Article previously published in the Cutaneous Lymphoma Foundation's Forum Winter 2012 newsletter.
As a dermatologist, I was trained to identify cutaneous T-cell lymphoma (CTCL) but never expected to make this area a major focus. My interest in CTCL really started when I diagnosed my father’s CTCL.
While visiting home in Kansas City, I was asked by my mother to look at my father’s persistent hip rash. I told him it looked like CTCL, and he underwent a biopsy that confirmed the diagnosis. He achieved excellent results after treatment with topical steroids and retinoids, narrow-band UVB, and extracorporeal photopheresis. Sadly, several years later he died from an unrelated condition.
Shortly after my father’s diagnosis I began working on a CTCL study with leading CTCL researcher Thomas Kupper, MD, Chair of the Brigham & Women’s Hospital’s Department of Dermatology and Director of the Harvard Skin Disease Research Center. Today, I am Director of the Division of Dermatology at the University of Kansas Medical School.
CTCL Signs and Symptoms
Most people with CTCL first present it to their primary care doctor or dermatologist. I tell patients to watch for:
Patients and caregivers who are concerned about a long-term rash should seek out the advice of a dermatologist with experience in CTCL. The best way to definitively diagnose CTCL is through a biopsy. A biopsy is a simple procedure involving the removal of a small piece of skin for testing to determine the presence or extent of disease. Blood tests, such as flowcytometry, can help determine what stage of disease is present.
To diagnose and treat CTCL, it helps to take a team approach. Patients and caregivers can benefit from treatment at centers with experienced specialists in critical roles. Key healthcare team members include:
Based on years of work with leaders in the field, as well as my own experience, I believe that combining treatments often works best. There are many relatively safer treatment options that can be used singly or combined.
Currently, some of these relatively safer treatment options include:
When these relatively safer therapies can no longer control progression, some patients can benefit from traditional cancer chemotherapies or bone marrow/stem cell transplantation.
Patients can also consider clinical trials. Click here for more information about CTCL clinical trials.
Finally, there is no need to fight CTCL alone. The Cutaneous Lymphoma Foundation is the leading provider of advocacy, education, and support for CTCL patients and caregivers. I also strongly encourage patients and their caregivers and supporters to directly contact their congressional representatives to advocate for continued funding for the National Institutes of Health (NIH) since that’s where the breakthroughs will originate.
Daniel J. Aires, M.D., J.D. is Director, Division of Dermatology, at the University of Kansas Medical School.