Newsletters

Education and Support Events

In the last three months, we’ve had lots of activity in getting patients face-to-face with other patients. As much fun as it is to meet new people, it is even more fun to see people that have come to previous meetings and catch up on how they’re doing.

LA Support Group
In September, The Leukemia & Lymphoma Society, The UCLA Oncology Center and The Mycosis Fungoides Foundation co-sponsored a "Meet the Doctor" evening. Dr. Lauren Pinter-Brown, Clinical Professor of Medicine at UCLA, presented an overview of cutaneous lymphomas, including mycosis fungoides, lymphomatoid Papulosis and Anaplastic large cell lymphoma.

Thanks to Cheryl Abe, LCSW and Frini Li-Chiu, LCSW from the UCLA Oncology Center as well as Robin Shlien, Community Outreach Manager from the Leukemia-Lymphoma Society for pulling together all the details.

Washington Face-to-Face
When Judy travels to meetings, she puts a message out on the CTCL-MF listserv asking if anyone wants to meet for lunch. This is a great way to get to meet and talk to patients in an informal setting. Here’s what she had to say about this "special group".

This is the first time we’ve ever had an all female group for lunch. Let me tell you, it was also the longest "lunch"! What a dynamic group of women.

LRF Educational Forum
Kudos to Sue Bliss, Executive Director of The Lymphoma Research Foundation Educational Forum, and her staff. They once again put on a great educational forum. Melanie Smith, Director of Public Policy, introduced an advocacy training program which was very informative. Jennifer Mills in her new position, Director of Patient Education, and Carolyn Bell, Director of Patient Services, coordinated the dedicated people of LRF in their efforts to bring quality information to lymphoma patients.

Dr. Richard Edelson, Director of the Yale University Comprehensive Cancer Center, presented an outstanding talk on cutaneous T-cell lymphoma. The sessions were audio taped, and if you are interested in getting a copy, they are $7.00 + $1.50 shipping and handling. They can be ordered from Network Communications over the internet at: www.swiftsite.com/stloa2003. Phone number: 800-747-1426. The number of the tape is: LF-N07.

Pittsburgh Support Group
Sue McCann, who is the Photopheresis Coordinator at the University of Pittsburgh Medical Center, managed to get 50 patients, friends and family members together for the Brian V. Jegasothy Support Group for CTCL in October, which turned into an educational forum. She gave a presentation on the Nursing Perspective on CTCL.

Dr. Larisa Geskin, Director of Cutaneous Oncology, presented an overview followed by Dr. Frank Strobl from Therakos Pharmaceuticals, who described photopheresis (ECP). Khanh Bui, from Ligand Pharmaceuticals, gave a product overview and Judy Jones gave a patient prospective and brought everyone up-to-date on the Mycosis Fungoides Foundation activities.

Thanks to Therakos and Ligand for providing us with lunch and a chance to get acquainted with other patients. Linda Sharp and Joyce Grater facilitated the caregiver breakout and Judy Jones facilitated the patient support group.

These meetings provide an excellent opportunity for people to learn more about this disease and the treatments that are available.

The Brian V. Jegasothy Support Group for CTCL is a yearly event. Please join us next year!

Webcast
The Mycosis Fungoides Foundation, in collaboration with Therakos, Inc. hosted a live webcast on mycosis fungoides, Sézary syndrome and other forms of CTCL. Drs. Madeleine Duvic of the M.D. Anderson Cancer Center and Marie-France Demierre of the Boston University Medical Center discussed treatments including photopheresis, upcoming clinical trials, and other important issues concerning this disease.

Joe Lawrence, a photopheresis patient, shared his perspective in his short presentation. His clear understanding of treatment options, combined with his personal experience, made Joe’s contributions to the presentation valuable.

Participants e-mailed questions that were answered in a question and answer period afterwards. We received more questions than we could answer in our allotted time, so we are going to record a supplemental question and answer period. Both the webcast and supplemental questions will be assembled on a CD, so that it can be watched off-line. We will have more information available on how to obtain this on our website and in our next newsletter.

To watch the webcast, go to our website at: www.mffoundation.org and follow the directions. We are fortunate to be able to bring speakers of this caliber into your homes to give information and answer questions. Thanks to Therakos, Inc. for the tremendous time and effort that went on behind the scenes to put this together. Without their generous grant, this would not have been possible.