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DLBCL Stories

Between grief, gratitude, isolation, and connection—someone out there likely knows how you feel.

Find out what other people with diffuse large B-cell lymphoma (DLBCL) and their caregivers have gone through below.

DLBCL Stories

Between grief, gratitude, isolation, and connection—someone out there likely knows how you feel.

Find out what other people with diffuse large B-cell lymphoma (DLBCL) and their caregivers have gone through below.

Not an actual patient.

My Truths

Get stories of struggle and strength from people living with DLBCL and their caregivers.

ADC Therapeutics respects the privacy of individuals who have shared their experiences. For this reason, people in photos included on this page are not real patients.

Click on any photo with + to read a story.

View Marcus’s Story

I wish everybody could find a treatment that works for them.

View Marcus’s Story

Marcus’s DLBCL Story

Treatment history:

  • Relapsed 2 times
  • Tried radiation and chemotherapy

“I wish everybody could find a treatment that works for them.”

Before cancer, I loved working on old cars with my brother. We used to take road trips to visit and fix them up. It was my favorite thing to do until I got DLBCL.

I couldn’t breathe. I got treated for asthma at first. Then I got worse. The doctors said, “You have lymphoma on the outside of your lungs. But we can help you.” I got treatments that worked for a few months. But then I went from 195 pounds down to 120 pounds in 1 month.

That’s when my doctor put me on ZYNLONTA®. He said it’s different than the chemo I had before, explained how it worked in studies, and shared side effects to watch for.

ZYNLONTA® worked for me. And it helped me get on with my life while I was getting treated.

I finally went on another road trip to see my brother. We felt like teenagers working on our old cars. I’m so happy I got to do that again.

My advice is to first ask your doctor about ALL of your options. Second, always do your research. Third, if ZYNLONTA® is offered to you, look into it. The most important thing is to not be afraid. If I can do this, you can do this.

Learn about ZYNLONTA® results

The stories on this page draw from the experiences of real people living with DLBCL. They are not direct quotes or representative of just one person’s story. Individual results will vary.

View Cindy’s Story

When my mom found out she had DLBCL, she was hanging on for dear life.

View Cindy’s Story

Cindy’s Caregiver Story

Treatment history:

  • Takes care of her mother, Vivian
  • Vivian was diagnosed with DLBCL in 2015
  • Vivian had 2 different chemotherapies, radiation therapy, and immunotherapy

“When my mom found out she had DLBCL, she was hanging on for dear life.”

My mom’s doctor was very pessimistic. He said, “Vivian probably won’t survive that long.” I was very panicky—I felt like we were in dire straits. She was in pain and had lost a ton of weight.

We knew the chances of a cure go down if DLBCL comes back. My mom went through so much at the start.

When the disease came back with a vengeance, she was deflated. She thought she had been cured, so the idea of having to start over was terrible.

I get most of the information from an online support group for non-Hodgkin’s lymphoma. My mom and I both read people’s experiences with different treatments. I’ve learned how to do research and how to come prepared to speak to the doctors.

Nowadays, my mom has more good days than bad. At the beginning it was an acute issue that had to be dealt with immediately. Now it’s a chronic condition that we’re managing. It’s like rowing a boat, going along steadily, just moving forward.

My advice would be to make sure you’re taking care of yourself. This way you can truly be there for them.

Find caregiver resources

The stories on this page draw from the experiences of real people living with DLBCL. They are not direct quotes or representative of just one person’s story. Individual results will vary.

View Catherine’s Story

I don’t think I’d ever felt so taken care of in my life. By the doctors, by my friends, by my husband, by everyone.

View Catherine’s Story

Catherine’s DLBCL Story

Treatment history:

  • Diagnosed with DLBCL
  • Tried chemotherapy and had 1 stem-cell transplant

“I don’t think I’d ever felt so taken care of in my life. By the doctors, by my friends, by my husband, by everyone.”

When I was diagnosed with DLBCL on my 1-year anniversary with my husband, I was terrified. But I decided that I was going to use everything I could to fight it. DLBCL is a brutal, sneaky disease, but it is treatable. I always said I wasn’t afraid of dying. I was afraid of leaving. I wasn’t ready to leave yet.

