MFF Welcomes New Medical Advisory Board Members
The Mycosis Fungoides Foundation is proud to welcome two new members to the Medical Advisory Board.
Lynn Wilson, M.D., the Director of the Total Skin Electron Beam Program for cutaneous lymphoma Yale University School of Medicine, has been involved in obtaining grants for research of CTCL, and is a welcome addition to the MFF Medical Advisory Board. His work includes both clinical research and education initiatives.
Lars French, M.D., an associate professor of dermatology at Geneva University Hospital, is a clinician-scientist engaged in dermatological research, and has won honors for his research. He is motivated to support the MFF in the education of patients and caregivers.
Both Lynn and Lars are motivated to support the MFF’s efforts to promote awareness and education, advancing patient care, and facilitating research. We are pleased to have them join us, and commend them for their selfless dedication to the patients and families of CTCL patients.
by Judy Jones, MFF Executive Director
Spring is a time of renewal and growth and the MFF is in that frame of mind. Five years ago we set in motion an organization to provide patients with information about their disease. We have done that and a whole lot more. We provided a booklet for patients, established a website and published a newsletter to disseminate educational materials to patients, family members and health care providers. We continue to forge strategic alliances with medicine, industry and government to advocate for and support the needs of patients.
As we look at what still needs to be accomplished, it is obvious that we need more help. As Claudia mentions later in the newsletter, “we’re just ordinary people.” We have ordinary lives just like you. Many of you have asked how you can help and we haven’t been very good at getting back to you. We are going to improve this. There are many things that you can do from your home. We are in the process of listing our needs and positions that volunteers can fill. We will also post this information on our website so if you are looking for ways to be a part of the organization that is working to find a cure for this disease, let us know.
Being a grass-roots organization means that we started with very little money and a lot of enthusiasm. As Margie stated in her letter, she was surprised that we didn’t have a lot of financial backing. We have been fortunate to have Ligand (Targretin Gel, Targretin Capsules and Ontak) and Therakos (Photopheresis) that have provided us with educational grants for this newsletter and other special projects. Our main operating expenses come from members like you who not only join the organization, but also donate a little extra to keep us going. Your donations mean a lot to us. We have received a sizable donation in memory of a patient who will never benefit from this person’s generosity. Many of you will. You will be hearing more about this in future issues.
A question that keeps coming up is, "Why are we called the Mycosis Fungoides Foundation"? We actually provide services for many other diseases (Sezary syndrome, lymphomatoid papulosis and other cutaneous lymphomas). It is time to update the name to give people an indication as to what we do. We will be looking into a name change in the next couple of months and would like your input. Send us your comments and ideas.
We always like to hear about what you like (and don’t like) about what we are doing. How have we helped you? What else would you like to see us do? This is your organization. Help us to make it better!
by Ravi Ubriani, Cutaneous Oncology Fellow, University of Pennsylvania
Cutaneous T-cell lymphoma (CTCL) is a complex disorder which often takes a significant amount of time to diagnose. Various studies indicate that the average time from first appearance of symptoms to confirmed diagnosis of the disease range from two to seven years. This delay can lead to frustration for both a patient suspected of having CTCL and his or her physician.
There are two main reasons why the diagnosis of CTCL can take time to confirm. The first is that the disease can take many different forms in the skin. Lesions can be flat spots, raised areas, or large lumps. The disease can appear differently in people with different levels of pigmentation. CTCL is often initially misdiagnosed as a much less rare condition such as eczema, psoriasis, or an allergic reaction. It is only after patients do not respond to appropriate treatments that alternative diagnoses are considered.
Even once CTCL is suspected by a physician, the diagnosis can be difficult to make definitively. There is no single test that will be positive for CTCL every time. The most useful test that can be performed is a skin biopsy, in which a small piece of skin is examined under a microscope by a pathologist. This trained specialist can look for features consistent with CTCL. However, lesions that appear very similar on the skin can appear very different microscopically. Many patients require multiple biopsies at three month intervals before a diagnosis is made. Each biopsy provides a limited view of the processes that are occurring in the skin.
