This Couple Talks About Navigating a Rare Blood Cancer as a Team
The below is about a patient treated with CARVYKTI® (ciltacabtagene autoleucel; cilta-cel). Individual results may vary.
This past February, after finding out that the musician they have both loved for decades was playing in Las Vegas near the end of the year, Mary C. bought tickets for herself and her husband, Tony. Then the reality of the purchase sunk in.
“Suddenly it dawned on me that we were able to plan that far ahead—to buy tickets for an event months in advance,” she says. “Considering how long we’d been taking everything day by day, that was a huge deal. It felt like we could breathe again.”
The journey to that moment had been a tough one. Tony started struggling with his health in 2017, after landing in the hospital with pneumonia and spending months feeling like he simply couldn’t fully recover. By May 2018, he saw his doctor, reporting intense pain throughout his spine; subsequent lab testing detected that he was losing a significant amount of blood even though he didn’t have any wounds. That led to a diagnosis of multiple myeloma, a rare blood cancer that affects plasma cells, a type of white blood cell.
Myeloma is a type of cancer that affects the bone marrow—where your body makes blood cells—which can cause damage that can extend to the bones, kidneys and other organs. While the disease is still considered incurable, there are medications that can help to manage this serious illness—and these options are providing many patients like Tony a chance to celebrate life’s important milestones.
But the couple didn’t know that six years ago, when they thought Tony might have only six months to live. “By the time he was diagnosed, Tony’s cancer was pretty far along, and they told us he had maybe three to six months without treatment,” says Mary. “With treatment, they said it might be three to five years, but that was optimistic.”
When Tony started treatment, that hope began to dwindle because the disease was no longer responding to the medications. He began to feel disheartened, particularly since he was still in pain and needed help with everyday tasks like bathing. Even tougher was feeling like he wouldn’t live long enough to make memories with his two sons. Tony says he was filled with fear about what lay ahead. Finding any hope and positive energy was difficult.
Then a treatment came along that would ultimately provide the news the couple needed. CARVYKTI® (ciltacabtagene autoleucel; cilta-cel), a type of immunotherapy called a chimeric antigen receptor T-cell, CAR-T for short, genetically modifies a patient’s own T-cells—which are part of the immune system’s defense against infection—so they can recognize and attack multiple myeloma cells. CARVYKTI is a treatment used for adult patients who have cancer of the bone marrow called multiple myeloma. It is used when at least one other treatment has not worked or has stopped working.
As treatment with CARVYKTI became available, Tony tried to remain upbeat, but he’d already been through multiple failed medication rounds, as well as a stem-cell transplant that hadn’t worked. Happily, this time turned out to be different—after a few weeks, Tony’s doctor started to see some positive results with CARVYKTI.
Not all patients may experience the same outcomes as Tony. There are risks every patient should be aware of as they determine the correct treatment path for themselves. For more information, visit CARVYKTI.com.
The treatment enabled Tony to experience many milestones with his family. “Watching my grandchild take their first steps is beyond belief and I am so grateful,” Tony says.
As the couple looks back on their life since Tony’s diagnosis and toward that concert and beyond—they recall a few key steps that helped them navigate the uncertainty.
Ways to Work Together as a Team
If you have a loved one living with multiple myeloma, or you’ve been diagnosed with the condition yourself, here are three ways to strengthen your teamwork so you don’t lose hope, according to Tony and Mary.
1. Acknowledge the toll of a tough diagnosis
Going into the doctor’s office with back pain and coming out with a diagnosis of a rare blood cancer—plus the news that you may have only months to live—would be a shock for anyone, and it takes time to let something like that sink in. “We all know that life is not forever, but you always sense that you have more time to participate in life,” says Tony. “When you are immediately faced with your mortality, you start thinking about everything on your bucket list.”
Making the challenge that much more stressful, their youngest son was about to graduate from high school the following week. Mary says she still gets choked up thinking of all the anxiety and fear that washed over the whole family during a time that was supposed to be celebratory. “It is so much to absorb,” she says. “Then you have all these doctor’s appointments and blood transfusions thrown in, and it’s just overwhelming. There’s a lot to learn.”
Simply acknowledging the shock, sudden despair, and anxiety to each other can be helpful, she adds, because it’s the start of supporting one another in the cancer journey ahead.
