ISCL Meets in Paris
by Seth Stevens, M.D., Assistant Professor of Dermatology and Oncology at Cas Western Reserve University, Chief of Dermatology at the Cleveland VA Medical Center, and Director of the Cutaneous Lympoma Program of the Ireland Cancer Center/University Hospitals of Cleveland
The International Society of Cutaneous Lymphomas (ISCL) held a joint meeting in Paris this June with the European Organization for Research and Treatment of Cancer (EORTC) Cutaneous Lymphoma Task Force and the Japan Cutaneous Lymphoma Group to discuss "Staging and Prognostic Factors in Cutaneous Lymphoma."
The scientific program included presentations on classification, staging, treatment strategies and prognostic factors. There was sharing of information and roundtable discussions on "The Next Step Forward."
Chaired by Dr. Gunter Burg (University Hospital of Zurich), the session on classification compared the several different classification systems in use, and described several new or rare entities that have been noted in both the Western world and the Eastern world. The importance of efforts to clarify the classification of lymphomas is to work toward the use of a common language in describing an individual patient's disease in order to best advise other patients on their prognosis and to choose the best therapies for any given individual.
Along with the classification of cutaneous lymphomas, there was a presentation on the consensus definition of early mycosis fungoides (MF). This effort has gone on for many years and the presentation of a means to define MF that integrates the clinical appearance and behavior, routine pathology and specialized tests (such as T-cell receptor gene analysis and immunohistochemistry) in order to facilitate more uniform criteria for making the diagnosis. The importance of this work is probably readily apparent to our readers, given the frequently frustrating delays in reaching a diagnosis of MF and the accompanying uncertainty as to whether a patient does or does not have a lymphoma. The approach of the issuance of such a consensus report is exciting because previous attempts have not been successful. We must congratulate the dedication and the hard work of the ISCL in this regard.
The second session, Chaired by Dr. Youn Kim (Stanford University Hospital) addressed staging. Again, the point of these discussions is to lead to a better understanding of the likely outcomes of patients at the time of diagnosis and to tailor treatment appropriately. In particular, two new staging systems were presented in which patch lesions are viewed as distinct from plaque lesions and the other, which recognizes that the currently used staging system does not take into account the extent of blood involvement with lymphoma. While staging patients' disease can guide clinical decisions, these discussions recognize that new techniques for diagnosis and new data regarding clinical lesions' behavior can be exploited to improve the current staging system, which is a quarter of a century old.
The third session focused on prognostic factors other than staging. Whereas, staging information provides information regarding prognosis, stages of cutaneous lymphomas broadly group patients. Therefore patients are frequently given information that describes the average patient with that stage of disease. This information is critical, however, each individual patient wants to know whether he or she is likely to fare better or worse than the average patient. Towards that goal, more subtle features of the pathologic appearance, genetics, and blood test results have been investigated as to whether they may influence patient outcome.
The final session of the day was chaired by Dr. Seth Stevens (University Hospitals of Cleveland) and focused on standardizing the response to therapy. This session discussed ways to quantify the amount of cutaneous lymphoma, and particularly MF, and how to measure changes in the routine care of patients and during clinical trials. As with some of the other sessions, the main goal of this session was to work toward a uniform means to describe the behavior of patients' disease. This is important in order to compare outcomes of clinical trials on a head-to-head basis. Also, it is likely that short of complete response, some degree of partial response to therapy may have prognostic importance.
Similar meetings bring the world's leading investigators to share information and compare what they have learned in their research. Collaborations such as these have the potential to lead to new and more effective therapies.
by Judy Jones, President, Mycosis Fungoides Foundation
Meetings, meetings, meetings...
This year has been filled with meetings. The Mycosis Fungoides Foundation was represented at the Dermatology Nurses Association Annual Convention, American Academy of Dermatology Annual Meeting, American Society of Clinical Oncologists and the Society for Investigative Dermatology Annual Meeting. We also attended a partnership workshop with the Coalition of Patient Advocates for Skin Disease Research and the American Academy of Dermatology, as well as National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Day, to lobby for increased research funding. Meetings give us the opportunity to be seen in the medical community as well as network with and determine the needs of physicians, nurses, and patients.
