?

NEWSLETTER800-673-1290 • www.melanoma.org • Melanoma Patient Information Page: www.mpip.orgMELANOMA RESEARCH FOUNDATION

1

Fall 2009, Volume 9, Number 2

For most people, the word “chemotherapy” brings up images of hair loss, nausea, and fatigue. Those certainly are part of the picture. For many cancer patients, though, the worst part of chemotherapy is chemo brain.“Chemo brain or brain fog are the common terms used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment,” according to Mayoclinic.com. The reality of chemo brain is not nearly as easy to summarize. For me, brain fog is a constant internal battle, due to the changes in a once nimble mind. It literally feels like a settling fog appearing in areas of my brain where formerly I was used to quick responses. This phenomenon has many causes, and even fewer solutions. In almost all the findings, physicians note that although a very real problem, chemo brain is difficult to track and even analyze. The main causes of chemo brain are cancer treatments such as chemotherapy. Chemotherapy is not widely used for melanoma, but other treatments, including immunotherapy, can have the same effect on the thinking process. Some estimates suggest that over 25 percent of patients who have undergone cancer treatments are affected by chemo brain.1 This may be in part because more people are surviving cancer, and the long-term effects of treatment are now being observed. In many ways, chemo brain is still uncharted territory in the medical world.I am a Stage 3 Melanoma cancer survivor. I underwent nearly a year of treatment with Alpha Interferon--concluding in July of 2007, over two years ago. Despite the passage of time, my brain fog still exists in many ways. The most apparent flaws deal with word confusion, cognitive thinking, and concentration. I notice words lay resting on the tip of my tongue, never to be actually processed. I often confuse words that sound similar or start with the same letter. I frequently cannot recall the actual word I want to use, and if I do, it is usually after the fact. I’ve always been known for my quick wit, and now find I have a harder time thinking up a fast and clever response. My memory seems to have dimmed. It takes me longer to process a thought. At times, I feel like someone has thrown a heavy blanket over part of my brain, or that a large portion has a lingering and nasty hangover. I experience confusion, difficulty concentrating, and a shaky, short-term memory. I find myself asking others to re-explain a process or to repeat the details of a story that were already told. I also have trouble learning advanced or new processes.

Through The Fog 1-2

Volunteer Profile 3

4 Stars for MRF 3

Grassroots and Events Calendar 4

Community Events 4-6

From the Director 5

Ask A Nurse 7

Volunteer Program Update 8

(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.

Through The FogBy Katie Brennan

2

Through The Fog(Continued from Page 1)

Many cancer survivors express that of all the side effects of treatment, brain fog took the longest to subside. People with whom I have spoken state that full ‘chemo brain recovery’ has taken from at least 6 months to over 4 years. Part of the problem is that many of the other common side effects of treatment, such as fatigue, depression, non-appetite, and insomnia, magnify the feeling of a foggy brain. Because of the presence of other symptoms impeding on cognitive thought, chemo brain is much more accepted during treatment than after treatment is completed. I clearly recall my oncologist acknowledging brain fog once, explaining that it should diminish within months after treatment. The communi-cation I had during my treatment with other patients, however, confirmed to me that brain fog was a very real and potentially more longer-lasting side effect. Chemo brain is not well studied. In part this is because oncologists are not equipped to address the problem. When asked why physicians don’t often address the issue of chemo brain, Dr. George Sledge responded, “This is an area where medical oncologists have difficulty, partly because the sophisticated neuropsychology testing is not available to the medical oncologist in the clinic. The reality is that for many medical oncologists, because their training is in cancer treatment instead of the brain, they have trouble dealing with this. Cancer physicians are good at taking care of acute toxicities of therapy but not nearly as good at taking care of chronic toxicity. And finally, unfortunately but realistically, having these discussions actually takes a fair amount of time in the clinic, and medical oncologists are frequently running in and out of rooms quickly to get through the day. That’s not an excuse, but it’s a reality.”2 To some extent, health care professionals downplay the significance of chemo brain because they believe it will ultimately resolve itself.I’ve found that it can be a very slippery slope even to admit having brain fog. Cancer survivors usually develop a strong will, eventually accepting their diagnosis, and do not want to use a crutch to explain their situation. We learn to adapt to a ‘new-normal’ in dealing with shortcomings, and are simply grateful that we have the opportunity to have these shortcomings at all. Typi-cal ‘accepted’ shortcomings range from surgical scars to numbness to any number of physical disabilities. I have learned to accept and even like my numerous scars, and can deal with the lymphedema (numbness), but I am finding it much harder to accept and discuss my lingering brain fog. Like many other cancer patients, I often take extra steps to cover-up the fog to the outside world. This takes constant effort, and is emotionally and physically draining. For me, the mental and even social effects of brain fog have

