LLN January 2011 Newsletter

Coming up in 2011:

Publication of our long anticipated book.

Publication of our second cookbook with an

emphasis on healthy eating.

Expansion of the LLN website to include

more information on lymphatic diseases.

14th State of Georgia Lymphedema

Education & Awareness Conference to

include speakers presenting on genetics,

research, legislation, and always our

networking sessions, Oct. 15th

LIGHTHOUSE LYMPHEDEMA NETWORK and PIEDMONT HOSPITAL Cordially invite you to an update on research in the field of lymphedema.

Speaker: ANDREA CHEVILLE, MD Associate Professor of Physical Medicine and Rehabilitation, College of

Medicine, Mayo Clinic

Date: Wednesday, February 23, 2011 Registration and Refreshments: 5:30pm

Program begins: 6:00pm

Location: Richard H. Rich Auditorium, Piedmont Hospital Building 77, 1968 Peachtree Road, Atlanta, GA 3030

No charge for attendance/Free parking in North Parking Deck/CEUs awarded

Dr. Cheville will discuss the outcomes of her recent research on:

Hyperbarics

Exercise

Imaging Techniques

Registration: email lharman938@gmail.com, or call 770-396-9843

(Park in the North Parking Deck at Piedmont Hospital. Look for the LLN meeting signs. If you cannot climb the steps to the auditorium area, enter through the Rehab Services entrance and follow the signs to the elevators.) Go to this link for

driving directions: http://www.piedmonthospital.org/oth/Page.asp?PageID=OTH000240)

Important News to Share with You from Dr. Andrea Cheville, our February Speaker:

Novel imaging technique may reduce lymphedema in breast cancer patients (Published: Saturday,

December 11, 2010 - 21:33 in Health & Medicine. These findings were presented at the 33rd Annual CTRC-AACR San Antonio Breast Cancer Symposium.)

With guidance from a specialized scan, radiation oncologists at Mayo Clinic (http://www.mayoclinic.org/) were able to reduce by 55 percent the number of lymph nodes critical for removing fluid from the arm that received damaging radiation doses. VIDEO ALERT: Additional audio and video resources, including excerpts from an interview with Dr. Andrea Cheville and other researchers presenting at San Antonio Breast Cancer Symposium, are available on the Mayo Clinic News Blog (http://newsblog.mayoclinic.org/2010/12/06/lymphedema-study/). These materials also are subject to embargo, but may be accessed in advance by journalists for incorporation into stories. The password is sanantonio1.

The researchers report that integrating single photon emission computed tomography (SPECT) with the computerized tomography (CT) scans utilized for breast cancer radiotherapy planning may offer patients substantial protection against lymphedema, an incurable, chronic swelling of tissue that results from damage to lymph nodes sustained during breast cancer radiation. The SPECT-CT scan pinpoints the precise locations of the lymph nodes that are critical for removing fluid from the arm, allowing physicians to block them, as much as possible, from X-ray beams delivered to the chest.

"In an effort to deliver therapeutic doses of radiation to the breast, lymph nodes under the arm are innocent bystanders that often are irrevocably harmed. Minimizing harm to these nodes during breast cancer treatment is the most effective way we have seen to reduce women's risk of developing lymphedema," says the study's lead investigator, Andrea Cheville, M.D., a consultant in Physical Medicine and Rehabilitation at Mayo Clinic in Rochester, Minn. (http://www.mayoclinic.org/rochester/), who specializes in lymphedema management.

"Lymphedema is a critical concern of breast cancer survivors, so developing a more individualized approach to irradiation is greatly needed," she adds. This ongoing prospective cohort study includes 30 women with early-stage, low-risk breast cancer who had completed surgery to remove tumors and were scheduled for radiotherapy to the affected breast. These patients either had no lymph nodes that were known to be positive (meaning the cancer had not spread to these sites), or had only micrometastasis to lymph nodes. Thus, radiation to the lymph nodes in the armpit was not warranted in these patients.

The technique the researchers developed to shield lymph nodes from radiation involved merging SPECT scans with the CT images utilized in radiation treatment planning. "We can know exactly where the critical lymph nodes are under the armpit," Dr. Cheville says, adding that critical nodes are the ones that drain the arm. "While a person can have as many as 62 lymph nodes under the arm, only a few are responsible for that function." "We can use this information to personalize the fields of radiation such that the tumor bed in the breast is therapeutically treated while the lymph nodes that drain the arm are maximally blocked from radiation and thereby spared," she says.

The researchers created two treatment plans for each patient -- a standard plan and one adapted for lymph node sparing based on the SPECT-CT scans. When they compared lymph node radiation between the plans, they noted dramatic reductions in radiation to critical lymph nodes in the SPECT-CT-adapted plans.

