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NEWSLETTER(800) 673-1290 • www.melanoma.org • Melanoma Patient Information Page: www.mpip.orgMELANOMA RESEARCH FOUNDATION

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Spring 2010, Volume 10 Number 11

As a result of the strong support from the melanoma community, the Melanoma Research Foundation is pleased to announce an expansion of its research grant program. For 2009, MRF’s Board of Directors decided to add an additional Established Investigator Award. Being able to increase research funding in a difficult financial environment is a major achievement. Most of all, it is a testimony to strong and broad support from the community of people personally affected by melanoma. In 2009 several new volunteer-run events were launched, and many of the ongoing events did better than in previous years. Some volunteers went into their 2009 events with concerns about trying to raise funds in a period of rising unemployment and a major recession. Their passion carried the day, however, and resulted in hundreds of thousands of dollars going to support critical research.The MRF research program is robust and rigorous. Every year more requests are received than can be funded, and each request is reviewed by a panel of outstanding researchers who are familiar with the focus of the research being proposed. Only the most promising programs are considered “fundable” and only the strongest of the fundable programs receive grant funding. Since 1996, MRF has given millions of dollars to fund research, with grants going to more than 30 institutions. Some of the researchers funded early in their career have progressed to be leading voices in the science of melanoma. Congratulations to the following recipients of the 2009 grants:

MRF Research Grants 1-3

TEAMM4M Provides Personalized Training 3

Special Thanks to Our Donors 4 & 5

Volunteer Profile 6

From the Director 7

Calendar of Events 8 & 9

Melanoma Messengers Training 9

Ask The MRF Nurse 10

MRF briefs Congress 11

Patient Profile 12

Honored Memories 13

Community Events 14 & 15

(Continued on Page 2)

INSIDE

Our Mission StatementTo support medical RESEARCH for finding

effective treatments and eventually a cure for melanoma.

To EDUCATE patients and physicians about the prevention, diagnosis and treatment

of melanoma. To act as an ADVOCATE for the melanoma

community to raise the awareness of this disease and the need for a cure.

MRF is a national non-profit organization founded by patients and their families to find

a cure for melanoma.

The MRF Research Program is Robustand RigorousNEW AWARDS

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2010 Research Grants

CAREER DEVELOPMENT AWARDS – First Year

Dr. Eva Hernando – NYU School of Medicine (New York, NY)Study of the Role of MicroRNAs in Melanoma Brain TropismIn memory of Tom Triphahn, Harold Quade, and Marilyn Taheny; and in honor of the Too Faced Cosmetics Love Lisa Award.and participants of the Ragnar Relay.

Dr. Ali Jazirehi – The Regents of the University of California (Los Angeles, CA)

Molecular Determinants of Apoptosis Resistance in Melanoma Clinical ImmunotherapyIn memory of Kevin Anderson and Aaron Anchor and, in honor of Neil Gaines and participants from DIGA.

Dr. Minjung Kim – H. Lee Moffitt Cancer & Research Center (Tampa, FL)Understanding Molecular Mechanisms for the Role of NEDD9 in Melanoma ProgressionIn memory of Bill Walter III, George A. Wilkins, Edward A. Merullo, Randy G. Johnson, Leonard E. Warren, Amanda Carter-Horn, and Don Aronow.

Dr. Roger Lo – UCLA David Geffen School of Medicine (Los Angeles, CA)

Improving Melanoma Response to B-Raf V600E TargetingIn memory of Brad Lanpher, Peter Labyak, Jim Foy, Larry Katz, James O. Robbins, Larry Poplawski, Cathy Beelaert, and Kathy Bowers; and in honor of Katie Brennan.

CAREER DEVELOPMENT AWARDS – Second Year

Dr. Vitali Alexeev – Thomas Jefferson University (Philadelphia, PA)

MicroRNA in Regulation and Targeting of the cKit Receptor in Malignant MelanomaIn memory of Michelle Rigney and Susan Fazio; and in honor of participants of the New Jersey Miles for Melanoma.

Dr. SubbaRao Madhunapantula – Pennsylvania State University College of Medicine (Hershey, PA)Targeting Kinases to Treat MelanomasIn memory of Doug Gillespie, Karl J. Nelson, Linda K. Snyder, George Madzia, Nancy Fox, Scarlet Lawrence Akins, and Kent McCullough

Dr. Keiran Smalley – H. Lee Moffitt Cancer & Research Center (Tampa, FL)Targeted Therapy for MelanomaIn memory of Linda Transou and Tricia Elaine Black; and in honor of participants of the Delaware Miles for Melanoma and the Elm Grove Wine Tasting.

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2010 Research Grants

ESTABLISHED INVESTIGATOR AWARD– First YearDr. Kelly McMasters – University of Louisville (Louisville, KY)Develop a Prognostic Scoring System in Node-Negative Melanoma PatientsIn honor of participants of Team M4M and the Miles for Melanoma program.

THE DIANA ASHBY AWARD:Dr. Sean Morrison – The University of Michigan (Ann Arbor, MI)The Regulation of Melanoma MetastasisIn memory of Brenda MacDonald and Peggy Spiegler.

