See Lannie’s journey with Sézary Syndrome (SS)
Lynn is a real patient living with MF.
These are stories from real patients who are sharing their experience living with CTCL and being treated with POTELIGEO. These videos represent their experiences at the time the video was recorded. Given the nature of CTCL, experiences may change over time. Individual results may vary. These patients have been compensated by Kyowa Kirin for their participation in these videos.
Lynn’s journey began in her late 30s, when she noticed red blotches on her chest. Her primary care doctor thought she had a rash and prescribed a topical antibiotic. But after a few days, her symptoms didn’t improve.
A friend of hers has a sister who is a dermatologist, so Lynn sent her photos of her skin. She hadn’t seen anything like it before. So Lynn decided to see another dermatologist, this time in person. At that first appointment, they did a biopsy of areas under her arm and on her inner thigh.
They said she had lupus, but that diagnosis didn’t seem to align with her symptoms. So she saw a third dermatologist, who told her that she had Mycosis Fungoides (MF). He explained that it was a rare type of cancer called cutaneous T-cell lymphoma (CTCL), and he referred her to an oncologist.
“I walked out of the clinic that day, numb. I asked myself, ’Why me? What did I do to deserve this?’ But the universe was silent. And I felt alone.”
Hear from real patients about their MF & SS treatment journey.
The oncologist took a conservative approach to treatment, and Lynn happened to have plans to travel to Barbados. She always loved the beach, and her dermatologist thought the trip might be good for her. At that time, her symptoms weren’t affecting her much. “Okay,” she thought, “I can do this! Cancer isn’t so bad when you’re treating it with a trip to the beach.”
But then her mindset changed. As the months passed, Lynn's skin became extremely itchy. It itched, burned, and became covered in scales. “I was uncomfortable in my own skin every day. And I was scratching so intensely that my skin started bleeding.” She called her oncologist and made the next available appointment, which ended up being a 4-month wait.
The pain was unbearable, and the itch was deep and inescapable. “I felt completely lost. I was on the brink of giving up. I’d maintained a healthy diet and exercised regularly my entire life, doing all the things I was supposed to do. But fate had other plans. And for the first time in my life, I had no power—no strength—of my own.”
By the time her next appointment arrived, she felt like a shell of herself. She was hoping for a new treatment plan, but instead, her oncologist gave her a shot of steroids. She understood that the steroids could help her in the short term, but she wanted an approach more tailored to her needs. So she decided to take a bigger role in her health journey. She joined a group on social media for people with similar experiences and learned from them very quickly how important it was to advocate for the right care.
She moved to Atlanta to help a friend who was also sick with her own illness. They were both thankful to have each other to rely on, but the best part of her move was seeing her new oncologist and her new dermatologist. Knowing she had tried other therapies without success, they discussed the potential risks and benefits of POTELIGEO and decided it might be a good option for her.
She started 60-minute infusions once a week for 5 weeks, then went to an infusion every 2 weeks. After a few weeks, she was itching less, and her skin was not as red. She felt encouraged. She felt like she could finally be herself without the burden of severe symptoms hanging over her. This is Lynn’s experience. Individual response to treatment with POTELIGEO varies.
While she is not cancer-free, POTELIGEO has made living with Mycosis Fungoides much more manageable for Lynn. Working to find the right doctors and the right treatment had been worth it. Now she’s back to taking care of herself and feeling independent.
“I had to work to find the right doctors and the right treatment for me. But in the end, it’s been worth 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