The Powerful Role of Caregivers
- An Iowa couple is learning to support each other in new ways since Jan became a caregiver for her husband, Dick, who lives with non-metastatic castration-resistant prostate cancer (nmCRPC). The journey has brought them closer, strengthening their marriage.
- A caregiver assumes multiple roles to make the life of a loved one facing a health challenge easier. Caregivers are often spouses — but can also be children, parents, or close friends.1,2
- Examples of caregiver activities may include attending doctor visits, helping the patient take notes and ask questions, providing transportation to treatment, and helping with everyday activities such as preparing meals.1,2
- Dick’s treatment plan for nmCRPC involved adding the drug NUBEQA® (darolutamide) after he stopped responding to hormone therapy.*
- * Hormone therapy may include medical or surgical intervention to lower testosterone.
- NUBEQA is approved by the Food and Drug Administration (FDA) to treat adults with prostate cancer:
- that has not spread to other parts of the body and no longer responds to a medical or surgical treatment that lowers testosterone (nmCRPC), or
- that has spread to other parts of the body and responds to medical or surgical treatment that lowers testosterone (metastatic hormone-sensitive prostate cancer or mHSPC), in combination with docetaxel.3,4,5
“I took my role as a caregiver, as his wife. I love him, and I wanted to be there for whatever he needed to help him through this because it’s a really difficult journey for him, and I wanted to do whatever I could do to make that easier,” Jan explained to SurvivorNet.
Read MoreMany cancer patients are encouraged to build a support group to help them through their cancer journey.7 Sometimes, close members of that support group can become caregivers.1,2 This special person may be a parent, a sibling, a close friend, or a child; however, in many cases, for couples, it’s the partner or spouse that assumes most of the caregiving duties.1,2,8
“In some ways, even your relationship changes because it’s just part of the journey. You have to find ways as a couple to meet and get what you need from each other,” Jan said.
Before Dick’s diagnosis, Jan says he was the rock of the family and provided anyway he could. The couple met 52 years ago, and when they were first married, they each had the same kind of sports car. However, after getting married and three children later, they had less downtime to get behind the wheel, and after Dick’s diagnosis, the dynamics of their relationship changed too.
Jan found herself caring for him and making more of the family decisions.
“It was hard on the kids, and it was hard on me. It was hard on our relationship, and I can’t imagine how hard it was on him,” Jan explained.
“I was hands-on and basically an advocate for my husband. I went to doctor’s appointments with him. I took notes at those appointments. We would come and go afterward, and we would talk about what we just heard to make sure we understood it and could clarify what the doctor had said at appointments when we got home,” Jan continued.
“At one point, my husband’s non-metastatic castration-resistant prostate cancer was no longer responding to hormone therapy. Our oncologist recommended that we start another treatment called NUBEQA,” Jan said.
NUBEQA (darolutamide) is a treatment option for prostate cancer that has not spread to other parts of the body and no longer responds to a medical or surgical treatment that lowers testosterone, known as nmCRPC.9 NUBEQA was first approved by the Food and Drug Administration (FDA) in July 2019. In August 2022, it was also approved to treat prostate cancer that has spread to other parts of the body and responds to medical or surgical treatment that lowers testosterone (metastatic hormone-sensitive prostate cancer or mHSPC), in combination with docetaxel.3,4,5
The most common side effects of NUBEQA in people with nmCRPC include increase in liver function tests, arm, leg, hand or foot pain, decreased white blood cells (neutropenia), rash and feeling more tired than usual. The most common side effects of NUBEQA when used in combination with docetaxel in people with mHSPC include, constipation, decreased red blood cells (anemia), decreased appetite, high blood sugar levels, rash, decreased white blood cells, bleeding, increase in liver function tests, weight gain, low blood calcium levels and high blood pressure. Possible serious side effects include heart disease and seizure. These are not all the side effects of NUBEQA. It’s important to consider these – and all possible side effects – when discussing whether NUBEQA may be an appropriate treatment option.10 See additional important safety information about NUBEQA below.
A Caregiver’s Role
Some of the ways caregivers help their loved ones living with cancer may include:1,2
- Attend doctor visits with the patient
- Help the patient take notes/ask questions
- Provide transportation to and from treatment
- Accompany the patient during treatment
- Help keep track of side effects
- Link up with a social worker/patient navigator
- Help with day-to-day activities
- Provide emotional support
Dick says he couldn’t be more appreciative of his wife for her relentless support.
“I really appreciate how much you’ve done for me during my journey,” Dick said.
Jan admits caring for her husband is a “24/7” job, and being a caregiver isn’t for everyone. When she needs a break from the demands of caregiving, she finds solace in her garden, which helps her relax her mind.
“I plant flowers and can go out and care for them. Between watering them, I felt like I was nurturing something, and I could see that the result was something beautiful in nature. It gave me a quiet time, yet I was still here. I was still available,” Jan explained.
Jan recommends other people who find themselves caring for a loved one to find something that brings them joy.
“For me, it was nurturing plants. However, it could be having coffee with a friend if you’re able to do that, or having a friend come over or, going shopping. You need to find some kind of a time that you can just have to yourself to take care of yourself,” Jan advises.
When Jan and Dick both want to get their minds off of ongoing treatment, they focus on their shared love of sports cars.
“We would just get in and just take a ride,” she explained.
