathological representation of the disease, went away. These results not only gave us hope that lymphedema could be treated medically, but challenged the notion that the structural changes of lymphedema are irreversible.
and returned to the animal model, where we began to look at other drugs. We have learned that 5LO, and the inflammatory mediators that it creates, called leukotrienes, are the key components. It appears that if we can block the production of leukotriene B4 with a specific drug, we can restore the ability of the lymphatic system to repair itself and allow the tissues to begin to heal. Dr. Towers: What is the name of this drug and are there any known side effects? Dr. Rockson: The beauty of all this is that the drug that we tested with animals, and in the laboratory, is a drug that’s been in active clinical use in Japan for about 35 years. In its generic form, it is called Bestatin, but the trade name is Ubenimex. Ubenimex (or Bestatin), has been used for over 30 years to treat forms of leukemia in Japan, a completely different action of leukotriene antagonism. It has no identifiable toxicity, and Responses to 5-LO inhibition in a representative breast cancer patient, before and after therapy. The abnormal skin thickening is nearly completely reversed.
We were confident that this result would be translatable to the human disease. We have completed a clinical trial of about 120 patients, in which we saw a 97% response rate to the same drug we used in the mice. The trial was conducted such that, after an initial observation of the first 60 patients (where only the active drug was used), we did a placebo control double-blinded component. The placebo patients of course did not respond, but the treated patients did. Again, we looked at the skin under the microscope and saw a fairly dramatic improvement in the structural components of lymphedema. I started to wonder: Was this a very nonspecific anti-inflammatory response, such that a lymphedema patient could buy ibuprofen or a similar drug from the corner drugstore? Or, was it targeting the 5LO pathway that yielded benefits? We began a further investigation 6 Ly m p h e d e m a p a t h w a y s . c a
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its side effect profile is as clean as any drug can be. In Japan, this drug has been used by many thousands of humans without incident. Based on the work that I just highlighted, we published a report in “Science Translational Medicine” earlier this year. A start-up pharmaceutical company, called Eiger, licensed the intellectual property from my scientific work and licensed the drug from the Japanese manufacturer. They now have the license to conduct a human clinical trial. Anna: Please tell us about the current trial. Dr. Rockson: Our current Phase 2 clinical trial was launched last July. We will be enrolling 45 patients with lower limb lymphedema (both secondary and primary). For the moment, we have chosen not to include congenital lymphedema patients.
The four trial sites are in Stanford, California; Columbus, Ohio; Orlando, Florida and Sydney, Australia. Enrolment is over half complete at this point. We plan to complete enrolment by December 2017. Ideally, the last patient will complete the trial by the third quarter of 2018, and we will report on the results shortly thereafter. The outcome measures we are using are: a change in skin thickness, volume, bioimpedance (a tissue’s ability to resist the flow of an electrical current), histology (microscopic tissue structures) and quality-of-life measures. We’ve created a quality-of-life score derived from Vaughan Keeley’s tool, but more specifically streamlined for the purposes of this study. Anna: Can you share what you’ve seen in the study so far? Dr. Rockson: So far, we are very excited. Of course, since it’s a double-blinded placebo trial, I’m blinded to the identity of the patients I’ve enrolled and whether they received the drug or the placebo. We have upwards of 30 patients in queue at my site right now, with a number who have already completed the entire protocol. A subset of patients is improving, and we can only assume they are not in the placebo group. Dr. Towers: Do you think that it might be possible to target, for example those who have just completed breast cancer surgery, and use this drug to prevent lymphedema? Dr. Rockson: Absolutely, but I imagine it would likely have to be implemented at the conclusion of radiation therapy, when all of the wound healing requirements are minimized. Timing will be important. The question that I have as a scientist and clinician is: can we prevent lymphedema or mitigate its development? Additionally, I am hopeful that if the drug is used long enough, and there is enough repair, the patient could stop taking the drug and still reap the benefits. The theory is that once you repair the vasculature, it will be self-sustaining. Dr. Towers: Theoretically, if this drug is a lymphangiogenic stimulus, why would it not increase the rate of cancer recurrence? Fa l l 2 0 1 7
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Maybe we can do something for all people: people who are at risk and hopefully people who are at various stages of the disease.
Dr. Rockson: There are two reasons. Number one, we know of Ubenimex’s 30-year track history as a cancer therapeutic. Although there is no existing database to tell us what happens to lymphedema in its use, we have strong evidence to suggest that it’s not pro-neoplastic, it’s anti-neoplastic, at least in the settings in which it was used (neoplastic means an uncontrolled growth of tissue). In addition, the drug is not pro-lymphangiogenic; it reverses the inhibition of lymphatic repair that exists in untreated lymphedema. Anna: Do you see this drug being effective at different stages of lymphedema? Dr. Rockson: Yes. In the forerunner study that led to the discovery of this drug, I had patients that had lymphedema for as long as six decades who responded. This idea that the tissue changes of lymphedema are irreversible is being challenged. For a long time, people thought you must catch lymphedema in time so you don’t end up frozen with it forever. Maybe we can do something for people who are at risk and hopefully people who are at various stages of the disease. I’m hoping that the human trial replicates what we’ve seen in animals and in the forerunner trial to date.
Anna: How do you plan to continue with this research after the trial has concluded? Dr. Rockson: Of course, if we get positive results, the sponsor will be predisposed to continue further studies. We are actually planning a study wholly devoted to primary lymphedema. We also need to look at the breast-cancer population, which is not addressed in this current trial. Additionally, I am very interested in the potential to use this drug to treat head and neck lymphedema, which is really a profound problem with very few solutions. We will eventually want to look at the question of congenital lymphedema. All of these subpopulations need to be looked at. We first need to learn about dosing, duration of treatment, treatment protocols and maintenance protocols. Dr. Towers: How long before this drug might be FDA approved and available? Dr. Rockson: If plans go smoothly, we’re probably looking at a three to five-year process. At some point, the pharmaceutical company is going to require data for the FDA on long-term use. That’s going to be another investigational mode in which more patients will have the opportunity to participate. Anna: Many of our Pathways readers are not only patients or health care providers, but also advocates for advancing lymphedema care. How can we help promote participation in clinical trials and contribute to the greater knowledge?
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Dr. Rockson: One of the obstacles in the lymphedema community is that the patient population is very naïve to the clinical trial process. This community has almost given up hope, in a way, that science would give them answers. Now answers can come, but the placebo control mechanism is necessary. For individuals who have the disease and are selected to participate in the trial, but end up receiving the placebo rather than the drug, their participation is still very important. We need to invigorate the lymphedema community. During this exciting time, it’s part of their societal responsibility, to themselves and to their community, to get involved. Anna: How much attention has this development garnered beyond the lymphedema community? Dr. Rockson: The response has been overwhelming. According to their website tracking, within one week of publication, our paper was ranked in the top 2% of all manuscripts that Science Translational Medicine has ever published. LP You can read the Stanford press release about this research at www.med.stanford. edu. Learn more about the ULTRA clinical trial by emailing rockson@stanford.edu or visit www.eigerl.com. You can also visit www.lymphaticnetwork.org to learn more about clinical trials. A full transcript of the interview can be found online at www.lymphedemapathways.ca.
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Surgery
Quality of life following surgical management of lymphedema Evaluating important outcome measures By Alex Munnoch
L
ymphedema affects about 250 million globally, the majority as a result of filariasis. In Western societies, most cases are either primary in origin, or secondary to cancer treatment, trauma or recurrent cellulitis. Much work has been done looking at the impact of lymphedema on patients’ quality of life (QoL), particularly in relation to breast cancer related lymphedema of the arm. Less has been published about lower limb and genital lymphedema. One author recently suggested that primary lower limb lymphedema, compared to secondary, had little impact on quality of life (Huggenberger), while another has suggested that lymphedema severity does not appear to impact QoL (Lee). Initial studies tended to use generic questionnaires, such as the Hospital Anxiety Depression Score (HADS), Short-Form-36 and EuroQol, but over the past 10 years or so, there have been a number of validated questionnaires introduced in Germany, UK, Sweden, USA and The Netherlands, which specifically look at upper and lower limb lymphedema (FLQA-I, LYMQoL, LyQLI, LSIDS, Lymph-ICF). These all have common features, separating questions into a range of domains covering physical, practical and psychological aspects of QoL, using either a visual analogue scale or a 4-point Likert scale to record responses. The main issues for most patients relate to compression garments, limb bulk, mobility, cellulitis, and understanding of the condition.
