One Patient’s Journey with Relapsed Diffuse Large B-Cell Lymphoma and What He Wants You to Know

The word “cancer” can immediately turn someone’s world upside down. The six-letter word has the power to bring a flood of emotions with it – fear, anxiety and confusion. But learning about common symptoms to watch for and the impact of different types of cancer can help bring understanding and preparedness. That’s why Michael, an Ohio native living with an aggressive blood cancer known as diffuse large B-cell lymphoma (DLBCL), wants to share his story.

What to Know About This Type of Lymphoma

DLBCL is a type of aggressive, fast-growing non-Hodgkin's lymphoma (NHL), a cancer that develops in the lymphatic system and affects B cells, a type of white blood cell.^[1],[2] DLBCL is the most common subtype of NHL, with more than 18,000 people being diagnosed with this type of cancer each year in the U.S.^[3] While DLBCL can occur at various ages, it is most frequently diagnosed among people aged 65-74.^[4] The symptoms associated with DLBCL often resemble those of more common conditions, such as: enlarged lymph nodes, painless swelling in the neck, underarms or groin; unexplained weight loss; fatigue and/or lack of energy; and chills, fever and/or excessive sweating, often at night.^[5],[6]

Despite being labeled as an “aggressive” cancer, DLBCL is curable for some.^[7] However, about 30-40% of people with DLBCL develop relapsed or refractory (R/R) disease,^[8] which means their cancer returns after initial treatments and/or their cancer stops responding to treatment.

People with R/R DLBCL experience significant treatment challenges, with outcomes worsening with each line of treatment.^[9] The heartbreaking reality is that 1 in 3 patients will not survive 5 years after receiving a DLBCL diagnosis.^[10]

How Michael Still Lives Life on His Own Terms

Michael, a 66-year-old, received the devastating diagnosis of DLBCL in 2016. He had coached softball and football for 32 years and loved being involved in his community, which had to be put on pause. Living with DLBCL can be difficult, especially for those who enjoy outdoor activities, as the disease can cause fatigue and/or lack of energy.

Adjusting to life with DLBCL can be hard, but thinking about how this would affect his children was even harder. “Not knowing if you have a tomorrow is a very unpleasant thing, and not knowing if you’ll be there for your family is even worse,” Michael shared. But he was able to push forward and finish treatment, driven by the desire to be there for his family and community. For five years, Michael was in remission.

In 2021, Michael’s cancer returned. He had gone through various treatments for his initial diagnosis already, including chemotherapy and radiation. But this time was different, and Michael would try several additional treatment options such as chemoimmunotherapy, CAR T therapy and a clinical trial.

Michael was also remarried now and had Kimberly in his life. Michael and Kimberly connected in 2018 after Kimberly came to watch her granddaughter’s soccer game that Michael was coaching. They fell in love and got married 6 months later. Kimberly became Michael’s Care Partner – a term used to refer to a “caregiver” who provides someone with physical and emotional support – and has been by his side for all aspects of his cancer treatment.

“Kimberly is a true blessing,” Michael said. “She is an absolute rock.” Kimberly acknowledged that Michael’s life with DLBCL had been challenging, but that they had many reasons to maintain hope. Her advice to others is to “think of treatments like water stations in a marathon: something may not be working, or may not work long term, but there can be something else ahead. Your health is not a sprint. It’s a marathon.” As it turned out, Michael was arriving at his next water station. He and his physician decided to try a bispecific antibody treatment known as EPKINLY^® (epcoritamab-bysp) following his relapse.

Michael began treatment with EPKINLY in May 2023, and has been on it since. EPKINLY is the first and only subcutaneous bispecific antibody approved by the U.S. Food and Drug Administration to treat adults with certain types of DLBCL and high-grade B-cell lymphoma that has come back or that did not respond to previous treatment after receiving two or more treatments.^[11] Treatment options are expanding, and EPKINLY offers a subcutaneous (just under the skin) injection option for patients living with this type of cancer.

Michael, along with his clinicians, noticed that he was responding to treatment well and said he is now in “a good place.” He enjoys every day he is able to spend time with Kimberly, his six daughters, and 10 grandchildren. Although Michael is still living with DLBCL, he shared that EPKINLY is helping to keep it under control – his bloodwork is normal, and his disease is stable. Michael's physician also advised him to look out for certain signs and symptoms of infection during his treatment.

