PATIENT & CARE PARTNER RESOURCES
If you’re looking for more information about DARZALEX FASPRO® or DARZALEX®, here are some useful tools and materials to help you on your treatment journey.
Core Patient Brochure
Use this comprehensive resource to learn more about the treatment experience with DARZALEX FASPRO®.
Understanding Combination Treatment Brochures
Use these resources to learn more about your diagnosis and potential treatment options, how you may respond to treatment, and what to expect with DARZALEX FASPRO®.
What to Expect Guide
Understand what will happen before, during, and after treatment with DARZALEX FASPRO®.
Doctor Conversation Starter
It’s important to have open, honest discussions with your healthcare team. They want to answer your questions to help you make informed decisions.
Generate a list of questions for your doctor with our Personalized Conversation Starter.
VIDEOS TO HELP SUPPORT YOUR TREATMENT JOURNEY
There’s a world of support all around you. Watch the videos below to learn more about multiple myeloma, the patient experience, what to expect during treatment with DARZALEX FASPRO® and DARZALEX®, and more.
DARZALEX FASPRO® patients
Todd & Diane's story
Hear from Todd, a newly diagnosed, transplant-eligible patient, along with his wife and care partner, Diane, about their experience with DARZALEX FASPRO® + VRd (bortezomib, lenalidomide, & dexamethasone)
Giuseppe’s story
Watch how Giuseppe, a patient on DARZALEX FASPRO®, and his wife, Bernadette, handle living with multiple myeloma.
DARZALEX® patients
Deb’s story
Diagnosed in 2009. Taking DARZALEX® as monotherapy
“One of the things with cancer is that it never takes place at a good time…” Deb, along with her husband, Harry, had their retirement plans turned upside down when Deb was diagnosed with multiple myeloma. After being on multiple treatments, she is now responding to DARZALEX®.
Jim’s story
Diagnosed in 2015. Taking DARZALEX® in combination with lenalidomide and dexamethasone
“So every treatment, every doctor’s appointment, and then every football game, I’ve worn this exact jersey…” Jim was on the verge of 50 and training to run his first marathon when he was diagnosed with multiple myeloma. After he experienced his first relapse, his doctor recommended DARZALEX®.
Matt’s story
Diagnosed in 2011. Taking DARZALEX® in combination with pomalidomide and dexamethasone
“How I see myself and my purpose in the world has changed.” Matt’s journey to his diagnosis was confusing and overwhelming. After receiving prior therapies and relapsing, his doctors decided to add DARZALEX® as part of his regimen.
Harry’s story
Care partner since 2009
“I even had a little jersey made up that I would wear on occasion, which says ‘cancer-caddie’...” With a positive attitude and sense of humor, Harry is more than a care partner. He’s a well-informed “caddie” helping Deb navigate the sometimes tricky course of multiple myeloma.
Stories from patients living with multiple myeloma
Your story could help others learn about their condition. Share it.
Are you or a loved one being treated with DARZALEX FASPRO® or DARZALEX®? If so, please consider sharing your story.
Reach out to learn more! Janssen SHARE Network members have the opportunity to share their story through speaking engagements, video shoots, media interviews, or may be featured in promotional materials.
Learn more about sharing your DARZALEX FASPRO® or DARZALEX® story by calling us toll-free at 1-855-369-1305, emailing us at [email protected], or clicking the button below.
What is DARZALEX FASPRO®?
Before starting treatment, it’s important to talk with your doctor about expectations. Watch this video to learn more about DARZALEX FASPRO® and what to expect.
Questions in the Moment: Disease Education
Multiple myeloma diagnosis? This video will help identify some key questions to ask your care team to learn more about your diagnosis and what to expect on your journey ahead.
Questions in the Moment: Getting Connected
You are not alone on your journey. Hear from fellow patients and care partners about how your care team can help give you the support you need.
Understanding the Patient Experience With DARZALEX FASPRO®
Multiple myeloma diagnosis? This video will help identify some key questions to ask your care team to learn more about your diagnosis and what to expect on your journey ahead.
DARZALEX FASPRO® patients
Todd & Diane's story
Hear from Todd, a newly diagnosed, transplant-eligible patient, along with his wife and care partner, Diane, about their experience with DARZALEX FASPRO® + VRd (bortezomib, lenalidomide, & dexamethasone)
Giuseppe’s story
Watch how Giuseppe, a patient on DARZALEX FASPRO®, and his wife, Bernadette, handle living with multiple myeloma.
DARZALEX® patients
Deb’s story
Diagnosed in 2009. Taking DARZALEX® as monotherapy
“One of the things with cancer is that it never takes place at a good time…” Deb, along with her husband, Harry, had their retirement plans turned upside down when Deb was diagnosed with multiple myeloma. After being on multiple treatments, she is now responding to DARZALEX®.