FIGURE 1a
Figure 1a: Primary lymphedema pre-op, 15166 mls excess volume, LyQLI score 49. Figure 1b: 1 year postop, 1046 mls excess, LyQLI score 1. However, the perception of quality of life and how much it is impaired is subjective and individual to each patient and the underlying aetiology of their condition. Improvement in quality of life is now seen as an important outcome measure when looking at treatment options. Numerous authors have reviewed the impact of conservative treatments, such as manual lymphatic drainage, bandaging, compression garments, pneumatic compression, and exercise on patients’ quality of life. Surgical management of lymphedema, popular in the 60’s & 70’s, diminished thereafter due to poor techniques, poor outcomes
Dr. Alex Munnoch FRCS Ed (Plast) is a consultant plastic surgeon at Ninewells Hospital, Dundee, Scotland providing surgical treatment for lymphedema patients and has presented his results at numerous national and international conferences. Dr. Munnoch helped develop the surgical lymphedema service at Macquarrie University Hospital in Sydney, where he holds the position of honorary professor.
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FIGURE 1b
and much better conservative therapies being offered by an increasing number of lymphedema therapists. In the last decade, there has been a resurgence of surgical techniques due to improved awareness, better surgical skills and patient selection. These techniques fall into two broad categories: those designed to improve lymphatic drainage (reconstructive) and those that reduce excess tissue (debulking). Many papers have been published describing individual surgeons’ experiences with these procedures, often with small cohorts of patients, where the prime outcome measures are a reduction in limb circumference or volume and a reduction in the incidence of cellulitis. There are only a few papers reporting quality of life outcomes using validated questionnaires. Reconstructive surgical techniques Lymphatico-venous anastomosis (LVA) is a technique whereby functioning subdermal, or deeper collecting lymphatics are identified Ly m p h e d e m a p a t h w a y s . c a 9
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and anastomosed to adjacent veins to improve the drainage of the limb. This utilises supermicrosurgical techniques, as these vessels are often less than 1mm in diameter. Multiple anastomoses are usually performed throughout the length of the limb, commonly under local anaesthetic. Modest improvements in limb volume have been reported, but the long-term effectiveness is still to be confirmed, with some authors reporting a reduction in patency after one year. Cornelissen reported significant improvements in QoL using the Lymph-ICF in a cohort of 20 women with early arm lymphedema following LVA surgery. Lymphatic grafting has not found universal acceptance and is only performed in a few centres in Germany. Functioning lymphatic vessels are harvested from a thigh and either tunnelled to the contralateral lymphedematous leg and anastomosed to collecting lymphatics, or removed as a graft and placed between a lymphedematous arm and lymphatics in the neck. In a longterm follow-up, excellent reduction
of limb volume was achieved and significant improvement in QoL noted in a cohort of 212 patients (Springer). Lymph node transfer has become extremely popular in the past few years, with multiple surgeons offering this procedure. A vascularised lymph node free flap is removed from a donor site (groin, axilla, neck, omentum) and transferred to the lymphedematous limb where the artery and vein are anastamosed to revascularise the tissue. No lymphatic repair is undertaken. The expectation is that lymphangiogenesis will take place, with new lymphatic channels growing from this tissue and anastomosing with lymphatics in the limb, creating new drainage pathways. Some surgeons believe in placing the nodal tissue in the old nodal basin, while others prefer to place the tissue distally on the limb. Reported outcomes are variable, depending on the measurement method for limb circumference or volume, and the stage of the lymphedema. Patel reported in 2015 on QoL outcomes following vascularised node transfer using the LYMQoL questionnaire, noting improvement
in all domains. Ciudad reported a 2.6-fold improvement in LYMQoL scores with a mean volume reduction of 36% in his cohort of 10 patients. Gratzon similarly reported improvement in LYMQoL scores in a series of 50 patients, also noting a significant reduction in the incidence of cellulitis. However, this technique is not without its risks. There is the danger of flap failure or lymphedema developing at the donor site, which may have an adverse impact on quality of life for the patient. With all reconstructive techniques it would appear that intervention at an earlier stage has better outcomes. Release of axillary vein scarring was originally described in the 1970’s and again in the 90’s as a means to treat breast cancer related lymphedema, with up to a 60% reduction in excess limb volume being reported. This may be the underlying principle of improvement seen in some of the lymph node transfer patients. More recently, a team in Belgium has started performing scar release through small axillary incisions with harvested fat being placed around the vessel.
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FIGURE 2a
FIGURE 2b
Figure 2a: Secondary lymphedema, 4979 mls excess, LyQLI score 94. Figure 2b: 1 year postop, 248 mls excess, LyQLI score 32. They have demonstrated a reduction in limb volume postoperatively without any additional conservative therapies. Debulking techniques Debulking techniques were originally described over a hundred years ago and were the mainstay of treatment prior to microsurgical reconstructive techniques and compression garments. Excisional techniques, such as Charles procedure, which involved circumferential excision and skin grafting, or more limited excisional techniques, like those described by Sistrunk, Kondoloneon and Thompson, resulted in significant scarring, often limited volume reduction and further psychological distress for the patient. These techniques can, however, be very successful in the management of penoscrotal lymphedema. In 2006, Modolin published outcomes on 17 patients with penoscrotal lymphedema, reporting improved physical appearance, ambulation, hygiene, micturition and sexual function. Full limb liposuction and 24-hour continuous compression was introduced by Brorson 20 years ago and remains an effective technique for reducing (and maintaining) excess limb volume. There is now a much greater understanding of the pathogenesis of lymphedema and the fat hypertrophy which results. Conservative therapies and reconstructive surgical techniques can reduce the lymphatic fluid element of a lymphedematous limb, but will have no impact on the adipose tissue. Fa l l 2 0 1 7
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Surgeons undertaking reconstructive techniques now routinely include liposuction in their treatment protocol to achieve total excess volume reduction. Brorson has demonstrated long-term limb volume reduction in the incidence of cellulitis and improved shoulder function and QoL for women with breast cancer related lymphedema.
were wearing compression garments prior to surgery. Liposuction was performed following Brorson’s technique and the patients were placed in compression wraps immediately, reverting to compression hosiery at two weeks. 37 lower limb lymphedema patients (3 male, 34 female) have undergone treatment in the past four years. 22 had primary lymphedema, average age was 43 years (21-67), average length of time with lymphedema was 19 years (5-38) and average excess volume was 4159 mls (848-15166). At one year follow up there was an average reduction of the original excess limb volume of 93% (62-170). Mean scores can be seen in Table 1, demonstrating a significant improvement in QoL outcomes within all domains, particularly psychosocial, maintained at 1 year. However, at the individual level there was great variation, with some patients having full reduction of excess volume, yet still having significant QoL issues, often due to other life events (Figures 1 and 2). Similar improvements were seen with the HADS and Lymph-ICF questionnaires.
