PDF - Cutaneous Lymphoma Foundation
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PDF - Cutaneous Lymphoma Foundation
Forum Cutaneous CutaneousLymphoma LymphomaFoundation: Foundation:Making Makingsure sureeach eachperson personwith withcutaneous cutaneouslymphoma lymphomagets getsthe thebest bestcare carepossible possible www.clfoundation.org 2014 Issue 2 Tips for Lesion Care INSIDE THIS ISSUE From the President and the Chief Executive Officer............................... 2 My Personal Journey: Oded Pollack......................................... 4 Fun in the Sun with Cutaneous Lymphoma................................................ 5 2-Day Patient Conference Update................................................ 6 Skin Care Solutions.................................8 My Personal Journey: Gail Baril...................................................9 Upcoming Events...............................10 You Can Make a Difference.............. 11 SID Annual Meeting Highlights .......12 Young Investigator Award..................13 Advocacy Highlights...........................14 New Treatment Guide Available.......16 For many individuals with cutaneous lymphoma, quality of life is directly related to the current condition of their skin. Daily routine often revolves around finding relief from itch or caring for lesions to prevent the development of infection. There are many ways that patients can improve their lives with simple at-home solutions; educating yourself about these tips can be extremely beneficial in improving your quality of life. In this issue, we are pleased to introduce contributing writer, Dr. Meredith Haab. Through providing hands-on care for her own mother, Gabrielle Schwarz Haab, Meredith gained insight into lesion care and seeks to share her knowledge with others in the hopes of improving patients’ quality of life. Encouraged by her mother, Meredith began the GSH Lesion Care Program with the Cutaneous Lymphoma Foundation in her mother’s memory. As a part of the program, Meredith will interview medical professionals concerning lesion care; her interview with Dr. Bizhan Micaily is highlighted in this issue. Dr. Haab’s interview with Dr. Micaily is an informal, interview-style piece focusing on lesion care. Highlights include some of Dr. Micaily’s tips for cleaning, dressing and caring for lesions, as well as information on treatments such as radiation, topical solutions and systematic pain management. Dr. Micaily’s work treating mycosis fungoides is highly specialized and focuses on the use of the electron beam radiation (targeted and total skin). Dr. Micaily is a highly sought-after physician and we are thrilled to have the chance to share his recommendations. 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. Bizhan Micaily, MD, FACR Associate Chairperson Department of Radiation Oncology, Temple University Radiation Treatment: • This disease is sensitive to radiation. • It responds to low doses. • The radiation must be tailored to the problem and the person. • The goal of radiation is: control of lesions (plaques) and ulcerative tumors, relief of pain, clean up the skin, and make the other cancer treatments (such as chemotherapy) more effective. • Radiation can be blocked to save a patient’s hair/mustache/beard. • Use radiation by an experienced Radiology Oncologist who knows this disease before it gets too bad. Topical Anesthetics: • Come in creams or gels. Use sparingly so as not to cause arrhythmia. Use every 4-6 hours as directed by your doctor. • Main objective with topical treatment of lesions: to avoid infection. Sudden Lesion Care..continued on page 11 Cutaneous Lymphoma Foundation From the President Issue 2, 2014 From the Chief Executive Officer In this edition of Forum, the theme is Quality of Life. This is a topic that quite frankly, does not receive the level of attention, that as a patient, I believe it deserves. In general terms, Quality of Life (QoL) can be defined as an individual’s perceived well-being or lack thereof and includes all emotional, social, and physical Christopher Shipp aspects of one’s life. Within the healthcare arena QoL specifically refers to how an individual’s well-being may be affected over time by a disease, disability, or disorder. Before I was diagnosed with mycosis fungoides, QoL was something I largely took for granted, rarely thought about, and if asked, probably would have said it was related to how much money a person had and where they lived. I was young, healthy, VERY LUCKY, and perhaps also a little naive. It was not until after being diagnosed with mycosis fungoides and going through two years of multiple treatment regimens, that I truly developed an understanding and appreciation for how one’s quality of life can be so dramatically altered regardless of financial stature, where you live, or really anything else for that matter. I did not tolerate well the systemic treatments I was prescribed. I was constantly sick and experienced significant weight loss. With the weight went my strength and stamina. At my lowest point, I couldn’t walk to my mailbox without having to take a break. Surprisingly however, I found the emotional and social components of my experience to be more deleterious to my quality of life than what I was going through physically. I felt as though I was broken and that everyone could see it. I had lesions on my face, head, and neck that caused me to feel self-conscious and embarrassed in public. Most of all, I hated seeing how my illness and everything that goes along with it was impacting my loved ones. By elevating the importance of Quality of Life measures in healthcare and for cutaneous lymphoma specifically, we can help to improve the overall quality of care and ensure that patients are treated as a “whole person” with all of the emotional AND physical help and support they need and deserve. I hope you enjoy this edition of Forum. Best, Susan Thornton Don’t you just love summer? It’s one of my favorite times of the year. Things slow down, kids are out of school and vacations are on the horizon. For us here at the CLF, summer is a quieter time with fewer events and programs on the schedule. It’s time to plan for the next year of fall, winter and spring programs and a time for the staff to catch our breath after the whirlwind of spring events. Speaking of spring events, we hosted our second annual 2-day patient conference in Kansas