ESTABLISHED INVEGATOR AWARDS – Second YearDr. Edward Harlow – Harvard Medical School (Boston, MA)Requirements for MITF-dependent Melanomas: Identification of Novel Drug Targets

In memory of Staff Sgt. Jon Warrington, Paul Mikalauskas, Bruce Schocken, Tom Butler, Robert Hansen, Tom Barner, Deb Sandry, Kathy Domijan, and Kerry Daveline.

The Melanoma Research Foundation’s TEAMM4M program is a marathon training program designed to help you achieve that bucket list item: to run a full or half marathon. With experienced coaches helping you every step of the way, you can train to run in the Wood-row Wilson Bridge Half Marathon in Washington, DC, on Sept. 19th, the ING Hartford Marathon in Hartford, CT, on Oct. 9th; the Rock ‘n’ Roll Denver Marathon and Half Marathon in Denver, CO on Oct. 17th; or the Marine Corps Marathon in Washington, DC, on Oct. 31st. We provide partici-

pants with personalized training schedules, weekend training sessions, race registration and lodging. Participants of the program make a commitment to raise money for the MRF. In the first year of the program the runners raised over $100,000! Would you like to be part of the fun while supporting MRF? Email us at teamm4m@melanoma.org. Registration is $100; training in Denver, Washington and Hartford begins in June.

TEAMM4M Provides Personalized TrainingFor Aspiring Marathoners

Want to become involved in advocacy? We can help!

Our website, www.melanoma.org,

has a section on advocacy, including an opportunity for

you to Stand With Us!Or you can email us at

volunteer@melanoma.org, or simply call:

(800) 673-1290

ADVOCACY

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Special Thanks to Our DonorsSpecial thanks to the following corporations who donated

$5000 or more in 2009:ACE Foundation - Bermuda Bacon LLC Bristol-Myers Squibb Company CommerceNet Dune Capital Management LP Eastern Federal Bank Genentech JCK Foundation, Inc.Merck & Co. Inc. Nektar Employees Foundation Novartis Pharmaceuticals Corp. NY Rosbruch/Harnik, Inc. Roche Molecular Systems, Inc. Skadden, Arps, Slate, Meagher & Flom LLP Sterne Kessler Goldstein Fox P.L.L.C. Tri-Flow Lubricants Water Island Capital

Special thanks to the following donors who were members of the Melanoma Champions in 2009:

Platinum Level ($10,000 or more)Gardner Grout Glen S. Lewy Gregory Rush Jeffrey GendellMarty TenenbaumMary Cirillo-Goldberg Paul Family Foundation Richard Katz

Steven Silverstein The Bachmann Strauss Family Fund, Inc. The Jeffrey A. Altman Foundation, Inc. W. Lloyd Sanders

Gold Level($5000 or more)Alan Abramson Anita Sabatino Barish Family Foundation David A. Abrutyn Doug Eckrote Elise A. Barish J.W. KaempferJames O. Robbins Family Charitable Lead Annuity TrustJeffrey Degen Kim Goh Noreen R. Dreyfus Robert Rodin Scott London Semmelrock Family Charitable Foundation Susan A. Vallario Susan M. Bond The Michael J. Tully, Jr. Foundation Inc. Toyoko Oono William O. Gelston

Silver Level($2500 or more)Allen Hughes Anthony J. Domino Barbara Boyle Christopher Denny David B. Chester Elliott Abrutyn Joseph M. Comito

Lauren Bockmiller Laurie Jacoby Lawrence Hunt Mark T. Howard Michael Quattro Michelle M. Carver Benefit Fund Richard Silverman Robert Baynton Robin Shinn Suzanne Lescure Terry Megee The Miller Family Endowment Theresa Christie Tuft Family Foundation Wilson Sonsini Goodrich & Rosati Foundation

Bronze Level($1000 or more)Alan Mondor Alicyn Drew Alvin Rush Andrew Sommers Ann J. Friedberg Arnold Penner Arthur I. Indursky Barbara M. Carroll Barbara Wise Bartenbach Foundation Trust Benjamin W. Heineman Bob Greces Bonnie Newson, Inc. Brendan Cody Brian Gold C. G. Williams Cheryl Hylton Claire Wallace Claudia A. Fiore Cytosport, Inc. Dana Saraceno Darla Postil David Dageforde David F. Haddow David Jones Debbie Eisenberg Deborah Flaig Debra Black

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Special Thanks to Our Donors

Donald L. Schwarz Doug Bratz E.E. Kelley Eric Poe Ernest Lowe Eugenia M. Vecchio Femmy Lundstrom Francesco Federico Greg Doss Greg Myers Gregory Woods Hayes Gladstone Hazen Polsky Foundation Hurley Miller Family Fund J.K. Simmons Jack Waterman James Warrington Jan McDonald Jane Kingsbury Janet R. Piercy Jason Grosfeld Jay Murray Jeanne Bierkan Jefferson Saunders Jeffrey Ashby Jennifer Ruddock How Jeremy Hill Jessica Scruggs Joe Fazio John Corkery John D. Spivey John G. Golfinos John Orrico John Pearce Jolie Veltmann Jon Dareff Jonathan Rosen Joseph Asiano Joseph Feshbach Joshua S. Hawley