TABLE 1
Mean Scores
Physical (36)
Psychosocial (48) Practical (39) Total (123)
Pre-op
20.375 (57%)
29.81 (62%)
21.12 (54%)
71.31 (58%)
4 weeks
13.75 (38%)
14.71 (31%)
12.57 (32%)
41.03 (33%)
3 months
10.97 (31%)
9.125 (19%)
6.83 (18%)
26.93 (22%)
6 months
7.75 (21%)
9.125 (19%)
6.83 (18%)
23.71 (19%)
12 months
11 (31%)
10.875 (23%)
7.6 (20%)
29.48 (24%)
My work I have been performing liposuction since 2005 and measuring quality of life outcomes using the HADS questionnaire. Since 2013, as part of an international collaboration, I have also been using the LyQLI and ICF-LL with all my patients pre-operatively and at 3, 6 and 12 months postoperatively. The LyQLI asks 41 questions within three domains for a maximum score of 121 (36 physical, 48 psychosocial and 39 practical). The LymphICF asks 28 questions over five domains. With all three questionnaires in use, a high score indicates poorer QoL. All patients had received the full range of conservative therapies and
In summary, lymphedema has an adverse impact on patients’ QoL, even when they are receiving maximal conservative therapy. Surgical interventions have been shown to help reduce limb volume, reduce the incidence of cellulitis and improve the QoL for these patients. Patient reported outcome measures need to be included when assessing the effectiveness of any treatment and should be used routinely with all patients. LP A comprehensive set of references can be found at: www.lymphedemapathways.ca L y m p h e d e m a p a t h w a y s . c a 11
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Conference Review
Report from ILF conference Experts discuss new treatment approaches, innovative studies and more By Lina Demanins and Anna Towers The 7th International Conference of the very low compression in the elderly, International Lymphedema Framework (10-20 mm Hg), and a Picopress machine (ILF), co-hosted by the Italian Lymphedema to check sub-bandage and sub-compression Framework (ITALF) was held in Syracuse, stocking pressures. Sicily. The backdrop of sea, sun and Greek ruins made for a memorable experience. Professor Christine Moffatt (UK) shared It was an opportunity to meet international preliminary results from the LIMPRINT study. speakers and colleagues, share findings The goal of this study is to provide evidence from the LIMPRINT study, learn of the latest of the prevalence of chronic edema and research on treatment approaches lymphedema as a massive global public and surgeries, and discuss future health problem. Data has been research needs. The exhibitors collected from 13,000 patients: showcased unique and 73% were women, 30% had innovative products for both lymphedema and lymphedema treatment, wounds, 58% had lower such as silicone-lined limb lymphedema and 15% bandages, waterproof had primary lymphedema. bandage protectors, expandMany patients had not able socks and alternative received a lymphedema Velcro-type compression dediagnosis or treatment. Susan Nørregaard, Margaret vices. We hope that some of Sneddon and Hiromi Sanada. these suppliers will consider Dr. Vaughan Keeley (UK) making these products available in Canada. introduced the ILF Outcomes Project, which will propose standardized international June 21: Joint ILF/ITALF panel outcome measures. It is expected that Marina Cestari (Italy) emphasized the volume changes, cellulitis rates and patientneed for looking at functional age in determined outcomes will be the top the elderly, rather than chronological suggested outcome measures. age, when determining an approach to treatment. The many co-morbidities Isabelle Quéré (France), primary seen in the elderly require a wider multidiscilymphedema expert, is working on including plinary team approach. Their team uses new data on children’s issues in the Lina Demanins BSc OT, CLT (CS) works at the McGill University Health Centre Lymphedema Program in Montreal. As a trained lymphedema therapist and occupational therapist, she actively promotes self-management, education and the involvement of allied health professionals in early screening and treatment. Dr. Anna Towers MD, FCFP is a physician and Director of the Lymphedema Program at the McGill University Health Centre, Montreal. She is actively involved in various working groups and research, as well as being an advocate for lymphedema related issues.
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Chair of the International Framework, Professor Christine Moffatt. updated ILF document on pediatric lymphedema. June 22: Welcome plenary Stanley Rockson (USA) officially introduced the importance of the LIMPRINT study in providing hope to the lymphedema community by extending the knowledge and facts to support the changes needed. Full study results will be published as a compendium in the 2018 Journal of Lymphatic Research and Biology, of which Rockson is the Editor. Free Paper session Rinaldo Caldirola (Italy) discussed the use of silicone-lined bandages in a study of 53 patients with either primary or secondary lymphedema. He reported optimal pressure peak and stiffness values. Neil Piller (Australia) discussed his findings using the intermittent pneumatic pump, which showed no change in circumferential measurements, but a positive effect on patient quality of life scores. In a lunchtime session, Christine Moffatt stressed the importance of lymphedema self-management, stating that it should be a cornerstone of decongestive lymphatic therapy (DLT). Moffatt emphasized that lymphedema is a chronic condition and those affected should be provided with resources for supportive care throughout the patient trajectory. She suggested the new terminology: “supported self-manFa l l 2 0 1 7
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agement,” which should be a key message targeted to funders of health care. She also discussed the problem of lymphedema associated with morbid obesity. She suggested that more of these patients should be referred for bariatric surgery, as our conservative treatment methods are not enough.
(LVA). Subjects reported reduced pain and heaviness. However, Perometer measurements did not show reduced volumes. Subjects had reduced cellulitis rates. Of 65 total LVAs done to date, 10 patients reduced garment wear by 50% and eight reduced garment wear by 25%.
National Frameworks Members discussed projects in their specific countries. Italy: developing guidelines on lymphedema and new public health regulations. Japan: moving to national recording of data. Denmark: prioritizing national guidelines. Canada: patient and general practitioner education initiatives. France: combatting out-of-pocket payments for treatment. ILF: Educational Benchmark Standards.
Harry Voesten (The Netherlands) reported on a surgical treatment for lipedema using liposuction and localized debulking procedures. This surgery is not intended to improve cosmesis, and all patients need to wear compression garments afterwards. He also reported on circumferential suctionassisted lipectomy for late stage 2 and stage 3 lymphedema. 24/7 garment wear is obligatory after this procedure.
Surgical treatments Francesco Boccardo (Italy) presented on a lymphatic microsurgical technique known as LYMPHA. The aim is to prevent lymphedema in women who undergo axillary node dissection, who are at high risk of developing lymphedema because they are obese and have reduced lymphatic transport. Boccardo reported a low lymphedema incidence of 4% with this procedure after a follow-up of up to four years. No randomized trial has been done yet. Corrado Campisi (Italy) reported on procedures for advanced lymphedema where multiple lymphatics are anastomosed to a vein segment, followed by liposuction. Melanie Thomas (Wales) reported on a series of 42 patients followed for 4.5 years after lymphaticovenous anastomoses
high-tech solutions. Lymphedema clinical practice is often nurse-led rather than pharmacologically-based. Culturally, patients may be stigmatized because of their bodies, which can be perceived as embarrassing and unattractive. Politically, lymphedema lacks a high profile to put pressure on policymakers. There is a lack of knowledge among health professionals, because lymphedema is barely covered in health care education. Lymphedema therefore struggles against a set of deeply embedded barriers. Matteo Bertelli and Sandro Michelini (Italy) are actively involved in doing research on genetic testing and its impact on improving our understanding, evaluation and treatment of primary lymphedema.
Renate Roeterick-ten Have Liesbeth Vandermeeren (The Netherlands) spoke (France) reported on on the treatment of a procedure involving lipedema, stating that weight lipofilling of the axilla to reduction alone will not resolve a reduce intermittent collapse of disproportionate upper body the axillary vein that could Professor Isabelle Quéré. and lower limbs. Specific lead to pitting edema. They liposuction techniques in the hands of a are looking for partners to do longer-term good surgeon can reduce pain symptoms, multicentre trials on this procedure. and the fat does not tend to come back. June 23: ILF projects However, the patient needs to continue with Stuart Nairn (UK) spoke from a sociologist’s good lifestyle choices. perspective on why lymphedema is Children’s lymphedema undervalued and under treated, and why Elizabeth Coveney, Denise Hardy and patients are marginalized. He discussed the Christine Moffatt (UK) spoke of projects to low status of lymphedema. Lymphedema improve services for pediatric lymphedema has no simple diagnostic category, and patients. Isabelle Quéré discussed the patients’ symptoms are complex. Western importance of integrating children’s bioscience is focused on drugs, surgery and
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perspectives from the ILF children’s camp, with the different viewpoints from the staff and family members. Free Paper session Beverley de Valois (UK) spoke about acupuncture and moxibustion (a less wellknown herb that heats acupuncture points) in a study of patients, 3/4 of whom had breast cancer and 1/4 head and neck cancer. Patients noted physical changes, such as increased energy and motivation and less heaviness and pain. There is potential for this to support the wellbeing of lymphedema patients. Shasi Gogia (India) explained their model of community care for filariasis in a rural area. The prevalence of common treatments was outlined: surgery 5-10%, physical therapy 20%, and self-management 70%. They teach leg washing, skin hygiene and self-bandaging. Penicillin is given prophylactically to all patients for two years, as the risk of cellulitis in this area is so high.