City. It was a wonderful weekend filled with terrific clinical information and updates as well as a variety of quality of life discussions ranging from skin care to navigating the financial aspects of healthcare to ways to manage the emotional roller coaster that we all sometimes feel we are on. There were great presentations by patients who were gracious enough to share their stories, “ah ha’s” and insights into how to live with and beyond cutaneous lymphoma. Although every live event we host is special because we get to connect with you, the 2-day conference gives us much more time to make connections and bring our community together in a unique way. Mark your calendar for next year’s program which will be held in California on June 27 and 28, 2015. We hope you can join us! This issue is great reading while you are sitting in your beach chair or lounging in your hammock this summer. It’s all about quality of life. One highlight of this issue is Dr. Akilov’s article about taking care of your skin. Great ideas about lotions, potions and other methods to care for your precious skin. Dr. Akilov presented live at the 2-day program in Kansas City and we took the opportunity to videotape his presentation. It will be up on the Online Learning Center soon. When it’s too hot to be outside and you are inside on your computer, check out the Online Learning Center and the new videos. A special thank you to everyone who took the time to answer our needs assessment survey this May. We are in the final year of our 3-year strategic plan and are using the feedback from that survey as part of our strategic planning process. The Board and staff kicked-off the process at the Board meeting in June and have begun creating a new 3-year plan that will go into effect July, 2016. We will be looking at using technology in new ways so we can engage with more of you more often and looking for ways to enhance our research initiatives. If you have ideas or recommendations on how we can serve you better, please let us know. Kick-back, relax and enjoy this issue. Have a great summer! 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. Check out the latest news and information from the Cutaneous Lymphoma Foundation by liking us on Facebook! Or on Twitter at #skinlymphoma BOARD OF DIRECTORS OFFICERS Christopher Shipp Marianne Tawa, MSN, RN, ANP Jeff Ward Laurel Carlson President Vice President Treasurer Secretary DIRECTORS Joseph Eischens Steven Horwitz, MD Brace Krag David Lamb Stuart Lessin, MD Lauren Pinter-Brown, MD Mike Silver Michael W. Young Director Director Director Director Director Director Director Director MEDICAL ADVISORY BOARD 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. 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 The Cutaneous Lymphoma Foundation’s patient educational newsletter, Forum, has been made possible thanks to the following generous supporters: 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 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 STAFF Hilary Hough Program Manager 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 2 3 Cutaneous Lymphoma Foundation Issue 2, 2014 My Personal Journey With Cutaneous Lymphoma Fun in the Sun With Cutaneous Lymphoma ! see the sun while being modest. Oded Pollack Gary Robinson Nomad I’m Oded, a 49-year-old male, I was born in Israel and have lived in the United States since 1985. I have been a devoted athlete (Ironman) and a vegetarian for most of my adult life. I considered myself a fit and healthy person and never fathomed that I would be diagnosed with cancer. I hope my story will help, offer courage to all of those with cancer and offer support to the family. In 2010, my wife and I became world travelers and nomads. In early 2013, we decided to spend time with my aging parents in Israel. We had plans to resume travel in South America in the summer. At the beginning of April 2013, I noticed the first nodule growing on the top of my head, which was easily visible as I am bald. Not long afterwards two more nodules developed on my chest and stomach area, two red patches on my upper back, and a larger nodule on my lower back growing increasingly faster. A total of six nodules appeared within a short period of time. The lower back nodule quickly turned into a purplish color and was the only one that was very itchy. Beginning of Medical Ordeal I waited a month thinking the nodule was an allergy or an insect bite, but eventually realized it was time to go see a dermatologist. It took the dermatologist literally two minutes before she scheduled a biopsy the following morning. This marked the beginning of my medical ordeal and our plans to continue our second leg of travel through South America was cancelled overnight. I had multiple blood tests including HIV, HTLV and Gene Arrangement. After a month I received a phone call that cancer was suspected and I was scheduled for a full body PET/CT. The scan showed no evidence of cancer outside of the tumor on my lower back. Waiting for the results of every test was extremely stressful for my wife and I, especially when some results took long periods of time. In a strange symbolic way, on the morning of July 4, 2013 I attended a medical forum and I was informed that I have cutaneous lymphoma, more specifically suspected to be mycosis fungoides. I was stunned! It was a sad day for both me and my wife. 4 Salt Lake City, UT I had two sets of radiation directly on the tumor on my lower back and the nodule on my stomach. All of my blood tests showed no signs of Sézary Syndrome. I started managing a folder with my medical records from the various departments of dermatology, hematology and radiology. My main physician, a dermatologist, prescribed PUVA therapy combined with Acitretin 25mg three times a week. Feeling Like a Prisoner The entire time I have felt fine physically and continued my normal active life of swimming, cycling and drumming in a couple of bands. I was told I have stage 2B and will need PUVA treatment for the rest of my life. I was surprised and could not accept the fact that I will not be able to travel - I felt like a prisoner. I researched about the notorious difficulty of the diagnosis and I decided to seek a second opinion three months after I started treatment. I found a meticulous, attentive and caring new doctor, Ilan Goldberg, a head of dermatology at the Cutaneous Lymphoma unit in Tel Aviv medical center. He evaluated