Thousands of informational pamphlets were sent to physicians' offices as well as made available at our exhibit booth for physicians to distribute to their patients.
An issue that continues to arise is the lack of accurate information in one place. An evolving project is providing updated treatment information on our web site, MFFoundation.org. We are in the process of researching, gathering information and working on the technical aspects. Watch for changes in our web site in the next couple of months.
I had the wonderful experience of attending a "Face-to-Face" meeting in Los Angeles this year. Being able to talk to other patients and their families lets you know that you arenÍt the only one dealing with this disease. It is my intent to set up face-to-face gatherings, as I travel to various conferences. If you are interested in setting one up in your area, let us know and we'll get you started.
Your support for our newsletter has been inspiring. Please take the time to join the Mycosis Fungoides Foundation if you have not already done so. For the first time, CTCL patients have started to build a sense of community. As a group, we are able to bring national attention to our disease and influence physicians, researchers and pharmaceutical companies to continue to work toward better treatment options and more understanding of the disease to discover a cure.
by Stuart R. Lessin, M.D. Director of Dermatology, Fox Chase Cancer Center, Philadelphia, PA
The 63rd Annual Meeting of the Society for Investigative Dermatology (SID) took place in Los Angeles, California from May 16-19, 2002. Investigators from around the world submitted over 850 original abstracts. New findings related to CTCL were well represented.
In an address to the Society, Dr. Richard Edelson, Professor and Chairman of the Department of Dermatology at Yale University, presented new findings pertaining to the mechanisms underlying the therapeutic effects of photopheresis. Experiments conducted by the Yale research team have shown that photopheresis may be more effective if the re-infusion of treated blood cells is delayed for a period of time. Clinical trials will be required to determine how beneficial new photopheresis treatment regimens will be.
Dr. Youn Kim, Professor and Director of the Cutaneous Lymphoma Program at Stanford University, provided a state-of-the-art lecture on CTCL prognostic factors and therapies to the entire Society. She reported that the current staging system, developed in 1978, still provides the best prognostic information; that is, the extent of skin involvement at the time of diagnosis still is the best indicator of how a patient will fare with his or her disease. For advanced stages of CTCL, the International Society is developing additional blood staging categories that more accurately reflect the amount of blood involvement for Cutaneous Lymphoma. This will aid in treatment decision-making and in evaluating treatment results in clinical trials. Dr. Kim also announced that a new clinical trial, testing a therapeutic vaccine that targets the T-cell receptor on CTCL cells, would be starting this summer at Stanford University.
In other presentations, the Stanford group reported the long-term outcome of 525 patients with CTCL that were treated and followed at their institution for up to 30 years. Patients with limited disease (less than 10% of body surface area involvement or T1) had the same overall survival rate as controls without CTCL. Patients who were older and had advanced disease or extracutaneous disease at the time of diagnosis were at the greatest risk of progression. The Stanford Group also reported their long-term experience with topical nitrogen mustard treatment by reviewing the results of 203 patients treated at Stanford. They show that 93% of patients with T1 disease responded to treatment (65% completely) by ten months, on average. For patients with greater than 10% of the body surface area involved (T2), the response rate was 72% (34% completely) by 19 months, on average. Approximately 83-85% from both groups were free from progression of disease at ten years. Less than 10% of all treated patients experienced allergic reactions to nitrogen mustard when treated with ointment-based, compared to 6% with aqueous or water-based preparations.No patients developed secondary skin cancers attributable to topical nitrogen mustard.
Other groups reported on newly characterized defects in immunity that may help our understanding of the cause of CTCL, and in designing new immunotherapies. Also, several groups reported on their work of identifying specific receptors on CTCL cells that, when activated, results in cell death. These receptors appear to interact with therapeutic agents, such as bexarotene (Targretin®) and may explain how retinoids may be involved in enhancing CTCL cell death.