2. Seek support
In addition to leaning on each other, both Tony and Mary deeply appreciate the support they’ve gotten from their healthcare team, including social workers who spoke to them about the mental health aspects of cancer treatment, and financial advisors who discussed what resources might be available. “It’s been really helpful to take advantage of [support services] already in place for cancer patients and their families,” says Mary. “There’s so much to learn in a process like this, and it’s important to realize you don’t have to do this on your own.”
The MyCARVYKTI® Patient Support Program is also an available resource designed to help eligible patients prescribed CARVYKTI and their care partners with support during treatment. Patients who meet financial and other eligibility requirements, and their care partners, may receive assistance with transportation, lodging, out-of-pocket costs related to meals and other travel expenses associated with treatment at the CARVYKTI Certified Treatment Center, and support from the MyCARVYKTI Patient Support specialists, who are available to help guide eligible patients through the enrollment process and assist with program benefits.
3. Anticipate relationship shifts
“Cancer doesn’t just change your relationship to your body—it also tends to create subtle and overt shifts in the relationships with everyone around you,” says Tony. For example, Tony has been careful to express gratitude to Mary whenever he can. “I always try to make sure that she knows I appreciate what she does for me, and I thank her for everything, even if it’s just bringing me a glass of water,” he says.
For her part, Mary says that easing into the role of care partner and working with Tony on what he needs has brought the two of them closer together—and both of them closer to their two sons, as well. “When something like this happens, it makes you aware of what really matters,” she says. “You talk about things you may not have talked about otherwise, or that you’d put off talking about. You learn to have extra patience and compassion with each other.”
And now that Tony is responding to CARVYKTI, another major shift has occurred. They’re proactively planning activities together, something they weren’t sure they’d be able to do before the treatment and its effects. “Now that things are going well, we feel like we can relax and just enjoy being with each other again,” says Mary. “We can look forward to life again.” Like that trip to the concert in Las Vegas.
What is CARVYKTI® (ciltacabtagene autoleucel)?
CARVYKTI® is a treatment used for adult patients who have cancer of the bone marrow called multiple myeloma. It is used when at least one other treatment has not worked or has stopped working
CARVYKTI® is a medicine made from your own white blood cells, which have been changed (genetically modified) to recognize and attack your multiple myeloma cells
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about CARVYKTI®?
CARVYKTI® may cause side effects that are severe or life-threatening and can lead to death. Call your healthcare provider or get emergency help right away if you get any of the following:
fever (100.4°F/38°C or higher)
chills or shaking chills
fast or irregular heartbeat
difficulty breathing
very low blood pressure
dizziness/lightheadedness
effects on your nervous system, some of which can occur days or weeks after you receive the infusion, and may initially be subtle such as:
o feeling confused, less alert, or disoriented, having difficulty speaking or slurred speech, having difficulty reading, writing, and understanding words, memory loss
o loss of coordination affecting movement and balance, slower movements, changes in handwriting
o personality changes including a reduced ability to express emotions, being less talkative, disinterest in activities, and reduced facial expression
o tingling, numbness, and pain of hands and feet, difficulty walking, leg and/or arm weakness, and difficulty breathing
o facial numbness, difficulty moving muscles of face and eyes
It is important that you tell your healthcare providers that you have received CARVYKTI® and to show them your CARVYKTI® Patient Wallet Card. Your healthcare providers may give you other medicines to treat your side effects.
Before you receive CARVYKTI® tell your healthcare provider about all your medical conditions, including if you have:
Current or past neurologic problems (such as seizures, stroke, new or worsening memory loss)
Lung or breathing problems
Heart problems
Liver problems
Kidney problems
A recent or active infection
Low blood counts
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 CARVYKTI®?
CARVYKTI® is made from your own white blood cells, so your blood will be collected by a process called ‘leukapheresis’ (loo-kah-fur-ee-sis). The procedure can take 3 to 6 hours and may need to be repeated.
Your white blood cells are sent to a manufacturing center to make CARVYKTI®. It takes about 4-5 weeks from the time your cells are received at the manufacturing site and are available to be shipped back to your healthcare provider, but the time may vary.
While CARVYKTI® is being made, you may get other medicines to treat the multiple myeloma. This is so that your multiple myeloma does not get worse.