been very severe. I find myself constantly afraid that people will classify me as incompetent or slow if I don’t immediately internalize the fog and find a way to ‘correct it.’ Unfortunately, I have formed the habit of being overly defensive to compensate for the fog. I take mistakes twice as hard now, and assume a simple error has permanently exposed my newly cognitive difficulties to the world. This internal battle is exhausting. I must take numerous extra steps and make constant adjustments in my daily routine to maneuver successfully around my brain fog. I now realize I have unconsciously adopted some positive coping mechanisms for dealing with my chemo brain. I make lists, schedule reminders on my cell phone and work email, and I’ve even occasionally resorted to using my Grandpa Al’s ancient art of post-it notes. (Unlike my grandpa, I have not taken this to the extreme of post-it notes reminding me of other post-it notes!) I am also trying to incorporate relaxation techniques and frequent exercise to relieve stress. Of all the suggested treatment tips, I now realize that the two I was most reluctant to embrace – acceptance, and telling others – are invaluable for a healthy mental recovery. Simply by addressing my issue of brain fog and finding its existance in the cancer world, I have come to my own genuine treatment plan. The most productive and real solution I can find is to make my ‘general public’ of friends and family more aware of this struggle, and to be more accepting of the fog itself. It is possible there may never be a truly open medical dialogue about chemo brain, and yet it is almost certain that this issue will continue to affect cancer patients and survivors. The positive perspective is that we are lucky enough to be here experiencing this – we are, after all, survivors! Hopefully, we will also be lucky enough to see the problem further resolved in the future. I have learned that instead of creating a debilitating mental struggle by internalizing my brain fog, I can find relief in recognizing and dealing with its existence. Instead of fighting its presence, I must learn to work with it. I suppose that this essay in itself is finally my attempt at advocacy, and is also a personal opportunity to cope better with my own brain fog. It is another step toward the hope that one day, the fog will clear.

Katie Brennan is a 27-year-old resident of Columbus, Ohio and Stage 3 melanoma survivor. She is the founder of The Black Ribbon Benefit, a non-profit effort that has raised significant funding for the Melanoma Research Foundation since 2006.

1 ScienceDaily.com – 10/8/062 www.breastcancer.org December 2008

3

Volunteer Profile

Melinda K. ArmsworthyMRF Thanks You For Your Efforts

Four Stars for MRFAwarded by Charity Navigator

Melinda K. Armsworthy, along with family and friends recently, presented MRF with a check for $10,000! Quite an accomplishment for The Harold Quade Memorial Golf Tour-nament – a first year golf tourna-ment event! We asked Melinda to tell us a little bit about her dad, and why she chose to partner with MRF for this golf tournament:My Dad was diagnosed with a malignant melanoma on his chest in 1974. He underwent a very radical surgery at that time and fully recovered. Follow-up treatments weren’t recommended back then, so he continued to have a complete physical, blood work and scans every year. Thirty years later, the melanoma resurfaced (or had laid dormant) in his liver. He was diagnosed with Stage 4 metastatic melanoma on March 9, 2004 and he passed on May 18, 2004.

We chose to partner with MRF and donate the proceeds from our tournament to MRF in hopes that we can contribute to raising funds for research and treatment options for advanced stages of melanoma. Melanoma is incredibly aggressive in the advanced stages and the death rate from this disease is increasing rapidly. One of the biggest challenges in a first year event, is getting the word out and getting the golfers and sponsors to send in their checks. It is necessary to have the initial donations coming in to provide the working capital – buying some of the supplies is chal-lenging in that sense.My favorite moment of the day was watching each golfer let a balloon go from their golf cart after opening remarks and all the golfers heading off to play. I think that was the first moment we could relax and actually

start to enjoy ourselves after 6 months of planning the event!A job well done Melinda –The Melanoma Research Foundation thanks you for your efforts.