When the cancer relapsed, I was more shocked than when I first got diagnosed with cancer. I didn’t even have symptoms. I wanted to shut down. I didn’t want to deal with it. When I was in the middle of the fight, the disease was the fight. I was fighting it. When it came back, I felt like it had become part of me, like I couldn’t lose it entirely.

The thing that’s helped me get through has been the support. I’ve always been the person who shows up for others, but it’s different when you’re receiving it. My advice is to be willing to ask for what you need and accept that you may not be able to pay them back.

Learn about discussions with your doctor

The stories on this page draw from the experiences of real people living with DLBCL. They are not direct quotes or representative of just one person’s story. Individual results will vary.

View Nia’s Story

It dominates most of my thoughts and time.

View Nia’s Story

Nia’s DLBCL Story

Treatment history:

  • Relapsed 6 times in 4½ years
  • Tried 2 different chemotherapy treatments, 2 immunotherapy treatments, and 1 stem-cell transplant

“It dominates most of my thoughts and time.”

I had a cough and chest pain that I thought was reflux. An urgent care doctor sent me to the hospital for scans. That’s when I found out there was a large B-cell lymphoma mediastinum growth.

The first time I relapsed, I felt like I got sideswiped. I got treated and it went away. But the cancer came back 3 times and then spread to my brain. That’s when I started digging deep, doing my own research, and asked about different therapies.

When it spread to my brain, my husband was terrified. He thought I was going to die. I’d never seen him like this before. I was in pure survival mode, just thinking about what therapy might be next.

I just want more time. It’s really important to have my grandchildren remember me.

My advice for anyone going through something like this is to research. At some point, I just said, “We’re going to throw everything at this. Both alternative and standard. I’m just going to make sure it goes away and never comes back.” I feel ready if it does.

Find helpful ZYNLONTA® resources

The stories on this page draw from the experiences of real people living with DLBCL. They are not direct quotes or representative of just one person’s story. Individual results will vary.

View Mitch’s Story

It’s like a never-ending nightmare. It just keeps going—it doesn’t stop.

View Mitch’s Story

Mitch’s Caregiver Story

Treatment history:

  • Takes care of his wife, Kady
  • Kady was diagnosed with DLBCL in November 2011
  • Kady had chemotherapy and 4 different immunotherapy treatments

“It’s like a never-ending nightmare. It just keeps going—it doesn’t stop.”

DLBCL sucks. It’s life-threatening, and I want it to go away. It’s always there lurking in the background, and you don’t know when the next blow is going to strike. It’s like a never-ending nightmare.

What’s hardest is constantly worrying about relapse and the next treatment. When Kady’s cancer relapsed after chemo, we were depressed. We wondered, “Okay, well, what is the next treatment? What is the chance that remission’s going to last?”

I relied solely on our oncologist for the first 2 treatments. But then I decided I’ve got to branch out and keep looking for the next treatment. And I did research on my own and reached out to anyone studying this stuff. They were responsive, thankfully. And I felt like there was somebody in our corner fighting for us.

My advice is to always be on the lookout for the next thing. There’s so much that I wish I knew when this started 9 years ago. I would say, “Please keep yourself up to date on the latest treatments and don’t be afraid to ask questions.”

Find out if ZYNLONTA® could be your next treatment

The stories on this page draw from the experiences of real people living with DLBCL. They are not direct quotes or representative of just one person’s story. Individual results will vary.

View Carmen’s Story

It feels like walking across a very shaky bridge over the Grand Canyon.

View Carmen’s Story

Carmen’s Caregiver Story

Treatment history:

  • Takes care of her husband, Juan
  • Juan was diagnosed with Hodgkin’s lymphoma at 17 years old and was in remission for years
  • Juan was then diagnosed with DLBCL in 2013
  • Juan had radiation therapy, 3 different chemotherapy treatments, and 1 stem-cell transplant

“It feels like walking across a very shaky bridge over the Grand Canyon.”

After 5 years of remission, they said, “You’ve got stage IV DLBCL.” At this point, Juan really thought that he wasn’t going to survive. He thought, “I’m never going to teach our son how to drive. I’m never going to see him graduate high school.”

We feel constant terror and exhaustion. It feels like walking across a very shaky bridge over the Grand Canyon. At every step, things can go wrong. Our life is just appointments, hospitals, IVs, and test results.