Using the SPECT-CT images, the researchers identified all of the critical lymph nodes in the patients. They found that 65 percent of these nodes would have been located within the standard radiation treatment fields if they were not blocked.

They also found that among the 25 patients with at least one critical lymph node within the radiation treatment field, at least some blocking was possible for all of them. Researchers calculated that the number of lymph nodes receiving a moderate dose of radiation was reduced from 26 percent to 4 percent with blocking. Because lymphedema development can take a matter of years, the researchers will continue to monitor these patients. No cases of lymphedema have yet been reported.

Dr. Cheville says that the technique of locating critical lymph nodes and blocking them from radiation may prove most useful for patients who require surgical removal of the lymph nodes in the armpit but do not require radiation targeting any remaining nodes. These patients' risk of developing lymphedema may be as high as 50 percent without blocking, and measures that preserve the function of their lymphatic systems may be critical to their long-term quality of life, she says.

Source: Mayo Clinic http://esciencenews.com/articles/2010/12/11/novel.imaging.technique.may.reduce.lymphedema.breast.cancer.patients

LLN BANDAGES & GARMENTS FUND UPDATE

The LLN Bandages and Garments fund has been active this year. In 2010, the totals were 23 and $7,144.88, helping 14 arm patients and 8 leg patients, plus a patient who had lymphedema elsewhere. Eight approved applicants are in the process of finishing treatment and being fitted.

IMPORTANT: LLN Board member Pat O’Connor (creator of www.lymphedemapeople.com) reminds us that

there can be a lot of misinformation out there on the web about lymphedema. Please be aware that the only websites, businesses, organizations that the LLN endorses are those listed on our website, www.lighthouselymphedema.org. Also, our website now accepts credit cards for the fall conference registration fee, as well as for the purchase of LLN-related products, such as our books.

2011 Lighthouse Lymphedema Network Calendar Dates to Remember:

January 22, 2011 10:00 AM - 1:00 PM - LLN Board Meeting

March 22, 2011 - Lymphedema Education Day at the Georgia State Capitol, Atlanta, GA April 23, 2011 10:00 AM - 1:00 PM - LLN Board Meeting

May 7, 2011 - Komen Race for the Cure 5K/1 Mile Walk, Atlantic Station, Atlanta, September 24-25, 2011 - It’s the Journey 2-Day Walk for Breast Cancer, Atlanta

October 15, 2011 – 14th State of Georgia Lymphedema Education and Awareness Conference

THE LLN COOKBOOK –

The LLN Board Members are busily working on another cookbook, filled with delicious and nutritious recipes. This project will be another effort to raise revenues for the BAG Fund. Good nutrition plays a critical role in

helping lymphedema patients maintain a strong immune system and keep their weight down. If you have any recipes that you'd like to share, please e-mail them to joanwhite59@gmail.com, or mail them to LLN, 10240

Crescent Ridge Drive, Roswell, GA 30076.

The National Lymphatic Disease and Lymphedema Registry

is inviting the participation of patients with a diagnosis of lymphatic disease. For information and to begin the registration process, go to: http://registry.lymphaticresearch.org

If you are part of a Lymphedema or Lymphatic Disease support group, treatment practice, or other organization in touch with lymphatic disease patients, LRF would like to provide Registry information and copies of our current newsletter for distribution to potential Registry participants.

The 13th annual State of Georgia Lymphedema Education & Awareness Conference

for patients, caregivers, family members, and medical professionals was held Saturday,

October 16, 2010, at DeKalb Medical Auditorium, Decatur, GA.

OUR SPEAKERS: Robert Weiss, DeCourcy Squire, PT, CLT-LANA , Heather Ferguson , Connie D. Hill,

PhD, Michael Bernas, MS, Shelley Smith DiCecco, PT, CSLT , Deb Cozzone , Jane Thiery, PT, CLT, Samantha

Cannon, MSOT/L, CLT

Our sincere thanks to the following businesses for their financial support of the 13th

State of Georgia Lymphedema Education & Awareness Conference:

A Woman’s Place at Northside

Hospital

Bandages Plus

Barton-Carey Medical Products

Bauerfeind USA, Inc.

BSN Medical - JOBST

CircAid Medical Products, Inc.

DeKalb Medical

Farrow Medical Innovation

Gloria Watts-Cox Foundation

JOVIPAK

JUZO

MEDI, USA

Peninsula Medical Products (Reid Sleeve / Riancorp

Laser)

Pretty Please Healthcare

SIGVARIS, INC.

Solaris, Inc. (Tribute, Joint Jackets, Swell Spots,

Caresia)

Special thanks to:

MEDI, USA for the sponsorship of Robert Weiss and Heather Ferguson.

