Forum Cutaneous CutaneousLymphoma LymphomaFoundation: Foundation:Making Makingsure sureeach eachperson personwith withcutaneous cutaneouslymphoma lymphomagets getsthe thebest bestcare carepossible possible www.clfoundation.org Summer 2013 How to Live a Life of Joy Tena Brown INSIDE THIS ISSUE From the President and the Chief Executive Officer .............................. 2 DC Patient Networking Group ........ 3 Tena Brown is a patient advocate, consultant, inspirational speaker, author and teacher. Alive with Mycosis Fungoides: A Patient’s Perspective: Jan Paro........ 4 A Caregiver’s Story: Meredith Haab........................... ........ 5 2-Day Cutaneous Lymphoma Patient Conference Highlights.......... 6 Patient Educational Opportunities ...... 8 One Voice Against Cancer Lobby Day 2013............................................. 9 Scientific Meetings Recap................10 Get Involved..................................... 12 Cutaneous Lymphoma Foundation PO Box 374 Birmingham, MI 48012-0374 telephone: (248) 644-9014 fax: (248) 644-9014 email: [email protected] www.clfoundation.org Forum is published by the Cutaneous Lymphoma Foundation. Disclaimer The Cutaneous Lymphoma Foundation does not endorse any drugs, treatments or products reported in this newsletter. Information is provided for informational purposes only. Because the symptoms and severity of cutaneous lymphoma vary among individuals, the Cutaneous Lymphoma Foundation recommends that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment and medical care. Throughout my life, I have witnessed so many people being afraid of their greatness. In fact, they fear greatness more than they fear being ordinary! I love this quote by Bill Cosby, “Decide that you want it more than you are afraid of it!” Whether what we want is a new relationship, a successful career, better health or just a better life, we still have to make a decision to do so. Too many people let fear run their lives instead of pursuing the powerful life that they desire. My favorite conversation to have with folks is how to improve their quality of life. Let’s face it; if you have a chronic or rare disease, it’s an even greater challenge to “live your best life.” That’s why we need to do all we can as patients to empower ourselves and ensure that we have the best care possible. Living with Psoriasis/Psoriatic arthritis for over 42 years, both chronic and debilitating diseases, has taught me a lot about how to live a life of joy. It has taught me how to persevere and overcome challenges, how to be my own advocate and has helped me to develop a strong “empathy” muscle for dealing with people. More importantly, it has taught me that my disease does not define me. I have a disease, but it doesn’t have me! My goal has always been to live a life that I love and live it passionately. Chronic daily pain has forced me to become mentally, emotionally and empathically strong. I now teach others how to advocate for themselves and how to live passionately in spite of the challenges that they face. We are always our own best advocate. So how do you live your best life with a rare and chronic disease? As Bill Cosby says, you have to “decide” that you want it (your best life) more than you are afraid of it. Awareness of your condition is vital. Finding the right “team” to assist and support you is the foundation that you need to navigate the rough waters you face. Studies show that when you have a disease that “shows,” the emotional and psychological aspect is much greater than having a disease that other people cannot see. This is why we need kind, caring people on our team and in our lives. Lastly, we have to persevere, which I believe is the key to living an empowered life. All of us have days that we are sad, depressed, frustrated, lonely and negative. However, becoming mentally strong is your greatest source of power and strength. Awareness: Awareness of the disease is very empowering. We learn that we are not alone: that there is hope, that there are caring people helping to find a cure, treatments and options. Being diagnosed with a rare disease is overwhelming. You don’t know where to begin to process it emotionally, or how to navigate an entirely new reality. I encourage people to seek knowledge and education. Be open to alternative therapies. Talk to others How to Live With Joy...continued on page 11 Cutaneous Lymphoma Foundation From the President From the Chief Executive Officer As we roll into the dog days of summer with vacations, longer days and warm temperatures (at least for us in the US) we at the CLF are taking a few deep breaths too. It has been a busy spring, filled with medical meetings and patient educational events, ending with our first ever 2-day patient conference in Philadelphia on June 29 and 30. Quality Assurance It is very fitting to have this issue of the Forum focus on quality of life, a