The need for multiple sequential biopsies can be very exasperating and difficult to understand for patients. Some pathologists have compared making the diagnosis from a single biopsy to glancing at a party through a keyhole. While one glance might give you some sense of what kind of party it was and who was in attendance, the more times you could look, the more accurate your estimate would become. In the same way, the more times a pathologist can microscopically examine the skin, the higher the chance of making the diagnosis of CTCL.
Besides the skin biopsy, there are other tests that your physician can perform. A type of DNA test can be performed to look for a population of immune cells dividing too often in the skin or blood. This test is called a T-cell gene rearrangement study. Another test, called flow cytometry, looks for patterns in immune cells typical of CTCL. A Sézary prep examines the white blood cells to look directly for malignant cells. Testing for a virus called HTLV is sometimes performed based on a patient’s history. A lymph node biopsy can sometimes aid in the diagnosis.
The diagnosis and care of CTCL often involves internists, dermatologists, and oncologists. For this reason, it is often necessary to see a clinic specialized in the care of CTCL. At such a center, there are often pathologists specially trained to examine skin. Certain tests may also only be available at such specialized clinics. Today there are many effective treatments for CTCL, and it is important to stay positive and remain patient, even when multiple and repeated tests are required.
Glossary of terms:
skin biopsy: a procedure in which a small piece of skin (about the size of a pencil eraser) is removed with a circular blade and examined under a microscope. This is done in the office by a dermatologist. It takes about five minutes and usually requires one to two stitches.
T-cell gene rearrangement study: a DNA-based test that looks for the presence of a larger than usual population of one type of immune cell. This can be done on either a skin biopsy or a blood sample.
flow cytometry: a blood test that looks for molecules on the surface of white cells that CTCL cells usually express.
Sézary prep: a blood test that directly looks for the CTCL cells
HTLV: a virus endemic to the Middle East and Japan that can cause a variant form of T-cell lymphoma. The blood can be tested for this infection.
lymph node biopsy: a procedure in which a small piece of lymphatic tissue is removed and examined under the microscope. A lymph node is part of the immune system. There are different ways this test can be performed, spanning a range of intensity. Your doctor can discuss the various options with you
Barry Kacinski, M.D., from Yale University School of Medicine, passed away in November at the age of 50.
Kacisnski was a member of the Mycosis Fungoides Foundation Medical Advisory Board. His experience with radiation in treating CTCL was valuable in his review of information on radiation therapy for the MFF website.
Although Kacinski shared his talents at a number of institutions, he most recently treated patients and taught at Yale since 1983 in the departments of therapeutic radiology, dermatology and obstetrics and gynecology.
According to Yale University School of Medicine, "His research centered on improving the understanding and treatment of cancer. His studies were funded by highly competitive research grants, including the American Cancer Society, the National Cancer Institute, the Donaghue Medical Research Foundation, and the Leukemia Society."
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.
In Honor of (November ‘03-March ‘04):
Joseph S. Lawrence Annandale, NJ
Marilyn Eccles Sidney, ME
Claudia Day Vienna, VA
Robin Silverman New York, NY
Donna Horman East Meadow, NY
Julia Durrance Ocala, FL
Suzanne Rodriguez Clarks Summit, PA
Dr. & Mrs. Aubra Branson Knoxville, TN
Dan Goodman Bethesda, MD
Elizabeth Knobler New York, NY
Nancy Needham Coatesville, PA
In Memory of (November ‘03-March ‘04):
Doris Ann Delmarmo West Orange, NJ
Lawrence Longcore Oxford, MI
Gertrude Yoffa Swampscott, MA
Thomas Homulka Mt. Pleasant, PA
Lee Cohen Philadelphia, PA
Paul Danforth Sebastian, FL
Kay Frances Cooper Chillicothe, OH
Dr. George Fillmore Knoxville, TN
Samuel Frank New York, NY
Maud Wynn Gober Gulf Breeze, FL
Mary Etta Conella Alachua, FL
George E. Wells, Sr. Houston, TX
Andrew Weinberg New York, NY
Donna Anderson King of Prussia, PA
Betty Gentile Maspeth, NY
The Mycosis Fungoides Foundation follows issues that affect patient care. These are the issues we are currently supporting:
Medicare and Phototherapy: The Medicare reimbursement rates for phototherapy dropped dramatically this past year. In some cases, it was costing physicians to provide treatment. We are urging Medicare to consider increasing the reimbursement rates back to the 2003 levels. This will enable physicians to continue providing phototherapy treatments for our patients.
