A Game-Changing Diagnosis of CTCL: Jeff’s Story

A Game-Changing Diagnosis of CTCL: Jeff’s Story Jeff (second from right), living with CTCL

How a rare cancer changed a coach’s life and the treatment that got him back in the game

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.

“My legs felt like they were on fire and I started scratching them, practically ripping at my jeans,” recalls Jeff. “After we landed, I ran to the restroom and was shocked to see that about 90% of both thighs was covered in a stinging red rash.” A rash that had not been there only hours before.

He went to a local walk-in clinic and was prescribed steroids which gave him some relief, but only temporarily. Days later, the rash came back with a vengeance, spreading to his arms and neck. This turned out to be the first stop in a three-year journey that 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. He never dreamed it could be cancer.

Full court press

Jeff had dedicated his life to coaching football and basketball for teens. He believed that sports had a unique way of teaching important life lessons. He loved supporting and encouraging kids, but now he had to prioritize advocating for himself.

After making little progress with his initial dermatologist, his now fiancée Sherri convinced him to get a second opinion.

“Over half of my body was bleeding from itching. Crying with pain, I pleaded with my dermatologist to make it stop.

With a new doctor came another year filled with biopsies and inconclusive results, yet Jeff kept pushing for answers. The breakthrough finally came when a specialist saw pictures of his skin and told him to get to a local cancer hospital immediately. 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).1

A new playbook

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 although it is a blood cancer, CTCL first appears on the skin as red rashes, patches, plaques or tumors which is why it is often mistaken for more common skin conditions like eczema or psoriasis. As a result, diagnosis can be delayed by years or even decades.2,3

Most patients with CTCL will be classified as having MF or Sézary Syndrome (SS). While MF may begin with skin-only symptoms, it can progress into the blood, lymph nodes and other organs.1 In fact, one in three cases of MF will advance beyond the skin, reinforcing the importance of blood testing at diagnosis and throughout treatment.4,5 In SS, the cancer has already progressed from the skin into the blood, and in some cases, to other areas of the body.6

Increasing blood burden in CTCL is associated with poorer prognosis. It’s important to be aware of the potential for blood involvement and to advocate for routine blood testing.4

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 was prescribed POTELIGEO® (mogamulizumab-kpkc), a targeted treatment for adults with MF or SS who have tried at least one prior systemic treatment that didn’t work or in whom the disease has come back.7

By his second POTELIGEO treatment, Jeff started to see results. His skin and itching began to clear up and soon he was back to refereeing and coaching sports, this time without people staring at the heavy rashes on his arms. This is Jeff’s experience based on about one year of treatment and individual results vary.

In the clinical trial, people taking POTELIGEO experienced control over their disease for more than twice as long as those taking the comparator treatment vorinostat (median of 7.6 months vs 3.1 months, respectively) and, of people in the trial who responded to treatment, response lasted 54% longer in people taking POTELIGEO compared with those taking the comparator treatment (median of 13.9 months vs 9.0 months, respectively). The most common side effects of POTELIGEO include rash, tiredness, diarrhea, muscle and bone pain and upper respiratory tract infection.7

“Even though I know that I’m still playing the game, I feel like I’ve won,” said Jeff. “Now I get to enjoy teaching kids what it takes to play their own.”

The importance of teamwork

Jeff with fiancée, Sherri

While Jeff 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.

“It’s easy to feel overwhelmed, to say it’s just not going to work and give up,” reflects Jeff. “It was in these moments that support from my clinical care team, family and friends helped me to see a path forward, that there was hope. For that, I am forever grateful.” 

More than a year after starting treatment with POTELIGEO, Jeff’s cancer remains well-controlled, though occasionally he has small red itchy areas that he treats with 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. By advocating for himself, he found the right specialists, the right diagnosis and ultimately, the right treatment.

Things are once again looking up. 

To learn more about living with MF and SS go to: www.poteligeo.com/coping.


INDICATION AND IMPORTANT SAFETY INFORMATION

What is POTELIGEO® (mogamulizumab-kpkc)?

POTELIGEO is a prescription medicine used to treat mycosis fungoides (MF) or Sézary syndrome (SS) in adults who have tried at least one prior medicine (taken by mouth or injection) that did not work or in whom the disease has come back.

Important Safety Information

What is the most important information I should know about POTELIGEO?

POTELIGEO may cause serious side effects that can be severe or life-threatening including skin problems, infusion reactions, infections, autoimmune problems, and complications from stem cell transplant.

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.


References:

  1. Cutaneous T-Cell Lymphoma. Leukemia & Lymphoma Society. https://www.lls.org/sites/default/files/file_assets/PS96_CTCL_Booklet_Final.pdf.
  2. Cutaneous T-Cell Lymphoma. Cutaneous Lymphoma Foundation. https://www.clfoundation.org/cutaneous-t-cell-lymphoma.
  3. Patient’s Guide to Understanding Cutaneous Lymphoma Second Edition. Cutaneous Lymphoma Foundation. https://www.- clfoundation.org/sites/default/ les/2018-04/a_patients_guide.pdf.
  4. Agar NS, Wedgeworth E, Crichton S, et al. Survival outcomes and prognostic factors in mycosis fungoides/Sézary syndrome: validation of the revised International Society for Cutaneous Lymphomas/European Organisation for Research and Treatment of Cancer staging proposal. J Clin Oncol. 2010;28(31):4730-4739.
  5. Amorim GM, Niemeyer-Corbellini JP, Quintella DC, Cuzzi T, Ramos-E-Silva M. Clinical and epidemiological profile of patients with early stage mycosis fungoides. An Bras Dermatol. 2018;93(4):546-552. doi:10.1590/abd1806-4841.20187106
  6. Sézary syndrome. Cutaneous Lymphoma Foundation. https://www.clfoundation.org/sezary-syndrome.
  7. POTELIGEO [package insert]. Kyowa Kirin Inc., Bedminster, NJ USA.

PM-US-POT-0442 September 2021

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