See Lannie’s journey with Sézary Syndrome (SS)
Jim is a real patient living with SS.
It started with an itch. At first, Jim thought it would just go away. He chalked it up to something in the air, the heat of summer, or even a mid-life crisis, but it only got worse.
Over the next 3 years, he saw his primary care physician (PCP), dermatologists, and allergists who performed test after test with no relief. By then, the itching was head-to-toe and non-stop, even in his sleep.
He’d wake up to blood-stained sheets from scratching during the night. His red and inflamed skin began to thicken to form raised patches called plaques in some areas. After trying antihistamines, steroids, and even changing laundry detergents, Jim had enough.
Hear from real patients about their MF & SS treatment journey.
Jim found a new PCP and, at his first meeting, pleaded for help. “Look, I have something wrong,” he said. “I’m itching constantly. I need to figure out what’s going on.”
“I like a challenge,” his doctor responded. “Let’s figure it out.”
For the first time, Jim felt like someone had really listened, and it made a difference. He was eventually referred to a local university hospital for a biopsy and blood work. A week later, he finally had the answer: Jim had Sézary Syndrome, a serious form of cutaneous T-cell lymphoma (CTCL) that involves the skin, blood, and—in Jim’s case—the lymph nodes.
Jim’s tight-knit family provided the support he needed to face his diagnosis head-on. His wife, Susan, assured him that they would beat this together, going with him to his appointments, taking notes and asking questions. It was all overwhelming at first, but his doctors were convinced they could find the right treatment for him.
Over the next year, Jim went through a list of treatments. Some provided short-term relief, but nothing lasting, and he struggled with side effects. Eventually, he tried chemotherapy, which was hard on him physically. He took a leave of absence from work and, reluctantly, adjusted to relying on others for help. Yet, he didn’t lose hope.
Jim’s doctor told him about a new treatment that was not yet approved by the US Food and Drug Administration (FDA), but he was confident that POTELIGEO could be the treatment they were looking for. Jim began checking the FDA website every Monday for news on the drug’s status. Apparently, so was his son, Lucas, who was the first to tell him the news: “Dad, it’s approved!” Within minutes, Jim was contacting his doctor to find out when he could begin treatment.
After discussing the risks and benefits with his hematologist, Jim began treatment with POTELIGEO® (mogamulizumab-kpkc) in November 2018, receiving weekly infusions for the first five weeks of treatment before moving to a bi-weekly schedule. After the fourth infusion, he noticed that his skin was beginning to improve, but Jim’s first “Wow!” moment came when his bloodwork showed no sign of Sézary cells. For him, it was tangible proof that he was doing as well as he felt. This is Jim’s experience and individual response to treatment with POTELIGEO varies.
Today, Jim feels grateful for his family and to have found something that works for him.
“It was definitely frustrating to be searching for answers when I wasn’t even sure what the question was. Going through this has taught my family to keep fighting, to not give up hope.”
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If you or a loved one is interested in sharing your experience on treatment with POTELIGEO, please call 1-877-565-0132, Monday through Friday, 9 AM to 9 PM ET