Judy Coleman Judy Keithley Julia McGary Katie Patterson Kelly H. Thomann Kenneth R. Salling Kevin Tullier Kristin Gonsalves Kristina D. Sanders Laurie Schocken Leland Postil Leslie L. Ward Linda Rush M. Scott Trimboli Marc Abrams Margaret M. Arnold Mark Reardon Marvin Long Mary Lee Morris Matthew M. Miller Maurice Linker Melanie J. Clark Melissa Motz Metaphor Inc. Michael Bochard Michael Cowen Michael Duggan Michael Jones Michael Lattos Michael Steiner Michelle Leetham Mike Herguth Murray Brothers Neil S. Spiegler Nicholas Liapunov Patrick Healey Paul R. Christian Pauline K. Morgan Peter Anderson Peter R. Kellogg

Randolph King Rashna DhamijaRandy Lomax Raymond Taheny Rhea T. Eskew Richard Wilson Rita A. Barbieri Rob Olin Robert Clarfeld Robert H. Transou Robert M. Bloom Robert Steiner Robert T. Piccoli Ronald Ostrow Ruby Ream Sharon Brock Shay Zafrir Steve Grimberg Steve Robins Stuart C. Belkin Stuart J. Spivak Susan Blumenfeld Suzanne De Laurentis Terence Strain The Gendell Family Foundation Inc. The Thomas Rosato Charitable Foundation Inc. Thomas Hawley Thomas Von LehmanTim Turnham, Ph. D. Todd J. Albert Tom Nordstrom Tony Spangenberg Towerbrook Foundation Walter A. Winshall Wendy Belkin William F. Miller William Koesters

Bronze Level ($1000 or more) continued

2010 Miles for Melanoma DIG in the Mercedes Marathon and Half- Marathon Event Date: February 14, 2010

(L to R) Chris Spiker and Kristen O’Dillon (L to R) Kristen O’Dillon, Adam Weber, and Katie Billue

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Volunteer Profile

Volunteer Profile: Jena DickmanFundraiser keeps memory of best friend aliveMandy Dean was only 30 years old when she was diagnosed with melanoma. She died, only nine short months later, in June 2007. Her friends described her as a vibrant woman with a quick smile. She had a tendency to put others’ needs above her own, and everyone who knew her loved her.On Jan. 30, nearly 400 people attended a pasta dinner and raffle, raising $5,000 to benefit the MRF. Raffle items included a seven-night stay in a beachfront condo, courtesy of Sanibel Island Vacations, Sanibel Island, FL; a Pandora bracelet donated by Meyers Family Jewelers, and a variety of gift baskets and gift certificates, all of which were donated to the event. Jena Dickman started the Central Ohio Melanoma Foundation, and organized this event, to honor the memory of her best friend.We asked Jena to tell us a little about the event:

What was your inspiration for organizing this event? I lost my best friend, Mandy Dean, to melanoma in June 2007. Spreading

the word is helping me cope with the loss because I’m keeping one of her best qualities alive – helping others.

Tell us about Mandy. Mandy was 30 years old when she was diagnosed and succumbed to melanoma. She was the youngest of five siblings and single mother to a then 11 year-old daughter, McKaley. She was so full of life, and she always made people laugh.

How did you promote this event? We advertised in local newspapers, through our website, FaceBook, MRF and on a local news channel.What was the greatest challenge you faced while organizing this event? My emotions. It was difficult to plan such an important event in the memory

of someone that I knew would have been my biggest supporter, and the first person in the door and the last to leave if she were still alive. What was most rewarding about the process? I was clearing tables and I overheard two women talking to each other. They were very alarmed by the statistics that were on the overhead Power-Point presentation. Just hearing them discussing the statistics made me realize the last few months of work were worth it, regardless of how much money we raised. I made one person more aware!Thank you, Jena!

“Spreading the word is helping me cope with the loss because I’m keeping one of her best qualities alive – helping others.”

To become a Melanoma Messenger email volunteer@melanoma.org or call (800) 673-1290

The family of Brad Lanpher, in cooperation with Colorado’s Sunlight Mountain Resort, held its 2nd annual “Melanoma Awareness Day” on March 6th. Rocky Mountain Sunscreen and SunSmart participated in the event along with local sponsors. A donation of $25 or more to MRF received a comp lift ticket for next season. The winner of the “Hot Dog Race” received a $100 Sunlight gift card. Donors and race entrants received tickets for the drawing that was held at the end of the day. All dona-tions were matched by Sunlight Mountain Resort which totaled $3,200 for MRF’s research program.

Brad’s niece, Abby, drawing the winning tickets for prizes including MRF t-shirts and hats.

2010 2nd Annual Melanoma Awareness Day in memory of Brad LanpherEvent Date: March 6, 2010

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Executive Director

May is Melanoma Awareness Month, and the Melanoma Research Foundation has a number of programs in place to help educate people about what is the deadliest form of skin cancer. Already this year the melanoma community has seen great success. The New York Times ran a three-part series focusing on efforts to bring a new drug to the clinical setting. These front-page articles, by a Pulitzer Prize winning reporter, included a description of MRF’s Melanoma Breakthrough Consortium. We formed this Consortium last year specifically to organize and facilitate clinical trials focusing on combinations of two or more therapeutic agents.