Michael’s journey with relapsed DLBCL has been ongoing for almost a decade, but with his support system and continued treatment with EPKINLY, Michael’s marathon continues.

What is EPKINLY?
EPKINLY is a prescription medicine used to treat adults with certain types of diffuse large B-cell lymphoma (DLBCL) and high-grade B-cell lymphoma that has come back or that did not respond to previous treatment after receiving 2 or more treatments. EPKINLY is approved based on patient response data. A study is ongoing to confirm the clinical benefit of EPKINLY. It is not known if EPKINLY is safe and effective in children.

IMPORTANT SAFETY INFORMATION

Important Warnings—EPKINLY can cause serious side effects, including:

• Cytokine release syndrome (CRS), which is common during treatment with EPKINLY and can be serious or life-threatening. To help reduce your risk of CRS, you will receive EPKINLY on a step-up dosing schedule (when you receive 2 smaller step-up doses of EPKINLY before your first full dose during your first cycle of treatment), and you may also receive other medicines before and for 3 days after receiving EPKINLY. Your first full dose of EPKINLY will be given on day 15 of your first cycle of treatment and you should be hospitalized for 24 hours after due to the risk of CRS and neurologic problems. If your dose of EPKINLY is delayed for any reason, you may need to repeat the step-up dosing schedule.
• Neurologic problems that can be life-threatening and lead to death. Neurologic problems may happen days or weeks after you receive EPKINLY.

Tell your healthcare provider or get medical help right away if you develop a fever of 100.4°F (38°C) or higher; dizziness or lightheadedness; trouble breathing; chills; fast heartbeat; feeling anxious; headache; confusion; shaking (tremors); problems with balance and movement, such as trouble walking; trouble speaking or writing; confusion and disorientation; drowsiness, tiredness or lack of energy; muscle weakness; seizures; or memory loss. These may be symptoms of CRS or neurologic problems. If you have any symptoms that impair consciousness, do not drive or use heavy machinery or do other dangerous activities until your symptoms go away.

EPKINLY can cause other serious side effects, including:

• Infections that may lead to death. Your healthcare provider will check you for signs and symptoms of infection before and during treatment and treat you as needed if you develop an infection. You should receive medicines from your healthcare provider before you start treatment to help prevent infection. Tell your healthcare provider right away if you develop any symptoms of infection during treatment, including fever of 100.4°F (38°C) or higher, cough, chest pain, tiredness, shortness of breath, painful rash, sore throat, pain during urination, or feeling weak or generally unwell.
• Low blood cell counts, which can be serious or severe. Your healthcare provider will check your blood cell counts during treatment. EPKINLY may cause low blood cell counts, including low white blood cells (neutropenia), which can increase your risk for infection; low red blood cells (anemia), which can cause tiredness and shortness of breath; and low platelets (thrombocytopenia), which can cause bruising or bleeding problems.

Your healthcare provider will monitor you for symptoms of CRS, neurologic problems, infections, and low blood cell counts during treatment with EPKINLY. Your healthcare provider may temporarily stop or completely stop treatment with EPKINLY if you develop certain side effects.

Before you receive EPKINLY, tell your healthcare provider about all your medical conditions, including if you have an infection, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. If you receive EPKINLY while pregnant, it may harm your unborn baby. If you are a female who can become pregnant, your healthcare provider should do a pregnancy test before you start treatment with EPKINLY and you should use effective birth control (contraception) during treatment and for 4 months after your last dose of EPKINLY. Tell your healthcare provider if you become pregnant or think that you may be pregnant during treatment with EPKINLY. Do not breastfeed during treatment with EPKINLY and for 4 months after your last dose of EPKINLY.

The most common side effects of EPKINLY include CRS, tiredness, muscle and bone pain, injection site reactions, fever, stomach-area (abdominal) pain, nausea, and diarrhea. The most common severe abnormal laboratory test results include decreased white blood cells, decreased red blood cells, and decreased platelets.

These are not all of the possible side effects of EPKINLY. Call your doctor for medical advice about side effects. You are encouraged to report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch or to Genmab US, Inc. at 1-855-4GENMAB (1-855-443-6622).

Please see Medication Guide, including Important Warnings.

Please click to see Important Facts about EPKINLY, including Important Warnings for cytokine release syndrome and neurologic problems.

If you or someone you know has R/R DLBCL, speak with your doctor about potential therapies, including EPKINLY.

For more information, please visit epkinly.com.

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