Lymphovenous Canada: IFL3 conference blog - June 16-18, 2011

So many questions - so little time!!

The conference is over and I am recovering from the whirlwind of information and activities I and about 500 other people experienced over the past few days.

The wonderful - and exhausting - thing about conferences is that you get to talk to all those people you have been e-mailing and communicating with over the phone for the past year. Half of the fun of going to a conference is getting caught up on what people are doing and having those deep conversations where you get into issues and questions you have never thought of before.

By Friday I must confess I could hardly get out of bed - and I live in the city this conference is being held in...

Looking back on the conference a few key trends jumped out:

Electronic collection of data:

Not surprisingly a significant proportion of the 2011 International Lymphoedema Framework conference was dedicated to the electronic collection of minimum datasets for use in studies involving patients with lymphedema.

The goal of ILF is to get countries to collect information in a consistent manner so that research results can be more easily compared. It looks like this approach is now starting to bear fruit, with representatives of the U.K. Japan, the U.S. and Canada (Princess Margaret Hospital) reporting on the IT systems they were using and their benefits. Throw away those pencils folks - there is now a better way to do things!!

Several workshops looked at different ways to measure data. Manual taping, water displacement and other methods can be used. Many therapists marveled at the bio-impedance high-tech process - demonstrated by Katie Riches from the U.K. - but expressed concerns about affordability for individuals in practice on their own. Can the collection of data ever be effective, if people in the international community cannot agree on how to measure results? asked one participant at the conference. Hopefully over time methods measuring results will become less costly and more consistent.

Exercise is good for you - right?

It is now pretty well accepted by everyone that exercise is good for people with lymphedema - unless you have been living on Mars and have not been paying attention to research studies and information in this area!

At the 2011 International Lymphoedema Framework conference there were plenty of positive stories in this area. Therapists and patients alike noted improvements to lymphedema related to exercise.

So what do you do when people with lymphedema want to exercise and they can't because of pain? Baukje Miedema, with the Dr. Chalmers University Regional Hospital and Dalhousie University in Frederick New Brunswick has participated in a national longitudinal Canadian study. She has found that although many breast cancer survivors experiences improved range of motion and less pain through recreational activties - other women experience so much pain that they are unable to participate in recreational activities and experience its benefits.

Surgery, demographics, treatment modalities were not predictive of arm pain. Would these women had experienced pain had they not gotten breast cancer as a result of age? More research is needed both in pain control and how to find ways to enable all breast cancer survivors to enjoy the benefits of recreational activities and exercise.

Other interesting information related to exercise came from Karin Johansson with the Skane University Hospital in Sweden who has done extensive research in this area. She has found that patients do not have to have to wear their sleeves on while exercising to reduce their lymphedema. Slight swelling is experience while exercising without compression, but patients find their lymphedena goes down if they put their compression garments on immediately after finishing their exercise. This enables patients to exercise in comfort and shower perspiration off before re-donning their sleeves and other compression garments.

Developments in compression:

Nicole Stout from Bethesda USA spoke compellingly about the activities of the International Compression Club (ICC) [where do they get these names?]- which is committed to getting people together to talk about compression, undertake research, and coincidently holds singing contests. A concensus document on compression will be published soon - likely this fall. Some of the issues which were discussed was the lack of information on how much pressure is good/bad and appropriate levels of compression on children. Also: is compression more effective early or later in the progression of lymphedema? And what are effective levels of compression with pneumatic pumps? Stay tuned for further research developments in this area.

Cellulitis (infection) was discussed in a number of workshops and in the patients segment of the conference. Mei Fu, PHD, New York College of Nursing, reported on some interesting findings which have emerged through study in this area. Patients who have had infection during surgery are more than 3 times as likely to get an infection later while those who develop seroma are 8 times at risk of infection. Chemotherapy may be an important risk factor for lymphedema. Two compounds in patients' bloodstreams have been discovered as a predictor of infections: polymorphism of TNF and elevated proinflammatory cytokines which cause inflammation and are commonly found in individuals who are obese. (See: Inflammation-Infection: A Complication or Triggrr of Lymhedema, by Mei Fu and Sheila Ridner, Vol. 23 No. 3, July - Sept. 2011, Lymphlink, National Lymphedema Network.)

But it wasn't all serious. Laughing workshops and Mary Jo Gerson's on-site study of feet (in collaboration with the ILF, the Lymphedema Association of Ontario and the Bauerfeid company) helped patients see the lighter side of things while gaining valuable advice on how to improve the quality of their footwear.