Late in March, a diverse group of skin cancer groups worked together to provide information to the FDA as they discussed increasing restrictions on indoor tanning. I was fortunate to be part of a special task force on this topic, along with representatives from the American Cancer Society, the American Academy of Dermatology, the Skin Cancer Foundation, and the Shade Foundation. This was a great example of how a wide variety of organizations can work together to accomplish big things. The day before the FDA meeting, MRF hosted a meeting on Capitol Hill to educate Congress on the dangers of UV exposure. This meeting was covered by CNN and other networks.

Now comes May, and Melanoma Awareness Month. For the month of May, we are encouraging all of our volunteers across the country to make a special effort. Contact your local media and tell your story. Talk to a school group, or church, or civic organization. We are also launching a powerful new youth campaign, leveraging the impact of social media.

This kind of one-to-one peer outreach is critical. If you think about what has impacted you the most, I suspect it was not a news story on network TV, but rather the story of a neighbor, a friend, a family member. What is the message? It is very simple. Practice good sun safety. Pay attention to your body and check out any spots that look different or are changing. Support research so new treatments can move quickly into the hands of doctors.

I hope that this May you will join your voice with thousands of others as we work together to raise awareness. Together we can truly change the world.

May is Melanoma Awareness MonthTim Turnham, Executive Director

Newsletter, a periodical of the Melanoma Research Foundation, is published throughout the year. Its purpose is to provide information, opinions and to relay items of interest to individuals with melanoma and their families, volunteers, health care professionals, interested friends, donors and supporters. Statements and opinions expressed in articles are not necessarily those of MRF.

Newsletter is an official publication of the Melanoma Research Foundation, 170 Township Line Road, Building B, Hillsborough, NJ 08844. MRF is a national non-profit organization founded by patients and their families to find a cure for melanoma. Our mission is Research, Education and Advocacy.© Melanoma Research Foundation, Volume 10, Number 11 Spring 2010

We are encouraging all of our volunteers across the country

to make a special effort.

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Calendar of Events

2010 GRASSROOTS & OTHER EVENTS CALENDARAPRIL

19 MASSACHUSETTS: MFM in the Boston Marathon, Boston, MA(Contact: Meghan Hession at mth2114@columbia.edu)

19 CALIFORNIA: Hack n’ Smack Golf Tournament at the El Caballero Country Club, Tarzana, CA(Contact: Mary Mendoza at mmendoza@melanoma.org)

24 TENNESSEE: MFM in the Country Music Marathon and Half-Marathon, Nashville, TN(Contact: Caroline Hannigan at cchhannigan@gmail.com)

24 DELAWARE: MFM of Delaware - 2nd Annual Beef & Beer Fundraiser, New Castle, DE(Contact: Donna Smith at miles4melanomade@gmail.com)

24 GEORGIA: MFM Georgia 5k Run/Walk, Augusta, GA(Contact: Chris Wright or Amy Glaze at miles4melanoma@gmailcom)

24 INDIANA: Teb’s Troops - 5th Annual A Call to Arms Fundraising Event, Indianapolis, IN(Visit Teb’s Troops’ website: www.tebstroops.org)

24 KENTUCKY: MFM in the Kentucky Derby Festival Marathon and Half-Marathon, Louisville, KY(Contact: Samantha Guelda at sguelda@bradley.edu)

24 OHIO: Heather Anderson Land Melanoma Awareness Day, Germantown, OH(Contact: Jeremy Anderson at Jeremy.Anderson@L-3Com.com)

25 CALIFORNIA: MFM in the Big Sur International Marathon, Big Sur, CA(Contact: Sonia Reynolds at soniareynolds@sbcglobal.net)

1 DELAWARE: Derby at the KENTucky Northbeach Restaurant and Bayside Bar, Dewey Beach, DE(Contact: Kim McCullough at melanomore@yahoo.com)

1 NEBRASKA: 8th Annual Operation Wardog, Gibbon, NE (Contact: Candi Warrington at jcwarrin@nctc.net)

2 PENNSYLVANIA: MFM in the Broad Street Run, Philadelphia, PA (Contact: Katie Peoples at kep33@drexel.edu)

2 NEW YORK: MFM in the Long Island Marathon and Half-Marathon, East Meadow, NY(Contact: Lisa Amato at lamato17@gmail.com)

2 PENNSYLVANIA: MFM in the Pittsburgh Marathon, Pittsburgh, PA(Contact: Larissa Lakatos at Lakatos@wvuh.com)

7 NEW YORK: a Cappella for a Cure - Carnegie Hall Concert, New York, NY(Contact: Mary Mendoza at mmendoza@melanoma.org)

8 ILLINOIS: MFM Doin’ It For Deb, at Augustana College, Rock Island, IL(Contact: Larry Stimson at larrystimson@mchsi.com)

8 MISSOURI: Third Annual Miles Over Melanoma Walk/Run, St. Louis, MO(Contact: Maria Theresa Schellhardt at schellhardt7@yahoo.com)

14PENNSYLVANIA: Educational Symposium: 7th Annual Educational Conference: Focus on Melanoma For Melanoma and At Risk Melanoma University of Pennsylvania, Philadelphia, PA (Register at www.melanoma.org or call (800) 673-1290)