my pathology and requested further testing, which included additional Gene Arrangements and a bone marrow biopsy. The team of doctors indicated I have Pleomorphic Small Medium T-Cell Lymphoma CD4 Positive. A definitive diagnosis is very difficult and the doctors indicated that my results could not rule out a very rare diagnosis of MFTumor Demblee, or CTCL unspecified. Determining Life’s Direction All clinical symptoms of the tumor and nodules vanished and all tests showed no systemic involvement. Finally a new set of skin biopsies was taken directly from four different prior infected areas. This was the most stressful of all tests, as this would determine the direction of my life - to travel or settle down. Well, I am ecstatic to share I am back on the road with my backpack! I am in remission! I encourage everyone who finds themselves one day dealing with a strange and difficult to diagnose skin disease to stay informed, join a support group, obtain second or even third opinions. Most of all, stay positive and hopeful. set of circumstances. It is a beautiful summer morning as Jennifer stands at the window gazing out at the nearby beach. She is thinking about the day ahead and what she will wear. Although she looks forward to fun in the sun, she has a special For the past several months, Jennifer has been receiving ultraviolet light (UVB) treatment. Her red skin patches caused by cutaneous T-cell lymphoma (CTCL) are barely visible now. She looks forward to a reduced treatment schedule as the patches disappear completely. In the meantime, a day on the beach is pretty tempting. Suddenly, she hears her doctor’s voice repeating his recommendation in her head – “We are using a control portion of UVB rays to treat your skin, so don’t get more outside of the treatment. Be sure to cover up and apply sunscreen when out in the sun.” She looks at her clothing choices laid out on the bed. • • • Her favorite swimsuit. A pair of long pants, a long sleeved cotton shirt (best at blocking the sun’s rays) and a broad brimmed hat to keep the sun off her face and neck. A pair of shorts and a t-shirt. After some thought, she grabs the shorts and t-shirt to get ready. She will spend the sunny part of the day inside at the mall and then visit the beach to see the sunset. Further down the beach, Jonathan is also looking out at the beautiful day and making plans. After those 10 minutes, he has a choice. He can apply a generous application of SPF 30 sunscreen for the rest of the day and seek out shade as often as possible, or he can cover up with long pants and shirt, topped off with a hat. He decides he could use some exercise. He quickly puts on the clothing and his favorite broad brim hat and heads out for a hike down the coast to explore the area. Tips for Sun Exposure What will your summer look like? How will you deal with sun exposure? It depends on your situation and the advice of your doctor. Excessive sun exposure is not wise. Be sure to cover up when out in the sun. Use a proper sunscreen with at least a SPF 30 rating. Avoid the peak sun between 11 am and 3 pm if possible. Find shade when sitting outside. It is important to avoid sunburn. Wear clothing capable of protecting your skin from the sun. Use a broad brim hat to protect your face and neck from the sun. Also protect your eyes with proper sunglasses, especially if your treatment includes psoralen. Some limited sun exposure may be good to help maintain a remission during the summer. Check with your doctor for recommended frequency. Consider a tan-through swimsuit to allow exposure to areas that should not be exposed in public settings. Men should consider a two-layer approach – a tan through racer style swimsuit to provide support and then the desired length tan through swim shorts over the top. Enjoy the summer and have fun. If people ask why you are all covered up. Just tell them, “I’ve made an agreement with Mr. Sun that I would not compete with him for attention during the day.” He has completed his UVB treatment and is now in a remission stage. His doctor’s advice is to get some limited sun a few times a week. He is encouraged to enjoy about 10 minutes during the middle of the day when the UVB rays are present (between about 11 am and 3 pm). He needs to apply lotion to his skin, just like his treatments, to maximize the penetration of the rays during the 10 minutes. In this environment, he will not be able to expose “all of him” as he did in the light bay during treatments. But he has a solution for that. He found a tan-through swimsuit online to allow exposure to those areas that don’t This article is informative only. Always consult with your doctor or health care specialist for medical advice. 5 Cutaneous Lymphoma Foundation 2-Day Patient Conference 2014 Issue 2, 2014 Dr. Stuart Lessin Dr. Daniel Aires The Cutaneous Lymphoma Foundation’s second annual 2-Day Patient Conference took place in Kansas City, Missouri at the end of June. Attendees traveled from across the United States, as well as Canada, to hear a wealth of medical professionals, human service specialists, patients and caregivers all discuss cutaneous lymphoma. The 2014 Cocktail Reception and Silent Auction was another success, raising nearly $7,000 to support CLF programs. Auction items ranged from Star Wars themed baking supplies, to artwork, as well as an African Safari. Thank you to everyone who generously donated auction items and to everyone who participated in the bidding. Topics ranged from methods of diagnosis and treatment, to research, the practicalities of insurance and how to build your healthcare team. Dr. Stephen Horwitz Gary Robinson Recognized at this year’s cocktail reception for her ten years of service with CLF, was staff member Holly Priebe (right) pictured here with CLF Board Member, Laurel Carlson. Holly serves as CLF’s Chief Operating and Financial Officer. Dr. Christiane Querfeld Dr. Sunil Abhyanker Interspersed with the clinical and professional speakers were the personal stories of courage, humor and hope from those living with cutaneous lymphoma. Sunday’s program began and closed with the inspirational stories of author Donna Hussey and Danna Wessels. Both women shared their experience living with cutaneous lymphoma and having stem cell transplants. Sunday also included sessions on the practicalities of living with cutaneous lymphoma including skin care, insurance coverage and dealing with