Before you get CARVYKTI®, your healthcare provider will give you chemotherapy for 3 days to prepare your body.
30 to 60 minutes before you are given CARVYKTI®, you may be given other medicines. These may include:
medicines for an allergic reaction (antihistamines)
medicines for fever (such as acetaminophen)
When your CARVYKTI® is ready, your healthcare provider will give CARVYKTI® to you through a catheter (tube) placed into your vein (intravenous infusion). Your dose of CARVYKTI® will be given in one infusion bag. The infusion usually takes approximately 30-60 minutes.
After getting CARVYKTI®, you will be monitored at the certified healthcare facility where you received your treatment for at least 10 days after the infusion.
You should plan to stay close to the location where you received your treatment for at least 4 weeks. Your healthcare provider will check to see that your treatment is working and help you with any side effects that may occur. You may be hospitalized if you develop serious side effects until your side effects are under control and it is safe for you to leave the hospital.
Your healthcare provider will want to do blood tests to follow your progress. It is important that you have your blood tested. If you miss an appointment, call your healthcare provider as soon as possible to reschedule.
What should I avoid after receiving CARVYKTI®?
Do not drive, or operate heavy machinery, or do other activities that could be dangerous if you are not mentally alert, for at least 8 weeks after you get CARVYKTI®. This is because the treatment can cause memory and coordination problems, sleepiness, confusion, dizziness, seizures, or other neurologic side effects as discussed by your healthcare provider.
You must not be given certain vaccines called live vaccines for some time before and after CARVYKTI® treatment. Talk to your healthcare provider if you need to have any vaccinations.
Do not donate blood, organs, tissues, or cells for transplantation.
What are the possible or reasonably likely side effects of CARVYKTI®?
The most common side effects of CARVYKTI® include:
fever (100.4°F/38°C or higher), chills
dizziness or light-headedness
headache, muscle or joint pain, feeling very tired
altered mental state, confusion
infections
low levels of antibodies (immunoglobulins) in the blood
cough, being short of breath
diarrhea, nausea, decreased appetite, constipation
fast or irregular heartbeat
problems with blood clotting
In a study comparing CARVYKTI® to standard therapy, there was a higher rate of death in the first 10 months in the CARVYKTI® arm (14%) compared to the standard therapy arm (12%). The increased rate of deaths occurred before receiving CARVYKTI® and after treatment with CARVYKTI®. The reasons for death were progression of multiple myeloma and side effects of the treatment.
CARVYKTI® can cause a very common side effect called cytokine release syndrome or CRS, which can be severe or fatal. Symptoms of CRS include fever, difficulty breathing, dizziness or lightheadedness, nausea, headache, fast heartbeat, low blood pressure, or fatigue. Tell your healthcare provider right away if you develop fever or any of these other symptoms after receiving CARVYKTI®.
CARVYKTI® can increase the risk of life-threatening infections including COVID-19 that may lead to death. Tell your healthcare provider right away if you develop fever, chills, or any signs or symptoms of an infection.
CARVYKTI® can cause various neurologic side effects, some of which may be severe or fatal. Symptoms include but are not limited to confusion, disorientation, loss of consciousness, seizures, difficulty speaking, reading or writing, tremor, slower movements, changes in personality, depression, tingling and numbness of hands and feet, leg and arm weakness, and facial numbness.
CARVYKTI® can lower one or more types of your blood cells (red blood cells, white blood cells, or platelets [cells that help blood to clot]), which may make you feel weak or tired, or increase your risk of severe infection or bleeding that may lead to death. After treatment, your healthcare provider will test your blood to check for this. Tell your healthcare provider right away if you get a fever, chills, or any signs or symptoms of an infection, are feeling tired, or have bruising or bleeding.
CARVYKTI® may increase your risk of getting cancers including certain types of blood cancers. Your healthcare provider should monitor you for this.
Having CARVYKTI® in your blood may cause some commercial Human Immunodeficiency Virus (HIV) tests to incorrectly give you an HIV-positive result even though you may be HIV-negative.
These are not all the possible side effects of CARVYKTI®. Call your healthcare provider if you have any side effects.
You may report side effects to FDA at 1-800-FDA-1088.
Please read full Prescribing Information, including Boxed Warning, for CARVYKTI®.
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