MFF Hosts CTCL Symposium
The Mycosis Fungoides Foundation (MFF) hosted its inaugural cutaneous T-cell lymphoma (CTCL) Symposium on May 1, 2003 in Miami Beach, Florida. The symposium was part of the International Investigative Dermatology (IID) 2003 meeting. The goal of the symposium was to promote awareness, advance patient care and facilitate research in CTCL. The symposium also provided an annual venue to highlight new physicians and scientists to the field and new advances in the treatment of CTCL.
This year’s program consisted of four speakers. Dr. Lars French from the University of Geneva spoke about how lymphocytes survive in the skin and what strategies may prove useful to develop treatments that turn on "death" signals to cancerous cells. Dr. Sam Hwang of the National Institutes of Health spoke about the different molecules that make cells “sticky” and that new biologic treatments that target these molecules in other skin diseases, such as psoriasis, may have use in CTCL. Dr. Stuart Lessin of the Fox Chase Cancer Center in Philadelphia spoke about the use of Targretin® Gel in parapsoriasis, a condition that he considers a precursor stage of CTCL and should be treated as a means of preventing progression to CTCL.
Dr. Karen McGinnis, currently dermatology resident at the University of Pennsylvania, was awarded the MFF’s first Young Investigator Award for her work on treatment of subcutaneous T-cell lymphoma. She presented several cases of subcutaneous T-cell lymphoma, a rare and often aggressive form of cutaneous lymphoma, which responded to Ontak®, a treatment FDA approved for CTCL. Based on the excellent responses, she recommended the use of Ontak® as a first choice for the treatment of subcutaneous T-cell lymphoma.
The symposium was very well received, with over 150 international physicians and scientists in attendance. The IID 2003 is the fourth joint meeting of the European Society for Dermatological Research (ESRD), Japanese Society for Investigative Dermatology (JSID) and the Society for Investigative Dermatology (SID).
Support for this year’s CTCL Symposium was provided by educational grants from Ligand Pharmaceuticals, Inc., Therakos, Inc. and ICN Pharmaceuticals, Inc. Judith Shea of the MFF organized the symposium and Dr. Stuart Lessin served as moderator. Plans are already underway for the 2nd annual CTCL Symposium to be held at the annual meeting of the SID in 2004.
by Judy Jones, MFF Executive Director
We’re supposed to be in those “Lazy, Hazy, Crazy days of summer,” when people slow down and take vacations. I hope you are there, because the Mycosis Fungoides Foundation (MFF) isn’t slowing down. We are moving along at an amazing pace. Since our last newsletter, our Board of Directors has met twice and is doing a terrific job of strategic planning, setting priorities, and charting a path to carry us well into the future. I feel very fortunate to be working with this team of dedicated, selfless individuals.
Our congratulations to the National Organization of Rare Diseases (NORD) who celebrated 20 years of championing the cause of rare diseases. The MFF supported one of these issues by attending a news conference and speaking about the necessity of including orphan cancer drugs in Medicare Reimbursement schedules.
I was able to spend time talking to patients at a "Face-to-Face" meeting in Chicago when attending the American Society of Clinical Oncology annual meeting, and also in Boston at the Lymphoma Research Foundation’s Innovations in Lymphoma Treatments program. I had my camera ready to take pictures both times, and was so involved that I completely forgot. It’s my fault that we don’t have these pictures in our newsletter.
One of the most frequent questions patients ask is, "Where can I find a doctor who is familiar with this disease?" Because this is a rare disease, it is important to find someone who is up-to-date on the most recent research and treatment options. In order to facilitate access of CTCL patients to medical facilities with experienced health care providers and comprehensive services in CTCL, the MFF is developing a listing of CTCL referral centers (CTCL Centers of Excellence). This information will be posted on our website.
We appreciate your continued support as we move ahead. Together we can make a difference and offer new and expanded programs and services.
by Holly A. Kerr, MD, Andrew P. Kontos, MD, and Henry W. Lim, MD
Department of Dermatology, Henry Ford Health System, Detroit, MI
UVB, UVA, UVC, PUVA -- do you feel like you're swimming in alphabet soup? Phototherapy comes in different forms, and is one of the many therapies available to treat CTCL. Beginning a new treatment can be intimidating -- what do all these terms mean? Here, we will explain the different forms of phototherapy and what you can expect. Phototherapy isn't for everyone; discuss your treatment options with your physician.