stress. William Fowler Dr. Lauren Pinter-Brown Dr. Oleg Akilov Marianne Tawa, RN,MSN, ANP Dr. Garth Fraga 6 Donna Hussey Brendan Bietry, Patient Advocate Foundation Danna Wessels The 2-day conference is also a social gathering. There were many opportunities for attendees to meet, exchange stories and develop friendships that will last well beyond the two days. Leora Lowenthal, MSW 7 Cutaneous Lymphoma Foundation Issue 2, 2014 Skin Care Solutions Oleg Akilov, MD, PhD Department of Dermatology, University of Pittsburgh My Personal Journey With Cutaneous Lymphoma be changed and/or added into your bathing routine to keep you comfortable and as irritant-free as possible. Below are some important factors to consider in regards to bathing: • • Skin care is an important topic for every individual, but for cutaneous lymphoma patients, skin care can be the key to greatly improving your quality of life. By educating yourself about your skin, there are many things that you can do to keep your skin moisturized, soft and comfortable. Skin is covered with a thin layer of oil that serves as a protective agent and seals in water, keeping skin moisturized. When this layer is removed, or for patients who do not produce enough oil, skin will quickly dry out leading to increased discomfort, dryness and redness. By keeping the skin hydrated and maintaining proper oil content under the surface, it is often possible to prevent or improve rashes. General Tips Here are a few general tips to keep in mind at home; keeping skin properly hydrated will help to improve your daily life: • • • It is important to maintain a warm temperature and not allow your skin to become too cold; skin will dry out faster in cooler temperatures. Humidifiers or flat pans of water on radiators are also helpful to maintain moisture in your home, especially the bedroom as proper sleeping temperatures are very important to avoid sweating or extreme cold. When selecting clothing to keep skin comfortable, opt for fabrics made of cotton and/or cotton-synthetic blends; wool and pure synthetic fabrics, while warm, can be irritating and abrasive to the skin. Looserfitting garments are also optimal as tight, close-fitting clothes may agitate skin. Starch should also be avoided, especially in bed sheets. Laundry detergent can affect your clothing and thus the sensitivity of skin as well. Detergents should be unscented and free of bleach. Fabric softeners and dryer sheets should be avoided as well. Tips for Bathing Bathing is a topic perhaps not widely discussed, but is extremely important in skin care. Many simple things can 8 • • Water temperature is important when bathing – water should be kept lukewarm, not hot. Bathing for extended periods of time is also not recommended as extensive exposure to water will ultimately dry the skin. Soap should be used sparingly and it is important to avoid lathering areas that may already be dry or irritated. Mild, unscented soaps are gentle and optimal; avoid perfumes and dyes in soaps. Brands like Dove Sensitive Skin, Cetaphil, and California Baby are great options. The drying process is equally important and bathroom temperatures must remain cool and as steam-free as possible. Pat yourself dry (do not rub) with a soft, dry towel; you may chose to dry off in another room if the bathroom has become damp or steamy. After skin has been dried but is still damp, apply a moisturizer/emollient to seal in moisture. Following the bathing process, moisturizing is key in keeping skin comfortable. By understanding the three basic types of moisturizers, you will be able to select the right options for your skin: • • • The first type, occlusives prevent the evaporation of water from the skin. Examples include petroleum jelly, mineral oil, lanolin and beeswax. The next type, humectants contain water-attracting molecules which grab and hold water in. Examples include glycerin, propylene glycol, sorbitol and panthenol. Lastly, emollients sink into the skin and bind skin cells back together. Examples are silicones, jojaba oil and propylene glycol. While everyone’s skin is different, as a general rule, it is best to apply a humectant-rich moisturizer immediately after showering when skin is still damp. Next, apply an emollient-based moisturizer, and seal everything in with an occlusive oil. With the proper care, skin can often be improved in many cutaneous lymphoma patients. It is important to note that products do not always have to be the most expensive. Quality ingredients are much more important than cost. By knowing the basics about skin care products, you will hopefully be able to improve your quality of life and live your best life possible. Gail Baril Los Angeles, CA When asked how cancer changed her life, Gail Baril replies with “It hasn’t, I don’t even feel like I have cancer.” Gail’s story is of a woman full of enthusiasm, positivity and life. Gail Baril was born in 1942 and raised in Miami Beach, Florida. After marrying her husband in 1965, the couple lived in Mexico City until they eventually relocated to Los Angeles in 1973 where Gail currently resides. Gail baffled local doctors for years with her condition. After undergoing extensive testing, Gail was misdiagnosed on a number of occasions; doctors came up with dermatitis, eczema and even Lupus. Frustration set in as a number of medications failed to improve her health. It was not until Gail met Dr. Howard Maibach one summer in Aspen, Colorado that things began to look up. After evaluating her condition, Dr. Maibach insisted upon Gail coming to San Francisco to set her up with the UCSF dermatological department; after a series of biopsies, Gail was ultimately diagnosed in December of 2009 with Stage 1A mycosis fungoides. A perfect representation of Gail is perhaps what she has chosen to do every year for her birthday: give back to others. On Gail’s 70th Birthday, her mother gave her a party; instead of asking for gifts, Gail requested donations be made to the Cutaneous Lymphoma Foundation. Through the generosity of Gail’s loved ones, they were able to give over $7,000 to help others on a journey similar to her own. Last August Gail decided to coordinate a “Birthday bridge luncheon” which included 24 of her girlfriends. Along with her friends and family, Gail hopes to host an annual luncheon to continue the tradition of giving back. Gail’s outlook on life makes her a joy to be around – her cheerful demeanor and