term that has grown to represent the patient experience, as told by patients. Fifteen years ago, it was Judy Jones’ personal journey with cutaneous T-cell lymphoma (CTCL) that lead to the Cutaneous Lymphoma Stuart R. Lessin, M.D. Foundation’s establishment, and the patient experience lies at the heart of the Foundation’s mission. The first collaborative effort of the Foundation with the medical community started in 2005 with a quality of life survey of the Foundation’s membership. This landmark study was lead by Dr. Marie-France Demierre, who collected data from patient questionnaires and demonstrated that patients believed CTCL had a profound impact on their functioning, emotional, and social well being. It was the first medical paper to document the patient experience using data reported by patients with CTCL.* Since then, quality of life surveys have been included in clinical trials testing new CTCL drugs so that we can learn how well a new drug treats the lymphoma as well as how it effects the well being of those taking the drug. Recently, the Foundation held its first two-day Patient Education Forum, June 29-30, 2013 in Philadelphia. The expanded format featured new programs focused on improving quality of life. These included nutrition, integrative medicine and insurance, along with programs for veterans and young patients. Looking ahead, watch for the launch of the Cutaneous Lymphoma Foundation’s web-based patient registry. It is the first step in the Foundation’s ambitious plan to develop an online platform for patient reported outcomes. Online patient reported outcomes are quickly changing the landscape of medical research. Technological advances are offering new opportunities for patients to participate in collaborative efforts with scientists and physicians in ultimately improving quality of life. It’s an incredibly exciting time as the Cutaneous Lymphoma Foundation continues its growth and expands its capacity to have a positive impact on people’s quality of life. I hope you will be able to continue to join me in supporting the Foundation and its work toward quality assurance. *Demierre MF, Gan S, Jones J, Miller DR. Significant impact of cutaneous T-cell lymphoma on patients’ quality of life: results of a 2005 National Cutaneous Lymphoma Foundation Survey. Cancer 2006; 107(10): 2504-11. 2 Susan Thornton As many of you know, the 2-day event was something I wanted to add to our program calendar since taking on the leadership role last summer. To be honest, there were many days when I questioned my sanity of adding an event of this magnitude. But now, having experienced the event, meeting everyone who attended, and listening to the speakers, I can say I’m thrilled we put it on the calendar. Although our one-day patient events are terrific and provide an opportunity for you to learn from experts in the field and meet your fellow cutaneous lymphoma adventurers, there never is enough time to talk about the other challenges that we face living life with cutaneous lymphoma. We wanted to explore topics like nutrition - always a hot one, and navigating the very complex insurance and reimbursement system, which can frustrate even the calmest among us. From the feedback we received over the weekend and in the evaluations, it sounds like we met your expectations. Thank you to everyone who was able to join us. We also held our first ever silent auction and cocktail reception on Saturday evening. You can enjoy some of the highlights of the event in this edition. We hope everyone will try and attend next year in Kansas City. It will be the last weekend in June, so mark your calendars now. For everyone who could not join us, we captured the clinical presentations and some additional Q&A from our speakers on video and will be uploading them soon to our new Online Learning Center. Check the website in a few months and let us know what you think. We welcome your feedback on the topics and presentations you would like to see captured in the future. Our goal is to provide you with information you need and can use in an accessible format. While the team here closes our fiscal year over the summer, we look forward to the fall and spring programs and hope to see many of you in person. In the meantime, enjoy the information and stories in this newsletter and drop us a note to let us know what else you would like to see us cover. It’s going to be a terrific year with additions to our programs and services - keep your eyes open for announcements. Check out the Online Learning Center when you get a chance and give us your feedback on what else the CLF can do to help you live your life vibrantly, fully and with zest! Forum, Summer 2013 Forum The newsletter of the Cutaneous Lymphoma Foundation ALL RIGHTS RESERVED MEDICAL EDITOR Stuart Lessin, M.D. Cutaneous Lymphoma Foundation is a 501(c)(3) non-profit organization. Donations are tax deductible