Article previously published in the Cutaneous Lymphoma Foundation's Forum Spring 2012 newsletter.
My focus on cutaneous T-cell lymphoma (CTCL) occurred during my fellowship in medical oncology at the National Cancer Institute (NCI). At the NCI, I worked with Paul Bunn, MD, Professor, James Dudley Chair in Cancer Research, University of Colorado, then a pioneer in CTCL research.
The first patient I treated was discovered to have a virus (HTLV1) that was determined to be a root cause of a CTCL variant: adult T-cell lymphoma. It was from this unique case that I developed a passion and interest in CTCL. Today I am the Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and Director of Cancer Programs at Northwestern Memorial Hospital. I am also on the Medical Advisory Board of the Cutaneous Lymphoma Foundation and heavily involved in CTCL research.
In the early 1980s, in collaboration with a distinguished dermatologist, Henry Roegnik, I created a CTCL clinic at the Lurie Cancer Center where patients are seen simultaneously by a multidisciplinary team including a dermatologist and oncologist. This makes it easier on the patient in terms of travel and ensures consistency in the messages they are receiving from our team. By treating CTCL in a team setting, it also allows us to streamline costs to the patient through joint decision making. I believe this should be considered best practice when it comes to the treatment of CTCL and it is what sets us apart from many other institutions.
Diagnosing Cutaneous T-Cell Lymphoma
Since CTCL usually presents as a spreading red, scaly rash, dermatologists are usually the first to diagnose and lead the treatment team. Individuals who are concerned about a long term rash are encouraged to seek evaluation by their dermatologist. The best way to definitively diagnose CTCL is through a biopsy, which is a procedure involving the removal of a small piece of skin for testing to determine the presence of disease. Blood tests, such as flow cytometry, can help verify disease in some instances and effect therapeutic decisions. CTCL progression is variable. Patients may progress slowly, rapidly, or not at all. The majority of patients will experience skin symptoms without any major internal complications. When a patient has been diagnosed with CTCL, it is important that they, as well as their caregivers, start gathering information about the disease. A few smart questions that a CTCL patient should ask their doctor include:
Becoming knowledgeable about the disease and knowing a few key questions, such as the ones mentioned above, will prove to be largely beneficial for the patient and caregiver.
Upon any cancer diagnosis, patients face a multitude of issues. Unfortunately, since CTCL manifests itself mainly on the skin, it can be emotionally and physically debilitating for some patients. Because the disease is associated with red patches, plaques, skin ulcers and tumors, it can change the way a patient looks, in turn affecting how he or she feels about themselves. Each patient will handle this differently and it is crucial to remain sensitive to this fact. It is important to note that many patients can still lead normal lives while treating CTCL and can remain in remission for long periods of time.
Treatment for CTCL will depend on the nature of presentation. A patient with a more aggressive form of the illness will require more intense therapy. Current therapies include skin directed therapies, such as topical steroids, retinoids, ultra violet light therapy and radiation therapy, as well as systemic therapies, such as oral retinoids and interferons. While these therapies can be used by themselves, it is often more effective to combine them. When these relatively safer therapies can no longer control progression, some patients can benefit from traditional cancer chemotherapies or bone marrow/stem cell transplantation.
There have been several recently approved therapies for CTCL including vorinostat and romidepsin, with many on the horizon. The monoclonal antibody, alemtuzumab, and the strategy of photopheresis have had major benefits for erythrodermic patients. A new anti-CCR4 directed monoclonal antibody is an exciting potential therapy that will start up in the clinical trial process soon and preliminary data looks promising. My team at the Lurie Cancer Center is looking forward to being involved with anti-CCR4 as it moves through the clinical trial process.
Caregivers play a very important role in the treatment of CTCL, as they contribute to the overall quality of life and well-being of the patient. It is critical for caregivers and loved ones to remain supportive and encouraging throughout the patient’s treatment. Because this role can be very time consuming and stressful, it is also important for the caregiver to make sure they take care of themselves during this difficult time.
I want to stress that there is no need to fight CTCL alone. I would encourage patients and caregivers to look into the Cutaneous Lymphoma Foundation, which is the leading organization providing advocacy, education and support for both CTCL patients and caregivers.
Steven T. Rosen, MD is the Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and Director of Cancer Programs at Northwestern Memorial Hospital. Dr. Rosen serves on the Cutaneous Lymphoma Foundation’s Medical Advisory Board and has participated in many educational opportunities, including Patient Educational Forums, provided by the Foundation.