positive outlook on life is contagious. Not many people say that they are “lucky” to have cancer, but Gail feels that she is lucky because she doesn’t even know that she has it. She has never asked “why me?” but instead has chosen to be grateful for the care that she receives from her doctors. She lives by the mantra that “I will die with this cancer, not from it.” Didn’t make it to our annual 2-Day Patient Conference? Shortly (6 weeks) after being diagnosed, Gail, like any other new patient had a lot of unanswered questions. Coincidentally, the Cutaneous Lymphoma Foundation was holding a Patient Educational Forum in Los Angeles in January 2010; it was with a twist of fate that Gail connected with the Foundation and was able to network with other patients, hear about available resources and gather valuable information from doctors specializing in CTCL. Thankful for their efforts, Gail plans to attend the next conference hosted by the Foundation when they return to the Los Angeles area. Gail’s journey with mycosis fungoides has included UVB phototherapy in conjunction with Targretin. Upon her diagnosis, Gail was sent to see Dr. Lauren Pinter-Brown with UCLA. The treatments were effective; Gail was receiving phototherapy three times a week for about a year which then tapered down to once every three weeks. Gail’s outlook on her therapy has always been positive – although the treatments were inconvenient, she reiterates that she “doesn’t even feel like she has cancer.” Plan now to join us in California in 2015! Saturday, June 27, 2015 and Sunday, June 28, 2015 9 Cutaneous Lymphoma Foundation Issue 2, 2014 Cutaneous Lymphoma Patient Educational Opportunities The Cutaneous Lymphoma Foundation offers free Patient Educational Forums throughout North America providing an opportunity to: • Receive the latest 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. • Q & A sessions - probably the most popular portion of the day. Have questions about the different types of cutaneous lymphoma, treatments, or daily living? The Q & A sessions provide you an opportunity to ask 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 what you are going through. • Learn about available resources for treatment and support. We hope to see you at an event soon! August 23: Portland, OR T-Cell Lymphoma Patient Educational Forum in collaboration with the T-Cell Leukemia Lymphoma Foundation September 13: Montreal, QC, Canada Cutaneous Lymphoma Foundation Patient Educational Forum September 20: Philadelphia, PA Lymphoma Workshop in collaboration with the Lymphoma Research Foundation September 27: Milwaukee, WI Cutaneous Lymphoma Foundation Patient Educational Forum Tips for Lesion Care, continued progress of minimal plaques/lesions doesn’t always mean progression of CTCL: It could be an infection. Get treatment from your Doctor right away. Always be aware of infection or Mersa in areas of ulcerative plaques or tumors. Systemic Pain Management: • May mean the use of narcotics, starting with a low dose as prescribed by your physician. May be pills or patches for systemic absorption. • For pain, hook up with a pain management team/clinic through your hospital and/or physician. • Lesions often present on buttocks and groin (and under arms and breasts, on soles of feet). Sit on a donut to avoid direct pressure on lesion. Lesion Care Materials: • Telfa non-adherent pads- come in varying sizes. You can always cut the larger ones down to the size you need. • Tape – Use sparingly on skin. Silk tape may work better than the paper tape. You will have to try different tapes to find which one holds the Telfa pad over the ointmented lesion the best without harming surrounding skin. • Elastinet Tubular Elastic Net Dressing Retainer- these come in varying sizes from torso to arm and leg widths. Be sure not to hold bandages on with a tubular net that’s too tight and cuts off circulation. • • Silver Sulfadiazine Cream, Mupirocin Cream - use as directed by your doctor. Aids in prevention of infection. If a lesion becomes infected, do not wait – go right to your dermatologist/oncologist. Lidocaine Hydrochloride Jelly, use as directed by your doctor. Aids in topical pain management of lesion care however it must be used sparingly so as not to cause arrhythmia. Lesions: I. Patch – not elevated. Level and at skin level. II. Plaque – elevated. More cells. III. Tumor – raised. Thick. Plaques and tumors may become ulcerative. It’s important to keep them clean to prevent infection. To keep lesions clean: Use topical anesthetic (as prescribed by your doctor) if needed, wait 5-10 minutes until numb, and then wash with soap and saline. Gently remove any old ointment or dead/ necrotic tissue, if possible. To dress lesions: After cleaning, apply a thin layer of ointment (as prescribed by your doctor) on lesion. For ulcerative lesions/plaques - cover lightly/gently with a non-stick/non adherent Telfa pad. For multiple lesions, Dr. Micaily recommends to avoid using tapes on the skin to hold the Telfa pads in place. Lesion Care..continued on page 15 The Cutaneous Lymphoma Foundation extends its thanks to the following generous supporters of our 2014 Patient Educational Forums: October 11: Denver, CO Cutaneous Lymphoma Foundation Patient Educational Forum October 24 -25: Manhattan Beach, CA North American Educational Forum on Lymphoma in collaboration with the Lymphoma Research Foundation This is not a free event. You Can Make A Difference Are you looking for a way to get involved and support the CLF in our mission? Host your own fundraiser and make a difference in the lives of those affected by cutaneous lymphoma. Whether you are interested in hosting an online or live event, the CLF can help make the fundraising process easier and support your efforts. With our new online tools, you can create your own personalized CLF online fundraising page and invite your friends, family and colleagues to join you in raising funds for the CLF. Looking for event ideas…big or small, there’s something you can do!! November 15: Fort Lauderdale, FL Cutaneous Lymphoma Foundation Patient Educational Forum For more information and to register for these events, visit www.clfoundation.org or call (248)644-9014 10 • • • • • • Walk-a-thon Golf Outing Themed parties Bake sale Dinner party Special dress day • • • • • • Silent Auction event Car wash Karaoke night Gala Dance-a-thon Birthday or anniversary celebration For more information on how you can host a fundraising event, please contact Kira Mann, Director of Development and Marketing at [email protected] or (248) 797-2399. 