15 OHIO: First Annual Alumni Basketball Game in Memory of Heather Anderson Land, Germantown, OH(Contact: Jeremy Anderson at Jeremy.Anderson@L-3Com.com)

20 CALIFORNIA: Champions for a Cure, San Francisco, CA(Contact: Mary Mendoza at mmendoza@melanoma.org)

22 NEW JERSEY: Andrea Sheridan Memorial Melanoma Walk, Ocean City, NJ(Contact: Kyle Sheridan at kyle.sheridan@yahoo.com)

MAY

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Calendar of Events

22 CALIFORNIA: Full Spectrum Dermatology MFM 5k Run/Walk , Fullerton, CA(Contact: Full Spectrum Dermatology at melanoma5k@gmail.com)

22 WASHINGTON: Educational Symposium: Northwest Melanoma Symposium, Fred Hutchinson Cancer Research Center, Seattle, WA (Register at www.melanoma.org or call (800) 673-1290)

23 VERMONT: MFM One Wheel-One Cure, Burlington, VT to West Quoddy Point Lighthouse, Maine(Contact: Tristan Bates at tristan.bates@maine.edu)

26 Educational Teleconference: MRF Melanoma Breakthrough Consortium - 12:00pm (Eastern) (Register at www.melanoma.org or call (800) 673-1290)

Do you live in the SouthWest? Join us for our Melanoma Messengers Training, July 10th -11th, in Phoenix, AZ! This weekend training will provide you with the tools and resources you need to bring the national voice of MRF into your local community! Perhaps you’re already coordinating an event, or maybe you’d like to begin volun-teering in some other way, such as providing outreach or working on an awareness campaign. Let us help you find your niche. During this training...Let us show you:Important fundraising strategies - want to raise more money from your events? How can you maximize sponsorships?How to work with the media, writing press releases and media alerts, and giving interviews.The ins and outs of political engagement

and how to be an effective advocate.The latest in MRF news - what have your efforts allowed us to do? What kind of advances have we seen in melanoma research?Space is limited, so please register

for this important training as soon as possible. Contact Mary Mendoza, Manager of Community Engagement for more details at volunteer@mela-noma.org or (908) 698-1955.

Join us for our Melanoma Messengers TrainingJuly 10th -11th, in Phoenix, AZ!

MRF is pleased to announce the launch of a new toll-free helpline for people affected by melanoma. The helpline is staffed by professional oncology social workers who have received training specifically in the area of melanoma. People facing melanoma, or those having a friend or loved one who has been diagnosed with melanoma, can receive free telephone counseling and information by calling (877)MRF-6460 (877)673-6460). The helpline is open Monday through Thursday, 9 a.m. to 7 p.m. (Eastern time) and 9 a.m. to 5 p.m. (Eastern time) on Friday.

MRF launches helpline for patients

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Melanoma Questions?

ASK THE MRF NURSE PROGRAMSubmit specific inquiries to an oncology nurse

“ASK A NURSE” PROGRAM If you need guidance or answers to basic questions about melanoma, email our working professional registered nurse.

In most cases, you will receive a reply within 72 hours.

YOU CAN EMAIL OUR NURSE AT:askanurse@melanoma.org

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The background and information provided by our “Ask a Nurse” program and on our website is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. You are encouraged to contact your medical provider for specific examination and assessment of your condition, and if you have a medical problem, please contact a qualified health professional in your area. The Melanoma Research Foundation does not recommend or endorse any particular treatments, service providers, procedures or products. Information and links concerning available treatments and clinical studies is provided to facilitate your further research and to assist you in identifying a qualified medical provider.

You should always seek the advice of your personal medical providers with any questions you may have related to the information provided by the Melanoma Research Foundation. The Melanoma Research Foundation, including its employees, sponsors and others working with us, expressly note that the information and links are provided “AS IS” and without warranty of any kind. You are strongly encouraged to conduct further research for yourself and advised to consult your physician for further information or a medical diagnosis. The information discussed in our emails may be collected and given or presented to physicians, nursing organizations, the FDA or other governmental agencies. The information may also be used to meet the reporting requirements of governmental agencies. A compilation of the results of the information provided and nature of the inquiries may be published, but your identity will not be disclosed.

When is a PET scan advisable?Dear Suzanne,I have just completed an operation removing melanomas from my instep and upper leg. I plan to have a Dematrac photo taken of the whole body to monitor any reoccurrence. A friend mentioned a PET to me scan; however, when I asked my doctor about having one done, she said it was not necessary. No reason given. Your thoughts, please?

Like CT scans, MRIs, and X-rays, a PET scan is a radiology test that may be used to determine whether melanoma (or other types of cancer) has spread. Each may be used in individuals who are at high risk for a recurrence of melanoma. Primary cutaneous (meaning skin) melanomas are classified from Stage 0 through Stage IV based on their depth and factors including the presence of ulceration, the Clark’s level etc. Melanomas that are confined to the skin are classified Stage 0, I, or II. Melanomas that involve the regional lymph system are Stage III. Melanomas that have spread to a distant organ are Stage IV. Stage 0 and I melanomas generally are followed by active observation only. Stage II melanomas also, depending on the characteristics of the primary lesion, most commonly are followed by observation. However, when a melanoma is considered a high-risk lesion, the dermatologist or oncologist may decide to order radiology tests to assist in following the case. There is no standard guideline dictating the follow up schedule for such testing. Discuss the risks and benefits of such testing with your dermatologist to determine if this is an appropriate test for you.

