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 with Mycosis Fungoides (MF)

“To anyone else living with MF: Please, advocate for your health. Find that fighting spirit, that strength.”

  • 2017: First symptoms appeared
  • 2018: Diagnosed and began treatment for Mycosis Fungoides
  • 2020: POTELIGEO treatment began
Read Lynn's Story

Lynn has been compensated by Kyowa Kirin for her participation in this video.

Lannie’s journey with Sézary Syndrome (SS)

“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.”

  • 2011: First symptoms appeared
  • 2013: Diagnosed and began treatment for Sézary Syndrome
  • 2014: POTELIGEO treatment began
Read Lannie’s Story

Lannie has been compensated by Kyowa Kirin for her participation in this video.

phone Explore the Mentor Program to connect with real patients like Lannie

Jeffrey’s journey with Sézary Syndrome (SS)

“I know I have cancer, but now I have something to look forward to again.”

  • 2010: First symptoms appeared
  • 2019: Diagnosed and began treatment for stage 4 Sézary Syndrome
  • 2020: POTELIGEO treatment began
Read Jeffrey’s Story

Jeffrey has been compensated by Kyowa Kirin for his participation in this video.

phone Explore the Mentor Program to connect with real patients like Jeffrey

Jeff’s journey with Mycosis Fungoides (MF)

“It’s easy to feel overwhelmed and give up. I’m grateful to my clinical care team, family, and friends for helping me to see a path forward, that there was hope.”

  • 2016: First symptoms appeared
  • 2019: Diagnosed and began treatment for Mycosis Fungoides
  • 2020: POTELIGEO treatment began
Read Jeff’s Story

Jeff has been compensated by Kyowa Kirin for his participation in this video.

Jim’s journey with Sézary Syndrome (SS)

“I know I’m not alone, and neither is anyone else living with Sézary Syndrome. We’re all going through this together.”

  • 2014: First symptoms appeared
  • 2017: Diagnosed and began treatment for stage 4 Sézary Syndrome
  • 2018: POTELIGEO treatment began
Read Jim's Story

Jim has been compensated by Kyowa Kirin for his participation in this video.

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 www.fda.gov/medwatch.

Please see full Prescribing Information as well as Patient Information.