Amina’s story: Speaking up matters

Video Transcript

My name is Amina. I'm 23. I live in New York City with my roommates and my Jack Russell Terrier, Snoopy. I'm an aspiring choreographer, a dancer, and a model. It started when I felt a lump in my groin. Ultimately, I was diagnosed with stage 3 classical Hodgkin lymphoma when I was just 21 years old. But getting to that diagnosis was a journey in itself. If I hadn't listened to my body, if I hadn't found the confidence to speak up and insist on the care I needed, I'm not sure what would have happened. I grew up in Washington, DC. My mother likes to say she was dancing while she was pregnant with me. As soon as I was born, she took me to her classes just to watch people dancing, to see the movement. I took my first class when I was six. I was rehearsing for a show. I'd lost weight. My morale was low. My energy was low. This was not normal for me. I spoke to a mentor of mine who I'd worked with for many years and said, “I'm sick.” I'm trying to figure out what's going on. Around this time, I learned that being comfortable, speaking up, and taking advantage of the community you have, my colleagues, my parents, my partner, my cousin who's a breast cancer survivor, is really important.

My first diagnosis was ovarian cyst. I was told I had a UTI and was given antibiotics. Weeks passed and nothing helped. I kept getting different answers. I was in a lot of pain and I knew I was really sick. With a bit of prompting from my gynecologist, I scheduled an MRI myself. As a patient, it can be really hard to trust yourself in situations like these and to challenge the first answer you receive, even when your body is telling you something is wrong. Pushing through the healthcare system and getting that MRI done on my own taught me how to advocate for myself in discussions with my doctors. It turned out to be a crucial step. I spoke up and took action, and that's what led to my stage 3 classical Hodgkin lymphoma diagnosis. I met with an oncologist who took one look at me and the results of my MRI and said, “You're right. You're one sick puppy, and we need to move quickly.” It had been six months. After all that time and stress, it made me feel seen. It made me feel validated. Self-advocacy is all about open communication. It means putting aside what you think you're supposed to do in the exam room and being brave enough to ask questions.

Your voice matters. If you're not comfortable with a doctor or a proposed treatment plan, say so and seek a second opinion. At the end of the day, you're the patient. You're the one who's going to be affected by these decisions, so you should have a say.

Amina was treated with ADCETRIS (brentuximab vedotin) plus AVD (Adriamycin, vinblastine, and dacarbazine).

ADCETRIS plus AVD is a prescription therapy approved for adults with previously untreated stage 3 or 4 classical Hodgkin lymphoma.

ADCETRIS will not work for everyone. Individual results may vary. The information provided is for educational purposes only and is not intended to replace discussions with a health care provider. Ask your doctor if ADCETRIS plus AVD is right for you.

Continue watching to review the Important Safety Information and read Important Facts, including BOXED WARNING at www.ADCETRIS.com.

Important Safety Information

• What is the most important serious safety information I should know about ADCETRIS?
• Progressive Multifocal Leukoencephalopathy (PML): Patients treated with ADCETRIS can have a rare, serious brain infection, called PML that can lead to death. Tell your doctor immediately if you have mood or behavior changes, confusion, problems in thinking or loss of memory, changes in vision, speech or walking, or decreased strength or weakness on one side of the body. PML may also be caused by prior treatments or diseases that weakened your immune system.
• Do not take ADCETRIS if you are receiving bleomycin.

What are the other possible serious side effects of ADCETRIS?