Best wishes. – Suzanne

What is significance of “regression” finding?Dear Suzanne, I’m a 26-year-old mother of three who was recently diagnosed with melanoma by my primary care physician. The pathology report said it was a T1a with no ulceration. It was .38 mm thick and a Clark’s level III. It said that signs of regression were present. My surgeon did the excisional biopsy and said that everything came back OK. He said that I only needed to follow up with a dermatologist every six months and that he didn’t feel there was any reason for me to see an oncologist since it was such a thin melanoma. I know I have probably been reading too much online, but everything I see about signs of regression scares me to death. When I brought that up to him he blew it off as nothing to be concerned about. I’m just wondering if I should just trust my surgeon or if this is something that I should try to get a second opinion on.

It is extremely overwhelming to be diagnosed with melanoma and to sift through all of the sometimes baffling information on the Internet.

Your melanoma was diagnosed at a very early stage. It sounds like you had a wide excision to ensure clear and adequate margins, which is the expected treatment given the thinness of the lesion. Sentinel lymph node biopsies are generally reserved for melanomas that are greater than 1 mm in depth, are greater than 0.75 mm in depth with ulceration or regression, or are more invasive than Clark’s level IV. It does not sound like your melanoma would have fallen into that category, which would mean that you had the appropriate treatment.

As far as regression goes, it is an indicator that your own immune system began trying to eliminate the melanoma and actually caused the original lesion to regress or to be removed by your own immune system. This is thought to be a positive predictive factor overall. However, the concern is that the presence of regression may make it difficult to estimate the true thickness of the primary lesion. This is generally more of a concern when the lesion is somewhat borderline regarding low-risk versus moderate-risk melanoma versus high-risk primary melanoma. Your melanoma clearly falls into the low risk group.

Hope this helps. Best wishes to you and your family. – Suzanne

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Headline

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The background and information provided by our “Ask The MRF Nurse” program and on our website is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. You are encouraged to contact your medical provider for specific examination and assessment of your condition, and if you have a medical problem, please contact a qualified health professional in your area. The Melanoma Research Foundation does not recommend or endorse any particular treatments, service providers, procedures or products. Information and links concerning available treatments and clinical studies is provided to facilitate your further research and to assist you in identifying a qualified medical provider.

You should always seek the advice of your personal medical providers with any questions you may have related to the information provided by the Melanoma Research Foundation. The Melanoma Research Foundation, including its employees, sponsors and others working with us expressly note that the information and links are provided “AS IS” and without warranty of any kind. You are strongly encouraged to conduct further research for yourself and advised to consult your physician for further information or a medical diagnosis. The information discussed in our emails may be collected and given or presented to physicians, nursing organizations, the FDA or other governmental agencies. The information may also be used to meet the reporting requirements of governmental agencies. A compilation of the results of the information provided and nature of the inquiries may be published, but your identity will not be disclosed.

Melanoma Legislation

The Melanoma Research Foundation (MRF) hosted a briefing on Capitol Hill on March 24th, one day prior to a U.S. Food and Drug Administration hearing to review the link between tanning beds and skin cancers. MRF’s briefing was held to educate congressional staff and the media about the link, and provide a clear call to action for the FDA.With cases of melanoma on the rise in the United States and worldwide, the MRF is encouraged to see the FDA taking up the issue. Currently, the FDA classifies tanning beds as safe, despite scientific evidence showing that people who use tanning beds before age 30 increase their risk of developing melanoma by 75 percent, and occasionally triple their cancer risk.Without clear warning labels and proper regulation, many people, particularly younger tanners, believe that a visit to the tanning salon is safer than sun exposure at the beach. However, both pose serious health risks due to exposure to harmful ultraviolet (UV) rays.Featured speakers at the MRF briefing included Reps. Rosa DeLauro (D-CT), Carolyn B. Maloney (D-NY) and Charlie Dent (R-PA), who high-lighted H.R. 4520, the Tanning Bed Cancer Control Act of 2010. Rep. Dent also spoke of his personal loss, sharing the story of his father-in-law

who died of melanoma. David Fisher, M.D., Ph.D., a member of the MRF’s Scientific Advisory Committee, covered the state of the science on the relationship between tanning and melanoma, and shared highlights from his testimony at the FDA hearing. He also illuminated the addictive nature of tanning, which may cause people to experience withdrawal symptoms when they attempt to stop tanning. A 21 year old pageant queen, Erin O’Connor, Miss Illinois, flew in for the briefing to share her personal experiences with the disease. Her mother was diagnosed with melanoma when she was only 12, but experienced an extended remission. The cancer recurred in 2006, when Erin was 18, and she supported her mother as a caregiver during the final months of her life. Her pageant platform is skin cancer awareness and education, and

she is a passionate and articulate spokesperson on the toll that mela-noma takes, not only on patients, but their families as well. The event garnered attention from media as well. Major television networks, including CBS, CNN and ABC, covered the briefing, which generated coverage in dozens of local markets (as well as a mention on CNN). The turnout from members of Congress, congressional staffers, partner organizations and journalists set the stage for the FDA to take positive steps in protecting the public from risks associated with tanning.With no such thing as a safe tan, it’s about time that the federal government closely examines the connection between tanning beds and melanoma, and issues an appropriate warnings so consumers can make healthy choices for themselves.

