- Cutaneous T-cell lymphoma (CTCL) is a relatively rare type of non-Hodgkin lymphoma.
- Symptoms affect the skin, causing rash-like patches that can easily be mistaken for psoriasis and eczema.
- The risk for the disease increases with age, often affecting people from their mid-40s through their 70s.
- Yale Medicine doctors offer photopheresis, which blood is treated with ultraviolet light.
- Other treatments can include bexarotene, one of the two ingested drugs approved for CTCL and doses of interferon alpha.
Nothing is more frightening than hearing the word “cancer” from your doctor, particularly after months of guesswork to get to that diagnosis. Unfortunately, that’s often the case for people who develop cutaneous T-cell lymphoma (CTCL), a relatively rare type of non-Hodgkin lymphoma that can be difficult to diagnose. It has symptoms that affect the skin, causing rash-like patches that can easily be mistaken for more common conditions such as psoriasis and eczema.
That’s how it was for Sabrina Girard, who, in addition to having those confusing symptoms, is younger than the average CTCL patient. The risk for the disease increases with age, often affecting people from their mid-40s through their 70s, but Girard was just 34 in early 2011 when she noticed a rash developing on her skin and checked with her primary care doctor in upstate New York. A rash can be any number of things, so they eliminated some possibilities and kept an eye on it for a few months. When it didn’t go away—and instead began to spread—the doctor referred her to a dermatologist.
“It took a while to figure it out—probably eight months from when I started to get signs until they knew exactly what it was,” Girard says. When her dermatologist realized it was probably CTCL and saw it was getting worse, she was referred to Michael Girardi, MD, program director of the Department of Dermatology at Yale Medicine.
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Confronting cutaneous T-cell lymphoma
“Her disease was very advanced from the outset,” Dr. Girardi says. “It was all over her skin. Virtually her entire body was impacted when I first saw her. She was very red and had skin flakes falling off by the minute. Her skin was swollen, her face was swollen. And it was progressing pretty quickly.”
In January 2012, Girard began treatment for Sézary syndrome, one of the most advanced form of CTCL, in which the lymphoma is not only affecting the skin but also the blood and the lymph nodes. It was a devastating diagnosis for Girard, one that also had a big effect on Dr. Girardi and his staff, he says.
Although CTCL has a better prognosis than most types of cancer and is very treatable, he says, it can advance quickly and aggressively. That idea was particularly upsetting because Girard was a young mom of two small children.
“It was very striking to see someone in the prime of her life with that severe a disease,” he says. “It was a particularly emotional case for everyone involved.”
Girard says that level of interest in her care made it easier to make the monthly two-day trips to New Haven, a three-hour drive each way from her home, where she left behind her husband and her daughter and son, then 3 and 6. Her treatment was initially a combination of photopheresis, through which blood is treated with ultraviolet light; bexarotene, one of the two ingested drugs approved for use in the treatment of CTCL; and doses of interferon alpha, which activates the immune system.
After about a year of intensive treatment, Girard began to see results. Her skin had almost completely cleared, and by January 2014 there was a total elimination of the leukemia from her blood. Yale Medicine doctors adjusted her doses and treatments to the point where she was only doing photopheresis—and that only every seven weeks instead of every four weeks.
“You don’t see results quickly, which is probably discouraging for a lot of people,” Girard says. “It took maybe six months before I felt like something was really happening. That’s the hardest part—waiting, and walking around like that.”
Unfortunately, CTCL can often be a lifelong issue; even patients in complete remission need to be monitored closely and may require treatments after an initial, successful round. So when Dr. Girardi saw the return of the disease to the blood and lymph nodes last year, he adjusted her treatment to be slightly more intensive. But these days the outlook is promising.
“This was a huge response,” Dr. Girardi says. “When I first met her, her quality of life was terrible. It was very hard to go through each day with the amount of disease she had. To have it under such control gives us a great sense of reassurance.”
‘I feel totally normal now’
It has now been almost five years since Girard noticed the slight rash that turned out to be CTCL. She continues to go to Yale Medicine monthly for two days of photopheresis treatment, but her symptoms are no longer affecting her life as they had. She is back to work full-time, and she has the energy to keep up with her 8- and 11-year-old kids.
“I feel totally normal now,” she says. “I’m tired just like any other normal person, but as far as I look and feel, I feel like I did before all this happened. The only time I really think about it is when I go to New Haven. It’s not on my mind all the time like it used to be.”
Girard encourages others who are diagnosed with CTCL to do exactly what their doctors say and, most important, to be patient. She knows how hard it can be to wait while nothing seems to be helping. Of course, she had something that was worth the wait: her children.
“My main focus was to get better because I’m a mother,” she says. “You have to find something that you want to live for and fight for, and focus on that instead of what you look like and how you feel. It’s a windy road, there are a lot of bumps and hills, and it’s a slow process. But thinking of my kids helped me. Because they were little, I couldn’t lie down and just feel upset. I had to get up every day and be their mom.”