to the extent allowed by law. BOARD OF DIRECTORS OFFICERS Stuart Lessin, M.D. Marianne Tawa, MSN, RN, ANP Jeff Ward Laurel Carlson President Vice President Treasurer Secretary DIRECTORS Joseph Eischens Brace Krag David Lamb Pierluigi Porcu, M.D. Christopher Shipp Michael W. Young Director Director Director Director Director Director MEDICAL ADVISORY BOARD Thomas Anderson, M.D. University of Michigan Kevin Cooper, M.D. Case Western Reserve University Madeleine Duvic, M.D. MD Anderson Cancer Center Francine Foss, M.D. Yale University School of Medicine Lars French, M.D. Geneva Medical Center Sam Hwang, M.D., Ph.D. The Medical College of Wisconsin Robert Knobler, M.D. University of Vienna Thomas Kupper, M.D. Brigham and Women’s Hospital Liliane Laroche, M.D. University of Paris Sue McCann, MSN, RN University of Pittsburgh Medical Center Lauren Pinter-Brown, M.D. UCLA Medical Center Washington, DC Area Patient/ Caregiver Networking Group Formed A group of eighteen CTCL patients and caregivers from the DC/MD/VA area met on April 18th at the Thomas Jefferson Public Library in Falls Church, VA. Using the CLF’s database, Facebook, and the CTCL-MF listserv, interested individuals were invited to attend and discuss any and all issues pertinent to them and their disease. The idea of organizing a DC area group was the dream of CLF Board member Laurel Carlson, a CTCL patient for over 30 years who felt that, “the need for us to have our own support group is just as important as for anyone else with a cancer – maybe even more important since on our own, we rarely find someone who is familiar with our disease.” The response of those who attended was very positive, and all agreed to continue to meet on a quarterly basis. For more information about this group and their meeting schedule, contact the Cutaneous Lymphoma Foundation at 248.644.9014, ext. 1 or at [email protected] What Is Cutaneous Lymphoma? Cutaneous lymphomas are cancers of lymphocytes (white blood cells) that primarily involve the skin. Classification is based on lymphocyte type: B-lymphocytes (B-cell) or T-lymphocytes (T-cell). Cutaneous T-cell lymphoma (CTCL) is the most common type of cutaneous lymphoma that typically presents with red, scaly patches or thickened plaques of skin that often mimic eczema or chronic dermatitis. Progression from limited skin involvement is variable and may be accompanied by tumor formation, ulceration and exfoliation, complicated by itching and infections. Advanced stages are defined by involvement of lymph nodes, peripheral blood, and internal organs. David Ramsay, M.D. New York University Alain Rook, M.D. University of Pennsylvania Steven T. Rosen, M.D. Northwestern University Martin Weinstock, M.D., Ph.D. Brown University Sean Whittaker, M.D., MRCP Guys & St. Thomas Hospital Lynn Wilson, M. D., MPH Yale University School of Medicine The Cutaneous Lymphoma Foundation’s patient educational newsletter, Forum, has been made possible thanks to the following generous supporters: STAFF Kira Mann Director of Development and Marketing Holly Priebe Chief Operating and Financial Officer Susan Thornton Chief Executive Officer Deb Van Zegeren Administrative and Communications Manager 3 Cutaneous Lymphoma Foundation Alive With Mycosis Fungoides - A Patient’s Perspective Jan Paro Westlake, LA Even the computer doesn’t recognize Mycosis Fungoides. A wavy red line under it says it is odd, unusual, and not easily recognizable. It is that very fact that makes it imperative for a physician to have those “eagle Jan Paro eyes” that recognize the peculiar kidney bean shape, the cigarette paper thin skin texture, the odd red/brown/purple color. The first two doctors who saw it on my backside didn’t, and so, I dismissed it. “What could that be? Aha, just a rash from yard work, maybe?” I was my own worst enemy. The queen of denial. That was in September of 1990. Life was extremely busy and more important things were happening, and as time passed, the ‘spot’ hadn’t really changed. In 1993, I ended my career running paint and body shops, moved from Texas to Florida and started a new career in human resources. I even married again. Life was good! That is, until my twin sister became terminal with a constellation of complications from Type II juvenile diabetes. I made an appointment with Dr. Michael Cormier, affiliated with Moss Regional Medical Center. Dr. Cormier was a certified “eagle-eye” dermatologist. He is my hero! I knew something wasn’t right by his arched eyebrow. All I heard were the word “biopsy” and something about a cutaneous T-cell lymphoma. The biopsy proved Dr. Cormier’s suspicions to be true. I had “won” the rare cancer that involved skin and blood… dang! I then transferred to oncologist D. John Gaharan. We tried sunlight, triamcinolone creams and going naked. At 62, that was a hard Rx to take! I read and learned to dig deeper on words I’d never heard before