BSN MEDICAL – JOBST for the sponsorship of the Continental Breakfast.

SIGVARIS, INC. for the sponsorship of Michael Bernas, MS

DEKALB MEDICAL for the donation of the auditorium and parking for the conference.

SOLARIS, INC. for the donation of $3,000.00 in retail products to our Bandages and Garment Fund

through the bean bag toss game

Thanks to our enthusiastic models!

Tiffany Alberson

Larry Ashmore

Samantha Cannon

Bernice Cohen

David Cohen

Deb Cozzone

Courtney Day

Vicky Day

Shelley Smith DiCecco

Gwen Forbes-Kirby

Jan Freund

Devin Goolsby

Elaine Gunter

Gary Gunter

Clint Labarthe

Debbie Labarthe

Jonathan Maiden

Trinity Maiden

Vera Newman

DeCourcy Squire

Angie Staple

Beverly Thompson

Doug White

Joan White

Our sincere appreciation to the following individuals or businesses for your donations: In Memory: Sunnie Bates Larry Hart Tina Hayward David Johnson Steve O’Connor Ruth Scheuerman Kent Sherman Lillian Snyder Dorothy Sours Ethel Tripp Christine Weyand William “Bill” White Nancy Wood Rick Zebrowski In Honor: Denise McIntosh Jean Taylor Miller Georgia Faith Patton Stacy Saraydar Carson Sollenberger Beverly Thompson Pearl Weiss Joan White 2010 Donations: Grady Amason American Breast Care, LP Kimberly Archer Larry Ashmore Azalea Point Book Club Bandages Plus Chris and Ling Li Bates Ted and Ann Beasley Diane Bennett, MD Kenneth Bick Bio Compression Systems, Inc. Rebecca Boomershine Mary Bosbyshell Candace Bridgewater Helen Brown Walter and Gloria Brown Daniela Campari Harriett Canfield Samantha Cannon Nan and Keith Cooper Florence Cox Connie and Michael Cronin Cub Scout Pack 465 Patricia Delarosadiaz Denver Fencing Center Shelley Smith DiCecco Barbara Dickson Lourdes Dillard Ellen Donelson

Margaret Duncan Ruth and Craig Ferguson Leslie Goering Monica Goering Robert A. Goering Margaret Gravit Patricia Grey Elaine and Gary Gunter Graham Hand Joan Harding Linda Harman Arlene Harris Imogene Hart Joan Henry Mary Sue Holcombe William and Janie Hole Sachiko Sarah Hori Japan American Society of Georgia Patricia Kohler Marian Ladd Gloria Link Dr. John Martin Taylor Martin Berta Mebel MEDI USA Wu Ling Mei Pauline Meyer Robert and Jean Miller Stuart and Vera Newman Gail Nowak Charles “Pat” O’Connor Mitch and Joy Patton Joe and Sheryl Pender Jim and Shirley Petersen Peyton Foundation Inc. John and Susan Prophitt Prosthetic & Orthotic Solutions LLC Diane Pruente Kathleen Puri Angelo Rizzo Pauline Roux Katie Russo Juliet Saraydar Stacy Saraydar Michelle Scobie Dana and Elizabeth Schroeder Craig and Terry Sollenberger Specimen Solutions DeCourcy Squire Chi and Ryan Swallow Juanita Uhlin Gloria Watts-Cox Foundation Robert and Pearl Weiss Rikki Weye Doug and Joan White Phil and Jolene White

Ron and Rene White Wu Liao Ming Yueh Our thanks to the following businesses for their financial support of the 13th State of Georgia Lymphedema Education & Awareness Conference: A Woman’s Place at Northside Hospital BSN Medical - JOBST Bandages Plus Barton-Carey Bauerfeind USA, Inc. CircAid Medical Products, Inc. Gloria Watts-Cox Foundation Farrow Medical Innovations JOVIPAK JUZO MEDI USA Peninsula Medical Products

(The Reid Sleeve People) Pretty Please Healthcare SIGVARIS, INC. Solaris, Inc. (Tribute/Joint Jackets/Swell Spots/Caresia) Always, our appreciation to the LLN Board of Directors: Larry Ashmore Dolores Bradley, PhD Samantha Cannon, MSOT, CLT Deb Cozzone Vicky Day Shelley Smith DiCecco, PT, CSLT Gary Gunter Linda Harman Laura Hoffman Gwen Forbes-Kirby, PT-CLT-LANA Stephanie Kirkpatrick, MPT, CLT-LANA Jennifer Kitt Clint Labarthe Debbie Labarthe Vera Newman Charles “Pat” O’Connor Katie Russo Cole Sanders Stacy Saraydar, PTA, CDT, CSLT Janie Smith, PT, CLT Lisa Sollenberger DeCourcy Squire, PT, CLT-LANA Sandi Stephens, MT, CDT Beverly Thompson Shirley Tucker Joan White

Information about Efforts to Pass a National Lymphedema Treatment ACT

Heather Ferguson, one of our featured speakers at the 13th State of Georgia Lymphedema Education & Awareness

Conference, is leading the efforts to create a national bill after having successfully fought to pass a bill in North Carolina. Here is information from the website (http://www.lymphedematreatmentact.org/). Please read carefully and see how you

can become involved to help this critical bill get passed!

