Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible Forum www.clfoundation.org Summer 2007 Ask the Experts: Why do I Itch? From the Executive Director ........ 2 Democracy in Action ................... 3 “Ask the Expert” is a regular feature in Forum, where you can have your questions answered by an expert. This issue, questions are answered by Kelley Vidulich, MD and Participate in an Itch Study ......... 4 Madeleine Duvic, MD . Dr. Vidulich is Coping with CTCL: One Patient’s Philosophy ............. 5 a CTCL Fellow at MD Anderson Cancer Center CTCL-MF Online Support .............. 5 and has been working with Dr. Madeleine Free Information About Extracorporeal Photopheresis ..... 5 Duvic since July of 2006. She is a Coalition of Skin Diseases Advocates at the American Academy of Dermatology Annual Meeting ............................6 1999 graduate of the University of Florida, and attended the University of Miami School of Medicine in 2004. She studied pathology at the University of California at San Francisco, completed an internship in Cutaneous Lymphoma Treatment Options Presented at Dermatology Nurses’ Association Annual Meeting ....... 6 medicine at MacNeal Memorial in Chicago, and is interested in a career in dermatology or dermatopathology. Dr. Madeleine Cutaneous Lymphoma Patient Educational Opportunities ........... 7 Why do I itch? Itch, or pruritus, is the feeling that makes one want to scratch. Pruritus, a common distressing symptom in CTCL patients, may be unrelenting and may result in insomnia, apprehension, and despair. It is uncertain why people itch, but it is a complex process involving the stimulation of free nerve endings in the skin and processing of nerve signals in the brain. Chemicals may cause itch including histamine, serotonin, opioids, and cytokines. Pruritus can be found in many diseases of the skin such as cutaneous T-cell lymphoma (CTCL). In CTCL patients, itching may be worsened by staph aureus infections or colonization which can be improved by skin care and antibiotics. It can also be precipitated by cytokines released by the T-cells in the skin. Itching may also be a symptom of an internal condition (i.e. liver or kidney disease or diabetes), or may be associated with nervous system dysfunction. Duvic is Professor and Deputy Chair of the Department of Dermatology at the University of Texas MD Anderson Cancer Center. She graduated Magna Cum Laude from Rice University, and she completed residencies in Internal Medicine and Dermatology at Duke University. She resides in Houston with her two beautiful daughters and a loving husband. She has been a pioneer in cutaneous T-cell lymphoma research and sits on the Cutaneous Lymphoma Medical Advisory Board. What can I do to find some relief from my itch? Various treatments of pruritus exist depending on the cause or type of pruritus. In patients with CTCL, we take two approaches towards the management of pruritus: treatment of the underlying disease (light therapy, oral retinoids, photopheresis, etc.) and symptomatic treatment. Symptomatic treatment may provide earlier relief than treating the disease itself. Antihistamines block redness, heat, swelling, and resulting itchiness which “Itch” continues on page 4 Cutaneous Lymphoma Foundation Forum The newsletter of the Cutaneous Lymphoma Foundation ALL RIGHTS RESERVED DESIGNER & EDITORIAL DIRECTOR Amanda L. J. Kik 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. SCIENTIFIC 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. National Institutes of Health Robert Knobler, M.D. University of Vienna Thomas Kupper, M.D. Brigham and Women’s Hospital Liliane Laroche, M.D. University of Paris Stuart Lessin, M.D. Fox Chase Cancer Center Sue McCann, MSN, RN University of Pittsburgh Medical Center Lauren Pinter-Brown, M.D. UCLA Medical Center Porcu Pierluigi, M.D. Ohio Sate University David Ramsay, M.D. New York University Alain Rook, M.D. University of Pennsylvania Steven T. Rosen, M.D. Northwestern University Marianne Tawa, MSN, RN, ANP Dana Farber Cancer Institute, Boston 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 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. Because each person’s body and response to treatment is different, no individual should indulge in self-diagnosis or embark upon any course of medical treatment that is described in Forum without first consulting with his or her physician. Cutaneous Lymphoma Foundation is not responsible for the medical care or treatment of any individual. 