until the day I bravely typed ‘lymphoma’ in the internet search field. It came back with the National Cancer Institute and contact information for several lymphoma foundations. I left messages with two of them and halfheartedly dialed the Cutaneous Lymphoma Foundation’s number. To my surprise, CEO Susan Thornton answered - from an airport - God does provide miracles! We didn’t “speak,” we talked. She I felt like my skin shared information on resources for support and for research. I realized my on my lower back ignorance had lead to fear. This was my fight, but I quickly realized I had an had become a “army” in my corner! popcorn factory with When no real progress had occurred To spend as much time with my sister firecracker kernels. for a time, my next treatment option as possible, I became a long distance was chemo. I was put on Targretin, driver from the Florida Panhandle an oral Bexarotene, at 7 capsules a to Austin, Texas on a monthly basis. day. This was an intense dose, but we Truckers likely still talk about “the day that lady came outta that 280Z pulling her pants away from were attempting to ‘leap frog’ over the advancement of patches. The treatment has some complications to it, and her.” I felt like my skin on my lower back had become a I encountered several. But, I’ve long believed “you can’t popcorn factory with firecracker kernels. The pain was make an omelet without breaking some eggs.” indescribable, intense, exploding. I have had five more of these episodes in these last years. Extreme stress and heat After 7 weeks on 7-75mg a day, I was reduced to 4 appear to be the triggering factors. Still, no doctor found capsules. Targretin has worked so very well for me that my episodes alarming, and they continued to attribute my I wish it would have been considered as a first option. symptoms to dermatitis and inflamed eczema. Who was I Because of my age and Targretin’s drying effect, I consume to question them? a LOT of water for hydration and creams for moisture. But, the huge, ugly, unwomanly patches are fading, my In 2003, I was in an auto accident that broke my neck. countenance is brightening and I am regaining my life, Over the next three years, that spot grew from a quarter sometimes in baby steps, but steps forward nonetheless. size to the entirety of my backside. By 2008, my spot I took pictures of the before, during, and present. I have became the least of my issues. The world tilted in 2008 proof of the progress in 8x10 glossies! for me and millions of others who were suddenly faced with losing our jobs and the challenge of finding new I attempt to be ALIVE every day. I eat as best as I can, employment. We ended up moving to Louisiana, and this exercise, rest as often as I should, drink my water, limit was ironically the best move I could have made. Who sun exposure, take my Targretin and laugh out loud at least knew?? Along with the increased stress I was under, my 4 times a day. I know how very fortunate I am!! I have rash continued to grow. It expanded to my breast region, seen the pictures. LIFE IS GOOD! under my right arm and between my legs!! It was the classic “OMG! Go to a doctor NOW!” 4 Forum, Summer 2013 My Personal Journey With Cutaneous Lymphoma: A Caregiver’s Story Meredith Haab Wayne, PA With tremendous bravado I said sure, I’d write about caregiving for the Spring CLF newsletter. Sure, I’d love to, no problem. And I did want to, yet the truth is, it hurts. I actively fight down thoughts about caregiving because for Mom and I, that meant lesion care. I helped Mom mostly with her lesion care and also some doctor’s appointments. But up until the intensive lesion care, Mom and Dad shielded us “kids” from the lesions and tumors. With deep, great love, lesion care was endured together by Mom, me, my wonderful sister-in-law, and a few amazing nurses. Lesion Care Mom and I decided to call the cancer care, lesion care – as opposed to the generally used term, wound care. We decided to call this what it was in an effort to be honest and not slip into the safer harbor of denial. We believed the difference in term was important to the care routine as well as to other professionals’ understanding that this was the cancer, not a superficial secondary wound that would heal. This wasn’t a burn with dead skin to be debrided, nor a wound that needed to breathe. This was the cancer. This was It. We were all looking at It, the elephant in the room, and all I could see between lesions was my Mom’s beautiful freckled French Huguenot skin (as she’d tell us). Lesion care between caregiver and patient is nothing less than intimate. It’s a shared experience. It’s painful for everyone involved, physically and emotionally. Yet, it’s also full of grace and love. Participating in lesion care with my Mom was loving her. It was living with her and sharing her illness and letting her know she wasn’t alone. It was a way that