Orphan Drug Tax Credit: We are supporting this proposal that will provide critical incentives to biotech and pharmaceutical companies to continue their work in developing therapies for small patient populations such as ours. By reducing the costs of developing medicines for rare diseases, the credit allows companies to develop products that would otherwise not make sense financially.
by Claudia Day, MFF Board Member
Two years ago, when I learned that Judy Jones was looking for volunteers to join the newly forming board of directors, I remember sending her an email asking something like, "Are you looking for ordinary people or someone with specific qualifications? I would like to volunteer, but I don’t want to take a space that someone more qualified could fill." I had already been working with Judy on a fundraising idea, so I was delighted when she wrote back to say that I wasn’t ordinary and to send in my application.
It took a while to get started, but finally the board held its first meeting in November 2002, and has met regularly (in person or by conference call) ever since then. We’ve accomplished far more than I ever expected we would, and I’m amazed at how much an ordinary person such as I have been able to contribute.
Why did I join the board? Because I am going to have this disease for a long time. Because I do have some time to devote to it. Because I’m embarrassed to tell people the name of my disease and this offered a chance to change it. Because I’m inspired by the dedication of Judy Jones, as well as the other board members.
Because I can.
The truth is, we’re pretty much all "ordinary" people on the board (no offense intended to the others). What sets us apart is the time and effort we’ve volunteered. What is NOT ordinary is the collective accomplishments of this ordinary group of people. But the current board is too small to do it all. If you would like to give it a try, please go to the MFF website and fill out the application, or contact Judy for more information.
We have work to do.
“Ask the Experts” is a regular feature of the MFF Forum. If you would like a question answered, please send it to: MFF Forum, PO Box 374, Birmingham, MI 48012-0374. Or, send us an email.
The following question was answered by Stuart R. Lessin, M.D. Director of Dermatology, Fox Chase Cancer Center, Philadelphia, PA
CTCL: Is it a skin cancer?
Cutaneous T-cell lymphoma (CTCL) is sometimes referred to as a skin cancer because it is a cancer that affects the skin, but it is not a precise use of the term “skin cancer.”
CTCL is a lymphoma, or cancer of lymphocytes, the white blood cells that normally fight infections and are involved with immune functions of the body. Lymphocytes are housed in the lymph nodes and circulate throughout our body, including the skin. Most lymphomas are systemic and result in cancerous growth of the body’s lymph nodes. In CTCL, the cancerous lymphocytes grow in the skin.
Skin cancer is a term that describes cancer that develops from the cells that occupy the skin. These include epidermal cells and melanocytes (pigment cells). Epidermal cells can transform into squamous cell carcinoma or basal cell carcinoma. Melanocytes can transform into malignant melanoma. Thus, squamous cell carcinoma, basal cell carcinoma and malignant melanoma are all defined as skin cancers.
Ft. Lauderdale Face to Face Meeting
On a warm day in Ft. Lauderdale, Florida, this group met and discussed what it was like to have MF in the family. It is always interesting to hear some of the same questions that people have and some of the funny stories we are able to share. Talking to others that share some of the same experiences as I do help me remember that I’m not in this alone. Marlene mentioned that she was a writer. A couple of weeks later, she sent us the verse that is published on the first page of the newsletter.