2 From the Executive Director I was recently invited to speak about CTCL from a patient’s prospective at a Symposium on Cutaneous Lymphoma at Moffitt Cancer Center in Tampa, Florida. The meeting ended too late for me to catch the last plane out to Detroit, and I had to spend the night and fly out early Sunday morning. At least the weather was nice and I was able to get in a long walk. As I was walking and feeling sorry for myself for not being home on the weekend, it dawned on me that I was not the only one who gave up their Saturday to learn and share our knowledge about CTCL. This was a group of dermatologists, oncologists, radiation oncologists, pathologists, nurses and pharmaceutical representatives who were very interested and excited about CTCL. They kept talking about CTCL on the breaks and during lunch. I have seen this over and over again at the medical meetings I attend. Here are some more examples of outstanding physicians dedication to their patients: At a late dinner, one Friday night at a medical meeting, Dr. Stuart Lessin excused himself to call a patient to give him test results so he wouldn’t have to worry over the weekend. This week, Dr. Youn Kim emailed me to say she would take a late flight back from a New York speaking engagement on a Friday night so she could speak at one of our educational forums in San Francisco on Saturday morning. When one of our listserv members was having some unusual symptoms, Dr. Lauren Pinter-Brown gave me information so I could get back to the member to get him help that literally saved his life. All of the physicians that volunteer their time to speak at our educational forums take the time to put together presentations and spend time away from their families on a weekend because they are dedicated to their patients. We only see our physicians in the office, but we don’t see all the time they spend in research, clinical trials and medical meetings. All of these things affect us indirectly. Sometimes we get frustrated by our physicians when they only spend a few minutes with us, but there is much more time they put in that we don’t see. It is all necessary to be able to give us the diagnosis and ongoing care we need. I know that in the past when I have been frustrated about my disease that I have been cranky in my doctor’s office. We have Mother’s Day, Father’s Day, Secretary’s Day—maybe we should celebrate Doctor’s Day. Forum, Summer 2007 Democracy in Action by Rick Megargell, Secretary, Cutaneous Lymphoma Foundation Board of Directors M arch 27th was designated 2007 Skin Disease Research Day in Washington, DC. This event was sponsored by the American Academy of Dermatology Association, the Coalition of Skin Diseases and the Society for Investigative Dermatology. Your Foundation was represented by Judy Jones, Amanda Kik, Claudia Day and me. The purpose of this event was for representatives of skin disease and research organizations to educate their elected officials on the importance of the 2008 National Institute of Health (NIH) budget and a 6.7% increase to continue many worthwhile projects. We arrived in Washington on March 20th to a full day meeting with the Coalition of Skin Disease representatives and advocates. We came to a consensus that we need to speak as one voice as advocates for those with skin disease and exchange ideas on how we can improve our operations. In order to accomplish this, we will be participating in joint projects at educational events to get the word out about skin disease. Also discussed were matters relating to proper treatments for specific skin disease diagnosis and how to improve communication with patients and specialists. During the evening of March 20th, we had the opportunity to receive our assignments for the next day at the Capitol and meet some of the people from our state that would be joining us on the face-to-face meetings. I live in Pennsylvania and was introduced to a dermatology resident from Philadelphia, a researcher at the University of Pennsylvania, and an executive director of a skin disease foundation in Lansdale (suburban Philadelphia). I was the only patient and also Board member and brought that prospective to the group. Being from a large state, I am also a resident of the rural central part of the state and brought a little geographical balance to the group. Wednesday, the 21st, started out with a strategy breakfast and then we went to meet with a staff member in Senator Robert Casey’s office. While Senator Casey is new to the Senate and he was not named to the committee on Health, Education and Labor, his staff person conveyed to us that “health” was his number one priority and did not see a problem with supporting our request. Next, we went to the office of Senator Arlen Specter. Sen. Specter is a cancer survivor and an ardent supporter of the NIH. We left his office feeling assured that he would support our request for an increase in funding. At this point, our partnership broke apart for separate visits to our individual Congressmen. My Congressman, Paul Kanjorski, had undergone