Inside One Man’s Journey with Multiple Myeloma

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IT WAS THE day after Christmas. The lights were still twinkling on the tree and the leftovers were fresh in the fridge when Todd, who is now 59, received the news no one ever wants to get: You have cancer. “There’s never a good time to hear that, but the week between Christmas and New Year’s was quite possibly the worst,” he recalls.

Todd and Diane 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.

Moderate, persistent back pain prompted Todd to visit his local orthopedist. “We’d been hiking a lot, and my back started flaring up,” he recalls. “My doctor ordered an MRI and said he expected that an injection should get me back on the trails soon.” Unexpectedly, the MRI revealed multiple lesions up and down Todd’s spine and a tumor on his hip the size of a thumb. He was told it was either stage four colon cancer or multiple myeloma.

a couple stands together outdoors

Courtesy of Subject

Todd, a multiple myeloma patient, with his wife and care partner, Diane

A bone marrow biopsy and blood tests soon confirmed the latter—Todd was diagnosed with multiple myeloma, a complex, incurable and rare blood cancer affecting a type of white blood cell in the bone marrow, called plasma cells, which in normal circumstances produce antibodies that fight infections and therefore play a key role in the immune system. Multiple myeloma accounts for 10 percent of hematologic malignancies. 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. “When the results pointed to multiple myeloma, the diagnosis came as a shock,” says Todd. So instead of relaxing with loved ones, Todd and his wife, Diane, spent the rest of their holiday searching for a hematology oncologist and trying to learn more about this complex disease.

According to the National Cancer Institute, nearly 36,000 new cases of multiple myeloma will be diagnosed in the U.S. this year. Yet, the disease represents only a small number of cancer cases overall—less than 2 percent—which means many oncologists treat only a few cases per year at most. Multiple myeloma is a complex condition, and it is vital that patients not only get diagnosed early but also find the optimal therapy for their treatment journey.

The Search for Answers

TODD WANTED TO ensure he was in the driver’s seat and making informed and educated decisions on his health and the road ahead. “One of the first things we learned is that multiple myeloma has genetic differences that vary from patient to patient and can evolve over time, so it can be harder to treat,” Todd says. “Treatments that work for one patient may not work for another, and what works today may stop working tomorrow.” Diane further adds, “It is important not to rely on Google when doing initial research—make sure you are looking at verified, reliable sources to get your information, like from official advocacy websites.”

It seemed to them that their best bet for fighting multiple myeloma was to be seen by a physician with expertise in this particular cancer. “The rarer your cancer, the more important it is that you see a specialist,” Todd says. “With science as fast-paced as it is today, seeing or at the very least getting a second opinion from a doctor who is an expert in your specific cancer is vital to ensuring you are getting the latest cutting-edge treatment.”

Finding the Appropriate Treatment

THEIR RESEARCH LED Todd to California, where he found a hematology oncologist who specializes in multiple myeloma. “I cannot emphasize enough the importance of shared decision-making with your doctors, coming prepared to appointments with questions, and communicating how certain treatments may impact your lifestyle,” reflects Todd.

Throughout his treatment journey, Todd and his care team have always had a collaborative relationship. It was this shared decision-making that led to his hematologist prescribing him an induction (or before transplant) quadruplet regimen of Johnson & Johnson’s multiple myeloma therapy, DARZALEX FASPRO® (daratumumab and hyaluronidase-fihj), in combination with bortezomib, lenalidomide, and dexamethasone, which is indicated for people with newly diagnosed multiple myeloma who are eligible to receive a type of stem cell transplant that uses their own stem cells, called autologous stem cell transplant. This DARZALEX FASPRO®-based quadruplet regimen was approved by the U.S. Food and Drug Administration (FDA) in July 2024.

“Research shows that for patients with multiple myeloma, your best chance at a positive response to treatment occurs with your first line of therapy,” Todd says. “While my results may not be typical for every patient, we just knew we had the right induction therapy and were then ready for the autologous stem cell transplant that was to follow.”

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.

“There are just so many milestone moments throughout a multiple myeloma journey, like the day I was diagnosed and the day I hit remission.” Todd says. “The first time I got a great lab report, the tears came down.”

Prioritizing What Matters Most

TODD WOULD NOT be where he is today without Diane, who joins him for every appointment either in person or virtually. “We’ve been married for 35 years. She is a care partner in the truest sense of the word and has been by my side every step of the way,” Todd expresses.

Together, both Todd and Diane were determined not to let his multiple myeloma stop them from pursuing family milestones and creating priceless memories. “Quality time with family and friends means more than ever before,” says Todd. “Despite my cancer, we continue to live life fully for the small and big moments. From celebrating our sons’ sports victories, high school and college graduations to epic vacations, and one of the best days of our lives, when our son married his true love.”

Sharing Strength and Empowering Others

MULTIPLE MYELOMA IS most frequently diagnosed among people who are 65 to 74 years old, so Todd’s diagnosis at such a young age was even more surprising. “I was in arguably the best health of my adult life,” Todd says. “There’s also no history of cancer in my family; this was a shock.” This is one of the reasons Todd is passionate about educating others about multiple myeloma and not only the need for continued research – but also awareness.

Together, Todd and Diane now try to pay it forward by supporting other patients and care partners on their multiple myeloma journeys. The couple has used retirement to collaborate with various advocacy organizations, mentor newly diagnosed patients and their care partners, and lead support groups. “Our goal is to inspire justifiable hope and strategic action,” says Todd.

“The most important thing you can do is be your own advocate and work in partnership with your doctor to find the best treatment option or regimen for you,” he advises. Todd also notes that, as with any cancer diagnosis, it’s important to remember the journey with multiple myeloma is an emotional roller coaster. “You start with paralyzing fear, but by getting educated, empowered, and connected, it is possible to move towards real, meaningful hope.”

For Todd, it’s all about positivity. “Through our advocacy work in this community, I try to spread a more optimistic outlook when it comes to cancer research,” Todd notes. For him, it’s not just focusing on the great work already done but also “what’s to come.”

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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© Janssen Biotech, Inc. 2024 12/24 cp-475250v1

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