MRF Briefs Congress on Tanning Bed DangersFDA addressing tanning-cancer link

Featured in the briefing were (left to right) Congressman Charlie Dent (R-PA), Congresswoman Carolyn Maloney (D-NY), Erin O’Conner--Miss Illinois, Congresswoman Rosa DeLauro (D-CT) and Dr. David Fisher

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Patient Profile

My melanoma diagnosis stopped me in my tracks. It came on my 21st wedding anniversary, in 2006. Six weeks earlier I had been enjoying the senior year of my daughter, who had been accepted at her first-choice college and was celebrating with graduation events and parties. During one of those parties she noticed the mole on my back and commented on it. I said, “ I’ll get it checked later.”Later became the end of June, and my husband and I were sitting in my dermatologist’s office hearing the news that I had malignant melanoma and would need surgery. Clark’s level 4, Breslow’s depth 1.2, no re-gression, no ulceration ... meaningless terms at the time. My dermatologist said, “The best-case scenario is that it will not have traveled to any lymph nodes and that I would be watched very closely for years.” (He should have just said forever!) “And what if it is in my lymph nodes?” I asked. “I wish I had a good answer to that,” he said. Not too comforting to hear. Note to self: This is serious.The most difficult and frightening aspect of a melanoma diagnosis was loss of control. I am a “Type A” personality, both professionally and personally. I like rules and orderly living. And ironically, I get a cancer that is unpredictable, and doesn’t play by the rules. Cancer patients are usually pretty stoic in public, but I was having trouble even pulling that off. I isolated myself, limited my contact with friends, and completely grieved my life as I once knew it. I am not a crier, but I cried for my uncertain future – the one with me attending my daughter’s graduation from college and my son’s from high school, their weddings, my son playing college lacrosse, building a new house, and retirement – that word left my vocabulary that instant.

I was keenly aware of other people’s lives going on as normal, while mine felt like a train wreck. I also lost one of my most valuable assets – my sense of humor. I remember turning down a party invitation because I could not act like I was OK. I was not OK. Maybe I would never be OK. I am happy to tell you I was wrong about that.My melanoma protocol will sound familiar. Round 1: Wide Local Excision (WLE) on back right shoulder; sentinel node biopsy, surgical drains and more. Round 2: My case went from bad to worse, and in an instant I moved from Stage I to Stage III.

Submicromets in the sentinel node; MRI and PET scans; complete lymph node dissection; another drain. For a bonus, I developed a hematoma on my back, mild lymphedema and cellulitis in my arm.Stats for Stage III melanoma placed my five-year survival odds at 50 percent to 70 percent. After that difficult first year, I chose to leave my job and go on a “cancer sabbatical.” I felt the need to fast-forward my life, just in case. I traveled extensively, spent quality time with my family, including my mom and my dad, before his passing. I attended my son’s lacrosse games, met friends for lunch, caught midday movies, and, last but not least, became the proud parent of a yellow lab puppy.I also became an informed melano-ma patient. I delved into research, this time with a mission – to become educated as much as possible. I studied, learned, and acquired medi-

cal jargon that is comparable to learning a foreign language. The Melanoma Research Foundation sponsors an excellent online resource, as well as an active bulletin board of melanoma survivors. I am inspired by fellow survivors I know only by a login name. I joined a cancer support group made up of some amazing people and enjoy the camaraderie we share, and just the fact that they “get it.”I am 31/2 years out from diagnosis with no recurrences or further complications. I am followed closely by my derma-tologist and surgical oncologist. My doctor and his multidisciplinary team have provided excellent medical care as well as emotional support. My advice to anyone with melanoma is to get to a comprehensive cancer center that specializes in melanoma. It could save your life.My cancer sabbatical is almost over. My husband and I are in the planning phase of building a house, I intend to return to work full time, and my daughter graduates from college the same weekend my son graduates from high school this May. And I plan on cheering at quite a few college lacrosse games this fall. To borrow a line from “The Shaw-shank Redemption,” “You can get busy living, or get busy dying.” I choose life.

Derailed by a Diagnosis, My Life is Back on TrackBy Phyllis Farren

You can get busy living, or get busy dying.”

I choose life.

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Honored Memories

The Melanoma Research Foundation (MRF) is pleased to introduce the Pathways to a CureTM Family Fund program. Through this program, participants will have the opportunity to recognize the name and memory of a loved one, while raising money to help fight melanoma.

The program will work as follows: A family will establish a name for their fund and set a fundraising goal. They will then connect with family members and friends and ask for donations to be made toward this fund.

When Kenneth Taheny was married last year, his mother was not able to be at the wedding. Marilyn Taheny died of melanoma 10 years ago. In her memory, Kenneth and his wife

Caroline established the Marilyn Taheny Research Fund and asked their friends to make donations to the fund in lieu of wedding gifts. The couple’s initial fundraising goal was $10,000, but because of their dedication, the amount that was actually raised far exceeded their target – over $15,000!

