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Real Patients Share Their Cancer Journeys

When you have a rare cancer like cutaneous T-cell lymphoma (CTCL), the road to diagnosis and treatment can be a long one. In the stories below real patients with mycosis fungoides and Sézary syndrome, two forms of CTCL, share their journey to diagnosis, experience on POTELIGEO® (mogamulizumab-kpkc) treatment, and what motivates them to never give up.

Remember: Not everyone responds to POTELIGEO, and those who do respond may respond differently. The stories below may be different from your own.

JEFFREY'S JOURNEY

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

JEFF'S JOURNEY

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.

JIM’S JOURNEY

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

WANT TO SHARE YOUR POTELIGEO STORY?

If you or a loved one is interested in sharing your experience on POTELIGEO treatment, please call 1-877-565-0132

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.

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.

pdf iconPLEASE SEE PATIENT INFORMATION.
jeff family

Jeffrey’s story

Jeffrey always seemed to be at war with his skin. As a child, he was prone to sunburns. His teen years brought severe acne and with it, debilitating shyness. By middle age, he thought he was through the worst of it when one day he noticed an odd rash on his chest while swimming.

His dermatologist thought it was atopic dermatitis, while another diagnosed it as eczema. Initially, it didn’t seem serious and wasn’t impacting his life as a filmmaker, husband and father. But as the years went by, moisturizers, steroid creams and avoidance of certain chemicals weren’t making a difference. In fact, the rash began to intensify and was now impacting his daily life.

By early evenings, the itching and burning was unbearable to the point that I would crawl into bed right after dinner to sleep through the pain.

Then one day came a flare up that would change everything. Nearly all of Jeffrey’s skin became inflamed, turning it a bright crimson red. His dermatologist prescribed an arsenal of treatments, but nothing worked. Frustrated and puzzled by this stubborn rash, his doctor tried a different approach – holding a brainstorm with all the doctors in his practice.

It was during this session that a young doctor recalled seeing something similar while interning at the Mayo Clinic, a rare cancer called cutaneous T-cell lymphoma (CTCL).1 A biopsy would later confirm that Jeffrey had Stage 4 Sézary syndrome, an extremely rare and serious form of CTCL that affects the skin, blood and sometimes other organs.2,3,4

Hearing that I had an advanced stage of cancer, a cancer with no cure, left me feeling hopeless. I felt lost about what this meant for me and my family.

Jeffrey was referred to a CTCL expert at a local cancer center where he immediately began extracorporeal photopheresis, a type of transfusion process that targets cancerous T-cells in the blood, along with a regimen of anti-cancer medications. All the while, he found himself going through the five stages of grief - starting with denial of the diagnosis, followed quickly by anger, sadness and feeling sorry for himself. He finally arrived at acceptance thanks to the help of friends and family, and the support of a small online Sézary group where he shared his experience and fears with others who had run the same gauntlet.

A year into treatment, Jeffrey struggled as the rash and pain continued, along with body aches and fatigue. He couldn’t walk, he couldn’t move, he didn’t want anyone to see the way he looked. Despite his ongoing attempts to continue working, he considered permanent, early retirement as he tearfully asked a client to transfer a passion project of his to another filmmaker.

Every night, sloughing would strip of a full layer of skin from my body. On top of that, there was the crippling pain from what was left of my skin that felt like it had been burned and then dragged across synthetic turf.

When his treatments began to fail, his doctor asked if he would consider POTELIGEO® (mogamulizumab-kpkc). She had been part of its early clinical trials and thought it would be worth trying. After discussing the benefits and risks with his doctor, and consulting with his wife and online Sézary group, he decided to go for it.

Jeffrey began treatment with POTELIGEO in June 2020, receiving weekly infusions for the first five weeks of treatment, before moving to an infusion every two weeks. Within a month, he noticed a difference in his skin as the flaking and plaques started to subside. Over the course of the following nine months, the redness continued to fade. This is Jeffrey’s experience and individual response to treatment with POTELIGEO varies.

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, infusion related reactions, tiredness, diarrhea, muscle and bone pain and upper respiratory tract infection. Please see additional Important Safety Information in the full Prescribing Information.

Jeffrey’s war with his skin isn’t over but today his skin is mostly clear, the sloughing is dramatically reduced and the pain has subsided. Although Sézary syndrome is incurable, his blood tests show no sign of cancer cells in his blood. And that passion project? It turns out his client never gave up on Jeffrey and he was able to pick up where they left off.

Reflecting on his journey, Jeffrey has found strength in appreciating every day, the people who continue to support him and the importance of not losing hope.

There are two endings to any story – one where you give up and the other where you can be your own hero and fight back. Today, I choose the later. I’ll keep trying to live my dream for as long as possible.