11 Cutaneous Lymphoma Foundation Issue 2, 2014 Highlights from the Society For Investigative Dermatology Annual Meeting The Society for Investigative Dermatology (SID) Annual Meeting is a scientific program incorporating research from multiple specialties and disciplines. It offers a broad array of special tracks, symposia, and networking sessions. This year’s annual meeting was held in Albuquerque, New Mexico, in May. Cutaneous Lymphoma Foundation’s CEO Susan Thornton attended the annual meeting to learn about the advances in cutaneous lymphoma research and to raise awareness of the disease among the attending medical professionals. The following are her notes from the sessions. Research Presentations Ten individual scientific research summaries were presented reflecting everything from bench to clinical research. In addition to the ten presentations, there were 27 posters displayed specifically related to research in cutaneous lymphoma. The exciting news is that with new diagnostic technologies and research into new treatment approaches, investigators are continuing to learn more about the underlying biology of cutaneous lymphomas which may result in finding specific biomarkers for the variations of the disease. Biomarkers can provide insights into the potential for disease progression in an individual as well as help in the development of targeted therapies for specific markers and hopefully one day a cure. • • Highlights from the ten presentations: • Promising clinical activity hs been seen in a novel, first-in-class topical HDAC inhibitor designed to maximize activity in the skin but limit systemic exposure as it is delivered topically versus systemically. New clinical trials will be opening in the future by TetraLogic who will be working with investigators to continue the studies to determine the long-term outcomes of this new topical formulation (SHP-141 is the current product name). • Results of a phase 1 trial of Resiquimod gel in patients with stage IA-IIA who had failed an average of 4 previous treatments, showed that this topical agent induces systemic immune activity and is highly effective in the treatment of resistant CTCL lesions, especially in patients with folliculotropic MF. Translational research is being done in the laboratory to determine if there was greater cancer cell death using enhanced methotrexate mediated epigenetic manipulation (ePDT) versus the standard photodynamic therapy. The conclusion is that ePDT is superior to conventional PDT by allowing greater activation for extrinsic apoptosis, which results in enhanced tumor cell death. Data provides a rationale for clinical trials of ePDT for CTCL. Cancer cell metabolism is characterized by a high glycolytic rate under normal conditions, a • • 12 • phenomenon known as the Warburg effect. The mTOR (mammalian target of rapamycin) signaling pathway is a master regulator of cancer cell proliferation and metabolism. Using a mouse model, the research project demonstrated the therapeutic anti-tumor effect of topical rapamycin in a murine model of CTCL characterized by inhibition of aerobic glycolysis, which counteracts the Warburg effect of the lymphoma cells. IL-10 is a potent immunosuppressive cytokine that has been reported to be in higher levels in the skin of patients with advanced stages of CTCL. It is unclear, however, if IL-10 is a marker of advanced disease or if it is required for the production of tumors. A study showed that IL-10 was significantly increased in the skin of CTCL patients compared to normal skin and significantly higher in plaque stage disease compared to patch stage disease. The patient data confirms that IL-10 is up-regulated in the skin of advanced CTCL patients and the mouse models showed that IL-10 is required for maximal tumor development. This data supports the potential use of anti-IL-10 as therapy for advanced CTCL. Higher levels of IL-10 is associated with mycosis fungoides (MF) progression. IL-10 is an immunosuppressive cytokine and could be a potential biomarker for disease progression. Mycosis fungoides and Sézary Syndrome are clonal T-cell lymphomas involving the skin. The diagnosis is often difficult because of significant clinical and histopathologic overlap with inflammatory disease or other T-cell lymphomas. Suspected peripheral blood involved by Sézary cells is routinely evaluated by flow cytometry and/or T-cell receptor (TCR) gene rearrangement assessed by polymerase chain reaction (PCR). In cases with blood involvement, establishment of the same clone in blood and skin is often essential for optimal interpretation and diagnosis. However, routine TCR/PCR may not identify the true clonal TCR gene rearrangement, especially in low burden disease. High throughput sequencing (HTS) is a technology that analyzes TCR gene rearrangement with real time high sensitivity. This study assessed the utility and performance of this emerging technology in the diagnostic setting. The results highlight the potential of TCR HTS and its clinical application to improve the diagnosis, staging and follow-up study of people with CTCL. MF and SS are two major forms of CTCL characterized by resistance to cell death. A central pathway for T-cell death is activation-induced cell death (AICD) which is triggered through the T-cell receptor (TCR). This results in up-regulation of Fas-ligand and through the Fas death receptor pathway. It is known that TCR signaling is defective in CTCL, but the underlying mechanism has not been apparent. These findings help explain the molecular pathogenesis of CTCL and provide a preclinical rationale for clinical trials. • • Cutaneous CD30+ lymphoproliferative disease (CD30+LPD) characterized by the presence of CD30+ anaplastic large T-cells, comprises the second most common group of cutaneous T-cell lymphomas (CTCL) However, little is known about the pathobiology of the CD30+ lymphoma cells, or the mechanisms of disease progression. These experiments define a novel pathway in malignant CD30+ T lymphocytes and indicate the potential of a therapeutic target for CD30+LPD. Lymphomatoid Papulosis (LyP) is a CD30+ lymphoproliferative disorder thought to represent an indolent, self-regressing form of CTCL. It is not clear why clonal T-cells are destroyed by the immune