Lymphedema Conference Updates

Day 3 - Final Day of the NLN Conference

Up again at 6:00 a.m with my energizer bunny room-mate! This final morning our LSAP group is meeting with Michael Bernas who is Associate Scientific Investigator in the Department of Surgery, with the University of Arizona.   

Michael Bernas walks us through the concept of asking questions related to lymphedema.  He points out that 50% of what we used to know in this area is now wrong. Many things are contradictory.

For example - a Belgium researcher has offered a thousand Euros to anyone who can prove (through scans) that there is a watershed lymphatic channel across the chest and shoulders.  So far no one has taken him up on the offer.  We don't know why what works, works.

He talks about genetics and speculates that there may be some chemical in our bodies which effect the lymphatic system..in addition to what we know already. Sporatic lymphedema is a bit more tricky. For this type of lymphema there may be many causes of lymphedema - such as an event that effects the fetus during development.  Many elements can be involved in the mutation - not just one gene.

There is a U.S. medical company that will tell you what your genetic lymphatic make-up is through a blood test.  However, even  if we know what the genetic make-up is, at this point in time there is no treatment for lymphedema. It may be helpful in the future.

We talk about research in the area of hand-held lasers. This tool has been used in the past to treat pain - but is it effective in treating lymphedema given concerns raised about the research?  Several LSAP members share good personal experiences with the tool.

There is some concern that the laser might trigger cancer growth when it is used on cancer survivors - however Bernas says that Australian researcher Lisa Laskow has found that with more laser treatments cancer cell growth is inhibited.

Other exciting workshops today include several point counter point discussions - again on laser treatment - and risk reduction practices.  It is really great to hear such a stimulating discussion on these topics. Somehow the discussion moves to air travel and lymphedema. A participant shares that most of the individuals she knows who develop lymphedema as a result of air travel, got it because they wore an arm sleeve and didn't wear a gloves on their hands -creating a tourniquet effect.

The day wraps up with a luncheon celebrating the contributions of many dedicated people in advancing lymphedema research and advocacy.  There isn't a dry eye in the place! Kathryn Schmitze gives the keynote address, talking about her 2009 randomized study "Weight lifting in women with breast-cancer related lymphedema".  The study has caused some controversy because many women believe mistakenly that they can cure lymphedema through lifting weights. She explains that the exercise regime was offered on a slowly increasing basis - and that the women involved in the study did experience significant improvement - but not a cure. 

As the day ends, and I struggle to find an active WiFi signal in the lobby - I run into Aleksandra Chafranskaia, PT, who works at the lymphedema clinic at the Princess Margaret cancer treatment hospital in Toronto. She is also having problems with the Wifi system.We have a stimulating discussion and Aleksandra tells me they offer kinesio taping at the hospital as an alternative treatment for patients who are having difficulty with bandages. They have had some good results with it with some of their cancer patients.

Although many participants will be staying for a few hours on Sunday as the conference officially wraps up, this is the final day for me.  I will bring back many tips and tools from this energizing session.

The next NLN conference will take place in 2012 in Dallas Texas, so mark your calendars! For presentations and information on the speakers at this conference contact NLN at: www.lymphnet.org

Post script: at the airport who should I meet but yet another Canadian - Jerome Frenette - who had also attended the conference. Jerome is specializing on research on muscle atrophy, tendon repair and microbacterium (ulcerans) at Laval University.  He's hoping to get into more lymphedema-related research in the future. Welcome aboard Jerome!

Day 2 of the NLN Conference

The LSAP met again early in the morning - this time with our day's guide, Steve Norton, who heads up the Norton School of Lymphatic Studies.  We had a spirited discussion about pumps - and how effective they are in comparison to MLD. It was pointed out that the therapeutic value of touch and human contact are really important,

Also covered was a discussion about surgery.  I was shocked to learn from Steve that the very damaging "Charles technique" was still being used in non-genital lymphedema situations - even though patients remain badly scarred and damaged by this 1912 procedure.

 

The highlight of the day was a workshop I attended on updates in the area of evidence-based lymphedema research, with Dr. Andrea Cheville, RN Mei Fu and PT Catherine Tuppa.  Again exercise-related research was mentioned - in particular Kathryn Schmitz's research on weight lifting in women with breast cancer-related lymphedema (2009). In addition to proving that progressive weight training was safe for women with breast cancer-related lymphedema, Schmitz's study was lauded for involving women of a variety backgrounds including many Afro-American women who have often been unrepresented in lymphedema studies. 

A French study in 2010 found that decongestive therapy had most adherance by patients when therapy was started in the fall, when the weather was not hot.

The 2009 study "Could Kinesio tape replace the bandage in decongestive lymphatic therapy for breast-cancer related lymphedema?" offered an alternative for patients who hate using bandages, with similar reduction in their limbs on the short term.

Dr. Andrea Cheville caught the attention of many conference attendees with the preliminary results of her research at the Mayo Clinic which showed through SPEC scans (a hybrid of a CT scan) that some women who had received breast cancer treatment showed regeneration of lymph nodes one year after radiation.  Why this was taking place in some women and not others is a facinating question - and one that hopefully will be answered in future study. Could the lymph nodes be developing from a Peyer's patch of tissue that is graphed over the breast area? 

Dr. Cheville indicated that hyperberic oxygen treatments seemed to contribute to the regeneration of lymphatic systems although actual reduction of limbs were not significantly reduced. Because this type of treatment is expensive she indicated this treatment should be provided in a targetted way for patients who were most likely to develop lymphedema.