I could stay and control my pain in being useful. It was too painful for me to do nothing and feel helpless. Doing something and feeling helpful was – well, coping. New Roles Mom and I learned a lot about each other: it was unceasingly brave for her to be cared for and I tried to match her by being brave enough to be caregiving. After a lifetime of being a somewhat headstrong daughter, I was finding out that I desperately wanted to be made out of the same cloth as Mom. We laughed in our mutual astonishment and wonder: the apple didn’t fall far from the tree after all. There were days when neither of us could face lesion care – but we had to do it anyway. There were days when Mom just didn’t want me to be her caregiver. She wanted me to just be her daughter. She wanted to be just my Mom. There was a tense dance of honoring Mom’s wishes yet sometimes having to do what was best for her even when those two things weren’t the same. These were little soulful Gabrielle Schwarz Haab and her daughter, Meredith Haab deaths we suffered with tears, knowing the roles we now had, and didn’t want. But we were together… we were together. Sacred Time And then, there’s this: ultimately, caregiving was a sacred time. A time of pain, confusion, anger, exhaustion, and hopelessness. All this mixed together with the beautiful gifts of love, insight, truth, knowing, grace, and still more love. There was a constrictive sense of duty side by side with knowing there was no other place I’d be. My Mom and I talked about essentials all bared down: God, love, and our roles as mothers and daughters. My Mom, who was never at a loss for words, had difficulty describing the immense love and pride she felt about the family in which she grew up and the family she raised. She was astonished at how much she was loved by so many. She was seeing herself in a new light, in a new wide spectrum, and it was an absolute joy and privilege that she shared with me. Also, Mom talked about Dad. What a gift to a child of any age to hear one’s mother speak of her abiding love of one’s father – even after 52 years of togetherness! GSH Lesion Care Program And so, I can close with kinder and gentler thoughts about caregiving and lesion care than I started with. It was hard and wonderful. Isn’t that life? What else would I expect? And in the end, my Mom encouraged me to create something for others: she gave me her blessing to start the GSH Lesion Care Program which the Cutaneous Lymphoma Foundation is wholeheartedly supporting, in honor of my Mom, Gabrielle Schwarz Haab – Gaby. For more information about the GSH Lesion Care Program, contact the Cutaneous Lymphoma Foundation at (248) 644-9014 or [email protected]ation.org. 5 Cutaneous Lymphoma Foundation 2-Day Cutaneous Lymphoma Patient Conference The Cutaneous Lymphoma Foundation’s first annual 2-Day Cutaneous Lymphoma Patient Conference was an amazing event. Attendees from all over the continent, and from as far away as Inuvik (it’s above the Arctic Circle!), gathered and were informed, educated and reassured by cutaneous lymphoma experts during Saturday’s clinical presentations. Dr. Larisa Geskin CLF Board Members participated in the patient panel and shared their own personal experiences with cutaneous lymphoma. Dr. Alain Rook Dr. Stuart Lessin Patient Panel with CLF Board Members: Jeff Ward, Christopher Shipp, Laurel Carlson and Joe Eischens Attendees had an opportunity to establish relationships with one another and with the medical professionals throughout the 2-day conference. Nurse Practitioner Marianne Tawa and Dr. Pierluigi Porcu took questions on clinical trials. 6 Forum, Summer 2013 The cocktail reception and silent auction were a wonderful opportunity for patients, caregivers/family, CLF staff and Board Members and corporate partners to mix and socialize. The auction raised over $3000 for CLF programs. After the reception ended, many attendees continued to stayed connecting and sharing their journey late into the evening. During the cocktail reception, past and present Board Members, who have generously given years of time and talent over the last 15 years, were honored. Those recognized for their of commitment and dedication include: Dr. Stuart Lessin, Susan Thornton and Christopher Shipp Richard Bradlow Claudia Day Judy Jones Margie Legowski Dr. Stuart Lessin Leora Lowenthal Christopher Shipp Michael W. Young Appreciation awards were also presented to our corporate sponsors: Former Board Member Claudia Day Christina Bach, MBE, MSW, LCSW, OSW-C Celgene Therakos Kyowa Hakko Kirin Ceptaris Merck Seattle Genetics Medicis Spectrum Ali Shapiro Dennis J. Gardin Sunday’s program began and closed with Dr. Georgia Tetlow the inspirational stories of burn survivor Dennis J. Gardin and Dr. Neil Dicker, a patient with Sézary syndrome. In between, attendees were able to choose from breakout sessions about integrative medicine, nutrition and insurance issues. The qualityof-life sessions were very popular and a successful addition to the forum format. 