• Nerve damage (peripheral neuropathy). Tell your doctor if you have any numbness or tingling in your hands or feet or any muscle weakness.
• Allergic and infusion reactions. Tell your doctor if you experience symptoms of fever, chills, rash, or breathing problems within 24 hours of infusion. If you have a reaction, you may be given medicines before your ADCETRIS treatment.
• Blood problems. Serious cases, including death, of fever with a low number of white blood cells, have occurred with ADCETRIS. Serious cases of a low number of white blood cells, a low number of platelets, or a low number of red blood cells can occur. Your doctor will do blood tests to check your blood cell levels during ADCETRIS treatment. Your doctor may give you a medicine called G-CSF. Tell your doctor if you have a fever of 100.5 degrees Fahrenheit or higher, chills, cough, or pain when you urinate.
• Infections caused by bacteria, fungi, or viruses have been reported.
• Tumor lysis syndrome is caused by the fast breakdown of cancer cells. Your doctor will monitor you for symptoms.
• Patients with severe kidney disease or moderate or severe liver disease may have more side effects and deaths than patients without kidney or liver problems.
• Liver problems. Serious liver problems, including death, can occur. Tell your doctor if you feel tired, do not feel like eating, have upper stomach pain, dark urine, or yellow skin and eyes (jaundice).
• Lung problems. Serious lung problems, including death, can occur. Tell your doctor If you have a new cough, a cough that gets worse or feel out of breath.
• Skin problems called Stevens-Johnson syndrome and toxic epidermal necrolysis can happen. Tell your doctor if you have rash, hives, sores in your mouth or blistering or peeling skin.
• Gastrointestinal (GI) problems. Serious cases, including death, related to the pancreas, stomach, intestine, and colon, can happen. If you have lymphoma that involves your stomach or intestine, you could have a higher risk of GI problems. Tell your doctor if you have severe stomach pain, chills, fever, nausea, vomiting, or diarrhea.
• High blood sugar. Your doctor will test your blood during ADCETRIS treatment. Tell your doctor if you need to urinate more often than usual, are very thirsty, or have blurry vision.

The most common side effects (greater than or equal to 20%) in adult patients who received ADCETRIS are:

• nerve damage (peripheral neuropathy)
• nausea
• feeling tired
• muscle pain
• constipation
• diarrhea
• vomiting
• fever
• infection in the nose or sinuses
• sores or swelling in the mouth and/or in the digestive tract
• upper stomach pain
• rash

The most common laboratory abnormalities (greater than or equal to 20%) in adult patients who received ADCETRIS are:

• a decrease in white blood cells
• an increase in creatinine
• a decrease in hemoglobin
• an increase in blood sugars
• an increase in alanine aminotransferase (ALT)
• an increase in aspartate aminotransferase (AST)

The most common severe side effects (greater than or equal to 5%) in pediatric patients who received ADCETRIS are:

• a low number with white blood cells
• a low number of red blood cells
• a low number of platelets
• fever with a low number of white blood cells
• sores or swelling in the mouth
• infection

These are not all the possible side effects of ADCETRIS. Tell your doctor about any side effect that bothers you or does not go away. If you have certain side effects, your doctor may lower your dose, delay, or stop your ADCETRIS treatment.

What should I tell my doctor before I start treatment with ADCETRIS?

• All your medical conditions, including if you have kidney, liver, or lung problems, an infection, or diabetes.
• If you are pregnant or plan to become pregnant. ADCETRIS may harm your unborn baby. Females who are able to become pregnant: your doctor should give you a pregnancy test before starting ADCETRIS treatment. You should use effective birth control during ADCETRIS treatment and for two months after your last dose of ADCETRIS. Tell your doctor right away if you become pregnant or think you are pregnant during ADCETRIS treatment.
• Men with female partners who can get pregnant should use effective birth control during ADCETRIS treatment and for four months after the last dose.
• If you are breastfeeding or plan to breastfeed. Do not breastfeed during ADCETRIS treatment.
• All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. ADCETRIS and certain other medicines can affect each other.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www. fda.gov/Safety/MedWatch or call 1-800 FDA-1088.

Please see important facts about ADCETRIS, including BOXED WARNING.

Video Transcript

I was 21 years old. I was about to graduate and begin my career as a professional dancer, and I was diagnosed with previously untreated Stage 3 classical Hodgkin lymphoma. At the time, I didn't even know what lymphoma was.

So I had just finished school, and now I was facing several months of cancer treatment. I had so many questions. What treatments are available? Are they effective? Are they safe? Will they have long-term impact on my ability to dance, to perform? What about fertility? I'd return home to Washington, DC for treatment, and that's when my oncologist told me ADCETRIS plus AVD was a treatment option for me. At this point, I knew a bit about ABVD, which is a traditional combination chemotherapy regimen for Hodgkins, but I hadn't heard of ADCETRIS. My oncologist explained that ADCETRIS itself was not chemo, but given together with the chemotherapy regimen AVD, when treating stage 3 or 4 classical Hodgkin lymphoma patients for the first time. My oncologist described ADCETRIS plus AVD as an alternative to ABVD that could be more effective. We talked about a major clinical study called ECHELON-1 that compared these two treatments in people who were treating their stage 3 or 4 classical Hodgkin lymphoma for the first time.

