Diane’s life changed in just one phone call. Her husband, Todd, was experiencing nagging back pain after hiking, something that had been managed previously with steroid injections every few years. Just to be thorough, his local orthopedist ordered an MRI but said he was not concerned. It was the day after Christmas when Todd was finally told that he had multiple lesions on his spine and a tumor on his hip the size of a thumb. The doctor said more testing was needed, but it was clear: Todd had cancer.
Diane and Todd are volunteers with the SHARE Network, a Johnson & Johnson program made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring.
Diane wasn’t at that appointment because they both presumed it would just be routine. Todd called her from the parking lot in shock, and from that moment on, life was anything but routine. After a bone marrow biopsy and blood tests, he was diagnosed with a rare, incurable cancer called multiple myeloma, which affects a type of white blood cell, called plasma cells, that play a key role in the immune system by creating antibodies to fight infections.
“I felt horrible that I was not with Todd in person to help him absorb the news,” Diane remembers. She has not missed an appointment since then and makes it a priority to attend either in person or virtually, and has become Todd’s care partner and champion.
With multiple myeloma, the plasma cells become cancerous, leading them to grow out of control and become less effective in fighting infections. These cancerous plasma cells crowd out other blood cells, like red blood cells and blood platelets, in the bone marrow, which eventually leads to symptoms like fatigue, weakness, and recurring infections.
In the United States, nearly 36,000 new cases of multiple myeloma will be diagnosed in 2024, according to the National Cancer Institute. The good news: the treatment landscape for multiple myeloma has greatly improved in recent years. Yet the journey isn’t easy. “You need to be flexible,” says Diane. “Be prepared and understand that zigs and zags are to be expected, especially with a chronic cancer like multiple myeloma.”
Diane and Todd, now 58 and 59 respectively, faced their multiple myeloma journey together with clear-eyed determination. Here, they discuss the pillars that helped them navigate Todd’s diagnosis and ongoing treatment plan in partnership with each other — and Todd’s care team.
Moving Forward After a Diagnosis
The couple spent the weeks following Todd’s initial diagnosis learning everything they could about multiple myeloma. At the time, Todd had years of experience in the pharmaceutical industry, and his background helped them focus their search for the best information—but any patient can find out a lot online, including misinformation. “We say knowledge is power,” Diane explains. “But it is easy to go down the wrong rabbit hole when researching. Be sure to only use verified websites, like advocacy pages, that help you understand the disease in a patient-friendly, accurate way.” Diane also started closely following the latest multiple myeloma research and studies to stay up-to-date on treatment options and advancements.
Understanding the Journey Ahead
Diane and Todd initially thought this journey would be linear, but Todd’s doctor informed them that they needed to be flexible and anticipate the many ups and downs of living with multiple myeloma, given that the disease can progress or treatments may stop working. They prepare for their time with their health care team by reviewing the charts and lab result trends on Todd’s patient portal, checking their post-appointment notes, and staying well-versed on emerging science so they can ask informed questions and actively engage in shared decision-making.
The couple’s dynamic and their relationship with Todd’s doctor — someone who, they say, lists options and pros/cons so they can all come to a decision together—has always been more than a partnership. The couple explored the option with Todd’s doctor of an induction (or before transplant) quadruplet regimen, which included Johnson & Johnson’s multiple myeloma therapy, DARZALEX FASPRO® (daratumumab and hyaluronidase-fihj), in combination with three other medicines.
DARZALEX FASPRO® is a prescription medicine used to treat adult patients with multiple myeloma in combination with the medicines bortezomib, lenalidomide, and dexamethasone in newly diagnosed people who are eligible to receive a type of stem cell transplant that uses their own stem cells (autologous stem cell transplant). This DARZALEX FASPRO®-based quadruplet regimen was approved by the U.S. Food and Drug Administration (FDA) in July 2024.
If you have a history of severe allergic reaction to DARZALEX FASPRO® or any of the ingredients, you should not take this medication. DARZALEX FASPRO® may cause serious reactions, including serious allergic reactions and other severe injection-related reactions. Serious allergic reactions and reactions due to release of certain substances by your body (systemic) that can lead to death can happen with DARZALEX FASPRO®. Please see full Important Safety Information for DARZALEX FASPRO® below and pinned to this page.
Diane adds that the whole care team helps them keep realistic expectations and perspectives, so they can maintain the right frame of mind. “I’ve learned to give myself grace as a care partner and accept that I can’t do it alone,” says Diane. “Others want to help—and it is up to me to communicate what we need and let them help.”