Robert Damstra (the Netherlands) outlined the guidelines his team created for Lipedema treatment using a more functional approach, including graded activities, self-management, motivational interviewing and more. These are consistent with the International Classification of Function, Disability and Health (2001).
in the community. She also presented health economic data, showing a marked reduction in nursing and material costs, as well as cellulitis rates, when this pathway is used. Monica Conway (UK) presented a systematic review of breast cancer patients’ educational needs. Patients want more information, both before and after breast cancer surgery, in written form. Lymphedema education was perceived as being inadequate.
Jean Paul Belgrado (Belgium) discussed intralymphatic pressure. He challenged the low pressures currently used for Melanie Thomas (Wales) treatment. Belgrado stated Christine Moffatt, Sandro presented her work on the that using infrared fluorosMichelini and Neil Piller. impact of lymphedema risk copy, he found occlusion reduction recommendations. She found pressure to be 90mmHg in the arm that patients experience confusion and and 140mmHg in the leg on average. uncertainty because they receive conflicting June 24: Current thinking in advice. Women at risk for lymphedema have chronic edema and lipedema a marked fear of developing lymphedema or Karen Morgan (Wales) described their cellulitis. Although they have no lymphedema, pathway to deal with lymphorrhea (“wet legs”) they often change lifestyle behaviours in ways
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that could be perceived as reducing quality of bandaging five times weekly to cohesive banlife (e.g. avoiding going on holiday, avoiding daging twice weekly. They found similar outgardening). Thomas found that therapists comes for volume reduction, arm symptoms gave patients inaccurate and misleading and LYMQOL. However, the cohesive bandage information regarding risk reduction, by asking group found the system more comfortable them to avoid activities such as and experienced better upper limb dog walking or lifting weights mobility during the treatment. more than 2 kg. Only 30% New ways of thinking of therapists included the Christine Moffatt, in an inspirthree evidence-based ing talk, stated: “Change is recommendations linked neither a linear nor a logical to decreased cellulitis process.” We should not be risk: weight control, too discouraged when progexercise and avoiding ress is slow in our discipline! trauma. Thomas suggested rethinking what and how we Exhibit Hall. Aimee Aubeeluck (UK) spoke on give information, since fear may self-efficacy in relation to self-management. outweigh risks in the majority of situations. She described self-efficacy as having Information needs to be evidence based and confidence in one’s ability to achieve the individualized according to risk. intended positive health care results. Factors that might impact self-efficacy include Aysegui Yaman (Turkey) presented the lifestyle, obesity, cognitive ability, degree of results from a randomized study of 60 dexterity, social responsibilities, and finances. breast cancer related lymphedema patients, comparing a three-week program of multilayer Health professionals should guide patients
to become the expert on their own illness. Neil Piller (Australia) pointed to some important questions and directions for the future. We will see earlier detection and better targeted treatments, more research to determine who is genetically prone to develop lymphedema and research on how to help lymphatics recover after damage. He stated that we must improve surgical and radiological practices and provide surgery earlier, before the lymphatics become dysfunctional. Regarding risk reduction, he reiterated that the fear of lymphedema might outweigh the risks. In summary, this international event with over 15 countries represented provided a global overview of advancements in lymphedema research, diagnosis, treatment and education. The next ILF conference will be June 6-9, 2018 in Rotterdam, The Netherlands. LP A full listing of the conference speakers and free papers visit www.2017ilf-conference. org/programme for more information.
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Therapist’s Perspective
Lymphedema management in Alberta Health Services
Leading the way for provincial lymphedema care
Photo: Alberta Health Services (AHS)
Cancer-related lymphedema services are funded Alberta has been fortunate to have had strong through Alberta Health rehabilitation services at the Cross Cancer Services and are available Institute (CCI) in Edmonton for almost 40 to all Albertans who years. In the early 90’s, CCI physiotherapists have a cancer diagnosis. took an interest in learning more about treating The program continues lymphedema, as they were not satisfied with to grow and now offers the standards at the time. They trained to many cancer rehabilitation Perometer in use at TBCC rehabilitation oncology. become certified lymphedema therapists services to patients, seen for two full years. More timely referrals and offer best practice treatments to cancer including lymphedema are happening now at any stage of cancer patients. Today, the CCI continues to be a management. Other CancerControl Alberta treatment, including in palliative situations. leader in lymphedema treatment locations, including Lethbride, Red Deer and Typical treatment includes assessment, for oncology patients soon Grande Prairie, compression bandaging, skin care, exercise in Alberta. have added dedicated prescription, education and may or may not In 2006, after rehabilitation staff to include manual lymphatic drainage. Outcome advocacy by patients their cancer centers in measures are assessed using the LymQOL and the Alberta the past few years. Arm, Upper Extremity Function Scale and Lymphedema Association Acceptance to these the Godin Physical Activity Questionnaire (ALA), a private clinic programs requires in a standardized assessment form used was contracted by the Sheldon M. Chumir Health a doctor or nurse Centre (CALS location). provincially for breast cancer related Alberta Cancer Board practitioner referral. The lymphedema. The Cross Cancer Institute to provide lymphedema services to patients lymphedema must be related to their cancer and Tom Baker Cancer Centre Rehabilitation in Calgary. Three years later, the Tom or cancer treatments. Deep Vein Thrombosis Oncology have secured private funding to Baker Cancer Centre (TBCC) Rehabilitation (DVT) and infection must also be ruled out. purchase a Perometer, which saves time Oncology program was established to maintain All referrals are triaged; patients who are and increases the accuracy of limb volume these services. Only months later, it was palliative and those with lymphorrhea or measurements. Group and individual absorbed into Alberta Health Services (AHS) genital edema get urgent priority. Patients lymphedema education is also provided in CancerControl Alberta. Rehabilitation require a new referral if they have not been as both a lymphedema risk reduction and management strategy. Lori Radke PT, CLT is a physiotherapist who has worked in Alberta for
Photo: Tracy Smith
By Lori Radke and Elizabeth Girling
more than 25 years since graduating from the University of Alberta in 1988. She became a Certified Lymphedema Therapist and started the Rehabilitation Oncology Program at the Tom Baker Cancer Center in 2009. She continues to lead the program as the coordinator and actively treats patients daily. Elizabeth Girling OT, CLT is the Clinical Lead for the Calgary Ambulatory Lymphedema Service (CALS). She has co-presented on ‘Non- Cancer Related Lymphedema Management in Calgary and Surrounding Areas’ to physicians and Chronic Disease Management groups in Alberta. She is a participant of the Lymphedema Patient Advisory Committee in Calgary.