7 Cutaneous Lymphoma Foundation Cutaneous Lymphoma Patient Educational Forums For more information and to register for these FREE events, visit www.clfoundation.org or call (248)644-9014. The Cutaneous Lymphoma Foundation offers free Patient Educational Forums throughout North America, which provide an opportunity to: Receive accurate information about cutaneous lymphoma and learn about treatment options from experts in the field. Learn what’s new in cutaneous lymphoma research and clinical trials. Ask the Experts - probably the most popular portion of the day. The Q & A sessions provide an opportunity to ask the medical professionals and speakers your questions, in a relaxed and friendly environment. Meet and network with other individuals affected by cutaneous lymphoma. Being diagnosed with or caring for an individual with a rare disease can be lonely. Meet others who know and understand your experience. Learn about available resources for treatment and support. We hope to see you soon at an upcoming event! September 7: Salt Lake City, UT Cutaneous Lymphoma Foundation Patient Educational Forum The Yarrow Hotel, Park City, UT September 27-29: Brooklyn, NY North American Educational Forum on Lymphoma in collaboration with the Lymphoma Research Foundation New York Marriott at the Brooklyn Bridge October 12: Atlanta, GA Cutaneous Lymphoma Foundation Patient Educational Forum DoubleTree by Hilton Atlanta - Buckhead October 19: Chicago, IL Cutaneous Lymphoma Foundation Patient Educational Forum More details coming The Cutaneous Lymphoma Foundation extends its thanks to the following generous supporters of our 2013 Patient Educational Forums: October 26: Minneapolis, MN Lymphoma Workshop in collaboration with the Lymphoma Research Foundation Hilton Minneapolis/St. Paul Airport, Bloomington, MN November 9: San Francisco, CA Lymphoma Workshop in collaboration with the Lymphoma Research Foundation Hotel Nikko, San Francisco, CA November 16: Washington, DC Cutaneous Lymphoma Foundation Patient Educational Forum Bethesda North Marriott Hotel & Conference Center 8 Forum, Summer 2013 One Voice Against Cancer - Lobby Day 2013 The CLF CEO, Susan Thornton, and CLF volunteer, Askia Acosta, joined over 90 patient advocates from 39 other national cancer organizations in Washington, DC on July 9-10 as part of One Voice Against Cancer. This is an annual event that brings together a wide variety of organizations and brings “one voice” to legislators from the collective cancer advocacy community. It is critical for the CLF to participate in these national efforts and contribute the stories of our patients to these of the 14 million cancer survivors in America. Approximately 1,500 people still die every day in this country from cancer. In the difficult fiscal climate under sequestration, it is even more important for all of us as cancer survivors and patients to let our legislators know the importance of continuing to fund cancer research and initiatives. Askia Acosta and Susan Thornton at OVAC Lobby Day We asked the legislators to make the fight against cancer a national priority and funding these efforts must be protected and prioritized. Impact of the recent budget decisions: • Congress has already capped and cut discretionary spending by $1.5 trillion over the next decade. • The National Institutes of Health budget was cut by $1.7 billion, and the Centers for Disease Control budget was cut by $570 million this year. • Unless sequestration ends, cancer research and prevention are scheduled to face another round of sequestration cuts in fiscal year 2014. • By fiscal year 2022, discretionary spending’s share of the federal budget will be at its lowest level since President Eisenhower was in office. • At the same time, cancer rates are expected to grow over the next decade as the U.S. population ages. Although these efforts were not specific to cutaneous lymphoma, all federal and state funding for continued support of cancer research, prevention, education and other programs helps us all move forward in the fight against cancer. Participating with other groups like the LiveStrong Foundation, American Cancer Society’s Cancer Action Network and other organizations as part of the OVAC coalition gives us a stronger voice than we have alone. You too can help. Write an email or letter to your Senators and Congressmen asking them to support the OVAC initiatives to end sequestration and stop the cuts to cancer research and prevention funding. Adding your personal story and voice to our efforts in Washington will make a difference. Check out the details of the event (including photos) at www.OVAConline.org. Participants came from 41 states and conducted 164 meetings with House and Senate offices, including 67 member-level meetings. The Pennsylvania contingent had the honor of delivering an OVAC champion award to Congressman Charlie Dent (second from left). 