It showed that ADCETRIS plus AVD reduced the risk of cancer progression or the need for additional cancer therapy or death by 23% when compared to ABVD. Recently, I learned that as part of a follow-up looking at data collected six years after the study began, people who received ADCETRIS plus AVD had an an estimated 41% reduced risk of death compared to those treated with ABVD. My oncologist and I talked about potential risks of treatment and all ADCETRIS side effects, especially ones that could be serious or have lasting impact before making a decision.

Fertility was part of this conversation. I'd always said I didn't want kids, but after my diagnosis, I thought, “Wait a minute, what if I change my mind? Will I even have the chance?” It's important to discuss all benefits and risks with your doctor when making a treatment decision. Right from the beginning, I remember asking, “how well do these treatments work?” He told me about all the experiences he'd had treating other patients like me. And that's one of the reasons we felt confident choosing ADCETRIS plus AVD.

Amina was treated with ADCETRIS (brentuximab vedotin) plus AVD (Adriamycin, vinblastine, and dacarbazine).

ADCETRIS plus AVD is a prescription therapy approved for adults with previously untreated stage 3 or 4 classical Hodgkin lymphoma.

ADCETRIS will not work for everyone. Individual results may vary. The information provided is for educational purposes only and is not intended to replace discussions with a health care provider. Ask your doctor if ADCETRIS plus AVD is right for you.

Continue watching to review the Important Safety Information and read Important Facts, including BOXED WARNING at www.ADCETRIS.com.

Important Safety Information

• What is the most important serious safety information I should know about ADCETRIS?
• Progressive Multifocal Leukoencephalopathy (PML): Patients treated with ADCETRIS can have a rare, serious brain infection, called PML that can lead to death. Tell your doctor immediately if you have mood or behavior changes, confusion, problems in thinking or loss of memory, changes in vision, speech or walking, or decreased strength or weakness on one side of the body. PML may also be caused by prior treatments or diseases that weakened your immune system.
• Do not take ADCETRIS if you are receiving bleomycin.

What are the other possible serious side effects of ADCETRIS?

• Nerve damage (peripheral neuropathy). Tell your doctor if you have any numbness or tingling in your hands or feet or any muscle weakness.
• Allergic and infusion reactions. Tell your doctor if you experience symptoms of fever, chills, rash, or breathing problems within 24 hours of infusion. If you have a reaction, you may be given medicines before your ADCETRIS treatment.
• Blood problems. Serious cases, including death, of fever with a low number of white blood cells, have occurred with ADCETRIS. Serious cases of a low number of white blood cells, a low number of platelets, or a low number of red blood cells can occur. Your doctor will do blood tests to check your blood cell levels during ADCETRIS treatment. Your doctor may give you a medicine called G-CSF. Tell your doctor if you have a fever of 100.5 degrees Fahrenheit or higher, chills, cough, or pain when you urinate.
• Infections caused by bacteria, fungi, or viruses have been reported.
• Tumor lysis syndrome is caused by the fast breakdown of cancer cells. Your doctor will monitor you for symptoms.
• Patients with severe kidney disease or moderate or severe liver disease may have more side effects and deaths than patients without kidney or liver problems.
• Liver problems. Serious liver problems, including death, can occur. Tell your doctor if you feel tired, do not feel like eating, have upper stomach pain, dark urine, or yellow skin and eyes (jaundice).
• Lung problems. Serious lung problems, including death, can occur. Tell your doctor If you have a new cough, a cough that gets worse or feel out of breath.
• Skin problems called Stevens-Johnson syndrome and toxic epidermal necrolysis can happen. Tell your doctor if you have rash, hives, sores in your mouth or blistering or peeling skin.
• Gastrointestinal (GI) problems. Serious cases, including death, related to the pancreas, stomach, intestine, and colon, can happen. If you have lymphoma that involves your stomach or intestine, you could have a higher risk of GI problems. Tell your doctor if you have severe stomach pain, chills, fever, nausea, vomiting, or diarrhea.
• High blood sugar. Your doctor will test your blood during ADCETRIS treatment. Tell your doctor if you need to urinate more often than usual, are very thirsty, or have blurry vision.