system in LyP but not in MF. Given the presence of neutrophils in LyP lesions and finding that IL-17 is down-regulated in MF, the hypothesis is that IL-17 production may be increased in LyP and may enhance immune detection. Direct examination of the phenotype and cytokine production by clonal cells in LyP is underway. • Highlights from the General Sessions and Posters 27 specific posters related to cutaneous lymphoma. Ten were highlighted at the International Society of Cutaneous Lymphoma (ISCL) meeting, two were presented within other sessions during the course of the conference. Highlights from two additional cutaneous lymphoma research presentations are as follows: • Impact of treatment for cutaneous lymphoma on persistent and difficult itch. IL-31 is a cytokine thought to be produced primarily by skin-homing cells and by clonal malignant T-cells. IL-31 has recently has been suggested as an important mediator of itch in atopic dermatitis and CTCL. Notably, higher IL-31 serum levels correlate with the degree of itch experienced. Data from the study exposed the relevance of blocking the IL-31 pathway for symptomatic relief of patients with difficult itch in CTCL and potentially other conditions. CTCL is a rare cancer with a documented incidence estimate at 4-8 cases per million individuals per year. Currently, the pathogenesis of CTCL remains only partially understood. Reports of incidence in married couples and families raise a possibility that there might be an important environmental trigger for this disease. However, to date no unequivocal geographic hotspots have been documented for this cancer. An analysis was done by region, zip code, age and ethnicity with the demographic data of 1047 patients from Texas who were seen in a CTCL clinic at MD Anderson Cancer Center during 2000-2012. In addition, de-identified data on CTCL incidence was requested from the Texas Cancer Registry database between 1995-2010. Both data sets were cross-analyzed and compared. The analysis documented geographic clustering of patients in three communities within the Houston metropolitan area, in which the CTCL incidence rates were 10-50 times higher than the expected population rate. Moreover, analysis of incidence rates in these communities over time suggests a significant increase in the disease after 2005. The data results from the Texas Cancer Registry database defined the CTCL population rate for the state to be 5.57 cases per million per year. The TCR database confirmed the above findings and highlighted four additional geographic hotspots for CTCL within the state of Texas, but outside of the Houston metropolitan area. Identification of geographic clustering for CTCL argues for existence of yet unknown external causes in triggering this rare cancer. In addition, six cold spots were highlighted, two cold spots were in dry areas of Texas pointing to the possibilities that there is less CTCL in dry arid areas. More analysis is needed across the country to identify other hot and cold spots to determine any potential correlation between the geographic locations and CTCL incidence. Young Investigator Award Presented at SID The Cutaneous Lymphoma Foundation was pleased to announce that Filiberto Cedeno Laurent, MD, PhD, was the recipient of its Young Investigator Award (YIA) travel grant to the Society of Investigative Dermatology Annual Meeting. Dr. Laurent’s research focuses on the reduction of IL-31 expression to suppress pruritus (itch) in cutaneous T-cell lymphoma. “We are thrilled to support Dr. Laurent in his efforts to better understand itch in cutaneous lymphomas,” said Susan Thornton, Chief Executive Officer, Cutaneous Lymphoma Foundation. “Itch is often one of the most debilitating symptoms for patients suffering from this rare disease, and one of the most difficult for researchers to understand. His findings could potentially change the lives of thousands of patients impacted by itch, not only with cutaneous lymphoma, but other diseases as well.” Dr. Laurent is currently a first year resident and cutaneous oncology fellow at the University of Pennsylvania. Cutaneous Lymphoma Foundation CEO, Susan Thornton with YIA recipient, Filberto Cedeno Laurent, MD, PhD. 13 Cutaneous Lymphoma Foundation Issue 2, 2014 Advocacy Highlights Annual Capitol Hill Briefing - National Patient Advocate Foundation, April 30, Washington, DC The briefing held for congressional representatives highlighted the impact of medical debt, medical bankruptcy and the impact on people in the US who face these challenges due to a medical crisis. The call to legislators was for legislation to modify the bankruptcy code to reflect medical debt as a separate type of debt. Medical expenses contribute to 62% of bankruptcy cases in the United States, while one out of every five American families will struggle to pay a medical debt this year.* Medical debt is a large and widespread problem in the United States, affecting both the insured and uninsured. The message to legislators was that medical expense-related debt is not defined or given any specialized treatment in the United States Bankruptcy code. Today it is not possible for a patient to file for “medical expense-related” bankruptcy and this can add to the trauma already suffered by people trying to deal with a health challenge. Legislation that appropriately addresses the unique and unpredictable nature of medical debt is critically needed to provide protections for those patients already overwhelmed with medical debt as well as for future patients. See NPAF infographic on their website (www.npaf.org) for additional statistics around America’s medical debt crisis. *David U. Hammelstein, MD, Deborah Thorne, PhD, Elizabeth Waren, JD, Steffie Woodlhandler, MD, MPH. “Medical Bankruptcy in the United States, 2007: Results of a National Study.” American Journal of Medicine, 2009. http://www.pnhp.org/new_bankruptcy_study/ Bankruptcy-2009.pdf Science and Progress at the FDA: A Congressional Briefing on the Progress of the FDA’s Breakthrough Therapies Program - May 6, Washington, DC David Lamb, CTCL patient and CLF Board member, attended the panel on Science and Progress at the FDA, sponsored by Friends of Cancer Research, on Capital Hill. The theme was how to get new drugs to patients faster with more efficiency. FDA officials and others agreed progress has been made. The vehicle for the progress seems to be the Breakthrough Therapy