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Primary and secondary (non-cancer related) lymphedema Services in Alberta for those with primary and non-cancer related lymphedema have been limited. The CancerControl Alberta clinics initially provided consultation services for this population. In 2009, the Community Rehabilitation Interdisciplinary Service (CRIS) in Edmonton initiated a small pilot project. This service has been maintained and offers L y m p h e d e m a p a t h w a y s . c a 17
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In the chronic disease management model, the patient has an active role (as care manager) rather than being a passive ‘care consumer’. Aspects such as self-management and self-efficacy are very important. lymphedema assessment and treatment three days a week. In 2013, the Alberta Lymphedema Association successfully petitioned Alberta Health Services to fund a similar clinic in Calgary, establishing the Calgary Ambulatory Lymphedema Services (CALS) in January 2014. Services are offered to those residing within the Calgary and Southern Alberta Zones. Care is based on a Chronic Disease Management Model. Patients require a physician referral, which includes completion of a medical clearance form including an ankle brachial index and toe brachial index. To be eligible, patients must have a confirmed
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diagnosis of non-cancer related lymphedema, be 16 years of age or older, medically stable and safe to compress. Patients must demonstrate rehabilitation readiness and have the ability or supports to self-manage their lymphedema. Priority is given to those with a history of recurrent cellulitis, lymphorrhea, functional decline (e.g. medically unable to work) and referrals from wound clinics. Calgary Ambulatory Lymphedema Services received an extraordinary number of referrals the first year and subsequently found itself with a two-year wait time. Many referrals did not indicate a clear diagnosis of lymphedema, delaying triage processing. Increased awareness and confidence with diagnosing non-cancer related lymphedema improved over time. Referral numbers have remained constant over the past couple of years with wait-times reduced to approximately three to five months. CALS patients must participate in a group education session prior to assessment and treatment. Education on lymphedema, treatment, potential costs and resource
information are provided. A Patient Therapy Agreement is signed to promote treatment adherence, and the LYMQOL–LEG is completed. A brief one-on-one session is conducted to assess a patients’ readiness for rehabilitation, including their ability to reach their feet (to determine need for assistance to don or doff stockings), and to discuss how they may pay for expensive night-time compression garments if self-bandaging is not a viable option. A financial plan needs to be in place prior to starting treatment, usually within six weeks. AHS rehabilitation programs that treat patients with lymphedema endeavor to support each other in program access, educational opportunities and complex case management. In Calgary, there is a Patient Advisory Committee that meets twice a year with the Alberta Lymphedema Association, AHS, patient volunteers and clinic representatives to address ongoing development. We are all striving to assist these clients to manage this difficult chronic condition with best practices and the available healthcare resources. LP
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Similarities and differences between the programs
Cancer related lymphedema
Non-cancer related lymphedema
Referral
Physician or Nurse Practitioner
Physician
Stage of lymphedema
Usually 1-2, rarely stage 3
Stage 2-3
Area affected
More often upper limbs, but anywhere that the lymphatic system has been damaged by cancer or its treatment.
Usually lower limbs, often bilateral
Risk Factors DVT, infection, cancer recurrence
Infections, co-morbidities (such as obesity and chronic venous insufficiency)
Treatment
Compression garments, compression bandaging, MLD, self MLD, skin care, education, with or without night compression.
Same- but always includes night compression. Self MLD instruction but no MLD due to limited staffing.
MLD (manual lymph drainage)
Included during intensive treatment as indicated. Maintenance MLD in private clinics in the community.
Maintenance MLD in private clinics in the community.
Follow-up
3, 6, 12 months. Intensive treatment may be repeated if condition worsens.
One week after fitting and then yearly. On an as-needed basis.
Costs
No cost except cost share for garments through Alberta Aids to Daily Living (AADL) if not eligible for full benefit assistance. Patients cover night compression systems.
Same. 2 full sets self-bandaging materials provided free to those able to manage this task.
Compression garments
Circular knit or flat-knit; AADL coverage: 2-3 sets of garments per year.
Usually custom flat-knit. Same coverage by AADL.
Psychological challenges
Reminder about cancer, chronic condition, financial burden, effect on work.
Chronic condition, affects mobility and ADLs (activities of daily living), work, financial burden.
Education provided
Group and individual, ongoing.
Same.
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Research Advances
The development of a new diagnostic tool: Elastography
Advancing technological innovation with ultrasound in breast cancer-related lymphedema By Robert D. Kilgour, Hassan Rivaz and Anna Towers General overview Breast cancer-related lymphedema (BCRL) often presents as a chronic, progressive, multistage condition that is initially diagnosed by swelling of the arm and/or the hand. To assess tissue changes with some degree of accuracy, precise and reliable measurements are required, especially when determining the appropriate management strategy and protocol. Within the second stage of lymphedema, there are early changes in the tissues that, if assessed, would tell us who is predisposed to rapid development of complications. To date, no objective mechanisms have been identified to detect these early changes in the tissues. Current methods of assessment, such as dual energy x-ray absorptiometry (DXA) and bioelectrical impedance analysis (BIA) have been shown to provide acceptable levels of precision for the measurement of arm lean mass, fat mass and extracellular fluid volume 1. However, these methods fail to provide either a qualitative or quantitative assessment of the consistency of the lymphedematous limb, in terms of describing the changes in tissue
Figure 1. The furthest left image shows the data collection procedure, wherein the ultrasound probe is used to slightly compress the tissue in the direction shown by the arrow. The two ultrasound images 1 and 2 are collected respectively before and after applying the compression. Our elastography technique29 is then used to calculate the deformation and strain images. composition among stages. Additional techniques used, such as magnetic resonance imaging (MRI), are complex, expensive, and only available in a few select clinical centres. Ultrasound appears to be a reasonable alternative, as its measures are in real time, are considered safe with no radiation exposure, and in general, are relatively inexpensive and widely available. Elastography is an emerging medical imaging modality that uses ultrasound to accurately measure tissue
Dr. Robert Kilgour is a Professor in the Department of Exercise Science at Concordia University, Montreal, and Associate Director of the McGill Nutrition and Performance Laboratory (MNUPAL). Dr. Kilgour’s research interests include supportive care, assessment and rehabilitation in patients with cancer. Dr. Hassan Rivaz is an Assistant Professor and a Petro-Canada Young Innovator at the Department of Electrical and Computer Engineering and the PERFORM Centre at Concordia University, Montreal, where he is directing the IMPACT lab: Image Processing and Characterization of Tissue. Dr. Anna Towers is Associate Professor of Oncology, McGill University and Director, Lymphedema program, McGill University Health Centre, Montreal.
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deformation and elasticity. It outperforms manual measurements used previously2, 3. This modality can also reveal hard tumours in the breast4, liver5 and prostate6 that are invisible using standard B-mode ultrasound techniques (Figure 1). Underlying changes in tissue composition Recent applications of traditional ultrasonography demonstrate significantly improved diagnosis and monitoring of lymphedema. Lim et al. (2011) and Suehiro et al. (2015) reported that applying compression of the transducer shows significantly different variations in thickness of the skin and subcutaneous tissue between the lymphedemic and contralateral arms, which can be measured using ultrasound. These variations point to less elastic tissue in the lymphedemic arm, which is manually evaluated by physicians using the pitting test. Standard ultrasound techniques have been shown to reliably assess skin thickness, subcutaneous tissue thickness and the extent Fa l l 2 0 1 7
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10
10
20
20
depth (mm)
depth (mm)
and severity of fluid accumulation7-9. However, novel ultrasonic measurement techniques, such as quantitative ultrasonography10, resistance to compression or soft tissue compliance2, 11, 12, and elastography13, 14, may provide better insight in the staging process and allow clinicians to better detect those women who would be more susceptible to move through the stages of lymphedema. Previous work has shown that the ability of ultrasound to detect small modifications in tissue properties can be significantly improved with quantitative ultrasound10 and ultrasound elastography5. Quantitative ultrasound reveals properties of microscopic sound scatters that are otherwise not directly available from traditional ultrasound. Elastography provides tissue elastic properties, which are often correlated with pathology. At present, there are no studies that have systematically evaluated the stages of lymphedema using these novel ultrasonic techniques. Changes in tissue composition may be more significantly affected in the later stages of lymphedema (e.g. Stage 2), when there are expected to
30
0.025 0.02 0.015 0.01 0.005
30
0
40
40
–0.005
50
50
–0.015
10
20 width (mm)
30
–0.01
10
20 width (mm)
30