heart by-pass surgery earlier in the week. I met with his aide who felt very confident that the Congressman would support our request. Please note that each of my elected officials that I met with have been personally touched by major health issues and I feel confident they realize the importance of the work the NIH does for all people. Attending these meetings in Washington brought me great fulfillment to represent you and the Foundation and I hope to be there in the future for this worthwhile work. Above: Skin Disease Research Day provides an opportunity for our voice to be heard on Capitol Hill. Pictured above are Rick Megargell, Secretary, Cutaneous Lymphoma Foundation Board of Directors, dermatology research fellows, and members of the Coalition of Skin Diseases. Above: Claudia Day, President, Cutaneous Lymphoma Foundation teams up to advocate in Virginia Below: Rick Megargell, Secretary, Cutaneous Lymphoma Foundation and Martin Weinstock, MD, Brown University 3 Cutaneous Lymphoma Foundation “Itch” continue from front page occurs when histamines are released in the skin. Long acting antihistamines are available in less sedating forms (loratidine, fexofenadine), while shorter acting sedating antihistamines (diphenhydramine 25–50mg po, hydroxyzine hydrochloride 25mg po) can be most helpful at bedtime when pruritus is usually at its worse. Topical antihistamines such as Caladryl may also be helpful. Doxepin, a tricyclic medication, is an antihistamine and a useful psychotherapeutic which can be started at a dose of 25–50mg, taken orally at bedtime. Topical corticosteroids, through anti-inflammatory properties, can be applied to pruritic or reddened areas to control inflammation and disease. Wet towel wraps can be performed daily with Participate in an Itch Study The University of Minnesota is conducting a study to identify itch-related biomarkers in the skin of patients with cutaneous T-cell lymphoma (CTCL). Little is known about the fundamental mechanism of itch in general and specifically in CTCL. This research may provide the foundation for finding the trigger for itch in CTCL and ultimately help to find potential therapies that provide some relief. They will soon be looking for study participants. For more information, please contact: cortisone creams to control pruritus and treat skin lesions. Prolonged use of topical corticosteroids may cause skin atrophy, and they may be alternated with emollients to relieve dry skin. Gabapentin, an anticonvulsant, may be prescribed to relieve pruritus at a starting dose of 300mg orally, three times a day, and titrated upward not to exceed a dose of 2400mg per day. Gabapentin acts on the brain to prevent pruritus by blocking neuronal hyperexcitability. Alternatively, over-the-counter treatments for itch have been helpful for many patients. Creams containing camphor and menthol may depress sensory receptors and give immediate relief. Moisturizing after bathing is very important, and compounds containing petrolatum and glycerin are best applied while the skin is wet. Severe pruritus can affect patients’ functioning, and symptomatic relief may improve their quality of life. Patients may benefit from topical and oral treatments of pruritus as described above, but it is also important to treat the CTCL disease itself. Treatment of disease may relieve pruritus. Early stage patients may benefit from topical creams alone, but patients with advanced disease may require systemic treatment such as bexarotene, interferon, photopheresis, SAHA, or denileukin diftitox. Long-term use of topical corticosteroids causes atrophy or thinning of the skin. In addition to relieving pruritus, systemic treatment may prevent overuse or reliance on topical corticosteroids. Baths and Skin Care Oatmeal baths may feel soothing to your irritated skin. You can buy oatmeal bath products at your local pharmacy. Bathing or showering in lukewarm (not hot) water with mild soap or cleanser may also help soothe the skin. Bubble-bath products and after-bath powders may cause your skin to itch more, so it is best to avoid using them. Rinse yourself completely and pat (do not rub) your skin lightly to dry. Applying moisturizer after bathing is very important. It can help care for your skin and prevent dryness and itching. Talk with your doctor or nurse about a moisturizer for you. Laundry Try switching to a very mild laundry detergent. Some commercial detergents and fabric softeners may irritate sensitive skin. Try adding vinegar (1 teaspoon per quart of water) to your laundry rinse cycle. This helps remove all the soap from your clothes, which also may help lessen skin irritation. Clothing Wearing loose-ﬁtting, lightweight clothing can help cut down on skin irritation and itching. Marna Ericson, Ph.D. 612-624-2995 