9 Cutaneous Lymphoma Foundation Highlights from IID Medical Meetings and ASCO International Investigative Dermatology - May 8 - 12, 2013 Late spring found the CLF CEO, Susan Thornton, in Edinburgh, Scotland for the International Investigative Dermatology (IID) meeting. The meeting is held every five years and brings together dermatologists, scientists and researchers from around the world who specialize in dermatology. This year’s event was the largest ever with 2300 attendees and over 1200 clinical posters describing work in all types of skin diseases on display. Over 30 of the posters were specific to cutaneous lymphoma and represented work by institutions from around the world. Dr. Tom Kupper, of the Dana Farber Cancer Institute, presented Skin Homing T-cells: 2013 at the BISD Global Investigative Dermatology Showcase satellite meeting. Dr. Kupper is considered an international expert on the treatment and research of cutaneous lymphoma and other rare skin cancers. As the current President of the Society of Investigative Dermatology, Dr. Kupper’s work in cutaneous lymphoma was highlighted over the course of this scientific meeting. Dr. Rachel Clark, an associate professor of dermatology at Harvard Medical School, was one of three “rising star” lecturers at the opening ceremonies. Additionally, Dr. Sima Rozeta, our Young Investigator award winner, presented her research in epigenetic therapy in cutaneous T-cell lymphomas at a satellite session on Tuesday. Epigenetic therapy targets proteins and pathways that regulate gene expression. Other presentations about cutaneous lymphoma were offered throughout the course of the 4-day meeting. In addition to attending the lectures, the Foundation participated as part of Coalition of Skin Diseases exhibit and provided our materials. By the end of the meeting, all our literature was gone! It is one more way that the CLF works to educate the clinical community about cutaneous lymphoma. While at the exhibit, we had several physicians from other countries stop by and inquire about connecting with the Foundation and receiving literature for their patients. Lecture Highlights: Skin Homing T-Cells • Skin actually contains a large number of exclusive memory T-cells. Memory T-cells are fully matured T-lymphocytes that recognize specific targets (and have an immunologic memory for its target). • Using gene sequencing has shown that there is a great diversity of memory T-cells in normal skin, and these cells accumulate over time and learn over time how to respond to challenges from outside the body. Similar cells are found in the lung but are different than skin T-cells. For example, influenza T-cells reside in the lungs and are not found in the skin. Interesting to note is that there are 10 billion T-cells in the lungs, 10 billion T-cells in the blood and 20 billion T-cells in the skin. • CLA positive CD4 and CD8 are hard-wired to produce cytokines which respond to challenges from outside the body. • Per every 20 billion T-cells in the skin, there are one million T-cells with unique pheonotypes. These are different than the T-cells found in the blood. Learning about how these memory T-cells function and learn over time may provide researchers and clinicians with critical information about the T-cells’ behavior in cutaneous T-cell lymphoma. There is much more to learn, and we will be following this research by the team at the Dana Farber Cancer Institute. American Society for Clinical Oncology (ASCO) - May 31-June 3, 2013 The American Society for Clinical Oncology’s (ASCO) annual meeting provides medical professionals,exhibitors, patient advocacy groups and others two days of in-depth analysis and discussion of the top scientific abstracts from a variety of oncology specialties. The CLF’s Kira Mann and Susan Thornton attended this large medical oncology meeting held in Chicago. Because of its size, the ASCO meeting tends to focus on the larger, more prevalent forms of cancer like breast, prostate, and melanoma. Although there were no presentations specific to cutaneous lymphoma, it did provide the Foundation an opportunity to participate in many special sessions offered by our corporate sponsors and patient advocate partners. While attending the Patient Partner’s meeting, we learned about an exciting new grant opportunity from Celgene, which the CLF plans to apply for. The keynote presentation was given by Jeffrey Bauer, Ph.D., a Health Futurist and Medical Economist, who discussed the future of healthcare and where it may be going. At another event, we were updated on the rollout of Health Insurance Exchanges* that will become available through the Affordable Care Act (ACA) in October. There are still many unknowns related to the ACA, and each State will be different in how it decides