The Melanoma Research Foundation (MRF) earned a 4-star rating from Charity Navigator, the highest rating from the nation’s largest and most- utilized independent evaluator of charities. MRF is the only orga-nization devoted to melanoma in the United States to receive a 4-star rating. “The Melanoma Research Foundation is honored to be awarded Charity Navigator’s 4-star rating,” said Tim Turnham, Executive Director of the MRF. “We are proud to be recognized

among our peers for our commitment to financial accountability, transparency and efficiency. By giving to MRF, donors can feel confident their contributions are going to cutting-edge melanoma research.”Charity Navigator’s rating system provides donors with an unbiased, objective, numbers-based rating system to assess the financial health of more than 5,000 of America’s best-known charities. The overall rating system ranges from zero to four stars and approximately a quarter of the charities

receive a 4-star rating. Charity Navigator’s rating system examines two broad areas of a charity’s financial health: how responsibly it functions day-to-day and how well the charity is positioned to sustain its programs over time.

(from left to right, Mary Mendoza, Jean Carolyn Quade, Melinda K. Armsworthy, Donna Karlsons, and in front, Allison Michelle)

4

Grassroots2009 GRASSROOTS & OTHER EVENT CALENDAR

1 NEW YORK: Wings of Hope for Melanoma Gala at The Edison Ballroom, New York, NY(Contact: Mary Mendoza, mmendoza@melanoma.org)

6 NEW YORK: Lenore Goldberg Charity Golf Outing at the Philip J. Rotella Memorial Golf Course in Thiells, NY(Contact: Allison Goldberg, allisongoldberg673@gmail.com)

10 CONNECTICUT: Miles for Melanoma in the ING Greater Hartford Marathon(Contact: Sarah McCusker, sarah.t.mccusker@gmail.com)

10-11 WASHINGTON, DC: TEAM M4M Annual Conference, Washington, DC(Contact : Mary Mendoza, mmendoza@melanoma.org)

11 MICHIGAN: 4th Annual KDB Melanoma Walk in Milford, MI(Contact: Tricia Edwards, tricae363@comcast.net or www.melanomawalk.org)

11 ILLINOIS: Miles for Melanoma in the Chicago Marathon(Contact: Lisa Anderson, gigi54papa51@hotmail.com or Jeremy Anderson, jeremy.anderson@l-3com.com)

11 MASSACHUSETTS: Miles for Melanoma in the Boston Athletic Association’s Half Marathon(Contact: Justine Laurie, justine.doyle@gmail.com)

18 CALIFORNIA: Miles for Melanoma in the Nike Women’s Marathon in San Francisco, CA(Contact: Kristine Bobrowski, bobrowski-ca@att.net)

24-25 PENNSYLVANIA: Melanoma Messengers Training, Philadelphia, PA

25 WASHINGTON, DC - TEAM M4M in the Marine Corps Marathon (Contact Kevin Stenstrom & Kendel Paulsen, teamm4m@melanoma.org)

1 NEW YORK: Miles for Melanoma in the New York City Marathon(Contact: Bill Gaudelli, gaudelli@exchange.tc.columbia.edu)

1 NEW YORK: Miles for Melanoma in the ING New York City Marathon(Contact: Mark Rigney, mrigney@ycst.com)

1 PENNSYLVANIA: Miles for Melanoma in the Med Express Spirit of Pittsburgh Half Marathon(Contact: Larissa Lakatos, lakatosl@wvuh.com)

14 VIRGINIA: TEAM M4M in the Richmond Full & Half Marathon(Contact Kevin Stenstrom & Kendel Paulsen, teamm4m@melanoma.org)

15 TEXAS: Miles for Melanoma in the San Antonio Rock & Roll Marathon(Contact: Dana Hawley, dmhawl@gmail.com)

18 NEW JERSEY: Survivorship: How to Have Hope, Courage and Empowerment Teleconference 12:00 PM – 1:00 PM E(Contact: www.melanoma.org or 1-800-673-1290)

21 MARYLAND: Miles for Melanoma in the 47th Annual JFK 50 Mile in Washington County, MD(Contact: Bruce Flanagan, bfappraisal@aol.com)

22 PENNSYLVANIA: Miles for Melanoma in the Philadelphia Marathon(Contact: Tyler Wille, twille@sandptrs.com)

26 GEORGIA: Miles for Melanoma in the Atlanta Half Marathon(Contact: Shawn Shorrock, shawnshorrock@gmail.com)

OCTOBER

NOVEMBER

On September 20, 2009, over 400 people came together for Miles for Melanoma, New Jersey. Together the event raised over $70,000 for melanoma research, while also rais-ing awareness in the greater New Jersey area. Big thanks to everyone on the organiz-ing committee for putting on this great event.