Barrie Miller [email protected] 612-625-5925 Jaime Nugent 612-626-9728 4 Itch relief Try applying ice or a cool, damp washcloth to areas of your skin that are especially itchy. Rubbing your skin and applying pressure to the skin are better for your skin than scratching. Talk with your doctor about medicines that may help relieve itching, such as antihistamines or anti-anxiety medicines. Forum, Summer 2007 Coping with CTCL: One Patient’s Philosophy by Noal Cohen, long-time member and contributor to the CTLC-MF Listerv, an online patient support group S omeone on the MF/ CTCL listserv recently asked, “What do you do to try to forget about our disease? I really need some good ideas because with this disease, normal everyday stresses, and the coming of winter, I am starting to go nuts.” My response: I know the feeling well. It was like a ball and chain, always there, weighing me down. But as I’ve gotten older, I’ve learned to just take it a day at a time and not obsess. If I feel well, fine—I won’t look for trouble. And keep in mind that no treatments are curative but many are expensive and troublesome so when I leave my checkup having been told that I don’t need to treat, I’m very grateful. You’ve got to view your situation as that of someone with a chronic disease. This is difficult for cancer patients because malignancies are usually treated aggressively with the object of a cure or long-term remission. But that doesn’t often happen with MF/CTCL so we feel frustrated and panicky. You have to have trust in your physician and not keep looking for trouble. When I was told to stop topical nitrogen mustard (NM) treatments after 10 months, my skin didn’t look completely normal to me but it sure looked better than when I was first diagnosed. And, for a long time, I was quite paranoid over any perceived changes. Some of us are very ill and clearly need treatment and attention constantly. But many of us are able to lead almost normal lives, mainly going for periodic checkups with an MF/CTCL expert and having to resort to treatments from time to time. In the overall picture of health and disease, things could be a lot worse. So until a cure is found, relax and take things a day at a time. Constant, aggressive treatment for many of us is unwarranted, expensive and can negatively affect our quality of life. So be thankful for those days that you are feeling well, living a normal life and not dealing with the side effects of one or more drugs. I am 69, patch/plaque stage, diagnosed 1990, and have been treated with topical NM and steroids. At my checkup in September 2006, the dermatologist described my condition as “resting stage” but this past January, he instructed me to apply fluocinonide cream to certain areas. This is the typical waxing/waning pattern and there’s really little I can do about it so I’m just grateful for those periods when I am treatment free. Be vigilant but don’t ruin your life trying to gain control of things that you really can’t. CTCL-MF Online Support The CTCL-MF on line support group is a free discussion list for patients, family, friends, researchers and physicians to discuss clinical and non-clinical issues and advances pertaining to cutaneous lymphomas, including mycosis fungoides, Sézary syndrome and related diseases. The list includes information about patient experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices. To join the list, • e-mail: [email protected] • Leave subject area blank • In message area, type: subscribe CTCL-MF your name CTCL-MF Online Parent Support Parents of children diagnosed with cutaneous T-cell lymphoma have unique questions and issues. We now offer a very small, free, online discussion group just for you. To join the list, • e-mail: [email protected] • Leave subject area blank • In message area, type: subscribe CTCL-MF-Parents your name Free Information About Extracorporeal Photopheresis Therakos, manufacturer of the Extracorporeal Photopheresis (ECP) system UVAR XTS, has produced a new booklet entitled, Answering your questions about Therakos Photopheresis: A guide for patients and caregivers. Therakos ECP is approved as a medical treatment designed to alleviate skin problems associated with CTCL. Each ECP treatment is a procedure based on the collection of a small portion of a person’s white blood cells. These cells are then treated with a medicine that is activated by brief exposure to UVA light with prompt return of the treated cells to the person’s bloodstream. The booklet is available by sending an email request to: [email protected] 5 Cutaneous Lymphoma Foundation Coalition of Skin Diseases Advocates at American Academy of Dermatology Annual Meeting H The American Academy of Dermatology meeting is a great opportunity for the Cutaneous Lymphoma Foundation to