Phototherapy is the use of ultraviolet radiation, or "light," for the treatment of various skin conditions, such as mycosis fungoides (MF). It can be used either alone or in combination with other topical (creams and ointments) and/or oral medications. Ultraviolet (UV) radiation is divided into three regions: UVC, UVB, and UVA.
UVC is known as germicidal radiation and is not used for phototherapy.
Broadband UVB has been used for treatment of MF for several decades. A new form of UVB called narrowband UVB uses only a few selected UVB wavelengths. Narrowband UVB is generally more effective than broadband UVB; however, narrowband UVB phototherapy has only been available in the U.S.A. since 1997, but is gradually becoming more accessible. UVB penetrates the skin less than UVA; therefore, it is used primarily for patch stage mycosis fungoides.
UVA, or black light, is divided into UVA-1 and UVA-2. Since it has deeper skin penetration, it can be used for the treatment of thicker areas of MF. Psoralen & UVA or PUVA (pronounced pooh-vah) involves taking oral psoralen or applying topical psoralen (lotion or bath) and receiving UVA radiation from a light booth. UVA-1 is a new form of phototherapy and is not commonly available, except at academic centers. Early studies in a small number of patients show that it is equal to PUVA in early stages of MF.
Phototherapy is initially administered three times a week. It typically takes 20-30 treatments for a response to become apparent. If no response is seen at that time, an alternate light source (phototherapy) or medication should be considered. If improvement occurs with phototherapy, the frequency of treatments will be reduced and eventually discontinued.
Extracorporeal photopheresis involves removing blood with an IV needle and circulating it through a machine that filters out white blood cells, some of which are cancer cells. The white blood cells are then collected in a bag and liquid psoralen is added. The cells are exposed to UVA, which alters some of the cells and then reintroduced into the blood. This is a time consuming process and is used for those with an advanced stage of CTCL called Sezary’s syndrome (where the skin is red and there are usually a large number of abnormal cells is in the blood). Treatments are usually done on two consecutive days a month for several months to years.
Patients with mycosis fungoides must not treat themselves in tanning parlors. The light sources in tanning beds are different from those used for the medical treatment of mycosis fungoides. Each tanning bed delivers different amounts of radiation for the same amount of time and proper evaluations of the skin one would normally receive in a medical setting are not available at tanning parlors.
The side effects of phototherapy differ with each light source, but early side effects include: skin redness or sunburn, blistering, itchiness and tanning. Premature aging and wrinkling of the skin is increased with phototherapy, but is more common with PUVA than UVB. Damage to the cornea can occur with all types of phototherapy; therefore, one must follow physician’s instruction on eye protection. Cataract formation can occur if proper eye protection is not worn during and after PUVA treatment. Nausea and vomiting may occur after taking oral psoralen. Patients on PUVA must also avoid sun exposure on the days of treatment, since the medication is still present in the skin the entire day. The risk of increased skin cancer development has been documented with long-term use of PUVA (usually >250 treatments), although this has not yet been proven conclusively with UVB. Most patients will not experience side effects and can expect to carry out normal daily activities.
Depending on the stage, thickness and area of skin involvement with CTCL, your dermatologist will decide which type of phototherapy is best for your disease.
Innovations in Lymphoma Treatments
Saturday, September 13, 2003
Hyatt Regency in Houston, Texas
Registration, Breakfast and Literature Display
The Healing Power of Clinical Trials
Wendy S. Harpham, M.D.
Author, Diagnosis Cancer: Your Guide to the First Months of Survivorship
Lymphoma Biology and Clinical Trials Overview
Q & A
CTCL Clinical Trial Breakout Session
Dr. Nam H. Dang, M.D.
Anderson Cancer Center
Note: The program continues with breakout sessions on other diseases. You are welcome to stay for the rest of the day, although Dr. Dang's session is the only one specifically for CTCL. For further information and to register, please call LRF at (800) 500-9976 or email email@example.com.
Meet the Doctor
Tuesday, September 16, 2003
Los Angeles, California
David Geffen School of Medicine at UCLA
200 UCLA Medical Plaza, Room 206
Location subject to change. Please call to confirm.