Bill Overview: H.R. 4662, the Lymphedema Diagnosis and Treatment Cost Saving Act of 2010 introduced by Congressman Larry Kissell, would offer coverage for Medicare beneficiaries with lymphedema from any cause. It would provide the medically recommended protocols (compression bandages, garments and supplies used daily in the treatment and

management of lymphedema) and reduce the incidence of lymphedema-related infection. Although this legislation relates

specifically to a change in Medicare law, it would also have the almost certain effect of ensuring all private insurance policies follow suit. This is a very significant piece of legislation for anyone who has lymphedema or is at increased risk for

acquiring lymphedema. We have no paid lobbyists and this is an entirely grass roots, patient driven cause.

WE NEED YOUR HELP! Please visit the GET INVOLVED page on our website to learn how you can make a difference

and ensure that the millions of Americans with lymphedema are no longer denied the treatment coverage they desperately

need and deserve. For the status of HR 4662 in Congress and to view the list of cosponsors, visit http://www.govtrack.us/congress/bill.xpd?bill=h111-4662. If you would like to receive periodic updates about the bills

progress and how you can help support the passage of HR 4662, please send a request to be added to the contact list by

emailing Info@LymphedemaTreatmentAct.org.

Specific goals of the bill are:

to provide diagnosis and treatment of individuals with and at risk for lymphedema according to current medical

treatment standards, including manual lymph drainage, compression bandages, garments, devices, and exercise; to provide for lymphedema patient education in the procedures for self-treatment so as to transfer the treatment from

the clinical to the home setting;

to encourage patient self-treatment plan adherence by providing necessary medical supplies for use at home; to

reduce total healthcare costs through avoidance of periodic infections, pain and disabilities resulting from this

medical condition.

Also, help us gain the endorsement of the American Cancer Society for this bill!

SEND TO:

http://action.acscan.org/site/PageServer?pagename=Website_feedback – choose “Federal Issues and Campaigns”;

http://www.cancer.org/Aboutus/HowWeHelpYou/app/contact-us.aspx – choose whatever category you feel is most appropriate.

One is the main American Cancer Society and the other is their Cancer Action Network. They are staffed

separately so sending to both will maximize your impact. Even if you already contacted them in 2010, we need

you to do so again at this time. They have agreed to consider supporting the bill once it is reintroduced – so

now is the perfect time to urge them to do so! Your request only needs to be a few sentences so please take a

couple of minutes to complete this ASAP.

Please include something to the effect of: We hope that the American Cancer Society will promptly endorse the

Lymphedema Treatment Act (formerly HR 4662) when it is reintroduced in the 112th Congress.

What and how much you say in addition to that is up to you, but if your lymphedema is the result of cancer

make sure to include that. Contact Heather Ferguson (Info@LymphedemaTreatmentAct.org ) to let her know if you

have any questions or problems with the links.

Thank you, Lighthouse Lymphedema Network:

Please accept my gift/donation in appreciation for your efforts to support, educate, and create awareness about a serious medical condition

called lymphedema.

Donor’s Name: ___________________________________________________

Address: ________________________________________________________________

Phone: (Home) (Work) (Cell) __________

E-mail: ________________________________________________________

Enclosed is my tax deductible donation of $_________, to be used for the General Fund _____, or the B.A.G. Fund ________

The Lighthouse Lymphedema Network is a 501(C) (3) non-profit organization. Please make all checks payable to the Lighthouse

Lymphedema Network and mail to the LLN, 10240 Crescent Ridge Drive, Roswell, GA 30076. Call 770-442-1317 for information.

Change of Address Request: We try to keep our mailing list updated constantly; if you have any changes that should be made to your

mailing or e-mail addresses, please send this information to the LLN address: The Lighthouse Lymphedema Network, 10240 Crescent

Ridge Drive, Roswell, GA 30076; or by e-mail to elaine.gunter@comcast.net.

Remember: Don’t forget to give us your e-mail address if you want to be reminded about

meetings, to receive the LLN newsletter as a PDF file (in color!), and to save mailing costs!

LLN’s website is http://www.lymphedemalighthouse.org

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LLN Newsletter Editor

1625 Sprucewood Court

Decatur GA 30033 USA