Forum, Fall 2012
11
Medical Meetings Recap
Susan Thornton (rt) with YIA award
recipient, Dr. Rei Watanabea.
American Society of Clinical Oncology Annual Meeting - Chicago, June, 2012
This year’s theme was “Collaborating to Conquer Cancer”, providing multiple sessions on all cancers, latest research and collabora-
tive efforts between researchers, clinical practitioners and cancer advocacy groups. In addition to the scientific and clinical sessions,
there were opportunities for the cancer advocacy organizations to connect and share information. The CLF participated in multiple
advocacy sessions as well as joined forces with the BCCN Life Network, a fellow member of the Coalition of Skin Diseases in an
exhibit booth to promote awareness of our respective rare diseases. Many physicians from around the world stopped by the booth
inquiring about our organizations as well as the patients we support.
General highlights from the scientific meeting included:
• Start of clinical trial development based on gene bio markers vs. site of origin in order to learn more about how the cancer cells
are working and specifically where the source of the problems are coming from.
• An interesting trial that reported patient outcomes from the patient’s perspective and experience including patient preferences for
one drug vs. another. A survey was given to patients to report their own experience and perceptions of medication side effects.
The intention is to measure the clinical outcome AND the patients quality of experience with the clinical trial & drugs.
• Supportive care trials (for example, nausea & other side effects from therapies) for additional quality of life for patients. This
included a trial of using Cymbalta as an option for dealing with numbness side effects due to treatment regimens.
• Science is improving – we are seeing the next generation of gene sequencing for research and patient care.
• Reporting of negative outcomes is needed to help educate researchers on what doesn’t work and to inform future research so
unsuccessful trials aren’t repeated.
Society for Investigational Dermatology - Raleigh, NC, May, 2012
At the 75th Annual Society of Investigative Dermatology meeting in Raleigh, NC, many
exciting cutting edge research projects were presented. One of the highlights of the meeting
was a symposium dedicated to progress in CTCL research. Dermatologists, oncologists and
researchers from institutions all over the world gathered to discuss exciting research projects
happening in their respective laboratories. With the currently available technology in genome-
wide association studies, we are inching closer in decoding genomic clues in the skin and
blood of CTCL patients. These studies may allow clinicians to diagnose CTCL sooner than
is possible currently, and to differentiate CTCL from its many mimickers such as eczema,
psoriasis, and other inflammatory cutaneous disorders. On the therapeutic front, study results
from Stanford Cancer Center on the drug brentuximab vedotin, a recently FDA approved
medication for Anaplastic Large Cell Lymphoma and Hodgkin’s Lymphoma, shows promising
results in the treatment of Mycosis Fungoides and Sezary syndrome. Other exciting findings
include the creation of animal models of CTCL that may help in the development of more
specific and targeted CTCL therapies.
Much work still remains to be done to translate what researchers find in the lab and clinical
trials into actual patient therapy. This can only be done with the help of patients. Many of these
research studies require the analysis of skin and blood from current CTCL patients. Researchers
across the country and the world are able to learn more about the mechanism of CTCL because
of patients who participate in clinical trials or donate tissue for research. With the rare nature of this disease, the ISCL, USCLC
and other regional lymphoma organizations in the world will continue to collaborate to maximize efforts in improving the diagnosis,
management and treatment of CTCL patients.
In addition to the research presentations, the CLF has the privilege of awarding the Young Investigator Award, This year’s recipient
was Dr. Rei Watanabea gifted investigator on the Brigham and Women’s Hospital, Harvard Skin Disease Research Center The
topic of Dr. Wanatabea’s research presentation was “Mechanisms of Resistance of L-CTCL Patients to Alemtuzamab: What
Failure Can Teach Us.”
American Academy of Dermatology Summer Academy, August, 2012
CLF Development Director Kira Mann attended the American Academy of Dermatology Summer Academy in Boston. For the
first time at this meeting, a session on rare skin diseases from the patients’ perspective was held. The session was led by Dr. Amit
G. Pandya from the University of Texas Southwestern Medical Center and a CTCL specialist, and included presentations by
CLF founder Judy Jones who shared her story along with representatives from the Vitiligo Support International and the National
Foundation for Ectodermal Dysplasia. We were thrilled to be a part of this inaugural event that shared with the medical community
what life is like for patients dealing with a rare skin disease.