In recognition of Leukemia & Lymphoma Awareness Month:
Lauren Pinter-Brown, MD
Clinical Professor of Medicine
• Cutaneous Lymphomas
• Mycosis Fungoides
• Lymphomatoid Papulosis
• Anaplastic Large Cell Lymphoma
• Other Skin Lymphomas
Dinner will be provided by Ligand Pharmaceuticals. Space is limited. There is no fee. Please call to reserve a seat:
Frini Li-Chiu, LCSW
UCLA BMT Program
Cheryl Abe, LCSW
UCLA Oncology Center
The Leukemia & Lymphoma Society
The UCLA Oncology Center
Mycosis Fungoides Foundation
UPMC/MFF CTCL Patient Symposium
Saturday, October 11
Oakland Presbyterian UPMC Campus in Pittsburgh
UPMC Conference Room
Biomedical Science Tower Room S 120
Breakout Room S123A
Registration (continental breakfast)
Sue McCann, MSN, RN, DNC,
Photopheresis Coordinator, UPMC
The Nursing Perspective on CTCL
Dr. Larisa Geskin
Director of Cutaneous Oncology at UPMC
Dr. Frank Strobl
Therakos Pharmaceuticals, Inc.
Break (coffee, soft drinks, water)
CTCL Product Review
Khanh Bui, Pharm. D.
Ligand Pharmaceuticals, Inc.
Mycosis Fungoides Foundation
Judy Jones, Executive Director
Dr. Larisa Geskin
Dr. Frank Strobl
Patient Sharing Breakout
facilitator: Judy Jones, LPC
facilitators: Linda Sharp, RN and Joyce Grater, LSW
Please RSVP. For more information and to RSVP, contact Sue McCann at 412-648-6530 or firstname.lastname@example.org.
Educational Forum on Lymphoma
Lymphoma Research Foundation's annual two-day national patient education conference, the Educational Forum on Lymphoma, brings together the country's leading lymphoma experts to discuss the latest information on lymphoma, its treatments, promising research and clinical trials.
Patient support specialists lead sessions on survivorship and provide information related to coping with the many challenges associated with living with cancer. The Ed Forum offers many opportunities for conference guests to network with fellow patients and caregivers and to discuss their concerns one-on-one with our renowned speakers. We are fortunate that the LRF has included a Cutaneous T-Cell Lymphoma, Mycosis Fungoides session presented by Richard Edelson, M.D., Yale University School of Medicine.
The 2003 Ed Forum will take place on October 24-26 at the Capital Hilton in Washington, D.C. You can view the schedule on the LRF website at http://www.lymphoma.org, or call for a brochure and registration information at (800) 500-9976.
by Madeline Duvic, MD
Professor of Medicine and Dermatology
Deputy Chair, Dermatology, University of Texas, MD Anderson Cancer Center
As primary investigator, I am leading a group of physicians who are currently developing a clinical trial to prospectively evaluate the effectiveness of photopheresis in treating early stage CTCL (Stage IA – IIA). During photopheresis the white blood cell (WBC) fraction of a patient’s whole blood is collected using a specially designed apheresis instrument. It is the WBC fraction that contains the abnormal lymphocytes seen in CTCL. Following collection, the WBC fraction is mixed with a photosensitizing drug known as UVADEX (Methoxsalen) and exposed to UVA light. The treated cells are then returned to the patient where they are believed to undergo apoptosis or natural cell death. Although the exact mechanism of action remains unclear, these apoptotic WBC’s seem to stimulate the patient’s immune system too more effectively fight the CTCL.
Photopheresis was the first FDA approved therapy for treating CTCL. Clinical trials performed in the late 80’s demonstrated the safety and efficacy of photopheresis to treat CTCL. These studies focused primarily on late stage (IIB-IV) CTCL. At that time it was believed, based on available laboratory tests, that only late stage CTCL patients had abnormal circulating lymphocytes in their blood. Since photopheresis needs cells circulating in the blood to be able to collect and treat them, only late stage CTCL was studied. Today, with more sensitive diagnostic tests, it has been demonstrated that even early stage CTCL patients have circulating abnormal lymphocytes in their blood. In addition, retrospective results published in the scientific literature indicate that photopheresis may be efficacious in treating the skin manifestations of early stage CTCL.
General inclusion criteria for this study will be as follows:
1. Must be CTCL stage IA, IB or IIA
2. Presence of measurable CTCL skin lesions
3. Have a positive skin biopsy diagnostic of CTCL
4. Must weigh at least 40KG and have adequate veins for intravenous access
Please continue to monitor future issues of this newsletter for more information on this study and study site locations. For more information on photopheresis you may also reference the photopheresis website at therakos.com.
(April - July 2003)
We appreciate the thoughtfulness of those families who designated that gifts be made to the Mycosis Fungoides Foundation in memory or in honor of a loved one. These generous contributions support the progress of our mission.