to implement their Exchange. However, out of the interactive discussion, a volunteer workgroup was formed with participants from many patient advocate organizations to create a decision ASCO...continued on page 11 10 Forum, Summer 2013 How to Live a Life of Joy, continued who have suffered with the same or similar conditions. Be BOLD! Ask for help and know that it is a sign of strength. Ask them about their journey, the wisdom they have accumulated along the way, and what has or has not worked for them. There are so many resources available to us, especially with the internet; it makes research so easy. Make sure that you deal with reputable sites and positive people. But most of all, know that you are not alone. Teamwork: To live successfully with chronic disease, you need the right team. Look for opportunities to interact with practitioners, patients, and patient advocates. Each relationship is another piece of the puzzle. Finding a kind, empathetic physician/nurse team that cares about positive patient outcomes is a critical piece of your treatment process. Remember, you are in “partnership” with your physician and nurse. The three of you are responsible for getting you the tools and information you need to properly manage your disease. I have to teach ourselves how to accept what we cannot change. Anxiety and fear will come, but we don’t have to let fear win. Believing in ourselves and having the confidence to carry on in life, regardless of our challenges, makes us stronger. Once you get the right team in place, you have to keep at it! This is a constant struggle for all of us. It is easy to get depressed, fearful, negative, and to sometimes feel victimized by our disease. But we need to get inspired and get back on track. Being your own advocate gives you decided a personal power! long time ago I decided a long time ago that my disease would not steal my joy! It is difficult to that my disease persevere alone, which is why the right team is so important. My team is BIG! would not steal I have family, friends and a group of healthcare providers dedicated to helping my joy! me thrive. Refuse to be a victim and keep moving forward. Sometimes people get stuck with the question, “why” did this happen to me verses asking “how.” How can I use my disease to help myself and others? “How” is so much more empowering than “why!” Perseverance: The definition of perseverance is to persist in any undertaking, maintaining a purpose in spite of difficulty, obstacles, or discouragement; continue steadfastly. A positive mindset is essential; focus on the “opportunity” verses the obstacles. We have to navigate appropriately. If a ship or plane is off-course even two degrees, they can eventually end up on the other side of the world. We need constant course correction to keep ourselves focused. We Inspire yourself with a positive attitude! Fill your life with positive people and look for opportunities to help and inspire others. It takes your focus off of your condition and allows you to contribute what you’ve learned on your journey to countless others who may be suffering. Give yourself away unashamedly! Make your life a “silver box”…a gift to others. This will truly give you your best life! ASCO....continued tool for cancer patients who will be navigating the Exchange enrollment process. The Foundation is taking an active role in that workgroup. The group, spearheaded by the Cancer Support Community, held its first meeting on July 9th and will be working together through October to develop and publish the decision tool. Overall, it was a busy May and June for medical meetings, and the cutaneous lymphoma community’s voice was well represented. *From the The Center for Consumer Information & Insurance Oversight: The Affordable Care Act helps create a competitive private health insurance market through the creation of Health Insurance Marketplaces. These State-based, competitive marketplaces, which launch in 2014, will provide millions of Americans and small businesses with “one-stop shopping” for affordable coverage. For more information, visit www.healthcare. gov. Check out the latest news and information from the Cutaneous Lymphoma Foundation by liking us on Facebook! 11 NON-PROFIT US POSTAGE PAID BIRMINGHAM MI PERMIT NO 265 PO Box 374 Birmingham, MI 48012 TIME SENSITIVE MATERIALS ENCLOSED You too can make a difference. There are many ways to get involved with the Cutaneous Lymphoma Foundation.... Share your story Become an advocate Organize a fundraiser Make a gift Volunteer your time These are just a few of the many ways for you to join us in our mission to make sure that each person with cutaneous lymphoma gets the best possible care. For more information on how you can make a difference, contact Kira Mann, Director of Development and Marketing at [email protected] or 248.644.9014.
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