NJ Miles For Melanoma

5

Executive Director

As I write this I have been with MRF for just over seven months, and in that time I have learned a lot.I have learned that the last time a new drug was approved for metastatic melanoma was over a decade ago, and that this drug doesn’t work at all in 85% of the people who take it. I have learned that the best option offered patients with advanced disease is enrollment in a clinical trial. I have learned that this beast steals the lives of far too many people – young and old, rich and poor, male and female – and that it ravages the lives of their friends and their family. I have known for many years that cancer doesn’t fight fair, and that is certainly true of melanoma.

But I have also learned to hope. The hope comes from two places – science and people. Researchers and clinicians know significantly more about melanoma now than they did just three or four years ago. And in this case, knowledge truly is power. Unless something very unexpected happens, another new drug will be approved in about a year, and many people realistically believe that at least one more will follow not too long after that. Because of the promise of these developments, we at MRF are looking to expand our efforts into some initiatives that will accelerate drug development and approval – very exciting.The other reason for hope is the melanoma community. In the past months I have had the honor to meet countless patients, caregivers, physicians, and people who lost loved ones to this disease. I have encountered many dozens more through our online patient bulletin board – www.MPIP.org. I am deeply impressed with the compassion, genuine caring, level of expertise, and outright passion evidenced in this community. We have a lot of work to do. After all, our dream is nothing less than making melanoma go away forever. But we have brilliant minds focused tirelessly on this matter, and we have a vast network of people – many of whom are featured in this newsletter – committed to joining the fight. The hard work of transforming hope into reality is made easier by those who toil along with us. And that may be the best lesson of all.

From the DirectorTim 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 9, Number 2 Fall 2009

I am deeply impressed with the compassion, genuine caring, level of expertise, and outright passion

evidenced in this community.

Walk While You Talk

Committee for the Peggy Spiegler Walk. Called “Walk While You Talk in Memory of Peggy Spiegler,” it was held on July 11, 2009 at Cooper River Park in Cherry Hill, New Jersey. The first year walk raised about $35,000.

6

Community Events

Neil Gaines had a fundraiser called “MelaNoMo” at the Gaines’ family cabin on the Chattahoochee River, and it raised about $20,000. Gaines family (l to r) Gary Gaines, Tracy Gaines, Graham Gaines, Kelley Gaines, Neil Gaines.

Runners of all ages participated in this year’s Block the Sun Run on June 20, 2009. The Wisconsin Dells hosted the event for the third year running, and it was another huge success this year.

The Stars for Hope event raised $3,500 for MRF this year.

Runners, Block the Sun Run

Stars for Hope

TEAMM4M

MelaNoMo’!Our TEAMM4M (M4M = Miles for Melanoma) is recruiting volunteers from around the United States who are interested in developing a local team and training runners in order to participate in a specific marathon or half-marathon and to raise money for melanoma research. Interested?In 2008, TEAMM4M participated in the Philadelphia Marathon and raised $110,000 for melanoma research. This year, the Team will be running in the Marine Corps Marathon (Washington DC) and the Richmond, Virginia Marathon and Half-Marathon.Training is available for runners who are interested in organizing a TEAMM4M. Contact Kevin Stenstrom, TEAMM4M Director, at coachstenny@yahoo.com to find out more or to see how you can join our TEAMM4M.

7

Melanoma Questions?

ASK A 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

qqmwr

Ina

Ya

q

w

Ia

Ya

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.

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 provid-ers, 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.

