Caring for RRMM Patients

Caring for RRMM Patients

Supporting Loved Ones with Relapsed/Refractory Multiple Myeloma (RRMM): A Comprehensive Guide

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If your loved one has relapsed/refractory multiple myeloma (RRMM), it means the cancer has either come back or isn’t responding to treatment. This can be a challenging situation for both the patient and their caregivers. However, with the right information and support, you can help your loved one manage life with RRMM. In this article, we will explore various ways you can offer support and empower your loved one to navigate this journey with resilience and positivity.

Staying Informed: The Key to Effective Caregiving

“One of the most helpful things a caregiver can do is stay informed,” says Dr. Ashley Rosko, a hematologist at the Ohio State University Comprehensive Cancer Center’s James Cancer Hospital. Myeloma is a marathon, not a sprint, so it’s essential that caregivers take care of themselves. This includes taking time for your own activities and asking for help from friends or family, advises Dr. Amrita Krishnan, a multiple myeloma specialist at City of Hope Orange County in Irvine, CA.

Start by learning more about RRMM. Get the facts on what it means to have RRMM, the available treatments, potential side effects, and recovery process. This knowledge can be invaluable for your loved one, who may feel overwhelmed by the diagnosis and treatment options. Reach out to your loved one’s care team for educational materials on RRMM. Additionally, organizations like the Multiple Myeloma Resource Foundation (themmrf.org) and the International Myeloma Society (myelomasociety.org) provide excellent patient education materials. Consider attending in-person conferences for further information and support.

Creating a Health Care Journal or Care Plan

To stay organized and informed, it’s helpful to have a notebook or file where you keep everything related to RRMM. This can include treatment details, contact information for the health care team, emergency contacts, other health conditions, health insurance information, list of medicines and their doses, specific care needs, to-do lists, and relevant personal information. By maintaining an up-to-date journal or care plan, you can easily access important information and ensure continuity of care.

Active Involvement in Medical Appointments

Accompany your loved one to their medical visits, either in person or through telehealth appointments. This allows you to show your support and actively participate in their care. Before each appointment, prepare a list of questions you and your loved one would like to ask the health care team. Take detailed notes during the appointments, jotting down advice, instructions, and answers to questions. If permitted by the doctor, consider recording the discussions to ensure nothing is missed. These active measures will help you and your loved one stay informed and actively engage in their treatment journey.

Helping with Decisions and Resources

Your loved one may need assistance in finding doctors, accessing support, and making informed decisions. Here are some steps you can take to help:

  • Find a reputable medical center, consider seeking a second opinion from another doctor, or explore other necessary services.
  • Check with the health care team to see if your loved one is eligible for financial assistance.
  • Look into clinical studies that offer access to new treatments.
  • Gather facts about available treatments, time requirements, and goals, enabling your loved one to make informed decisions.

Building a support network is vital for your loved one’s well-being. Encourage them to reach out for support from a multidisciplinary team that includes social workers, physical therapists, psychologists, nutritionists, and others. Engage with your loved one’s oncology social worker to explore suitable support groups, and connect with organizations such as CancerCare, Cancer Support Community, Leukemia & Lymphoma Society, and the Multiple Myeloma Research Foundation for additional support, referrals, and resources.

Organizing Help and Managing Everyday Life

Assisting your loved one in managing their day-to-day life can significantly alleviate their stress. Take responsibility for tasks such as shopping, cooking, and keeping track of medicines. Additionally, reach out to your networks, including family, friends, and neighbors, to see if they can lend a hand as well. Create a detailed plan that outlines who will be supporting and assisting in various tasks. This organizational approach not only reduces stress but also helps your loved one to know they are cared for efficiently.

Offering Emotional Support

The emotional toll of RRMM can be considerable, and your loved one may experience ups and downs. Here are some tips to help them stay positive and manage their emotions:

  • Be an active listener and offer validation without the need for cheerleading. Lend an ear and acknowledge their feelings, as this can be truly helpful.
  • Support your loved one’s treatment decisions, respecting their autonomy and choices.
  • Embrace positive changes that can result from the cancer journey. Sometimes, facing cancer can change a person’s perspective on life, making simple things more meaningful.

Taking Care of Yourself

As a caregiver, it’s natural to prioritize your loved one’s needs. However, it’s crucial to remember that your own well-being is equally important. Dr. Krishnan emphasizes that caregivers must take care of themselves, as myeloma is a marathon, not a sprint. Consider the following self-care tips:

  • Take breaks and engage in activities you enjoy.
  • Involve friends and family in your support circle; seek their help with tasks and lean on them for emotional support.
  • Look after your physical health by getting enough sleep, attending regular checkups, and staying on track with any medication you may take.
  • Maintain a healthy diet rich in fruits and vegetables. Carry healthy snacks like nuts, peanut butter, or yogurt during medical appointments or errands.
  • Stay physically active through activities such as walking, running, swimming, dancing, or hitting the gym for a cardio workout.
  • Don’t hesitate to seek professional help or join support groups to discuss your feelings and experiences.

Supporting a loved one with RRMM requires compassion, understanding, and active involvement. By staying informed, helping with decision-making, organizing assistance, and offering emotional support, you can greatly enhance the well-being and resilience of both yourself and your loved one. Remember, this journey is a marathon, not a sprint, and you both deserve the support and care necessary to navigate it with strength and positivity.