Patients and physician interacting at SID meeting
Drs. Robert Knobler and Franz Trautinger from the Department of Dermatology, University of Vienna Medical School Division of Special and Environmental Dermatology
Judith Shea discussing poster with Kathy MacDonald, Steve Froberg, Charlotte and Maurice Hamm
Individuals with parapsoriasis, a red, scaly rash located in the "bathing suit" area, could be at risk for developing CTCL. Researchers at Fox Chase Cancer Center in Philidelphia, Pennsylvania are conducting an innovative clinical trial using bexarotene (Targretin®), a form of vitamin A in a topical gel, to treat parapsoriasis and prevent the disease from progressing into cancer.
The FDA has approved Targretin® for the treatment of CTCL, but Dr. Suart Lessin (Fox Chase Cancer Center) and his colleagues are using the gel as a prevention tool. "If we can treat patients who are diagnosed with parapsoriasis, we can potentially stop the cancer before it has a chance to start or progress," says Lessin.
Eric Vonderheid, M.D., has joined the Department of Dermatology at Johns Hopkins Hospital as director of its new photopheresis program and cutaneous T-cell lymphoma clinic. The photophresis program is the only such program in the state. Before bringing photopheresis to Hopkins, Vonderheid was a professor of dermatology at MCP Hanemann University in Pennsylvania. At Johns Hopkins he will be an integral part of the new multidisciplinary clinical and research program in skin lymphomas.
• Leah Yudle, a member of the CTCL-MF listserv wrote an article, "Healing From the Inside Out --One Person's Path With Cutaneous T-Cell Lymphoma-Mycosis Fungoides" that has been published in the Journal of the American Medical Association. Leah is a speech/language pathologist, technical editor, and artist from Lexington, Massachusettes.
• The American Academy of Dermatology pamphlet committee is publishing a CTCL booklet for physicians to distribute to patients.
• ICN Pharmaceuticals is updating their PUVA Resource Directory. Doreen Hudson and Judith Shea have been working with them so patients will be able to find treatment facilities more easily. The directory will be available from ICN Pharmaceuticals, Mycosis Fungoides Foundation, and on our web site at www.MFFoundation.org.
• The Dermatology Nurses' Association has a Photopheresis/CTCL Speciality Interest Group headed up by Sue McCann, MSN, RN, DNC.
• The Mycosis Fungoides Foundation, in partnership with the Society of Investigative Dermatology and industry leaders, will host the first annual CTCL symposium to be held in May, 2003. The purpose is to promote new research in CTCL and encourage young investigators to specialize in CTCL research.
• The National Psoriasis Foundation (NPF) worked with the American Academy of Dermatology (AAD) to initiate a campaign for higher Medicare phototherapy rates, responding to a concern that physicians were not being adequately reimbursed for these procedures. We thank them for their successful efforts to increase reimbursement rates by 50%. These higher rates for UVB and PUVA will make it more financially viable for physicians to offer phototherapy, thus making these therapies more accessible for those medicare patients who benefit from these treatments.
• Sherry Pickett is starting a support group at Henry Ford Hospital in Detroit, Michigan this fall. Additional information is available from the Mycosis Fungoides Foundation.
• Nick is turning 13 in November. Good luck as you start back to school. In a future newsletter we'll discuss how this disease affects children.
• Marcia Beauchamp and Amanda Jones volunteered their time to help staff our exhibit booth at the American Academy of Dermatology Annual Meeting.
Mark your calendars for the LRF Ed Forum that will take place on October 26th and 27th in Los Angeles. There will be lymphoma experts to discuss lymphoma pathophysiology, diagnosis, treatment options, clinical trials and promising research as well as lead disease-specific medical sessions. We are excited that they are going to have Dr. Youn Kim from Stanford leading a CTCL breakout session. The conference offers opportunities to interact with the experts and network with fellow patients and caregivers to gain information and support. For more information, contact LRF at (800) 500-9976, (310) 204-7040 or LRF@lymphoma.org.