Hi Jennifer –Thanks for your questions. People often find it very scary to be diagnosed with melanoma. It is different from other types of

cancer where there are more specific guidelines about what tests should be performed and at what time periods. However, one of the good things about melanoma is that once you know the warning signs, the evidence is right on the surface of the skin. By performing self skin examinations once a month and getting professional skin exams every three months in the beginning and yearly for life, you and your health care providers will be aware of any changes in your skin. As you probably all ready know, you want to look for the ABCDE warning signs. You want to examine your skin for the following: Asymmetry, meaning that one side of the mole is not the same as the other half. Irregular Border, meaning that the border/edge of the mole is not smooth; instead it is wavy or scalloped. Color variation within a single mole, meaning that many different colors might be present within a single mole, including black, brown, red, pink, blue, or flesh color. Diameter greater than 6 mm, which is about the size of a pencil eraser. And, Evolution, meaning that the mole has changed in some way over time. Anytime that you notice a change in a mole, you should bring it to the attention of your dermatologist. You are truly the best judge of any changes in your moles and should always bring any of your concerns to the attention of a health care provider.

The melanoma that you’ve had was a relatively low risk lesion, meaning that you found that lesion very early. Most people that are diagnosed with a second melanoma find it at an even earlier stage than their first melanoma. Given the stage of your initial melanoma, studies would tell you that there is an extremely high likelihood that this melanoma will never come back. You remain at risk for developing a second primary melanoma on the skin. You will hopefully detect a second melanoma early by examining your skin regularly.

In addition to screening your skin for any signs of melanoma, it also sounds like you are aware of additional ways to positively impact any additional risk for melanoma. The best way to do that is through safe sun habits.

The Melanoma Research Foundation recommends the following sun safety practices for all skin types to help prevent skin cancer:Generously apply sunscreen to all exposed skin – even on cloudy days – using a sun protection factor (SPF) of at least 15 that

provides broad-spectrum protection from both ultraviolet A (UVA) and ultraviolet B (UVB) rays.It sounds like you are doing everything that you should be doing. Examine your skin including your back, scalp, and other hard to

reach areas once a month. Continue your regular follow up with your dermatologist. Tell your family members that you have been diagnosed with melanoma so that they can begin seeing a dermatologist as well. Practice safe sun habits. Make healthy choices for your overall health. Make sure your cancer screenings are up to date (mammogram, pap smear, colonoscopy, etc). Make sure that your other screenings are up to date (blood pressure, cholesterol, etc). Eat a well balanced diet. Get regular exercise.

Hope that helps! – Suzanne

Dear Suzanne,I was diagnosed with stage 1B melanoma a few months ago (3/09). I had my excision that is still healing, and my

dermatologist said that they were able to remove all of it and that I am fine. However, I have now spent hours and hours on the internet researching and listening to countless stories of melanoma patients who were told they were fine, only to find out some time later that it had spread. I don’t have insurance since my husband recently got laid off, so I don’t have a primary doctor.

With giving you that short background, my questions are:• Is there anything I should be doing right now?• What type of doctor should I see, and what tests should I get done to make sure I am ok for right now? I have been told to go get a full body scan every 3 months which I will do. I wear sunscreen and protective clothing every

day – I just feel like there is more I should do. I don’t want to wait until it’s too late. Thank you for your timeSincerely – Jennifer

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

Non-Profit Org. U.S. Postage

PAID Permit No. 158

Orange, NJ

Volunteer Program Update:Mary Mendoza recently joined the MRF team as the Community Engagement Manager. With a background in community organizing and volunteer management, Mary is thrilled to have an opportunity to expand the national MRF volunteer network. In addition to the grassroots fundraising efforts of our dedicated volunteers, we now offer opportunities for volunteers to turn up the volume on advocacy, provide melanoma education in the community, and offer much needed support to patients and caregivers. Through the efforts of our trained, dedicated volunteers, MRF will:• Receivethefinancialresourcesneededtofundresearch• Havearobustvoiceinaddressingadvocacyissues—bothon

afederalandlocallevel• Becomeaprimarysourceofeducationaboutmelanomafor

patients,caregivers,thecommunityat-large,andhealthcareproviders

As a Melanoma Messenger, our volunteers are bringing the national voice of MRF into their local communities. Each volunteer brings with them their unique perspective and talents. Won’t you join us? For more information on our current volunteer opportunities, and how you can get involved, please contact Mary at mmendoza@melanoma.org or (908) 698-1955.

Keep Current with MRFwe are on:

Do we have your email address? Log on to melanoma.org and supply your email address to sign up for our e-newletter and other updates and information from MRF.

RememberMelanomaResearchFoundationinyourworkplacegivingcampaign.OurCFC#is35748