See you at next year's conference in Montpellier, France, June 28-30, 2012!!

For more information on the conference visit the International Lymphoedema Framework website at: www.lympho.org.

C. McPherson
Manager & Admnistrator
Lymphovenous Canada

Why aren't we doing stem cell research on the lymphatic system and other notes from the 3rd ILF Conference

I'm in the middle of the 3rd International Lymphoedema Framework Conference - held in Toronto and hosted by the Canadian International Framework. The weather has co-operated for us and the sun is shining. Inside the Marriott hotel - next to our Eaton Shopping Centre - a dedicated group of people from across Canada and around the world push the boundaries in raising awareness about lymphedema and the lymphatic system.

To the annoyance of the conference organizers we have received virtually no press coverage apart from several Google news alerts - a testament to how far we still have to go in bringing this issue into the public eye.

Ironically we are competing for attention with the Stem Cell Network which is holding a conference in the city at the same time. Ironically I say because the lymphatic system is not mentioned in the list of diseases/conditions this high profile international group has chosen to include in its investigations into stem cell therapy.

Michael Del Balso, from the B.C. Lymphedema Association, is out to change that. He has a son who has lymphedema and he would like to see his son and others with lymphedema conditions benefit from any type of treatment that might be available in the future.

He has the ear of many of us at the conference who would like improve treatments in this area and to eventually see a "cure" for disorders of the lymphatic conditions. So watch out Stem Cell Network - we will be knocking on your door soon!!

In these difficult times we are fortunate to have the support and funding of the Canadian Breast Cancer Foundation and a range of private and non-profit sector vendors who have come to show their wares.

These include: 3M, Medi, Haddenham, Bauerfeind, Juzo, Bodystart, Solaris, Delfin, Flexitouch, ImpediMed, Jobst, Shoppers Home Health Care, Torbot, Paradigm, the Dr. Vodder School, the Austrasian Lymphology Association, Lymphedema Association of Ontario, National Lymphedema Network, Canadian Lymphedema Framework and the Canadian Breast Cancer Network.

3M has just completed a study with the International Lymphoedema Framework on a new bandaging system which shows great promise for individuals who have difficulty keeping their bandages on, and are unable to use compression garments because of their size, and inability to pull them on or off.

The system is entitled: Coban2 for short is a system of double bandaging. One of its advantages is that it sticks to itself which addresses the annoying unravelling that many experience with current bandaging regimes. For best effects bandaging is changed twice a week with the user wearing the garments throughout the week.

Martina Reddick from Newfoundland (who leads a lymphedema treatment program in St. John's) was involved in the research study and had some great successes with it. (A lymphedema support group was started there in March 2010 and co-facilitated by Martina Reddick and Janet Montevecchi)

More tidbits from the first day of the conference: Professor Jane Armer, who is part of the American Lymphedema Framework Project (ALFP), reported on their work to undertake a systemic review of current lymphedema research literature data for the 2005-2009 time period. Their final report should be out by 2012. They are using a

Observations by Armer and her team: there need to be larger and more rigorous studies in this area which include other populations - such as those with primary lymphedema - an observation which was echoed by others at the conference. Much of the research which has come out reflects the experiences of breast cancer survivors - but we don't know if these findings are applicable to other groups with lymphedema/lymphatic disorders.

Professor Christine Moffatt reported to the conference that the International Lymphoedema Framework that the second edition of their Best Practice document (which they are working on in collaboration with the ALFP) will be published in 2012. It will include best practice statements.

A Best Practices3 concensus document will come out later - in 2017. It will be delayed to ensure that it includes the concensus of key stakeholders on all treatment areas, however the document will continue to focus on the needs of the patient.

Other tidbits:

• It was an all-women group who showed up for the Integrating Yoga into Lymphedema Management workshop held by Dr. Aggithaya Guruprasad from India's Institute of Applied Dermatology in Kerala. Hey guys - you missed out on something special! (Dr. Guruprasad presented later in the conference on the Institute's lymphedema treatment program.)
• Also discussed at the conference - how do we tell the difference between transitory lymphatic swelling and more permanent swelling in breast-cancer related lymphedema? What are the appropriate treatment approaches to these?
• Watch for the release of the results of a human research trial this fall from Stanford University on the use of several drugs in the treatment of lymphedema this fall. Some positive outcomes in this area...

C. McPherson
Manager & Admnistrator
Lymphovenous Canada