Act, which was signed into law in July, 2012 with bipartisan support and was included as an 14 amendment to the FDA’s Safety and Innovation Act. A new drug may be designated as a breakthrough therapy if it is intended to treat a serious or life-threatening disease and preliminary clinical evidence provides a substantial improvement over existing therapies. Once a breakthrough therapy designation is granted, the FDA and drug sponsor work together to determine the most efficient path forward. Additional details from the briefing can be found on the Friends of Cancer Research’s website: http://www.focr.org/events/ science-and-progress-fdafriends-cancer-researchcongressional-briefingprogress-fdas Spring 2014 Policy Consortium - National Patient Advocate Foundation, May 21, Washington, DC End-of-Life Care: Confronting Legal, Ethical and Financial Challenges The theme of this Policy Consortium discussed a delicate and many times difficult topic, end-of-life care. In attendance were members of the US Congress, current and former officials of the Centers for Medicare and Medicaid Services, along with representatives from the insurance, biopharmaceutical, academic and clinical provider organizations. The goal of this Consortium was to expand the discussion and commitment the development and enactment of policies to enhance end-of-life care. The panel discussions centered around bringing this conversation to people earlier in the healthcare cycle before the endof-life crisis hits and thinking outside of the “healthcare” silo when looking at solutions to the high cost of care at the end-of-life, the psychosocial and financial impact on patients and their families. The CLF was one of many patient organizations represented and actively participated in the panel discussions providing the perspective of the cutaneous lymphoma community. National Leadership Summit on 340B - June 10, 2014, Washington, DC The CLF’s CEO, Susan Thornton, was invited to participate in this inaugural summit as one of three patient organization delegates among a total of 33 esteemed leaders from provider groups, academia, industry, think tanks, analysts and other policy experts. The 340B Drug Pricing Program requires drug manufacturers to provide outpatient drugs to eligible health care organizations/covered entities at significantly reduced prices, however these price reductions don’t always trickle down to the patient. The federal policy dialogue on 340B has been heating up over the last few months, particularly in anticipation of the forthcoming Health Resources and Services Administration (HRSA) comprehensive “megarule”, which may be released in late June. The meeting highlighted emerging evidence on various aspects of the 340B discount drug program and the program’s full impact on health care delivery systems. A presentation by Krista M. Pedley, the Director of the Office of Pharmacy Affairs for HRSA provided an update on how the program can be better managed and regulated. Throughout the day there was active discussion among the various delegates which invited multiple points of view on key issues impacting the 340B program and elicited recommendations for action from among the various perspectives represented. This was the first of what the organizers hope will be additional discussions related to the impact of this policy on health care provided in the US. Although one small aspect of the health care delivery system, it could be one that brings about new solutions proposed by a multi-stakeholder group that results in a positive outcome for everyone. The CLF was honored to provide a patient perspective into the discussion. For additional information about the 340B drug discount program can be found in: HealthAffairs Blog - “The Coming Storm Over the 340B RX Drug Discount Program” by Billy Wynne, May 6, 2014 CQ HealthBeat - “Court Decision Could Delay Release of 340B Drug Program Rule” by Kerry Young, CQ HealthBeat, May 27, 2014 The Wall Street Journal - “How ObamaCare Hurts Patients - The 340B program was meant to help about 90 hospitals buy drugs to treat the poor. Now 1,675 hospitals qualify.” by Scott Gottlieb, July 30, 2013 Tips for Lesion Care, continued Instead, he recommends the elastinet tubular netting. Be careful to use the correct size of tubular net so as to avoid cutting off circulation or putting too much pressure on the lesions. If you do use tape, silk tape seems to hold pads with ointments better than paper tape, but you’ll have to try tapes to find what works AND is most gentle on the skin. Use the tape sparingly, trying not to cover too much skin with it. If a bandage is stuck to a lesion: • Soak a clean white wash cloth or towel in warm water in the sink or in a plastic tub. • Lay the warm, wet cloth over the stuck bandage. • Let it sit for a while. Be sure the cloth is soaking wet • • • with warm water. You may need to repeat this several times. Remove the cloth and gently rub a loose edge of the pad/bandage back and forth, a little at a time, to gently lift it off the ulcerative lesion/plaque a little bit at a time. If it’s still stuck – DO NOT RIP THE BANDAGE OFF LIKE A BANDAID- Repeat the warm cloth soak until the bandage can be gently removed. Do lesion care dressing changes 1- 2 times each day or as recommended by your doctor. To Order Tubular Elastic Net Dressing Retainer: Brennen Medical, Inc. 1290 Hammond Rd. Saint Paul, Minnesota 55110 800-328-9105 This article is informative only. Always consult with your doctor or health care specialist for medical advice. 15 NON-PROFIT US POSTAGE PAID BIRMINGHAM MI PERMIT NO 265 PO Box 374 Birmingham, MI 48012 TIME SENSITIVE MATERIALS ENCLOSED New Treatment Guide Available We are excited to make available our new treatment guide, Understanding Treatment Options in Cutaneous Lymphoma. As a supplement to our Patient’s Guide to Understanding Cutaneous Lymphoma, the treatment guide provides an overview of current treatment options for cutaneous T-cell and B-cell lymphomas. We hope you find the treatment guide informative and and will help prepare you for discussions with your health care provider concerning the best treatment options for you. To Request Your Guide: Online: Visit www.clfoundation.org/TreatmentGuide to download the Treatment Guide and order copies. Call/Email: Contact us at 248.644.9014, ext. 1 or [email protected] to place your order.
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