See Jeffrey’s journey with Sézary Syndrome (SS)
Lannie is a real patient living with SS.
During her morning routine before work, Lannie noticed a red rash on her face. Lannie is a nurse, and conveniently worked in the same building as her primary care physician. So, she stopped in to have it checked. Her physician thought the rash was unusual, but nothing initially seemed to raise much alarm.
Perhaps it was something she ate, or a reaction to makeup or detergent, the doctor proposed. After running through a long list of potential conditions or causes, her doctor recommended that Lannie try over-the-counter medications or use ointments to treat the rash.
Hear from real patients like Lannie about their MF & SS treatment journey.
Two months later, the rash had worsened and was spreading across Lannie’s entire body. Her primary care physician was concerned and referred her to a dermatologist. Over the course of a year, the dermatologist ordered multiple biopsies and prescribed steroids and light therapy.
But Lannie still struggled with her undiagnosed condition. Her rash became itchy and uncomfortable—even painful—and her hair began to fall out. Cracks appeared on the soles of her feet, sometimes making walking difficult. After months of treatment from her dermatologist, it seemed as if nothing was having an effect on the strange red rash. What’s more, none of the exams and biopsies seemed to show what Lannie’s condition even was.
Finally, after her annual mammogram screening, Lannie received a diagnosis. Her screening showed enlarged lymph nodes, which led her dermatologist to suspect that Lannie had a rare form of blood cancer called cutaneous T-cell lymphoma (CTCL), and he quickly referred her to an oncologist.
Lannie’s oncologist ordered extensive testing to confirm the dermatologist’s suspicions. When the time came for the doctor to deliver the difficult news, Lannie could already guess the diagnosis. “My doctor entered the room,” said Lannie, “and his face told me everything.” Lannie’s oncologist confirmed that she had Sézary Syndrome, a rare form of CTCL that affects the skin, blood, and in some cases, other organs.
At first, Lannie was treated with an oral chemotherapy drug, interferon injections, and photopheresis. Unfortunately, her condition continued to decline. Her symptoms worsened, and tests showed that tissue and cell damage was escalating inside her body.
Lannie’s oncologist referred her to a physician who was initiating a clinical trial for POTELIGEO. After discussing the potential side effects and benefits of this new treatment with her doctor, Lannie began POTELIGEO treatment in May 2014. She received a weekly infusion for the first 5 weeks before moving to one infusion every 2 weeks thereafter. Lannie experienced chills, headache, fever, and fatigue after her first infusion. In response, her doctor slowed down her future infusions so that they took 2 hours instead of 1 hour, and she was premedicated with acetaminophen and an antihistamine. After her fourth infusion, Lannie began to notice improvement in her skin. As treatment progressed, her rash cleared across most of her body, and her lab work would show no sign of Sézary cells in her blood. This is Lannie’s experience. Individual response to treatment with POTELIGEO varies.
“9 years later, here I am—a wife to a wonderful husband, a mother of 2, a grandmother, and still working as a practical nurse 2 days a week at a medical center, making every moment a special one.”
Lannie is still treating her Sézary Syndrome, but her condition remains under control. The redness and flakiness from her rash has decreased significantly, and the soles of her feet healed. Today, she enjoys spending time with her husband, her children, and grandchildren, and has even returned to work part time as a practical nurse at a local clinic in Ohio. She is grateful for the treatment she received from her care team and is invigorated by the strength she found within herself to face her cancer. “It took a while to realize that it was up to the doctors to work on saving my life,” says Lannie, “but it was up to me to live it.”
“It took a while to realize that it was up to the doctors to work on saving my life, but it was up to me to live it.”
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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