I strongly advise other people going through this to be their own advocate. If you feel something’s wrong or you don’t understand something, speak up. It can make the difference.

Learn what to ask at your next appointment

The stories on this page draw from the experiences of real people living with DLBCL. They are not direct quotes or representative of just one person’s story. Individual results will vary.

Sign up to tell us your truths

If you would like to share your DLBCL or ZYNLONTA® (loncastuximab tesirine-lpyl) treatment story, please leave your information with us. An ADCT representative will reach out to you with more details.

This is not a form to report side effects. You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to ADC Therapeutics at 1-855-690-0340.

Connect with your community. Sharing your experience could help others with DLBCL, whether you:

  • have DLBCL that has not gone away after 2 or more treatments
  • care for someone who has DLBCL

Please fill in your information:

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What is ZYNLONTA®?

Important Safety Information

ZYNLONTA® is a prescription medicine used to treat adults with certain types of large B-cell lymphoma that has come back (relapsed) or that did not respond to previous treatment (refractory), who have already received two or more treatments for their cancer.

It is not known if ZYNLONTA® is safe and effective in children.

The approval of ZYNLONTA® is based on a type of response rate. There is an ongoing study to confirm the clinical benefit of ZYNLONTA®.

Read full Important Safety Information

IMPORTANT SAFETY INFORMATION

What are the possible side effects of ZYNLONTA®?

ZYNLONTA® may cause serious side effects, including:

  • Fluid retention. Your body may hold too much fluid during treatment with ZYNLONTA®. This can be serious. Tell your healthcare provider if you develop new or worsening swelling or puffiness, weight gain, chest pain, shortness of breath, or trouble breathing
  • Low blood cell counts (platelets, red blood cells, and white blood cells). Low blood cell counts are common with ZYNLONTA® but can also be serious or severe. Your healthcare provider will monitor your blood counts during treatment with ZYNLONTA®. Tell your healthcare provider right away if you get a fever of 100.4°F (38°C) or above, or any bruising or bleeding
  • Read full Important Safety Information
  • Infections. Serious infections, including infections that can cause death, have happened in people treated with ZYNLONTA®. Tell your healthcare provider right away if you have new or worsening signs or symptoms of infection
  • Skin reactions. Serious skin reactions have happened in people treated with ZYNLONTA®. Tell your healthcare provider if you get new or worsening skin reactions, including sensitivity to sunlight, skin rash, peeling, redness or irritation. You may burn more easily or get severe sunburns

The most common side effects of ZYNLONTA® include:

  • feeling tired or weak
  • skin rash
  • swelling
  • nausea
  • muscle or joint pain
  • increase in blood sugar (hyperglycemia)
  • changes in certain blood or laboratory tests

ZYNLONTA® may cause fertility problems in males which may affect your ability to father children. Talk to your healthcare provider if this is a concern for you. These are not all of the possible side effects of ZYNLONTA®.

What should I avoid while receiving ZYNLONTA®?

Avoid or limit your exposure to sunlight, including sunlight through glass, such as buildings or vehicle windows and artificial sunlight such as sunlamps or tanning beds. Exposure to sunlight during treatment with ZYNLONTA® can cause skin reaction or rash. Use sun protection measures such as sunscreen and wear loose-fitting clothes that cover your skin while out in sunlight.

Before you receive ZYNLONTA®, tell your healthcare provider about all of your medical conditions, including if you:

  • have an active infection or have had one recently
  • have liver problems
  • are pregnant or plan to become pregnant. ZYNLONTA® can harm your unborn baby

    Females who can become pregnant:

    • your healthcare provider may do a pregnancy test before starting treatment with ZYNLONTA®
    • you should use effective birth control (contraception) during treatment with ZYNLONTA® and for 10 months after the last dose of ZYNLONTA®. Talk to your healthcare provider about effective birth control. Tell your healthcare provider right away if you become pregnant or think that you are pregnant during treatment with ZYNLONTA®

    Males with female partners who can become pregnant:

    • you should use effective birth control (contraception) during treatment with ZYNLONTA® and for 7 months after the last dose of ZYNLONTA®
  • are breastfeeding or plan to breastfeed. It is not known if ZYNLONTA® passes into breast milk. Do not breastfeed during treatment with ZYNLONTA® and for 3 months after the last dose of ZYNLONTA®

Tell your healthcare provider about all the medicines that you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Know the medicines you take. Keep a list of them to show your healthcare provider or pharmacist when you get new medicine.