Figure 2. An ultrasound image collected from a patient with lymphedema is shown in the left panel. In the right panel, the strain image shows the level of compression in different parts of the tissue. The white and blue windows in the two images are used to calculate the image properties at different layers of the subcutaneous tissue. be greater developments of fibrotic lesions, as well as abnormal collagen formation and subcutaneous fat deposition. Thus, the use of elastography to assess and stage lymphedema will help detect those at greatest risk of fast progression and its attendant complications (Figure 2). Ultrasonography techniques, muscle architecture, and function Ultrasound has also been shown to reliably
measure changes in muscle architecture and quality in the healthy young15 and the elderly16-20 as well as those with neuromuscular deficits21, multiple organ failure22, sarcopenia17, and rheumatoid arthritis with cachexia23. However, very little is known about the architecture of the underlying skeletal muscle found in the upper arm and forearm in the lymphadematous limb of women with BCRL. Essential properties that define skeletal muscle architecture include:
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thickness, fascicle length, pennate angle, and crosssectional area. Not only can these properties be assessed in the classic resting condition, but novel ultrasound techniques can be used to measure their dynamic Sample B-mode cross-sectional image properties. Ultrasound has of the forearm. a special feature that few other imaging modalities possess. It can capture the dynamic of tissue since it has a high frame rate (100 frames/ second in traditional imaging, and >1000 frames/ second in plane-wave imaging). Using tissue tracking techniques5, 24 to estimate tissue deformation, sophisticated studies can now be completed demonstrating how dynamic components of the muscle architecture can
affect muscle contraction and force production. techniques will also facilitate the determi Over time, muscle disuse and atrophy, nation of the stage of the lymphedema. At as well as neuropathic pain and persistent present, the standard treatments to try to inflammation, may compromise normal control the condition involve physical theramuscle function at rest and during contracpies (compression bandages and garments, tion in BCRL. Alterations in muscle exercise and lymphatic massage). architecture (muscle thickness/ While exciting emerging research volume, fascicle length, may lead to the development Ultrasound has pennate angle, physiologiof new specific anti-inflama special feature cal cross-sectional area) matory drugs that will and muscle quality slow down the progresthat few other imaging (handgrip strength force sion of lymphedema in modalities possess development/ cross-secthose affected and may capturing the dynamic tional area, contraction even prevent lymphof tissue with a high dynamics during maximal edema, there remains frame rate. grip strength) may partially an immediate urgency to explain the decline in arm25, develop tools to adequately 26 and grip strength27, 28 that are assess and stage lymphedema, frequently found in women with BCRL. and detect those at greatest risk of fast progression and its attendant complications, Conclusions so that effective treatment protocols can be Advances in ultrasound technologies will developed and implemented. LP serve as catalysts to develop internationally accepted methods for determining subcatego- A comprehensive set of references can be found at: www.lymphedemapathways.ca ries of staging in patients with BCRL. These
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Researchers Profile
Profile of a Researcher: Pierre-Yves von der Weid
Understanding the critical role of the lymphatic system Pierre-Yves von der Weid, Associate Professor, Department of Physiology & Pharmacology, Cumming School of Medicine, University of Calgary, is a member of the Snyder Institute for Chronic Diseases and the Inflammation Research Network (IRN). He leads the Lymphedema Research and Education Program at University of Calgary and co-leads ALNET, an Alberta-wide network of researchers and clinicians driven to find a cure for lymphedema.
Q A
What prompted your interest in doing research on lymphedema?
I have a research training background in vascular physiology, and I used electrophysiology and pharmacology to understand how blood vessels regulate blood flow in response to changes in blood pressure. It was during a presentation by an Australian researcher that I was exposed to the lymphatic system for the first time. I was so fascinated and intrigued to see lymphatic vessels rhythmically contract that I decided to join his team to investigate the underlying mechanism of lymphatic vessels pumping, an area of research almost unexplored at the time. Using lymphatic vessels isolated from rodents, we studied how they responded to various drugs and physiological mediators. We demonstrated the critical role of the lymphatic endothelium in the regulation of lymph flow. With my increased understanding of these mechanisms came a new appreciation of the importance of the lymphatic system in physiology and disease processes.
Q
How has the focus of your research shifted over time?
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A
Irving Kipnes, approached me with the idea I realized more research had to be to make a donation to promote research done on the functions of the lymphatic towards finding a cure for lymphedema. system. This new shift happened when Thanks to their generosity, we established I joined the University of Calgary and the Lymphedema Research and Education the Inflammation Research Network and Program at the University of Calgary and started contemplating the importance of expanded our research horizon. We acquired the lymphatic system and lymph drainage sophisticated microscopes, which are in situations of inflammation. As obvious helping us to work toward as it is now, this our goal to image the concept was then lymphatic system. underappreciated and understudied. What is the I investigated how overall aim lymphatic pumping was regulated of your research? by mediators of We are trying to inflammation, understand how and in animal the lymphatic system models of intestinal works and demonstrate inflammation. the critical role it plays You may say in many diseases. The von der Weid and Liao labs on that I worked on the We want to study the their annual hiking day. lymphatic system multiple components but not on lymphedema! I would argue that involved in the etiology of lymphedema, such understanding how the lymphatic system as impairment of the lymphatic vessels behaves during inflammation is indeed just and the lymphatic system in general, that. I strongly believe that lymphedema is a inflammation, infection, fluid drainage, chronic inflammatory disease. Understanding fat accumulation and fibrosis, in order to how inflammation in the edematous limb understand the causes of their dysfunctions affects lymphatic function and how lymphatic and define a way to correct the problems. dysfunction promotes inflammation is paramount in identifying what goes wrong What types of research methods in lymphedema. do you use? While I am a strong proponent of the To reach this goal, we use molecular idea that only basic research leads biology, biochemistry, immunology, to fundamental medical discoveries, pharmacology and physiology techniques lymphedema sufferers made me realize that in combination with live imaging of the all research needs a purpose, and finding lymphatic system in animal models of a cure for lymphedema is a necessary one. inflammation and lymphedema. The moving and inspirational stories from the lymphedema patient community helped To learn more: define that for me. www.ucalgary.ca/irn/faculty/ My next shift in focus occurred when two pierreyvesvonderweid or philanthropists from Edmonton, Dianne and www.lymphaticresearchab.com
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Case Study
Lipo-lymphedema
Working collaboratively to improve a patient’s life By Edith Mulhall and Wendy Leroux Background The patient is an 82 year-old woman residing in a personal care home. She presented with lipo-lymphedema and had heavily exudative wounds on the posterior aspect of both legs, which had been present for approximately one year. Despite the use of traditional skin-care protocols, the wounds were not healing but continued to enlarge, increasing the threat of infection. Her doctor requested consultation with a lymphedema therapist. Treatment was paid for through a joint effort by the family and a private source during the intensive phase, and by the family during the maintenance phase. We present this case in de-identified manner, with the patient’s consent. Lipo-lymphedema Lipedema is a chronic disorder of the fatty tissue that primarily effects women. As lipedema progresses, the superficial lymphatic vessels become compressed within the excessive fatty tissue, affecting the transport capacity of the lymphatic system. If lipedema is left unmanaged, lymphedema will develop secondary to the lipedema (Zuther, 2013). Wounds, in the presence of lymphedema, are hampered from healing and are always at risk of infection4. Combined Decongestive Therapy (CDT) is the treatment of choice for lymphedema with non healing wounds when there is persistent swelling3. Once wounds heal and the edema volume reduces, the patient is then transitioned into compression
TABLE 1: LEFT LEG VOLUME MEASUREMENT Initial Measurement
€ [ (N 2)/ π ] *
Volume
Differences from
Segmental Volume
Reduction/increases
Previous
using first 3
from initial
measurement
measurements
measurement in cc’s
in cc’s
Circumference
July 20, 2015 Wk1 3653.78 July 24, 2015 Wk1 3680.23
+26.48
Aug 03, 2015 Wk3 4544.21
+890.43
Aug 12, 2015 3208.43
–445.34
–1335.78
Aug 28, 2015 Wk7 2799.74
–880.49
–408.69
Nov 24, 2015 2157.50
–1496.28
–642.24
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TABLE 2: RIGHT LEG VOLUME MEASUREMENTS July 20, 2015 3329.72 July 24, 2015 3043.56
–286.17
0
Aug 03, 2015 3526.23
+196.51
+482.67
Aug 13, 2015 2720.47
–609.26
–805.76
Aug 28, 2015 2433.98
–609.58
–286.49
Nov 24, 2015 2072.02
–971.53
–361.95
garments. This treatment can greatly improve the patient’s quality of life (QOL). Therefore, our objective was to employ CDT to decrease leg volume, prevent infection and allow the patient’s wounds to heal. Medical history The patient’s medical history included atrial fibrillation, pacemaker insertion, colostomy due to a perforated bowel, osteoarthritis, chronic venous insufficiency, transient ischemic attacks, renal cancer (in remission), and a left knee replacement. The patient was admitted to the care home in 2013. Method Circumferential measurements were taken at initial assessment and on four other occasions (Tables 1 and 2). Photos were taken throughout the patient’s treatment.
