Mary Ann’s story: Being informed matters
“My experience made me realize how important it is to build a trusting relationship with your doctor—you should be able to feel like you can connect with them throughout your treatment journey.”
Video Transcript
My name is Mary Ann. I am 38, and I was born and raised in Southern California. I still live in LA with my husband and our two daughters. I've always worked in real estate and construction, and I currently work as an interior designer. My journey actually began when I passed by a mirror and I noticed a golf ball-sized lump on my sternum. I ended up seeing a dermatologist who, after a biopsy, said that my lump was a lipoma. Many weeks passed, and because of the lump, it started to hurt whenever I lifted up my arm. I went to see more doctors and do more tests, and ultimately, I was diagnosed with stage 4 classical Hodgkin lymphoma. A huge part of the entire process and getting through treatment was the partnership I had with my oncologist and how I trusted him to listen and to support me with my treatment decision. He was actually recommended to me by a friend. I started looking into him, saw his background, his education, and how well-renowned he was in Hodgkins. From the first time we met, I knew he was someone who could make a difference. It was the first time in a while I felt hope.
We ended up having a really open and honest relationship that felt so different from the other doctors I've had in the past. He never dismissed any of my calls or emails. He made me feel comfortable, and he would explain things in a way that I could understand. I had started reading up on what my treatment options were and the things I was concerned about, so I shared everything I was thinking about to my oncologist in our first meeting. He listened and he told me about ADCETRIS plus AVD. I had already read all about the ECHELON-1 trial, so I knew a lot about ADCETRIS plus AVD, but hearing it from my oncologist was so important. We talked about effectiveness and side effects and what to expect when starting treatment. It meant so much to me that my doctor listened when I spoke up. He was very open to having this be a discussion between us, not just him saying, “this is what I think you should do.” He was always respectful and reassuring, and he really made me feel comfortable being vulnerable in front of him. He treated me as a partner, and I just think the world of him.
My experience made me realize how important it is to build a trusting relationship with your doctor. You should be able to feel like you can connect with them throughout your treatment journey. I've learned that it's important to take time to understand your options. Do your research. Bring those options to your doctor and get their opinion. Advocate for yourself, and if they don't treat you as a partner during your care, get another opinion. At the end of the day, you're the one that has to live your life. Nobody else can. So you need to be an active participant in discussions about your health. If that's going to help improve your chances, you need to be the one speaking up and making those decisions. You have to go the extra mile for yourself.
Mary Ann 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
When I was diagnosed with stage 4 classical Hodgkin lymphoma, I was also grappling with being a new mom and had just gotten my dream job as an interior designer. During that time, nothing other than my Hodgkins diagnosis seemed to matter. Researching and reading about treatment made me feel more confident and comfortable in my decisions. I really began familiarizing myself with anything I could find online about treatments, including ADCETRIS plus AVD. I'm a data person. I wanted to be able to go read about it and go on forums and hear about other people's experiences. I'm the type of person that prefers to read every single word on the topic and go into appointments discussing these details, asking a million questions, and writing down what my care team tells me. I practically memorized the ECHELON-1 trial for ADCETRIS, which is the study that compared ADCETRIS plus AVD with a traditional chemotherapy regimen called ABVD, in people who were treating their stage four 4 classical Hodgkin lymphoma for the first time. When speaking with my oncologist, I learned that ADCETRIS plus AVD demonstrated higher overall survival, with a 41% reduced risk of death for patients when compared to those treated with ABVD at about six years of follow-up.
He also shared 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. Those results became an important factor in my treatment decision. 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. My doctor told me that the most common side effects for ADCETRIS were nerve damage called peripheral neuropathy, which mostly involved numbness or tingling in the hands or feet and/or weakness in the arms or legs. A low white blood cell count, nausea, constipation, vomiting, feeling tired, diarrhea, fever, hair loss, weight loss, stomach pain, a low red blood cell count, and sores or swelling in the mouth. Learning about ADCETRIS plus AVD made me glad I listened to myself and reinforced that ADCETRIS was the right treatment choice for me. I felt relief that it was a newer option that was shown to be more effective compared to AVBD.
Mary Ann 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
When I started treatment for my Hodgkin lymphoma, I was really focused. I was ready and I wanted my treatment to come and go as quickly as possible. My care team was just outstanding when it came to helping me manage my side effects during treatment. Anytime I experienced a side effect, I would always bring it up to them. Everyone's experience with cancer treatment is different, and each person reacts to treatment differently, too. My oncologist and care team really let me know what I should expect when I was being treated with ADCETRIS plus AVD for my previously untreated stage 4 classical Hodgkin lymphoma. My oncologist was very honest with me. He said that the side effects of treatment may be challenging to deal with. They may feel like they add up over time and get harder at the end. My care team warned me that a common side effect that patients experience, which can be serious, was peripheral neuropathy. They said that I may notice numbness, tingling, or altered sensations when touching hot or cold objects, such as when preparing meals or eating, shopping for groceries, getting dressed, or handling money. They mentioned that most patients who experience peripheral neuropathy in a clinical study, saw it lessen or go away over time.
While I personally did not experience peripheral neuropathy that's typically expected during treatment, they would often ask if I was. I knew it was important to report any symptoms I had to my care team. For example, during treatment, I would feel nauseous, especially the night before and the morning of. I spoke to my care team, and they recommended ways to help relieve the nausea. When taking ADCETRIS, I was also prescribed G-CSF, a type of medication that may help reduce the risk of infection during cancer treatment. I always made sure to speak to my care team about ways to help manage those side effects, too. My care team was always so on top of everything. They would also schedule follow-ups right after my scans, so I never had to wait more than an hour to see the results. They would always respond so quickly, too, even if it was on their lunch break. It's so important to talk to your doctor care team about any side effect concerns you have. My family really supported me during treatment when I experienced side effects. I experienced fatigue and brain fog after my treatments, so my husband became a great caretaker.
He would do all the baby duties in the days following treatment so I could rest, and I never once heard him complain. My mom would also take care of my baby when I was in treatment or at any appointments. My sister actually took leave from work and would accompany me to most of my treatments. They were incredible, and I don't know what I would have done without them. My job allowed me to work from home, and my colleagues knew not to contact me on my treatment days, and it worked out. It helped to schedule my treatment days on Friday so I could have the weekend to rest and recover. I've always been independent and never want to inconvenience anyone. I would push myself at times to pretend to be okay just to spare them, and I didn't realize how silly that was until later when I talked to a therapist. If I could give some advice, I would say, take the help that's offered to you and allow yourself to rest. Treatment can be really hard, and you shouldn't act like it isn't.
I was so happy to be finished with treatment. My family and I just felt this huge wave of relief, and I think I smiled for the first time in months. All I wanted during treatment was to go back to normal life. I just wanted to have silly everyday worries again like everybody else. Looking back at everything that's happened, I'm glad I spoke up. I'm glad I did research and asked questions, and I'm glad I partnered with my doctor every step of the way, and that I chose ADCETRIS plus AVD.
Mary Ann was treated with ADCETRIS (brentuximab devoting) 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.