As a member of the IMF’s Nurse Leadership Board, I understand the vital role care partners play in ensuring myeloma patients follow their treatment plans.
Care partners, also known as caregivers, are indispensable in the journey of living with myeloma. Whether it’s one dedicated person or a team of supporters, studies consistently show that patients with strong caregiving support tend to live longer and enjoy better mental health than those without such support.
While every caregiving relationship is unique, common responsibilities often include attending medical appointments, managing medications, preparing meals, providing transportation, offering emotional support, and staying informed about the disease and its treatments. In this blog, we’ll focus specifically on how caregivers can help patients adhere to their treatment plans.
Adherence refers to taking medication exactly as prescribed by the healthcare team. Unfortunately, we know that about half of people with chronic illnesses struggle with staying fully adherent to their treatment plans.
For those living with multiple myeloma, adherence is particularly crucial. This complex disease often requires ongoing treatment to maintain control and prevent relapses, which can become harder to manage over time. Therefore, maximizing the effectiveness of each prescribed treatment is key.
To achieve the best results with their treatments, especially oral cancer therapy plans administered at home, patients must take the correct dose and medication at the right times and in the correct manner (i.e., before, after, or with meals). A care partner can help myeloma patients with medication reminders and meal preparation.
Each myeloma drug has its own side effect profile. As a care partner, you can work with the patient to recognize side effects as soon as they begin. It’s important that the patient feels comfortable and honest with you about bothersome side effects. Together, you can work with the patient’s healthcare team to communicate adverse side effects so treatment dosage or frequency adjustments can be made. Properly managing side effects can help patients remain on therapy longer, potentially leading to longer progression-free survival and an improved quality of life.
An oral cancer therapy plan may feel complicated. If the patient feels stressed about the amount of information to absorb, care partners can accompany them to medical appointments. It is suggested to have a dedicated journal to jot notes about anything related to the patient’s care.
Patients may feel tempted to skip a dose or stop treatment altogether. As a care partner, you can monitor these decisions and ensure your loved one shares them with their healthcare team.
Multiple myeloma patients have many appointments to manage. Care partners can track those appointments and reschedule them if necessary.
Putting together a quick reference card with the contact information of key members of a patient’s healthcare team may be beneficial for your loved one.
If care partners are present during discussions about treatment changes and decisions, they can provide support and insight. Together, you and your loved one can learn about safety recommendations, including baseline and follow-up tests to monitor potential side effects (i.e., fatigue, low blood cell counts, gastrointestinal problems, blood, clots).
Lastly, care partners must remember that this role can be very demanding. Taking care of your own mental and physical well-being is essential, as good self-care allows you to provide the best support for your loved one. To learn more about this topic, visit Self-Care for the Care Partner on this website.
At the IMF, we are here to support you every step of the way. Your efforts truly make a difference in the lives of those living with multiple myeloma. If you have any questions or need additional guidance, don’t hesitate to reach out to your healthcare team or the IMF’s InfoLine team at 1-800-452-CURE (2873) or [email protected].
Rebecca Lu, MSN, FNP-C, serves as a nurse practitioner in the Lymphoma/Myeloma Department at MD Anderson with extensive experience in both outpatient care and clinical trials. Ms. Lu is an active member of the IMF Nurse Leadership Board, contributing to the advancement of patient care through numerous publications and presentations. Her expertise plays a pivotal role in the ongoing care of patients and best practices in the treatment of hematologic malignancies.