Edith Mulhall, RN, CLT-LANA, is a registered nurse and a registered massage therapist trained in the Dr Vodder technique of complete decongestive therapy. She has 19 years experience working with lymphedema patients in Winnipeg. Edith is the Canadian Regional Liaison for LANA. Wendy Leroux, BA, RMT, CLT-LANA, is a registered massage therapist trained in the Dr Vodder technique of complete decongestive therapy. She works in Winnipeg in a home-based clinic focusing her practice on treating lymphedema.
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–203.733
+863.98
–245.71
Intensive phase: This phase involved three weeks of daily treatment in an interdisciplinary fashion, involving two lymphedema-trained massage therapists and a nurse. Massage therapists removed the compression bandages and assessed the skin and tissue conditions. The nurse removed the wound dressings, then assessed, cleaned and re-bandaged the wound area. The massage therapists then treated both legs with Manual Lymphatic Drainage (MLD). Proximal lymph areas, abdominal to inguinal, were addressed first and then treatment gradually moved distally. In the first week, both legs were wrapped to the knee with short-stretch compression bandages. A combination of wrapping to the knee or thigh was employed after the first week, depending on what was observed. This treatment took from 1 ½ to two hours with two therapists in attendance. Maintenance phase: In the fourth week, the transition into the maintenance phase began. Compression bandages were left on continually for two days to assess the patient’s response. By week eight the patient was fitted into custom compression garments. The nursing staff was responsible for donning Fa l l 2 0 1 7
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the compression garments in the morning and removing them in the evening. This allowed the massage therapists to gradually reduce MLD/CDT sessions to three days a week and to have one therapist in attendance instead of two. The time required to do the MLD/CDT treatment remained the same. MLD/CDT was further reduced to once a week, with the occasional additional treatment to assist with fluctuating fluid levels. The treatment consisted of removing compression garments, assessing the patient’s legs, providing MLD and wrapping with short-stretch compression bandages. The treatment time was reduced to 1-1 ½ hours with one therapist. Nursing staff removed the compression bandages the following morning and assisted the patient to don compression garments. The garments were removed in the evening, legs were cleaned and moisturized and compression garments washed. Results Volume measurements indicated a significant decrease: the left leg showed a 1496.28 cubic centimetre (cc) reduction from the initial measurements taken July 20th, 2015 and those taken November 24th, 2015. The right leg reduced 971.53 cc during that time (see Table 1 FIGURE 1 and 2). Tissue became soft and wound margins receded. (We used five circumferential Left second toe infection. measurement points, 8 cm apart. Our starting reference was 9.5 cm from the base of the heel.) Measurements taken August 3 indicated an increase in fluid. However, this should not be interpreted as a lack of progress at this stage. When we calculated segmental volume using just the first three circumferences (closest to the heel), FIGURE 2
FIGURE 3
we measured a FIGURE 5 FIGURE 6 volume reduction of 203.733 cc on the left and 245.71 cc on the right. The more proximal measurements Figure 5: Oct 12, 2015. Patient in supine, transitioning to mainteincreased until week nance phase. Figure 6: November 30, 2015. Posterior lower legs 3 which resulted in with patient on her left side. Maintenance phase. the recorded increase Transitioning into compression garments in overall volume. The overall was not without setbacks. We first introduced volume decreased after week 3. the knee-high garments and invited staff By week eight the wounds had healed members to a demonstration on how to significantly, no longer requiring wound put them on, as incorrect donning can care, and by week 13 the wound areas have negative results. Two group education were completely dry. The patient at this sessions were provided. There were gaps in point was fit into knee-high compression information due to shift changes amongst garments. staff, and this created a challenge to providing Other changes that were noted: regular consistent, proper donning. pain medication was discontinued and the patient seemed more cheerful. With FIGURE 7 FIGURE 8 the increased comfort level, she became more mobile. One setback occurred at week 11. The patient’s 2nd toe on her left foot became infected. Antibiotics were administered and treatment was stopped until there was positive effect. Treatment resumed after two days on the right leg and after four Figure 7: Multi-layered short-stretch days on the left. Despite this setback, compression bandaging. Figure 8: Custom the patient’s progress was not delayed. compression garments. Transitioning continued and by week 16 the Staff were instructed to clean the patient’s patient was fitted with capri and knee high shoes (Crocs) to prevent the spread of custom compression garments. Successful infection and to use socks to provide a barrier. transitioning was indicated by the skin remaining soft and continuing to heal. Conclusion The nursing staff and the massage Discussion therapists were able to work collaboratively. The patient tolerated the CDT well, often The patients’ wounds healed and the sleeping during treatment. patient successfully transitioned from short The care home staff had no prior stretch compression wrapping to custom experience working with MLD/CDT, so the compression garments. The nursing staff therapists provided some education. This assumed the responsibility of donning, led to more cohesive teamwork between the removing and washing the compression RMT’s and nursing staff. garments daily. CDT was reduced to weekly FIGURE 4 treatments and currently once a month. Successful management of these longstanding wounds has significantly improved the quality of life (QOL) of this patient. LP
Figure 2: July 23, 2015. Right lower leg. Intensive phase. Figure 3: July 23, 2015. Left lower leg. Intensive phase. Figure 4: August 25, 2015. Posterior lower legs with patient on her left side. Intensive phase. Fa l l 2 0 1 7
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A comprehensive set of references can be found at: www.lymphedemapathways.ca L y m p h e d e m a p a t h w a y s . c a 25
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Patient’s Perspective
Lymphedema affects more than the patient A spouse’s perspective By Michael Holloway
I
think if you asked anyone in a relationship with someone who has lymphedema (LE), they would tell you that the disease has not only affected their partner; it has also impacted them in a number of ways. My wife, Lynn, developed secondary LE in her left leg as a result of surgery for a large cancerous tumor in her left groin, back in 2003. Although her surgeon told us that LE would be a side effect of this life-saving surgery, we had no idea what we were in for!
Our life changed for the better when we found a massage therapist trained in MLD/CDT. Having cancer twice had already changed Lynn. She was a vibrant person who now lived in fear of recurrence. This last surgery, considered palliative, had left her feeling like her days were numbered, which scared me too. Dealing with lymphedema was now an added burden on her body, mind and spirit and what affects her, also affects me. As she spent the first year of her recovery trying to learn about lymphedema, I felt helpless. I watched her struggle emotionally as her leg grew in size and her mobility became challenged. She searched the internet to try and figure out what she was supposed to do, as her medical team was not at all helpful. She knew she had to get a compression
garment and spent months with the fitter getting things wrong time after time - all the while, her leg was growing larger. Although the medical community considers Lynn morbidly obese, my girl has always had style. Just before I met her, she was a model and clothing designer in the plus-size market. Now her lymphedema no longer allowed her to wear the clothing and shoes she loved. As her self-worth lessened, I felt her withdrawing, and our intimacy as a couple suffered. Our life changed for the better when we found a massage therapist trained in MLD/ CDT. Finally, Lynn had found someone who knew something about lymphedema! The therapist taught me how to bandage Lynn’s leg, as Lynn was unable to do this on her own. We also found a good person to assist with fitting her compression garments and I learned to help her don her garment each day, another thing she is unable to do on her own. Although we are thankful I am able to assist, Lynn yearns for her independence. Just when we were thinking we had this lymphedema thing licked, along came bouts of cellulitis to throw more challenges at us. These infections require IV antibiotics for a week or so, and we have the added bonus of Lynn having terrible veins. So, not only does she have to endure the infection in a
Michael Holloway is the spouse of Lynn Holloway, one of the BC Lymphedema Association’s founding members. Michael works in social work in a group home setting for teen boys and as a private contractor in their local community on Vancouver Island. Lymphedema has been part of their lives since 2003. Michael can be reached at gumpster1@shaw.ca.