Boston Face to Face Meeting
The Boston face-to-face meeting was a little unusual, as two of the people attending weren’t from Boston! Susan, from New York and Debby from Magnolia, Massachusetts were going to be in town for other reasons and were able to work their schedules around a lunch with us. Gene, Dorothy and Ann joined us from the Boston area. Susan brought us up-to-date on her PhD dissertation: The Experience of Living with a Rare Disease--Mycosis Fungoides. Debby has now been to three different face-to-face meetings.
A new group called the Lymphoma Coalition has been formed in order to consolidate efforts of lymphoma patient advocacy group worldwide. The Lymphoma Coalition aims to raise global awareness of lymphoma, build partnerships among Lymphoma Coalition members, and encourage the formation of new lymphoma groups around the world.
The Lymphoma Research Foundation, one of the founding members of the Lymphoma Coalition, envisions lymphoma groups worldwide working together to fill in the gaps in patient care and awareness.
According to Lymphoma Newsline, “One of the key support mechanisms provided by the Lymphoma Coalition will be a dedicated website offering easy access to help and information to people throughout the world, www.lymphomacoalition.org. The website will be available in English, Spanish, French, German, and Italian.”
The Mycosis Fungoides Foundation is proud to join and support the efforts of the Lymphoma Coalition.
The Mycosis Fungoides Foundation, in partnership with the International Society for Cutaneous Lymphomas, has organized a Cutaneous T-cell Lymphoma (CTCL) Satellite Symposium. The goal of the symposium is to promote awareness, advance patient care and facilitate research in CTCL by providing an annual venue to highlight new physicians and scientists to the field and new advances in the treatment of CTCL.
The second annual CTCL Satellite Symposium will be held at the Society of Investigative Dermatology annual meeting, Friday, April 30, 2004, in Providence, Rhode Island. Speakers this year will include:
Eric C. Vonderheid, M.D.
Narin Apisarnthanarax, M.D
Christiane Querfeld, M.D.
Eunice Tsai, R. Talpur, M.D.
Larisa Geskin, M.D.
Sam T. Hwang, M.D., Ph.D.
Ph.D., Maria Wysocka, M.D., Ph.D.
Stephen Richardson, M.D.
Rajnish Anand Gupta, M.D.
Stuart R. Lessin, M.D.
Robert Anolik, M.D.
Jo-Ann Latkowski, M.D.
Kei-ichi Yamanaka, M.D.
Carole Berger, Ph.D.
The MFF will present the Young Investigator Award, which recognizes an individual who is exhibiting exceptional and consistent research in the field of CTCL and related diseases.
American Academy of Dermatology Annual Meeting: 15,000 individuals from around the world traveled to Washington, D.C. in February for their annual meeting. MFF was in attendance at twelve different sessions on CTCL. During this meeting, we also exhibit with the Coalition of Skin Diseases to provide physicians access to information about the different diseases and the type of support they can receive from patient advocacy groups.
Dermatology Nurses’ Association Annual Convention: Over 700 members gathered in Orlando in March for their annual meeting. A pre-conference Phototherapy Workshop kept attendees busy from 8-5. There were outstanding sessions on all aspects of dermatology nursing as well as sessions more specific to our disease and treatments. Of particular interest was Susan Booher’s (National Cancer Institute) presentation on, "Mycosis Fungoides: Recognizing the Difference". She discussed history, clinical aspects and appropriate treatment options for the different stages. Judy Jones followed with an inside view into the patient’s perspective. Sue McCann’s (University of Pittsburgh) session on "Photopheresis and Dermatology: Crossing Paths", reviewed extracorporeal photopheresis therapy as well as addressing the issues of nursing care and patient education.
In February, the Coalition of Skin Diseases (CSD) along with members of the American Academy of Dermatology Association (AADA) and the Society of Investigative Dermatology (SID) went to Capital Hill to encourage increased federal funding for skin research. This is necessary if we want to maintain the research that is currently being funded as well as continue to look at promising new research opportunities. As members of the CSD we support these efforts.
If you are interested in becoming involved in advocacy issues, let us know. There are other things you can do from home if you are not able to go to Capital Hill.