Jim’s story
Diagnosed in 2015. Taking DARZALEX® in combination with lenalidomide and dexamethasone
“So every treatment, every doctor’s appointment, and then every football game, I’ve worn this exact jersey…” Jim was on the verge of 50 and training to run his first marathon when he was diagnosed with multiple myeloma. After he experienced his first relapse, his doctor recommended DARZALEX®.
Matt’s story
Diagnosed in 2011. Taking DARZALEX® in combination with pomalidomide and dexamethasone
“How I see myself and my purpose in the world has changed.” Matt’s journey to his diagnosis was confusing and overwhelming. After receiving prior therapies and relapsing, his doctors decided to add DARZALEX® as part of his regimen.
Harry’s story
Care partner since 2009
“I even had a little jersey made up that I would wear on occasion, which says ‘cancer-caddie’...” With a positive attitude and sense of humor, Harry is more than a care partner. He’s a well-informed “caddie” helping Deb navigate the sometimes tricky course of multiple myeloma.
Stories from patients living with multiple myeloma
Your story could help others learn about their condition. Share it.
Are you or a loved one being treated with DARZALEX FASPRO® or DARZALEX®? If so, please consider sharing your story.
Reach out to learn more! Janssen SHARE Network members have the opportunity to share their story through speaking engagements, video shoots, media interviews, or may be featured in promotional materials.
Learn more about sharing your DARZALEX FASPRO® or DARZALEX® story by calling us toll-free at 1-855-369-1305, emailing us at [email protected], or clicking the button below.
What is DARZALEX FASPRO®?
Before starting treatment, it’s important to talk with your doctor about expectations. Watch this video to learn more about DARZALEX FASPRO® and what to expect.
Questions in the Moment: Disease Education
Multiple myeloma diagnosis? This video will help identify some key questions to ask your care team to learn more about your diagnosis and what to expect on your journey ahead.
Questions in the Moment: Getting Connected
You are not alone on your journey. Hear from fellow patients and care partners about how your care team can help give you the support you need.
Understanding the Patient Experience With DARZALEX FASPRO®
Multiple myeloma diagnosis? This video will help identify some key questions to ask your care team to learn more about your diagnosis and what to expect on your journey ahead.
Leaning on your care team
Having multiple myeloma affects not only you, but also the people around you. You don’t have to face your disease alone. Your care team includes healthcare professionals as well as the people close to you.
Your Support Partner
Your support partner is there for you each day. You can get more out of visits with your healthcare provider when you and your support partner understand the needs of one another.
Your Friends and Family
Your friends and family may want to help with everyday tasks that may be difficult. They can also provide physical and emotional support based on what you need.
Your Youngest Supporters
Your support system might include the children in your life. Even though they may not understand what is happening or how to help, they can be there for you during your treatment journey.
Spread the word
That’s My WordTM raises awareness about the disproportionate impact of multiple myeloma (MM) on the Black community. Learn more about making a promise to get involved.
Managing treatment
Keep track of upcoming appointments by printing out your Treatment Calendar.
Dosing Schedule
Keep track of your dosing schedule and plan with your doctor for your next visit with our treatment calendar.
Multiple myeloma education and support groups
Living with multiple myeloma, and caring for someone who has it, requires physical and emotional support. Here is a short list of organizations that provide education and support groups that may be able to help. For additional organizations not listed here, use the Johnson & Johnson Advocacy Connector or talk to a Care Navigator.
American Cancer Society (link is external)
The American Cancer Society offers information, day-to-day help, and emotional support to cancer patients as well as their family and friends. From free lodging and transportation to help making decisions about your care, they offer programs, services, and resources that can help you on your journey.
CancerCare (link is external)
CancerCare.org offers patients and caregivers counseling, support groups, educational workshops, publications, financial assistance, and community programs.
Cancer Support Community (link is external)
Cancer Support Community offers social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone.
International Myeloma Foundation (link is external)
The International Myeloma Foundation provides information online and by phone. They offer patient and caregiver education materials, and conduct patient and family seminars and regional community workshops. They can also help you find support groups.
Leukemia and Lymphoma Society (link is external)
The Leukemia and Lymphoma Society offers information specialists, peer-to-peer support, and online chats for both patients and caregivers. They also produce the “Bloodline with LLS” podcast for cancer survivors and offer financial guidance and support.
Multiple Myeloma Research Foundation (link is external)
The Multiple Myeloma Research Foundation offers patient education programs and a nurse support line. They can also help you find a treatment center, clinical trials, support groups, and financial assistance programs.
Myeloma Beacon (link is external)
The Myeloma Beacon provides news, resources, and online forums for patients, medical professionals, and others interested in multiple myeloma.