You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to ADC Therapeutics at 1-855-690-0340.

Please see the full Prescribing Information for ZYNLONTA®, including Patient Information, for additional Important Safety Information.

What is ZYNLONTA®?

Important Safety Information

ZYNLONTA® is a prescription medicine used to treat adults with certain types of large B-cell lymphoma that has come back (relapsed) or that did not respond to previous treatment (refractory), who have already received two or more treatments for their cancer.

It is not known if ZYNLONTA® is safe and effective in children.

The approval of ZYNLONTA® is based on a type of response rate. There is an ongoing study to confirm the clinical benefit of ZYNLONTA®.

Read full Important Safety Information

IMPORTANT SAFETY INFORMATION

What are the possible side effects of ZYNLONTA®?

ZYNLONTA® may cause serious side effects, including:

  • Fluid retention. Your body may hold too much fluid during treatment with ZYNLONTA®. This can be serious. Tell your healthcare provider if you develop new or worsening swelling or puffiness, weight gain, chest pain, shortness of breath, or trouble breathing
  • Low blood cell counts (platelets, red blood cells, and white blood cells). Low blood cell counts are common with ZYNLONTA® but can also be serious or severe. Your healthcare provider will monitor your blood counts during treatment with ZYNLONTA®. Tell your healthcare provider right away if you get a fever of 100.4°F (38°C) or above, or any bruising or bleeding
  • Read full Important Safety Information
  • Infections. Serious infections, including infections that can cause death, have happened in people treated with ZYNLONTA®. Tell your healthcare provider right away if you have new or worsening signs or symptoms of infection
  • Skin reactions. Serious skin reactions have happened in people treated with ZYNLONTA®. Tell your healthcare provider if you get new or worsening skin reactions, including sensitivity to sunlight, skin rash, peeling, redness or irritation. You may burn more easily or get severe sunburns

The most common side effects of ZYNLONTA® include:

  • feeling tired or weak
  • skin rash
  • swelling
  • nausea
  • muscle or joint pain
  • increase in blood sugar (hyperglycemia)
  • changes in certain blood or laboratory tests

ZYNLONTA® may cause fertility problems in males which may affect your ability to father children. Talk to your healthcare provider if this is a concern for you. These are not all of the possible side effects of ZYNLONTA®.

What should I avoid while receiving ZYNLONTA®?

Avoid or limit your exposure to sunlight, including sunlight through glass, such as buildings or vehicle windows and artificial sunlight such as sunlamps or tanning beds. Exposure to sunlight during treatment with ZYNLONTA® can cause skin reaction or rash. Use sun protection measures such as sunscreen and wear loose-fitting clothes that cover your skin while out in sunlight.

Before you receive ZYNLONTA®, tell your healthcare provider about all of your medical conditions, including if you:

  • have an active infection or have had one recently
  • have liver problems
  • are pregnant or plan to become pregnant. ZYNLONTA® can harm your unborn baby

    Females who can become pregnant:

    • your healthcare provider may do a pregnancy test before starting treatment with ZYNLONTA®
    • you should use effective birth control (contraception) during treatment with ZYNLONTA® and for 10 months after the last dose of ZYNLONTA®. Talk to your healthcare provider about effective birth control. Tell your healthcare provider right away if you become pregnant or think that you are pregnant during treatment with ZYNLONTA®

    Males with female partners who can become pregnant:

    • you should use effective birth control (contraception) during treatment with ZYNLONTA® and for 7 months after the last dose of ZYNLONTA®
  • are breastfeeding or plan to breastfeed. It is not known if ZYNLONTA® passes into breast milk. Do not breastfeed during treatment with ZYNLONTA® and for 3 months after the last dose of ZYNLONTA®

Tell your healthcare provider about all the medicines that you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Know the medicines you take. Keep a list of them to show your healthcare provider or pharmacist when you get new medicine.

You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to ADC Therapeutics at 1-855-690-0340.

Please see the full Prescribing Information for ZYNLONTA®, including Patient Information, for additional Important Safety Information.