“Caroline and I are so grateful to the MRF because not only were we able to honor my mother in such a profound and lasting way, we were able to educate our friends and family members about melanoma and the urgent need for a cure,” said Taheny.

Funds may be directed toward research or education, or may be used to support the new Melanoma Break-through Consortium that will focus

on organizing clinical trials. Every family who establishes a fund will receive recognition on the MRF’s website (www.melanoma.org), in an edition of Newsletter and in future, printed updates.

“We want participants in this program to know how much we appreciate their generosity and the importance of helping the MRF in its mission to eradicate melanoma. We are prepared to recognize their named funds wherever we can, because without families, we cannot make the hope for a cure a reality,” said Barbara Boyle, MRF’s Director for Philanthropic Partnership.For more information on joining the Pathways to a CureTM Family Fund program and becoming a founding leader, please contact MRF at (800)-673-1290, or by e-mail at donate@melanoma.org.

Steve Farrell lost his fight with melanoma April 12. He was 50 years old. Steve was the founder of MRF’s Miles for Melanoma program, which has raised hundreds of thousands of dollars for melanoma research. He was also an

original member of the MRF Marketing Committee, and for his contributions was recognized at the second annual Wings of Hope Gala in New York. Steve leaves behind an extensive family, including his

wife, Maryann, and three children. His loss will be felt by many in the melanoma community, but his contributions will continue to have an impact for many years to come.

Honor the Memory of a Loved OneThrough New Family Fund Program

MRF Mourns The Loss Of Steve Farrell

Do you think you can run a mara-thon next month? We do! Because you could do it one mile and one day at a time. What if everyone who was affected by melanoma, or knows someone who is, committed to running or walking one mile each

day in the month of May? We can collectively run or walk a million miles! Let’s make Melanoma Awareness Month one to remember. Get your friends together to walk, run, bike, swim or even climb flights of stairs; do something that

gets you actively fighting this deadly cancer. Make it a fundraiser, tell your friends, get the family (and the dog!) involved. How many miles can you do? Tell us all about it! Become a fan of our Facebook page: “A Million Miles In May.”

Raise Melanoma Awareness by Running a MarathonOne Day at a Time

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Grassroots Events

(L to R) Stephanie Glenn, Katie Roy, Luke Helms, Becky Rice, Kimberly Greene, Jenna Messer, Dr. Garner (bike), Sherry Hayes, Sue Wells, and Melissa Garner.

(L to R): Rich Wells, Katie Roy, Luke Helms, Jenna Messer (Ruth Helms is behind her), Becky Rice, Stephanie Glenn, Sherry Hayes, Kimberly Greeene, and Melissa Garner.

(L to R): Kyle Ernst and his Dad Greg Ernst

(L to R): David Colley and Justin Gafford

Sally Stilwell

(L to R): McKaley Dean, Maggie Staton, Desi Dean, Jena Dickman, Cindy Dean, Nicole Tyo and Kelly Autry. Mandy’s parents, daughter and sisters

Jena Dickman

2010 Miles for Melanoma in the PF Chang Rock ‘n’ Roll Half-MarathonEvent Date: January 17, 2010

2010 Central Ohio Melanoma Foundation’s Pasta Dinner and RaffleEvent Date: January 30, 2010

2010 Peck’s Pirates – Miles for Melanoma in the Riverfront Race Festival Event Date: January 16, 2010

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Grassroots Events

(L to R) Catherine Rudd and Rebecka Proscia (L to R) Rebecka & Michael Proscia, Rachael Rudd & Michelle Goncalves

2010 Miles for Melanoma in the SoBeFit 5k Run/WalkEvent Date: February 21, 2010

Victoria Hebb

2010 Miles for Melanoma in the Ukrop’s Monument Avenue 10KEvent Date: March 27, 2010

Student: Alison Porter and her work which was bought by her mother.

Two students eagerly work the food table- all food was donated by the students and their families.

2010 Grayson High School Art Exhibit and AuctionEvent Date: March 11, 2010

Willie Groshell at Linfield College in McMinnville, OR. He began his 44 mile march at 4:00am.

Willie Groshell arrived at The Rose Garden in Portland, OR at 4:30pm.

2010 Miles for Melanoma Oregon Melanoma MarchEvent Date: March 14, 2010

Jenny McGregor Jenny McGregor shows her T-shirt

2010 Miles for Melanoma in the Yuengling Shamrock Marathon

Event Date: March 21, 2010

MELANOMA RESEARCH FOUNDATION170 Township Line Road, Building B, Hillsborough, New Jersey 08844

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Orange, NJKeep Current with MRF

Sign up for our e-newsletter. Log on to www.melanoma.org and supply your email address to sign up for our e-newsletter and other updates and information from MRF.

You can join the fight!Every year nearly 150 individuals and groups hold a fundraising event to support research into new treatments and cures for melanoma. You can join the fun! Some people run a marathon, or ride a bicycle (or a unicycle – see calendar for May 23!). Others hold a run/walk event, a barbecue, a classic car show. No matter how large or small your vision, we will be with you every step of the way. We have great toolkits filled with practical ideas, and will provide literature, advice, and support. We can even put you in touch with other volunteer fundraisers. Contact us at info@melanoma.org or (800) 673-1290.