The most common side effects (greater than or equal to 20%) in adult patients who received ADCETRIS are:

• nerve damage (peripheral neuropathy)
• nausea
• feeling tired
• muscle pain
• constipation
• diarrhea
• vomiting
• fever
• infection in the nose or sinuses
• sores or swelling in the mouth and/or in the digestive tract
• upper stomach pain
• rash

The most common laboratory abnormalities (greater than or equal to 20%) in adult patients who received ADCETRIS are:

• a decrease in white blood cells
• an increase in creatinine
• a decrease in hemoglobin
• an increase in blood sugars
• an increase in alanine aminotransferase (ALT)
• an increase in aspartate aminotransferase (AST)

The most common severe side effects (greater than or equal to 5%) in pediatric patients who received ADCETRIS are:

• a low number with white blood cells
• a low number of red blood cells
• a low number of platelets
• fever with a low number of white blood cells
• sores or swelling in the mouth
• infection

These are not all the possible side effects of ADCETRIS. Tell your doctor about any side effect that bothers you or does not go away. If you have certain side effects, your doctor may lower your dose, delay, or stop your ADCETRIS treatment.

What should I tell my doctor before I start treatment with ADCETRIS?

• All your medical conditions, including if you have kidney, liver, or lung problems, an infection, or diabetes.
• If you are pregnant or plan to become pregnant. ADCETRIS may harm your unborn baby. Females who are able to become pregnant: your doctor should give you a pregnancy test before starting ADCETRIS treatment. You should use effective birth control during ADCETRIS treatment and for two months after your last dose of ADCETRIS. Tell your doctor right away if you become pregnant or think you are pregnant during ADCETRIS treatment.
• Men with female partners who can get pregnant should use effective birth control during ADCETRIS treatment and for four months after the last dose.
• If you are breastfeeding or plan to breastfeed. Do not breastfeed during ADCETRIS treatment.
• All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. ADCETRIS and certain other medicines can affect each other.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www. fda.gov/Safety/MedWatch or call 1-800 FDA-1088.

Please see important facts about ADCETRIS, including BOXED WARNING.

Video Transcript

Ringing the bell at the infusion center is a big deal. It's a bit of a celebration. When you ring the bell, it means your entire regimen is complete. On my first day of treatment, someone rang the bell. There was an older woman next to me receiving her infusion, and she looked over and said, “That's going to be us soon.” I was just getting started, and I saw someone make it through the tunnel and finish their therapy. That was a good sign, a reminder of my goal. But for me, this was just the beginning. Once my oncologist and I chose ADCETRIS plus AVD for my previously untreated stage 3 classical Hodgkin lymphoma, everyone on my care team worked to get me started as soon as possible.

Everyone's experience navigating the healthcare system, dealing with insurance coverage, and starting treatment is different. Once I got my diagnosis, I was fortunate to be able to start my ADCETRIS plus AVD treatment fast. We handled all the pre-treatment testing, things like blood work or visiting the pulmonologist, a biopsy, pretty quickly. I really feel like my team went above and beyond. My oncologist worked to keep things moving and answer my questions, especially considering the delays I had getting diagnosed.

I'm a planner. I have a schedule for what I want to accomplish in life, and I know how I want to accomplish it. So when I was diagnosed with stage 3 classical Hodgkin lymphoma, we got to work. With the support of my family and my boyfriend and the help of my oncologist and care team, I chose ADCETRIS plus AVD and started treatment as soon as I could. Six months later, I got to ring the bell. It felt like such a weight lifted from my chest. That was a really emotional moment. I remember my dad telling me he felt like he'd been holding his breath for all that time, and now he felt like he could finally breathe.

Amina was treated with ADCETRIS (brentuximab vedotin) plus AVD (Adriamycin, vinblastine, and dacarbazine).

ADCETRIS plus AVD is a prescription therapy approved for adults with previously untreated stage 3 or 4 classical Hodgkin lymphoma.

ADCETRIS will not work for everyone. Individual results may vary. The information provided is for educational purposes only and is not intended to replace discussions with a health care provider. Ask your doctor if ADCETRIS plus AVD is right for you.

Continue watching to review the Important Safety Information and read Important Facts, including BOXED WARNING at www.ADCETRIS.com.

Important Safety Information

• What is the most important serious safety information I should know about ADCETRIS?
• Progressive Multifocal Leukoencephalopathy (PML): Patients treated with ADCETRIS can have a rare, serious brain infection, called PML that can lead to death. Tell your doctor immediately if you have mood or behavior changes, confusion, problems in thinking or loss of memory, changes in vision, speech or walking, or decreased strength or weakness on one side of the body. PML may also be caused by prior treatments or diseases that weakened your immune system.
• Do not take ADCETRIS if you are receiving bleomycin.