References: 1. Cutaneous T-Cell Lymphoma. Cutaneous Lymphoma Foundation. https://www.clfoundation.org/cutaneous-t-cell-lymphoma. 2. National Comprehensive Cancer Network. Primary Cutaneous Lymphomas. NCCN Clinical Practice Guidelines in Oncology. 2020;2.2020:1-98. 3. Sézary syndrome. Cutaneous Lymphoma Foundation. https://www.clfoundation.org/sezary-syndrome. 4. Cutaneous T-Cell Lymphoma. Leukemia & Lymphoma Society. https://www.lls.org/sites/default/files/file_assets/PS96_CTCL_Booklet_Final.pdf . PM-US-POT-0484 September 2021

jeff family

Jeff’s story

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. 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 that hadn’t 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 was the first stop in what would be become a three-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.

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

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 has mycosis fungoides (MF), the most common form of a rare blood cancer called cutaneous T-cell lymphoma (CTCL).1

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.2,3

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® (mogamulizumab-kpkc) 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 five weeks of treatment, before moving to an infusion every two 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.

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, infusion related reactions, tiredness, diarrhea, muscle and bone pain and upper respiratory tract infection. Please see additional Important Safety Information in the full Prescribing Information.

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.

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.

References: 1. Cutaneous T-Cell Lymphoma. Leukemia & Lymphoma Society. https://www.lls.org/sites/default/files/file_assets/PS96_CTCL_Booklet_Final.pdf. 2. 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. 3. 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 PM-US-POT-0483 September 2021

jeff family

Jim's story

It started with an itch. At first, Jim thought it would just go away. He chalked it up to something in the air, the heat of summer, even a mid-life crisis, but it only got worse.

Over the next three years, he saw his primary care physician (PCP), dermatologists and allergists who performed test after test with no relief. By now the itching was head-to-toe and non-stop, even in his sleep.

He’d wake up to blood-stained sheets from scratching during the night. His red and inflamed skin began to thicken to form raised patches called plaques in some areas. After trying antihistamines, steroids and even changing laundry detergents, Jim had enough.

Everybody kept telling me I had atopic dermatitis, eczema, or hives, definitely not cancer. I thought I was losing my mind.

Jim found a new PCP and at his first meeting pleaded for help. “Look, I have something wrong,” he said. “I’m itching constantly. I need to figure out what’s going on.” His doctor responded, “I like a challenge. Let’s figure it out.” For the first time, Jim felt like someone had really listened and it made a difference.

He was eventually referred to a local university hospital for a biopsy and blood work and a week later Jim finally had his answer - he had Sézary syndrome, a serious form of cutaneous T-cell lymphoma (CTCL) that involves the skin, blood and in Jim’s case, the lymph nodes.1

It was like a punch to the gut. All I could hear was my heart beating and my eyes started welling up. You hear the word ‘cancer’ and your mind starts to go to some pretty dark places.

Jim’s tight-knit family gave him the support he needed to face his diagnosis head-on. His wife Susan assured him that they would beat this together, going with him to his appointments, taking notes and asking questions. It was all overwhelming at first, but his doctors were convinced they could find the right treatment for him.

His hematologist prepared a list of potential treatments and over the next year he went through the list. Various medications and therapies gave him short-term relief but nothing lasting and he struggled with side effects. Eventually, he tried chemotherapy, which was hard on him physically. He took a leave of absence from work and, reluctantly, adjusted to relying on others for help. Yet, he didn’t lose hope.

His doctor had told him about a treatment under development. It hadn’t yet been approved by the U.S. Food and Drug Administration (FDA), but he was confident that it could be the treatment they were looking for. Jim began checking the FDA website every Monday for news on its status. So, apparently, was his son Lucas who was the first to tell him the news, “Dad, it’s approved!” Within minutes, Jim was messaging his doctor to find out when he could get started.

After a discussion of the benefits and risks, Jim began treatment with POTELIGEO® (mogamulizumab-kpkc) in November 2018, receiving weekly infusions for the first five weeks of treatment, before moving to an infusion every two weeks. After the fourth infusion he noticed that his skin was beginning to improve. But Jim says his first “wow” moment came when he saw his bloodwork results showing no Sézary cells in the blood. For him, it was something tangible that proved he really was doing as well as he felt. This is Jim’s experience and individual response to treatment with POTELIGEO varies.

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, infusion related reactions, tiredness, diarrhea, muscle and bone pain and upper respiratory tract infection. Please see additional Important Safety Information in the full Prescribing Information.

Today, Jim goes to a local infusion center for his POTELIGEO treatment, and his bloodwork remains in the normal range. His skin has stopped itching, although he occasionally has plaque breakouts that are treated with creams. He’s feels grateful for his family and to have found something that works for him.

It was definitely frustrating to be searching for answers when I wasn’t even sure what the question was. Going through this has taught my family to keep fighting, to not give up hope.

References: 1. Sézary syndrome, Cutaneous Lymphoma Foundation. https://www.clfoundation.org/sezary-syndrome. PM-US-POT-0482 September 2021

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.

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.

pdf iconPLEASE SEE PATIENT INFORMATION.
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