Dr. Cheville also questioned the credibility of current studies on microvascular transfers of  lymph nodes and laser treatments, suggesting that these studies lacked rigor and their positive results were not being born out through longitudinal and randomized methods, casting doubts on the effectiveness of these treatments.

I attended two other excellent workshops in the afternoon which covered information on alternative/complementary treatments for lymphedema/drugs which increase edema in patients with lymphedema (Dr. Paula Stewart) and pain management in patients with lymphedema (Dr. Cheville),giving participants lots of ideas on how to improve their treatment modalities.. 

Day 1 - Let the Conference Begin!

Air traffic controllers convened and agreed - no flying through storms - so a lot later the same evening - after flying around the storm, I arrived at my hotel.. On my way in the airport shuttle - I ran into Australian researcher Sharon Kilbreath, who authored the study on air flights and lymphedema.with Canadian Margie McNeely.and had some interesting things to say about exercise and living your life - not your disease.

(As it turns out, discussions related exercise and its impacts on people with lymphedema will figure largely at this conference.)

   . 

Ditto for Dr. Nancy Hutchinson who was the LSAP guide at our early Thursday morning LSAP meeting and runs a lymphedema clinic in Minneapolis. Dr. Hutchinson had some wonderful things to say, like: "Life has no schedule - there must be balance between reliance and compliance - to adherence".  In other words, don't take away all the fun things and replace everything with the tough stuff - otherwise no one will follow the treatment regime..Wise words.

Our LSAP group is an interesting bunch.  There is Joan - who is an LSAP grad from the same year I enrolled in the program (2004, Reno Nevada) who has a lot of great questions to ask. And newer members of LSAP such as: Manitoba advocate Kim Avante, who has a son with lymphedema; American Heather Ferguson, who has been instrumental along with Bob Weiss in bringing forward the Lymphedema Diagnosis and Treatment Cost Saving Act of 2010; Talia Fromback - a 16 year old dynamo with primary lymphedema; and Jane Dweck from the U.S. StepUp-SpeakOut who wore the most beautiful arm garments with lovely flowing tops (who says you can't look good with lymphedema?!) We also have a fascinating woman - Melanie Valentine - in our group who developed lymphedema after getting a parasitic infection in the U.S.

Today we had a number of interesting presentations and research report-backs:

- two presentations on exercise:

• one by Canadian Margie McNeely  (Donald McKenzie, et al) which looked at predictors of lymphedema in women undergoing adjunct chemotherapy for breast cancer.  Preliminary findings from the study indicated that the likelihood of getting lymphedema increased three-fold when subjects were overweight or obese.  The type of chemotherapy did not appear to impact the rate of lymphedema in this study nor did exercise participation. 
• the other by Australian Sandi Hayes on the role of exercise in the development and/or management of lymphedema which found in a randomized study that exercise was also not likely to cause lymphedema.


In the question and answer period McNeely indicated that her clinic did not encourage weight loss during chemotherapy treatment (which is generally not recommended during chemotherapy), but put the emphasis on healthy eating habits.

 

- Jie Deng reporting on the prevalence of secondary lymphedema in head and neck cancer patients.  European literature suggests that the incidence of secondary lymphedema after head and neck cancer treatment is 12 - 54%

- Professor Jane Armer of the University of Missouri announced the initiation of a large multisite study to determine the genetic predisposition for the development of secondary lymphedema in breast cancer survivors. Fingers are crossed that she will get the funding to carry out this ground-breaking study.

- Karen Ashforth, at the Domican Santa Cruz Hospital  in Santa Cruz, Calfornia talked about how she used a range of pneumatic compression garments/pumps for her clients along with MLD treatments. At the  conference we learned that there are many new pumps on the market - however still virtually no evidence-based research on safe pumping/pressure levels.

In between the plenary sessions I spoke to a MLD therapist from California who reported good results from using Farrow wraps on patients who have difficulty bandaging and pulling on compression garments (ie. because they are elderly or don't have strong muscle strength).

Is exercise protective against the development of lymphedema? Stay tuned for further developments in this area....

NLN Conference - Orlando Florida - here I come!

I'm packing my bags to go to the National Lymphedema Network (NLN) conference in Orlando, Florida Sept. 22-26, 2010 where I will be joined by other keen Canadians eager to share information and raise the bar on lymphedema awareness. 

The last time I attended an NLN conference in Florida two hurricanes converged on Orlando at the same time and chased me home before it ended - so here's hoping the same thing doesn't happen again!

I am a graduate of NLN's Lymph Science Advocacy Program (LSAP) whose purpose is to educate consumers on the science and issues of lymphedema and related disorders.  Several other previous LSAP graduates will also be attending - including Anna Kennedy, executive director of the Lymphedema Association of Ontario - who will be my room-mate at the conference.

Prior to the conference LSAP participants were given the option to participate in three webinars to set the scene for thoughtful contemplation on issues which will be discussed at the conference. Those of us who are able to go to the conference also have the option of attending early (yikes!) morning discussions with specialists to talk about any questions that came up in the workshops the previous day. A very neat concept.

It will be interesting to hear what the LSAP "grads" have been doing since they enrolled in the program. I am involved in our Canadian Lymphedema Framework which is now up and running. For more information about this exciting initiative check out: http://www.lymphovenous-canada.ca/canadianlf.htm