share information about cutaneous lymphomas with physicians ow many times has a person with cutaneous lymphoma gone undiagnosed because their dermatologist had never heard of the disease? This is a common story, and a source of great frustration for many. One way the Cutaneous Lymphoma Foundation works to alleviate this problem is to have a strong presence at the American Academy of Dermatology Annual Meeting—something we’ve been doing since our inception in 1998. This meeting attracts over 8,000 physicians each year and offers several days of educational opportunities. Our booth (pictured left) is in collaboration with the Coalition of Skin Diseases (CSD), a powerful advocacy and educational group for all skin diseases. Throughout the meeting, physicians drop by the booth to pick up literature from our organizations and speak with CSD representatives. Breakout sessions about cutaneous lymphomas, where experts in the field (like Dr. JoAnn Latkowski, Dr. Peter Heald, Dr. Madeline Duvic, and Dr. Sereta Parker) speak to roomfuls of dermatologists, were numerous this year. We see this as a growing trend over the years, and one that we will continue to encourage. The International Society of Cutaneous Lymphomas also meets during this time. This impressive international group of specialists discuss treatment standards and staging guidelines. Their work serves to advance patient care for cutaneous lymphomas. The Cutaneous Lymphoma Foundation will continue to represent people with this disease at meetings like the American Academy of Dermatology Annual Meeting, the Dermatology Nurses’ Association Annual Meeting, the Society of Dermatology Annual Meeting, and the American Society of Hematology Annual meeting in order to make sure that each person with cutaneous lymphoma gets the best care possible. Cutaneous Lymphoma Treatment Options Presented at Dermatology Nurses’ Association Annual Meeting The Dermatology Nurses’ Association Annual Meeting is yet another essential meeting where the Cutaneous Lymphoma Foundation and the Coalition of Skin Diseases present materials and talk with professionals who are treating skin diseases. At the meeting this February, there was a breakout session specifically for nurses who treat cutaneous lymphomas. There were educational presentations about photopheresis and Zolinza, as well as an opportunity for learning about the Cutaneous Lymphoma Foundation. We are always impressed with the compassion of this very special group of nurses, who are often the ones who interact the most with people with cutaneous lymphoma. 6 Forum, Summer 2007 Cutaneous Lymphoma Patient Educational Opportunities June 16, 2007 Boston, MA Lymphoma Workshop, presented with the Lymphoma Research Foundation Sheraton Needham October 12 – 14, 2007 Brooklyn, NY North American Educational Forum on Lymphoma presented by the Lymphoma Research Foundation June 30, 2007 Philadelphia, PA Cutaneous Lymphoma Patient Educational Forum University of Pennsylvania October 20, 2007 Pittsburgh, PA 10th Annual Jegasothy Support Group for CTCL June 30, 2007 Nashville, TN Cutaneous Lymphoma Patient Educational Forum October 20, 2007 Calgary, AB Living with Lymphoma: The Journey Forward, presented with the Lymphoma Foundation Canada September 15, 2007 San Francisco, CA Lymphoma Workshop, presented with the Lymphoma Research Foundation November 3, 2007 Minneapolis, MN Lymphoma Workshop, presented with the Lymphoma Research Foundation For more information about these free events, please visit our website, www.clfoundation.org, or email us at [email protected], or call (248)644-9014 Patient Educational Forums provide exceptional opportunities for people with cutaneous lymphoma to receive accurate information about treatment options, access experts in the ﬁeld and connect with other people with similar experiences. Cutaneous Lymphoma Foundation Patient Education Forums key features: These educational opportunities are made possible by generous unrestricted educational grants from: Platinum Sponsors: Eisai Inc. and Ovation Gold Sponsors: Therakos and Merck Oncology Silver Sponsor: Gloucester Half-day to day-long event Held in cities throughout North America Professional and lay speakers Format includes lectures, Q&A sessions and small-group discussions Objectives: • Develop a better understanding of diagnostic tests. • Learn about treatments available for diﬀerent stages. • Identify resources for treatment and support. 7 PO Box 374 Birmingham, MI 48012 NON-PROFIT US POSTAGE PAID BIRMINGHAM MI PERMIT NO 265 Free Cutaneous Lymphoma Patient Educational Materials Order any of these educational materials free of charge! Simply visit www.clfoundation.org and click on “Publications” or call 248-644-9014.
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