Thomas Baier Redford, Michigan
Harold Faucher Tucson, Arizona
Thomas E. Homulka Mt. Pleasant, Pennsylvania
Tom Kellogg Bloomfield Hills, Michigan
Barry Kupsch Alberta, Canada
Ruth Robins Sarasota, Florida
Norach Rodriguez Park City, Utah
You can honor a friend or family member for any occasion with a gift to the Mycosis Fungoides Foundation. Please include the name and address of the individual being honored so that acknowledgement of your kind donation can be sent.
Thanks to those of you who have responded to our letter requesting donations. If you would like more return envelopes to pass out to friends, neighbors or relatives, let us know and I’ll send them to you. Your contributions make it possible to provide information and services to patients and physicians.
If you work for Johnson & Johnson, or live in the New Jersey, Southeastern Pennsylvania or Delaware area and give to the United Way, you can now designate your contributions to go to the MFF. Our United Way donor designation number is: 042977.
DNA Arrays Diagnose, Predict Survival for Sézary Syndrome
Louise C. Showe, Ph.D., of the Wistar Institute in Philadelphia, Pennsylvania, has recently reported the use of DNA array technology to identify important genes involved in Sézary syndrome. DNA arrays provide scientists with the ability to assess the activity of thousands of different genes and determine which genes are turned on or off in any particular tissue studied. Dr. Showe utilized customized DNA arrays to analyze 4,500 genes and identified 385 genes that were either overactive or underactive in blood samples taken from the 45 Sézary syndrome patients, as compared to 20 normal controls.
Studying the activity of only eight of the 385 genes permitted investigators to accurately diagnose Sézary syndrome in patients with as low as five percent abnormal (Sézary) cells circulating in their blood. A panel of ten genes appeared to provide prognostic information, as it predicted a subset of patients that died of their disease within six months, regardless of their tumor burden. And one gene was seen to occur in about 70 percent of the Sézary patients but never in the controls, making it a highly specific marker for the malignant cells.
The research project was a collaborative effort between Dr. Showe and cutaneous T-cell lymphoma (CTCL) investigators Dr. Eric C. Vonderheid of Johns Hopkins University Medical Center and Dr. Alain H. Rook of the University of Pennsylvania Medical Center. Their work is reported in the June 2 issue of the Journal of Experimental Medicine and was supported by a research grant from the National Institutes of Health (NIH). With continued NIH funding, Dr. Showe plans to extend her collaborative work and study skin samples from patients with CTCL.
This research builds a foundation to identify genetic markers that will more accurately diagnose and predict the course of CTCL that, in the future, may help guide clinicians weighing treatment options for their patients. In addition, each of the genes identified may be a potential target for drug development, greatly expanding the field of possibility for future treatments.
If a doctor has determined that phototherapy is the treatment of choice for your condition, a home unit may be an option. If you are interested in exploring this possibility, it is something that you need to discuss with your doctor. The following companies are familiar with patients’ needs and have experience in insurance reimbursement assistance and getting payment towards home phototherapy equipment. They will assist you in getting pre-authorization and filing the insurance claim. (The links below are external and will open in new windows.)
National Biological Corporation
UVBioTek (formally PhototherapeutiX)
Ultralite Enterprises, Inc.
ICN Pharmaceuticals, Inc. has published a directory of PUVA providers that is available from the MFF. Daavlin, Ultralite Enterprises, Inc., PhototherapeutiX, and National Biological Corporation have also made the providers of UVA/UVB and narrowband UVB physicians available to the MFF. If you need help in finding a physician who provides these services, call the MFF office, or email us.
Therakos, Inc., in collaboration with the Mycosis Fungoides Foundation, will host a webcast symposium on cutaneous T-cell lymphoma (mycosis fungoides) on Tuesday, October 28th at 12 noon EST (11 am CST).
The symposium will last for one hour and include presentations from Dr. Madeline Duvic (M.D. Anderson Cancer Center in Houston) and Dr. Marie-France Demierre (Boston University School of Medicine). They will present an overview of CTCL, talk about the role of photopheresis, and also discuss upcoming early CTCL clinical trials.
Teleconferences are popular and easy ways for people all over the country (and the world) to get up-to-date information about their disease. Participation is free and you can listen to a teleconference in the comfort of your home or office. All you need is a phone to call into a toll-free number. This program will also let you log onto a website and watch a slide presentation by the speakers as you listen to them on the phone.
How can you get more information?
If you are on our mailing list, you will receive a brochure with detailed contact information. Call us at 248-644-9014 or log onto our website at: MFFoundation.org, where we will keep you updated.