What are the other possible serious side effects of ADCETRIS?

• Nerve damage (peripheral neuropathy). Tell your doctor if you have any numbness or tingling in your hands or feet or any muscle weakness.
• Allergic and infusion reactions. Tell your doctor if you experience symptoms of fever, chills, rash, or breathing problems within 24 hours of infusion. If you have a reaction, you may be given medicines before your ADCETRIS treatment.
• Blood problems. Serious cases, including death, of fever with a low number of white blood cells, have occurred with ADCETRIS. Serious cases of a low number of white blood cells, a low number of platelets, or a low number of red blood cells can occur. Your doctor will do blood tests to check your blood cell levels during ADCETRIS treatment. Your doctor may give you a medicine called G-CSF. Tell your doctor if you have a fever of 100.5 degrees Fahrenheit or higher, chills, cough, or pain when you urinate.
• Infections caused by bacteria, fungi, or viruses have been reported.
• Tumor lysis syndrome is caused by the fast breakdown of cancer cells. Your doctor will monitor you for symptoms.
• Patients with severe kidney disease or moderate or severe liver disease may have more side effects and deaths than patients without kidney or liver problems.
• Liver problems. Serious liver problems, including death, can occur. Tell your doctor if you feel tired, do not feel like eating, have upper stomach pain, dark urine, or yellow skin and eyes (jaundice).
• Lung problems. Serious lung problems, including death, can occur. Tell your doctor If you have a new cough, a cough that gets worse or feel out of breath.
• Skin problems called Stevens-Johnson syndrome and toxic epidermal necrolysis can happen. Tell your doctor if you have rash, hives, sores in your mouth or blistering or peeling skin.
• Gastrointestinal (GI) problems. Serious cases, including death, related to the pancreas, stomach, intestine, and colon, can happen. If you have lymphoma that involves your stomach or intestine, you could have a higher risk of GI problems. Tell your doctor if you have severe stomach pain, chills, fever, nausea, vomiting, or diarrhea.
• High blood sugar. Your doctor will test your blood during ADCETRIS treatment. Tell your doctor if you need to urinate more often than usual, are very thirsty, or have blurry vision.

The most common side effects (greater than or equal to 20%) in adult patients who received ADCETRIS are:

• nerve damage (peripheral neuropathy)
• nausea
• feeling tired
• muscle pain
• constipation
• diarrhea
• vomiting
• fever
• infection in the nose or sinuses
• sores or swelling in the mouth and/or in the digestive tract
• upper stomach pain
• rash

The most common laboratory abnormalities (greater than or equal to 20%) in adult patients who received ADCETRIS are:

• a decrease in white blood cells
• an increase in creatinine
• a decrease in hemoglobin
• an increase in blood sugars
• an increase in alanine aminotransferase (ALT)
• an increase in aspartate aminotransferase (AST)

The most common severe side effects (greater than or equal to 5%) in pediatric patients who received ADCETRIS are:

• a low number with white blood cells
• a low number of red blood cells
• a low number of platelets
• fever with a low number of white blood cells
• sores or swelling in the mouth
• infection

These are not all the possible side effects of ADCETRIS. Tell your doctor about any side effect that bothers you or does not go away. If you have certain side effects, your doctor may lower your dose, delay, or stop your ADCETRIS treatment.

What should I tell my doctor before I start treatment with ADCETRIS?

• All your medical conditions, including if you have kidney, liver, or lung problems, an infection, or diabetes.
• If you are pregnant or plan to become pregnant. ADCETRIS may harm your unborn baby. Females who are able to become pregnant: your doctor should give you a pregnancy test before starting ADCETRIS treatment. You should use effective birth control during ADCETRIS treatment and for two months after your last dose of ADCETRIS. Tell your doctor right away if you become pregnant or think you are pregnant during ADCETRIS treatment.
• Men with female partners who can get pregnant should use effective birth control during ADCETRIS treatment and for four months after the last dose.
• If you are breastfeeding or plan to breastfeed. Do not breastfeed during ADCETRIS treatment.
• All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. ADCETRIS and certain other medicines can affect each other.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www. fda.gov/Safety/MedWatch or call 1-800 FDA-1088.

Please see important facts about ADCETRIS, including BOXED WARNING.