Remembering to Take Care of Yourself
This was not an easy time for either of them, of course. “There was just so much at the beginning. The shock of it, the word ‘incurable,’ and the feeling that we needed to take a crash course in this rare disease — it was so emotionally and mentally taxing,” Diane explains. Added to that was also the overwhelming time commitment — coordinating doctors, scheduling tests, dealing with insurance, racing between appointments, and this sense of urgency that everything needed to happen now. At one point, when asked how she was doing by one of Todd’s doctors, she just burst into tears. She realized she had been so focused on Todd, that she had forgotten to care and think about herself. “You need to put your oxygen mask on first, like they say on flights,” Diane says. “Also, you must communicate what your own needs are and find outlets for venting your feelings.” She found that exercise was great for relieving her stress and resumed her favorite workout, walking, to help keep her head clear.
Diane’s commitment to her own mental and physical wellness helps her persevere as Todd’s partner and advocate for the long haul. “It was not sustainable to continue as I was during the first few months. Multiple myeloma is a marathon and, as a care partner, I had to stay healthy to keep going,” she points out. “The partner is an added set of ears to hear what the medical team says at appointments, and also an added voice to communicate what the patient is experiencing outside of doctors’ offices.”
Diane also believes it is important to let people in your life know what you are experiencing, whether they are colleagues, friends, or family members. “This reduces stress and relieves the mental burden from other aspects of life because those around you will understand what you are going through,” advises Diane.
From Care Partner to Advocate
Todd used to call Diane his “caretaker,” or “caregiver,” but she never thought those terms truly captured her role in Todd’s cancer battle. They have since landed on the moniker “care partner,” which is a better term for how they work together to become more educated, empowered advocates for Todd’s care.
Together, Diane and Todd now try to pay it forward by helping other patients on their multiple myeloma journeys. The couple has used retirement to work with various advocacy organizations, mentor newly diagnosed individuals and their care partners, and lead support groups.
The couple continues to stay informed about the latest multiple myeloma research and treatment options, as they know this is an ongoing journey for them. But they still remain optimistic and excited about the future. “One of the positives that comes with this diagnosis is it puts into focus what matters,” Diane sums up. “Trivial things no longer seem important. We spend more time focused on family.” Diane and Todd enjoy walks together daily and cherish every moment spent with their children.
As his doctor told Todd from the start, there are ups and downs for many patients with multiple myeloma. Yet with courage and hope like Diane and Todd’s, those waves can be ridden like a pro. “We do not have control over the hand we are dealt, but we do have control over how we play it,” says Diane.
Visit www.darzalex.com for more information, and please click here for full Prescribing Information.
IMPORTANT SAFETY INFORMATION
Do not receive DARZALEX FASPRO® if you have a history of a severe allergic reaction to daratumumab, hyaluronidase, or any of the ingredients in DARZALEX FASPRO®. See below for a complete list of ingredients in DARZALEX FASPRO®.
Before you receive DARZALEX FASPRO®, tell your healthcare provider about all of your medical conditions, including if you:
- have a history of breathing problems
- have had shingles (herpes zoster)
- have ever had or might now have a hepatitis B infection as DARZALEX FASPRO® could cause hepatitis B virus to become active again. Your healthcare provider will check you for signs of this infection before, during, and for some time after treatment with DARZALEX FASPRO®. Tell your healthcare provider right away if you get worsening tiredness or yellowing of your skin or white part of your eyes.
- are pregnant or plan to become pregnant. DARZALEX FASPRO® may harm your unborn baby. Tell your healthcare provider right away if you become pregnant or think that you may be pregnant during treatment with DARZALEX FASPRO®.
o Females who are able to become pregnant should use an effective method of birth control (contraception) during treatment and for 3 months after your last dose of DARZALEX FASPRO®. Talk to your healthcare provider about birth control methods that you can use during this time.
o Before starting DARZALEX FASPRO® in combination with lenalidomide, thalidomide, or pomalidomide, females and males must agree to the instructions in the lenalidomide, thalidomide, or pomalidomide REMS program.
— The lenalidomide, thalidomide, and pomalidomide REMS have more information about effective methods of birth control, pregnancy testing, and blood donation for females who can become pregnant.
— For males who have female partners who can become pregnant, there is information in the lenalidomide, thalidomide, and pomalidomide REMS about sperm donation and how lenalidomide, thalidomide, and pomalidomide can pass into human semen. - are breastfeeding or plan to breastfeed. It is not known if DARZALEX FASPRO® passes into your breast milk. You should not breastfeed during treatment with DARZALEX FASPRO®. Talk to your healthcare provider about the best way to feed your baby during treatment with DARZALEX FASPRO®.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
How will I receive DARZALEX FASPRO®?
- DARZALEX FASPRO® may be given alone or together with other medicines used to treat multiple myeloma.
- DARZALEX FASPRO® will be given to you by your healthcare provider as an injection under the skin in the stomach area (abdomen).
- DARZALEX FASPRO® is injected over 3 to 5 minutes.
- Your healthcare provider will decide the time between doses as well as how many treatments you will receive.
- Your healthcare provider will give you medicines before each dose of DARZALEX FASPRO® and after each dose of DARZALEX FASPRO® to help reduce the risk of serious allergic reactions and other reactions due to release of certain substances by your body (systemic).