Myeloma Crowd (link is external)
The Myeloma Crowd aggregates and shares the latest research and provides social media groups where patients can exchange information. They also host live patient meetings and seminars, especially for relapsed and high-risk patients.
HealthTree Foundation (link is external)
The HealthTree Foundation provides news, education, and events about multiple myeloma. They also offer communities to help keep you connected to other patients and care partners.
Patient Empowerment Network (link is external)
Patient Empowerment Network (PEN) equips patients and caregivers with the tools and resources needed to understand their cancer diagnosis and take an active role in their treatment journey.
Black Myeloma Health (link is external)
The Black Myeloma Health program helps educate on health disparity and inequality as well as provide resources and education about how multiple myeloma largely affects the Black community.
Patient Power (link is external)
Patient Power maintains a rich library of cancer information videos for patients and professionals alike. They can also help you locate financial, insurance, and family resources.
That’s My WordTM (link is external)
That’s My WordTM offers resources and education about multiple myeloma and its disproportionate impact on the Black community.
Additional resources from
Johnson & Johnson
Advocacy Connector
Advocacy Connector is a Johnson & Johnson-sponsored resource that connects patients and caregivers to national and state-specific advocacy groups that offer resources that may be relevant to your needs. You can also ask your Care Navigator for information and support.
Caring for yourself
Talking to your family and friends
There’s no one “right” way to tell your family and friends that you have multiple myeloma. Here are some tips to help guide you:
Most people need and want to talk to someone when they find themselves dealing with cancer. Only you can decide when and how to tell your family and friends.
Before you talk to others, think through your own feelings, your reasons for telling them, and what you expect of them.
Telling those closest to you can help you take in the reality of what’s happening. As you talk, you may come up with other concerns that need to be addressed. Write down the questions that come up and discuss them with your healthcare team. Use our Doctor Conversation Starter to create a list of questions for your next appointment.
Some people are empowered by information, while it can make others feel anxious and overwhelmed. Keep this in mind as you share.
It might be helpful to explain what multiple myeloma is, what treatments you might need, and how to plan for the future.
It can get tiring to tell a lot of people details about your illness over and over again. There are websites specifically designed to help keep family and friends updated so you don’t have to spend hours phoning, texting, or emailing if you don’t want to.
You’ll probably have many different emotions when you hear your diagnosis and go through treatment. It’s normal to wonder, “Why me?” or to feel sad, angry, or afraid. Physical and chemical changes from the treatment or the cancer itself can also affect your emotions. So allow yourself to have those feelings.
Sometimes you may not want to talk about your feelings. You can tell others just by saying something like, “You know, I’m usually okay talking about this but just not today. I’m sure you understand.”
Many people have found that a counselor or support group can be a tremendous help during this difficult time.
Living with multiple myeloma and its treatment can affect family roles and routines. Talk with your family about the support you need. This way, you can make decisions as a team and work together.
Try not to put on a “happy face” if you don’t feel that way. Although you want to protect your loved ones by acting cheerful, it will help you and them more if you share how you feel.
If you’re afraid you’ll become a burden, talk with your doctor about what you can do, and try to keep up with your regular activities. You and your family should keep doing things you always enjoyed together. There are real benefits to keeping up your daily routine.
When people ask how they can help, you might respond, out of courtesy, “Oh, nothing right now. I’m just fine.” Remember that most people really do want to help, and it’s okay to ask for support.
When you do ask, be as specific as possible about the support you need. For example, tell them when you need a ride to the doctor, or ask if they might be able to help around the house, run errands, or walk the dog. There will also be times when you don’t know what you need, but even just saying that can provide perspective of how you’re feeling.
Making a comprehensive plan
It takes more than medicine to manage multiple myeloma. A holistic plan addresses more than just the symptoms and disease and takes care of your mind, body, and spirit. Here are some ideas that can help you get started:
There’s a powerful mind-body connection that may affect our health. Depending on how long you’ve been living with multiple myeloma and its treatment, you could feel anxious, afraid, uncertain, angry, or depressed. It’s normal to have any and all of these feelings. Your feelings may also change over time. That’s normal, too. Here are some things you can do to deal with your emotions:
- Talk about your feelings with your family or friends
- Keep a diary or journal
- See a counselor and/or join a support group
- Express your feelings in other ways, such as music, painting, or creative writing
Research has shown that mindfulness meditation may help relieve anxiety, stress, fatigue, and sleep disturbances, and improve general mood and quality of life for people who suffer from cancer symptoms and treatment side effects. Mindfulness meditation is the practice of being in the present moment and can be learned on your own.
