Jeff is a real patient living with MF.

Jeff remembers being excited as he boarded the plane to Connecticut. He had the love of his life Sherri by his side who would be meeting his family for the first time and things were looking up. Until, that is, he began to feel a sudden and intense itching and burning on his thighs.

He went to a local walk-in clinic and was prescribed steroids that gave him some relief, but only temporarily. Days later, the rash came back with a vengeance, spreading to his arms and neck.

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This was the first stop in what would become a 3-year journey he describes as “suffering from the unknown,” a journey defined by misdiagnosis and endless rounds of steroids, eczema creams, and other treatments. Each time the rash returned, ultimately forcing him to step away from the things he loved to do.

Jeff had dedicated his life to coaching and refereeing football and basketball for teens. He enjoyed watching them grow over the years and believed that sports had a unique way of teaching important life lessons. As much as he loved supporting and encouraging kids, he grew self-conscious as his rash worsened, leading him to make the difficult decision to stop and focus on advocating for himself.

After making little progress with his initial dermatologist, his now fiancée Sherri convinced him to get a second opinion. With a new doctor came another year filled with biopsies and inconclusive results, yet Jeff kept pushing for answers.

Empathizing with his pain, his doctor reached out to his friend, a highly regarded immunologist and allergist, and Jeff sent him pictures of his skin. That evening, the doctor called Jeff and told him to get to a local cancer hospital first thing in the morning. It was there that Jeff finally received the devastating news—he had Mycosis Fungoides (MF), the most common form of a rare blood cancer called cutaneous T-cell lymphoma (CTCL).

After he got through the initial shock of receiving a cancer diagnosis, Jeff focused on working with his doctor to better understand CTCL and the path forward. He learned that while MF may begin with skin-only symptoms, 1 in 3 cases will advance beyond the skin into the blood and other areas, so it was important that they monitor his skin and blood.

Despite trying several treatments, including radiation, ultraviolet light therapy, and even a short stint in a clinical trial, Jeff’s lesions progressed to cover over 70% of his body and tests showed the cancer had advanced to his blood. That’s when Jeff’s doctor brought up POTELIGEO and said, “I believe this will help you.”

After a discussion of the benefits and risks, Jeff began treatment with POTELIGEO in January 2020, receiving weekly infusions for the first 5 weeks of treatment before moving to an infusion every 2 weeks. By his second infusion, Jeff started to see results and, over time, his skin and itching began to clear. This is Jeff’s experience and individual response to treatment with POTELIGEO varies.

Soon Jeff was back to refereeing and coaching sports, this time without people staring at the heavy rashes that used to cover his arms. While he has always stressed the importance of teamwork in sports, he now has a more personal appreciation for its role in getting him through the ups and downs that a cancer diagnosis brings.

Today, Jeff’s cancer remains well-controlled, though occasionally he has small red itchy areas that he treats with a cream. He has an unending appreciation for Sherri and his children, Jeffrey and Megan, for their continued love and support, and is proud that even at his most desperate times, he found the inner strength to persevere and fight to find answers. Things are once again looking up.

Jeff walking with his family
Jeff walking with his family

It’s easy to feel overwhelmed, to say it’s just not going to work and give up. I’m grateful to my clinical care team, family, and friends for helping me to see a path forward, that there’s hope.”

Want to share your POTELIGEO story?

If you or a loved one is interested in sharing your experience on treatment with POTELIGEO, please call 1-877-565-01321-877-565-0132, Monday through Friday, 9 AM to 9 PM ET

Call or see your healthcare provider right away if you develop any symptoms of the following problems or if these symptoms get worse:

  • Skin problems: Signs and symptoms of skin reactions may include skin pain, itching, skin blistering or peeling, rash, painful sores or ulcers in your mouth, nose, throat or genital area.
  • Infusion reactions: Signs and symptoms of infusion reactions may include chills or shaking, redness on your face (flushing), itching or rash, shortness of breath, coughing or wheezing, dizziness, feeling like passing out, tiredness, fever.
  • Infections: Signs and symptoms of infection may include fever, sweats or chills, nausea, flu-like symptoms, sore throat or difficulty swallowing, shortness of breath, diarrhea or stomach pain, cough.
  • Autoimmune problems: Some people receiving POTELIGEO may develop autoimmune problems, and some people who already have an autoimmune disease may get worse during treatment with POTELIGEO.
  • Complications of stem cell transplant: Patients who receive a stem cell transplant using donor stem cells (allogeneic) after treatment with POTELIGEO may experience complications that can be severe and lead to death. Your healthcare provider will monitor you for signs of complications if you have an allogeneic stem cell transplant.

What are the most common side effects of POTELIGEO?

The most common side effects of POTELIGEO include rash, tiredness, diarrhea, muscle and bone pain, and upper respiratory tract infection.

Before starting POTELIGEO treatment, tell your doctor about all your medical conditions, including whether you:

  • have had a severe skin reaction after receiving POTELIGEO
  • have had an infusion reaction during or after receiving POTELIGEO
  • have or have had liver problems including hepatitis B (HBV) infection
  • have a history of autoimmune problems
  • have undergone or plan to have a stem cell transplant, using cells from a donor
  • have lung or breathing problems
  • are pregnant or plan to become pregnant
    - It is not known if POTELIGEO will harm your unborn baby
  • are breastfeeding or plan to breastfeed
    - Talk to your healthcare provider about the best way to feed your baby during treatment with POTELIGEO

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

You are encouraged to report suspected adverse reactions to Kyowa Kirin, Inc. at 1-844-768-3544 or FDA at 1-800-FDA-1088 or

Please see full Prescribing Information as well as Patient Information.