Real people with multiple myeloma share their stories
There’s a world of support all around you. Watch the videos below to learn more about how other people navigated their multiple myeloma diagnosis and treatment decisions, and learn what to expect when starting a DARZALEX FASPRO®- or DARZALEX®-based treatment.
Todd & Diane's Story
Hear from Todd, a newly diagnosed, transplant-eligible patient, along with his wife and care partner, Diane, about their experience of being treated with the quad therapy regimen DARZALEX FASPRO® + VRd (bortezomib, lenalidomide, and dexamethasone).
Giuseppe’s Story
Watch how Giuseppe, a patient on DARZALEX FASPRO®, and his wife, Bernadette, handle living with multiple myeloma.
Deb’s Story
Deb, along with her husband, Harry, had their retirement plans turned upside down when Deb was diagnosed with multiple myeloma. After being on several treatments, she is now responding to DARZALEX®.
Jim’s Story
Jim was turning 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®.
Here are helpful tools to help care for yourself
Use our Doctor Conversation Starter to create a list of questions for your next appointment.
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.
Some people are empowered by information, while it can make others feel anxious and overwhelmed. Keep this in mind as you share with your care team.
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.
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.
There’s a powerful mind-body connection that may affect your 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 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
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. You may decide to work with a dietician to help develop a meal plan.
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.
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.
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.
Multiple myeloma education and
support groups
Living with or caring for someone who has multiple myeloma 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.
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.
The Myeloma Beacon provides news, resources, and online forums for patients, medical professionals, and others interested in multiple myeloma.
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.
CancerCare.org offers patients and caregivers counseling, support groups, educational workshops, publications, financial assistance, and community programs.
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.
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.
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.
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.
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.
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.
That’s My Word® offers resources and education about multiple myeloma and its disproportionate impact on the Black community.
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.
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.
Helpful
resources during
your treatment journey
Use this comprehensive resource to learn more about the treatment experience with DARZALEX FASPRO® or DARZALEX®.
Get a better sense of what your possible experience might be with our “What to Expect Guide.”
Gain a better understanding of treatment by downloading the Understanding Combination Treatment Brochures.
Create a personalized guide to talking with your doctor with our “Doctor Conversation Starter.”
Your Care Navigator is here to help guide you to support solutions throughout your treatment journey. Starting a new treatment can be overwhelming and you may still have questions. We are here to help.
- Free, 1-on-1 dedicated Care Navigator support
- Cost support options regardless of your insurance type
- Additional resources and community connections