To encourage your attendance, the Mycosis Fungoides Foundation is offering a limited number of scholarships. For information, contact us here or call (248) 644-9014. Let us know if you are coming so we can let you know more about the CTCL-specific events.
Clinical trials are important as researchers look for new therapies and treatment combinations to improve the best available treatment options for patients. Unfortunately, during a search for the latest clinical trials available to patients, we found they are not always easy to find. In order to provide you with the most up-to-date information, we are going to add a clinical trials page to our web site at: MFFoundation.org.
Currently, there are clinical trials available in the following states: Alabama, Arkansas, California, Connecticut, Delaware, Florida, Illinois, Indiana, Iowa, Louisiana, Maine, Maryland, Massachusetts, Michigan, New Jersey, New York, Ohio, Tennessee, Texas and Washington.
We will continue to work with investigators to try to bring you more information. The most difficult information to keep current is small trials at individual facilities. If you are an investigator and would like your trial publicized, let us know. If you are a patient, ask your physician what trials may be available to you.
Clinical Trial Myths
Myth: They're only available at large institutions.
Actually, many are at large hospitals, but multi-site studies may be available close to you. Ask your physician.
Myth: Some people get treatment and others don't in a clinical trial.
Treatment would never be denied a patient. Trials can be set up for many reasons, for example, to determine which treatment is better, or if a combination of two treatments are better than one alone.
Myth: Insurance will not cover clinical trials.
Often insurance will cover the costs. In some cases the clinical trials will cover the costs.
Myth: I will be treated like a guinea pig.
You will probably get more attention than the average patient because you will be monitored closely.
It is very lonely to have a disease that none of your friends have or understand. Sometimes you may feel like you're the "only one out there." Support can be very important. General cancer support groups may help, but they don't have information on the type of treatments you are receiving. Some options are the on-line support listserv, face-to-face meetings, and CTCL-specific groups. This month we will highlight one in Tyler, Texas. If you run a group, or are a member of a group, please let us know so we can publicize it for you.
The CTCL-MF on-line information/support listserv consists of over 750 members who are willing to share their experiences. To join, go to: http://acor.org or contact us for further information.
These are occasional get-togethers where a patient plans a meeting (either at a home or restaurant). They usually consist of 6-15 patients and caretakers who meet to exchange their stories. If you are interested in organizing a get-together, let us know and we'll let you know how to do it.
Face-to-face meeting in Los Angeles
Standing left to right: Steve Froberg, Judy Jones, Paul Zutz
Seated left to right: Kathy MacDonald, Georgia Froberg, Judith Shea, Maruice and Charlotte Hamm
East Texas Support Group
Jerry Camp is a good example of someone that was interested in support. He went out and did something about it. He talked to Dr. Amit G. Pandya at Southwestern Medical Center at Dallas and learned that there were about 12 people within 65 miles that had CTCL. There were seven responses to a flyer, and a group was born.
Vicki Camp added to the meeting with her background as an oncology nurse at Mother France Hospital. We are sorry to report she died suddenly of a brain aneurysm on the 25th of July. Our thoughts are with Jerry and his family.
For information on the group and when they will have their next meeting, contact: Jerry Camp, 11000 Shadowwood Circle, Whitehouse, TX 75791. Phone: 903-839-6160, e-mail: email@example.com
What good does it do me?
There are many issues pending before the United States Congress and state legislatures that affect you, directly or indirectly (or may in the future): managed care, Medicare, Medicaid, disability, funding for research, etc. A good example of a grass-roots advocacy project that affects many of us is one the National Psoriasis Foundation (NPF) initiated last year. The availability of UVB and PUVA treatments were declining because of low insurance reimbursement rates. The NPF realized that if they focused on increasing the Medicare reimbursement rate, private insurers would follow. Through a lot of hard work, they were able to accomplish their goal. Without their diligence, we may have lost a lot of UVB and PUVA locations necessary for treatment of our disease.