Eat well
There is no “multiple myeloma diet.” However, a nutritious, well-balanced diet can help you stay as healthy as possible for as long as possible. Fresh fruits, vegetables, whole grains, and lean proteins, such as fish, poultry, or beans, are recommended. Limit your use of cream-based sauces, dressings, and dips, and avoid refined carbohydrates, such as pastries and sweetened breakfast cereals. Drink about 8 to 10 glasses of water a day.
It may be good to also discuss diet with your doctor, even if there are no changes.
Stay active
Regular exercise can help you reduce stress and relieve fatigue. Talk to your doctor before you start a new exercise program. Set goals to slowly increase your activity level. You may want to take a walk, do yoga, or try range-of-motion exercises to help reduce tiredness, relieve stress, and improve your sense of well-being.
Get rest
Sleep problems are common during treatment for multiple myeloma. Experts say you should try to sleep 7 to 8 hours each night. Here are some tips that can help:
- Avoid caffeine in coffee, tea, soda, or chocolate
- Don’t exercise too late in the evening
- If you nap, make it less than 30 minutes and do it early in the day
- Avoid too much time in bed. It can make you weak
If you have trouble sleeping, talk to your doctor.
You should find a quiet space to meditate. You don’t need an entire room or a completely empty area. Just make sure there are no distractions such as the television, phone, or computer. Sit comfortably with your feet supported, your back comfortably straight (not rigid), and your hips higher than your knees. Allow your gaze to fall at a point a few feet in front of you, but do not focus on a particular object.
As you experience the moment, thoughts will come into your mind. They should be allowed to flow freely. If the thoughts become a central focus, gently bring your mind back to the moment.
One way of doing this is to be aware of the sensation of your breathing and using this as an anchor for your mind to come back to should it wander. In the beginning of your practice, aim to sit for 10 to 15 minutes and build up to sitting for 45 minutes to 1 hour.
There’s no doubt that having multiple myeloma and going for treatments is going to disrupt your schedule. Try to live each day as normally as you can.
Think about how you want to spend your time. What makes you happy? What types of things do you enjoy the most? What gives you “purpose”? If you feel well enough, and with a doctor’s guidance, you may be able to continue to do what you did before your diagnosis and treatment, including:
- Going to work
- Spending time with family and friends
- Taking part in activities
- Going on trips
Taking part in the decision-making process is one way to ensure that you get the best care for you. Studies have shown that shared decision-making has numerous benefits. Among them:
- Increased confidence and satisfaction with your treatment
- Enhanced trust in your healthcare team
- Decreased stress and anxiety regarding decisions
The key to shared decision-making is having open discussions with your healthcare team. Here’s how you can start:
- Express your desire to be involved in treatment decisions
- Ask questions to understand your options
- Let the doctor know your goals, values, and preferences
- Ask for time if you need it (and if it’s appropriate)
- Arrive at a treatment decision together
Remember, you are your own best advocate.
Create a personalized list of questions for your next doctor’s appointment
CARE PARTNER GUIDANCE
Moving forward with your loved one
Being a caregiver can be challenging. It’s normal for you to feel nervous or overwhelmed about what is expected of you. And your role can evolve as your loved one’s needs change. By supporting a friend or family member receiving DARZALEX FASPRO® or DARZALEX®, you can have a positive impact and influence on them.
Your loved one may have questions about different aspects of treatment. You can help your loved one by taking notes and helping ask questions during doctor visits. Your support and knowledge can help them during this time.
By providing encouragement and support, you can help your loved one stick with their treatment plan and take other steps to get well, such as eating right or dealing with certain emotions. There’s no way to anticipate everything you’ll need to know as a care partner, but by becoming familiar with the disease and treatment, you can offer support to help your loved one make informed decisions.
But how do you take care of you?
Take an honest look at what you can and can't do. Be willing to let go of tasks that others can help you with. Some examples may be:
- Helping with chores around the house
- Running errands
- Driving to doctors’ appointments
Accepting help from others isn't always easy. Remember that getting help for yourself will enable you to better support your loved one.
As a care partner, it can be difficult to take the time to care for and focus on yourself. It can even feel selfish at times. Self-care is an important part of caring for others. Maintaining your own health and energy allows you to more fully enjoy time with your loved one and provide the best care possible.
Consider spending time doing activities that:
- Involve other people, such as having lunch with a friend
- Give you a sense of accomplishment, such as exercising or finishing a project
- Make you feel good or relaxed, such as watching a funny movie or taking a walk
Set aside time during the day, such as during a meal, when you do not talk about illness.
The support of friends and family can be extremely helpful to you as a care partner. There are many kinds of support programs, including one-on-one or group counseling and support groups. Talking with other care partners can help you feel less alone. You can also get useful ideas from others who have been in your situation.
Talk with a nurse or social worker to learn about services in your area. If you can’t visit a group in person, there are also online communities of people whose lives have been touched by cancer.