If you miss any appointments, call your healthcare provider as soon as possible to reschedule your appointment.
DARZALEX FASPRO® may cause serious reactions, including:
- Serious allergic reactions and other severe injection-related reactions. Serious allergic reactions and reactions due to release of certain substances by your body (systemic) that can lead to death can happen with DARZALEX FASPRO®. Your healthcare provider may temporarily stop or completely stop treatment with DARZALEX FASPRO® if you have a serious reaction. Tell your healthcare provider or get medical help right away if you get any of these symptoms during or after an injection of DARZALEX FASPRO®.
o shortness of breath or trouble breathing
o dizziness or lightheadedness (hypotension)
o cough
o wheezing
o heart beating faster than usual
o low oxygen in the blood (hypoxia)
o throat tightness or irritation
o runny or stuffy nose
o headache
o itching
o high blood pressure
o eye pain
o nausea
o vomiting
o chills
o fever
o chest pain
o blurred vision
- Injection site reactions. Skin reactions at or near the injection site (local), including injection site reactions, can happen with DARZALEX FASPRO®. Symptoms at the site of injection may include itching, swelling, bruising, pain, rash, bleeding, or redness of the skin. These reactions sometimes happen more than 24 hours after an injection of DARZALEX FASPRO®.
- Decreases in blood cell counts. DARZALEX FASPRO® can decrease white blood cell counts, which help fight infections, and blood cells called platelets, which help to clot blood. Decreases in blood cell counts are common with DARZALEX FASPRO® but can be severe. Your healthcare provider will check your blood cell counts during treatment with DARZALEX FASPRO®. Tell your healthcare provider if you develop fever or have signs of bruising or bleeding.
- Changes in blood tests. DARZALEX FASPRO® can affect the results of blood tests to match your blood type. These changes can last for up to 6 months after your final dose of DARZALEX FASPRO®. Your healthcare provider will do blood tests to match your blood type before you start treatment with DARZALEX FASPRO®. Tell all of your healthcare providers that you are being treated with DARZALEX FASPRO® before receiving blood transfusions.
The most common side effects of DARZALEX FASPRO® when used alone include cold-like symptoms (upper respiratory infection) and decreased red blood cell counts.
The most common side effects of DARZALEX FASPRO® when used in combination therapy include:
- tiredness
- nausea
- diarrhea
- shortness of breath
- trouble sleeping
- headache
- rash
- fever
- cough
- muscle spasms
- back pain
- vomiting
- high blood pressure
- muscle, bone, and joint pain
- cold-like symptoms (upper respiratory infection)
- nerve damage causing tingling, numbness, or pain
- constipation
- lung infection (pneumonia)
- swollen hands, ankles, or feet
- decreased red blood cell counts
These are not all of the possible side effects of DARZALEX FASPRO®. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
General information about the safe and effective use of DARZALEX FASPRO®
Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. You can ask your pharmacist or healthcare provider for information about DARZALEX FASPRO® that is written for health professionals.
Active ingredient: daratumumab and hyaluronidase-fihj
Inactive ingredients: L-histidine, L-histidine hydrochloride monohydrate, L-methionine, polysorbate 20, sorbitol, water for injection
What is DARZALEX FASPRO®?
DARZALEX FASPRO® is a prescription medicine used to treat adult patients with multiple myeloma:
- in combination with the medicines bortezomib, lenalidomide, and dexamethasone in newly diagnosed people who are eligible to receive a type of stem cell transplant that uses their own stem cells (autologous stem cell transplant)
- in combination with the medicines bortezomib, melphalan, and prednisone in people with newly diagnosed multiple myeloma who cannot receive a type of stem cell transplant that uses their own stem cells (autologous stem cell transplant)
- in combination with the medicines lenalidomide and dexamethasone in people with newly diagnosed multiple myeloma who cannot receive a type of stem cell transplant that uses their own stem cells (autologous stem cell transplant) and in people whose multiple myeloma has come back or did not respond to treatment who have received at least one prior medicine to treat multiple myeloma
- in combination with the medicines bortezomib, thalidomide, and dexamethasone in newly diagnosed people who are eligible to receive a type of stem cell transplant that uses their own stem cells (autologous stem cell transplant)
- in combination with the medicines bortezomib and dexamethasone in people who have received at least one prior medicine to treat multiple myeloma
- in combination with the medicines pomalidomide and dexamethasone in people who have received at least one prior medicine, including lenalidomide and a proteasome inhibitor, to treat multiple myeloma
- in combination with the medicines carfilzomib and dexamethasone in people whose multiple myeloma has come back or did not respond to treatment who have received one to three prior medicines to treat multiple myeloma
- alone in people who have received at least three prior medicines, including a proteasome inhibitor and an immunomodulatory agent, or did not respond to a proteasome inhibitor and an immunomodulatory agent
It is not known if DARZALEX FASPRO® is safe and effective in children.
Please click here to read full Prescribing Information for DARZALEX FASPRO®.
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