Another important issue is that Medicare currently does not cover oral cancer drugs. This is an issue the Mycosis Fungoides Foundation is watching carefully. Targretin® capsules fall into this category.
We welcome you to become involved in the advocacy process. What are you interested in doing? Talking to your legislators? Researching an issue? Attending an advocacy day in Washington? Please get involved to ensure your lawmakers hear your views. To let us know how you would like to get involved, contact us.
An easy way to e-mail your legislators is to go to: http://www.congress.org and put in your zip code to obtain your representatives. Then there is a one-click option to email to all your electe officials at once.
The President of the American Academy of Dermatology (AAD), Dr. Fred F. Castrow's presidential year is titled "Our Patients First." In keeping with this theme, the AAD hosted a partnership conference with 18 of the 25 member organizations of CPA-SDR.
One of the goals of this conference was to work together to have greater visibility at the AAD Annual Meeting and learn how to exhibit effectively so physicians will be aware of patient groups that are available for information and support. The partnership conference was part of a larger, ongoing effort by the Academy to partner with the patient advocacy groups in a number of areas.
Judith Shea and Judy Jones were in Washington in April representing the Mycosis Fungoides Foundation. They joined members of the Society of Investigative Dermatology, American Academy of Dermatology and the Coalition of Patient Advocates for Skin Disease Research (CPA-SDR) to talk to legislators regarding the need for research funds for the National Institutes of Health and especially for NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases).
Upon their arrival, they met with members of the CPA-SDR, Stephen Katz (Director, NIAMS), Alan Moshell (Director, Skin Disease Branch, NIAMS and Peter Lipsky (Scientific Director, NIAMS). Some of the topics discussed were the need for patient registries, the economic burden of skin diseases and funding for research.
The second day included meetings with members of Congress. This process is described in detail by Claudia Day when, in June, she participated as a representative of the Leukemia and Lymphoma Society at the Lobby Day with One Voice Against Cancer (OVAC). Her report follows:
More than 200 participants from OVAC partner groups met with U.S. Senators and Representatives to urge them to fulfill their commitment to double the National Institutes of Health (NIH) budget by 2003, fully fund the National Cancer Institute (NCI), and fund vital programs at the Centers for Disease Control and Prevention (CDC).
OVAC is a collaboration of more than 40 national non-profit organizations representing more than 20 million Americans formed to deliver a unified message to Congress and the White House on the need for increased cancer-related research and research application funding as well as for screening and prevention initiatives.
On June 3, participants attended workshops to learn the process of an effective lobby visit, as well as getting briefed on background information about the appropriation process for NIH, NCI, CDC, and other organizations.
June 4 began with a 9:30 a.m. hearing of the Labor-HHS subcommittee of the Senate Appropriations committee, chaired by Senator Harkin of Iowa. Attendants heard testimony, including personal stories, from several speakers about the urgent need to continue funding for cancer research.
Most of the participants had to leave the hearing before it ended, heading off to appointments with members of Congress. As a resident of Virginia, I met with staffers in the offices of my two Senators (Allen and Warner), as well as my Representative in the House (Davis). I was accompanied by as few as two others and as many as a dozen. Many of the participants had previous experience lobbying Congress, but a significant number were new to the process, as I was. Among us were volunteers and paid staffers of the partner groups (for example, the American Cancer Society).
During the actual meetings with members or staffers, each participant had a brief (one to two minute) opportunity to talk. Although our ultimate message was the same (to request support for funding), our personal stories supporting our plea were quite different. Many told heart-wrenching stories of personal anguish, families torn apart, and oftentimes inspiration. I decided to tell a different story, emphasizing the economics of a cancer such as mycosis fungoides. I told them that a typical MF patient could look forward to decades of sometimes expensive therapy, and pointed out that research dollars spent seeking prevention, cure, or even just effective but inexpensive treatments could produce long-term cost savings.