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hospital setting, but she must have a PICC line inserted which usually has to stay in for a number of weeks to ensure the infection is completely gone. There have been many difficult times with cellulitis over the years, and we have been fortunate to now avoid hospital visits by starting oral antibiotics at home. Each time she gets sick, Lynn pleads with me to not take her to the hospital. I know that if we don’t see early signs of the infection abating, I will have to be the “bad guy” and take her to the emergency room. With each bout of cellulitis, Lynn tries to figure out what had she been doing in the past week that might have brought it on. Things she has enjoyed doing in the past have been crossed off her list for fear of creating the perfect environment for an infection to start. I love to get away camping, but after getting an infection a couple days after being at one of our favorite spots, Lynn is now unwilling to do that activity. I wanted to do some travelling to tropical climates over the past few years and have had to plan to go alone or with friends, as the heat is too much for her with the compression stocking. Most summers, she keeps indoors as much as possible to stave off getting too hot. For me, I stay in a job that I no longer enjoy, just to be able to have extended health care to help with some of our expenses related to lymphedema. I am glad to have my wife still with me and hope we have many more years together. Lymphedema has changed our life. I wish for her and the thousands of other Canadians living with this disease that more will be done in the future to assist them. LP Fa l l 2 0 1 7
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Helpful Suggestions
Hints and Tips Post it notes Try adding breathing and other simple exercises to a routine thing you do. I have leg lymphedema, and often rest in a recliner. I posted reminder notes around the recliner to make deep breathing and easy leg exercises part of my routine each time I put my legs up. It soon becomes a habit! Angela Dunphy, Newfoundland New products There are several new innovative products and suppliers in the marketplace to help people manage lymphedema. We encourage readers to carefully look
understands what they are going through. There are many patient stories on the Canadian Lymphedema Framework website www.canadalymph.ca/ personal-stories/ that can provide hope and inspiration. Do you have a story to tell? Email us at canadalymph@live.ca and we will feature it in a future issue of Pathways magazine.
at the advertisements in this issue to see some new companies featured in the world of technology, pumps and unique socks. Please support all of our advertisers and sponsors. You are not alone People living with lymphedema can feel isolated and think no one else
LP
Send us your hints and tips Why not make it easier for those living with lymphedema by sharing your practical day-to-day living tips with us? We invite patients, caregivers and health professionals to send in your suggestions and photos to pathways@canadalymph.ca.
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Research and Community
Did you know? New online tools
Researchers at the Rory Meyers College of Nursing at New York University have been developing the Optimal Lymph Flow program (TOLF) consisting of three online tools, accessible via any smartphone, tablet or computer, to assist patients with self-assessment, early diagnosis and pain and symptom management for lymphedema. TOLF collects demographic and clinical information related to the survivor’s treatment, features daily self-inventories of occurrence and distress of symptoms and avatar videos of at-home lymphatic exercises for those who experience symptoms, even if individuals do not have a diagnosis of lymphedema. The two most
effective strategies for treating lymphedema that their team identified are targeted lymphatic exercises to help the lymphatic fluid to flow and maintaining a healthy weight. They developed four-and-a-half-minute daily lymphatic exercises and also offer strategies to help patients to maintain a healthy weight. Mei R. Fu, PhD: mf67@nyu.edu Source: Cure magazine Nov 2016
Young Canadian receives recognition At the 2017 Lymphatic Forum in Chicago, Canada’s Catherine Bowman was awarded a Travel Award and Poster Award from the Lymphatic Education and Research Network. Catherine is an undergraduate student, studying Health Sciences at the University of Calgary. Her goal is to complete both her
MD and PhD degrees and serve those suffering from lymphatic diseases. Some of our readers may remember this young presenter as the inspirational lunchtime speaker at the 2015 national lymphedema conference in Calgary, Alberta. Source: Lymphatic Education and Research Network
Celebrity endorsement
Another Oscar winning actress is lending her celebrity status to promote needed awareness of lymphatic diseases. Dame Judi Dench has joined LE&RN’s honorary board. The Canadian Lymphedema community officially welcomes her aboard and applauds her efforts. LP
Source: Lymphatic Education and Research Network
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Education Education
Canadian and International Events Oct 11-15, 2017 National Lymphedema Network Lake Buena Vista, (NLN) Conference. Theme: The future of Florida lymphedema care – Patient engagement and clinical collaboration. At Disney’s Coronado Spring Resort, at Walt Disney World. n www.lymphnet.org Oct 27-28, 2017 National Lymphedema Conference will Montreal, Quebec be co-hosted by the Canadian Lymphedema Framework and the Lymphedema Association of Quebec in collaboration with the McGill University Health Centre and Concordia University. This bilingual conference will feature international keynote speakers and be simultaneously translated into French. n www.canadalymph.ca/conference October 29 – ALT Aqua Lymphatic Therapy November 1, 2017 Training – Tidhar Method. The Montréal, QC Lymphedema Association of Quebec is pleased to be promoting a full Aqua Lymphatic Therapy (ALT) training in the Tidhar Method in Montreal to coincide with the National Lymphedema Conference. n To register, contact Rachel Pritzker at (514) 501-7263 or (514) 9792463; Email: rachelp@sympatico.ca June 6-9 2018 8th International Lymphedema Framework Rotterdam Conference. This event will be co-hosted by the The Netherlands Dutch Lymphoedema Framework. The venue is the legendary former steamship SS Rotterdam. All sessions, guest accommodation and entertainment will take place on this ship. The hosts look forward to welcoming you onboard.
Letters to the Editor... e and magazin e ge th te ia to mana I apprec as I tr y lp e d h tion to arms an informa oth my b in e. a z maga in hedem the lymp n in this o ti a rch a e rm s at info the re put into legs. Gre rk o e w in e z m a ga iate th ake this I apprec ings to m th to a r e rd a th ll forw and o ove us a to m a to rw le fo rd possib . I look fe li f o uality better q me. les to co ic rt the a I have had ly mphedema borne for 28 ye ars. I have be Barb Os o ri ta en receiving n O , g n your magazine fo Pickeri r many year s and alway enjoy the st s ories from ly mphedema patients. I fe el that I coul d also contribute to e your magaz h t g y in r n e in the yi ve form of an es enjo say regardin azine in g a I am g m my trials a and tribulat ways k you ag ions with lym Path phedema an h an T d ho ! w I used fitne h es. ss over the muc wish years to combat th e, best h d em. I sincer c r n i a H l ely hope my u e st or R y ca n make a po gard sitive change ist, Hilde others lives to erap h t as well. t o i n s a t y l h u P s n a i o l tra Kathy Woudz or C , Au s ia Seni land s n Va e ncouver, Brit Que ish Columbi a
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About the CLF The Canadian Lymphedema Framework is an academic and patient collaboration, working to improve lymphedema management for lymphedema and related disorders in Canada.
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CHRONIC EDEMA AND LYMPHEDEMA: A growing problem in Canada A bilingual conference co-hosted by the Canadian Lymphedema Framework and the Lymphedema Association of Québec in collaboration with the McGill University Health Centre and Concordia University. This collaborative event will bring together a national and international audience to strengthen the discussion of lymphedema care in Canada. Healthcare professionals, researchers, patients, and community leaders will gather in Montreal to learn from experts in lymphedema research, diagnosis, treatment and self-care. We invite you to learn from our extensive roster of speakers and workshop leaders: Marc Hamel, Dr. David Keast, Prof. Robert Kilgour, Marie-Eve Letellier, Dr. Catherine McCuaig, Prof. Margie McNeely, Dr. Nicole Paquette, Prof. Sheila Ridner, Dorit Tidhar, Dr. Anna Towers and more! KEYNOTE SPEAKERS • Dr. Tobias Bertsch (Germany) Obesity and lymphedema • Prof. Christine Moffatt (England) Prevalence • Dr. Alex Munnoch (Scotland) Surgical options • Dr. Isabelle Quéré (France) Pediatric lymphedema SPECIAL FEATURES • 3.5 hour pediatric lymphedema interactive workshop • 7 hour workshop for primary care providers
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