They would crisscross Iowa, stopping in ice cream shops, then continue on their way.
“That was what we did together, and if you can find something like that for yourself, it really helps your relationship,” Jan added.
The survey of prostate cancer caregiver and patients conducted by Bayer and OptiBrand also showed that most caregivers feel their relationship with their prostate cancer patient has improved since caregiving began, which speaks volumes about the positive dedication and compassion caregivers put forth in strengthening these bonds.6
“Every caregiver is different. What you need to do for your person is different, and so you just have to adjust all the time to find out what the need is, and it changes. I mean, what worked for us, maybe the first six months didn’t work the second six months, so you have to adapt, and it’s very emotional, and it makes it hard on your relationship, but just keep talking to each other,” Jan explained.
Important Safety Information
Before taking NUBEQA, tell your healthcare provider about all your medical conditions, including if you:
- have heart problems, high blood pressure, diabetes, or high amounts of fat or cholesterol in your blood (dyslipidemia)
- have a history of seizures, brain injury, stroke, or brain tumors
- have kidney or liver problems
- are pregnant or plan to become pregnant. NUBEQA can cause harm to your unborn baby and loss of pregnancy (miscarriage)
- have a partner who may become pregnant. Males who have female partners who may become pregnant should use effective birth control (contraception) during treatment and for 1 week after the last dose of NUBEQA. Talk with your healthcare provider about birth control methods
- are breastfeeding or plan to breastfeed. It is not known if NUBEQA passes into breast milk
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. NUBEQA may affect the way other medicines work and other medicines may affect how NUBEQA works.
You should not start or stop any medicine before you talk with the healthcare provider that prescribed NUBEQA.
Know the medicines you take. Keep a list of them with you to show to your healthcare provider and pharmacist when you get a new medicine.
NUBEQA may cause serious side effects, including:
- Heart disease. Blockage of the arteries in the heart (ischemic heart disease) that can lead to death has happened in some people during treatment with NUBEQA. Your healthcare provider will monitor you for signs and symptoms of heart problems during your treatment with NUBEQA. Call your healthcare provider or get medical help right away if you get chest pain or discomfort at rest or with activity, or shortness of breath during your treatment with NUBEQA
- Seizure. Treatment with NUBEQA may increase your risk of having a seizure. You should avoid activities where a sudden loss of consciousness could cause serious harm to yourself or others. Tell your healthcare provider right away if you have loss of consciousness or seizure
The most common side effects of NUBEQA in people with nmCRPC include:
- increase in liver function tests
- decreased white blood cells (neutropenia)
- feeling more tired than usual
- arm, leg, hand, or foot pain
- rash
The most common side effects of NUBEQA when used in combination with docetaxel in people with mHSPC include:
- constipation
- rash
- decreased appetite
- bleeding
- weight gain
- high blood pressure
- decreased red blood cells (anemia)
- high blood sugar levels
- decreased white blood cells
- increase in liver function tests
- low blood calcium levels
NUBEQA may cause fertility problems in males, which may affect the ability to father children. Talk to your healthcare provider if you have concerns about fertility.
These are not all the possible side effects of NUBEQA.
You are encouraged to report side effects or quality complaints of products to the FDA by visiting www.fda.gov/medwatch or calling 1-800-FDA-1088.
Please see the full Prescribing Information.
WHAT IS NUBEQA®?
NUBEQA® (darolutamide) is a prescription medicine used to treat adults with prostate cancer:
- that has not spread to other parts of the body and no longer responds to medical or surgical treatment that lowers testosterone (non-metastatic castration-resistant prostate cancer or nmCRPC),
or
- that has spread to other parts of the body and responds to medical or surgical treatment that lowers testosterone (metastatic hormone-sensitive prostate cancer or mHSPC), in combination with docetaxel
It is not known if NUBEQA is safe and effective in women or children.
PP-NUB-US-3426-1
September 2024
1. Support for Caregivers of Cancer Patients. National Cancer Institute. January 12, 2023. Retrieved August 2024.
2. Informal Caregivers in Cancer (PDQ®)–Patient Version. National Cancer institute. March 2024. Retrieved August 2024.
3. FDA approves darolutamide for non-metastatic castration-resistant prostate cancer. U.S. Food & Drug Administration. July 2019. Retrieved August 2024.
4. FDA approves darolutamide tablets for metastatic hormone-sensitive prostate cancer. U.S. Food & Drug Administration. August 2022. Retrieved August 2024.
5. Non-Metastatic Castration Resistant Prostate Cancer What You Should Know. Urology Care Foundation by the American Urological Association. 2020. Retrieved August 2024.
6. Bayer and OptiBrand conducted survey. Retrieved August 2024.
7. Cancer Support Groups. National Cancer Institute. January 12, 2023. Retrieved August 2024.
8. Spouses, Adult Children, and Children-in-Law as Caregivers of Older Adults: A Meta-Analytic Comparison. Psychol Aging. 2011 March. Retrieved August 2024.
9. Prostate Cancer Treatment (PDQ®)–Patient Version. National Cancer Institute. February 16, 2023. Retrieved August 2024.
10. Bayer Pharmaceuticals. Nubeqa (darolutamide) tablets, for oral use label. U.S. Food and Drug Administration. Available at: https://www.accessdata.fda.gov/drugsatfda_docs/label/2022/212099s002lbl.pdf. Retrieved August 2024.
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