Relapsed/Refractory Multiple Myeloma: How Caregivers Can Help

If you are caring for someone diagnosed with relapsed/refractory multiple myeloma (RRMM), you are probably wondering how to support them. You may not be familiar with this type of cancer—or even cancer in general.

A good place to start is by learning all you can about this type of cancer, including what your loved one might experience during and after treatment. Understanding what it means to have RRMM will help you address your loved one's needs as well as empower you to find support for yourself as a caregiver.

Even though family and friends are considered "informal caregivers" (in the sense that they are not specially-trained), they tend to take on the majority of caregiving responsibilities.

Understanding Relapsed/Refractory Multiple Myeloma (RRMM)

Myeloma, also known as multiple myeloma, is a rare type of cancer arising from plasma cells that are normally found in the bone marrow. Plasma cells are a type of white blood cell that forms part of the immune system.

Myeloma affects multiple places in the body (hence the term “multiple myeloma”) where bone marrow is normally active, such as the bones of:

• The spine
• Pelvis
• Rib cage
• The areas around the shoulders and hips

While there are many effective treatments for multiple myeloma, unfortunately, it is currently incurable. This means that even after successful treatment has provided a period of remission or stable disease, myeloma will return. When this happens, it’s called recurrent or relapsed.

If it doesn’t respond to treatment or comes back within 60 days after your last therapy, it’s known as refractory.

To educate yourself, ask to accompany your loved one to doctor's appointments. This provides an opportunity to learn about treatment options directly from their doctor. You can also ask the doctor questions to understand your loved one’s prognosis and treatment.

What You Can Do

Caring for a person with myeloma—whether they are your partner, sibling, child, another family member, or a friend—can be both challenging and rewarding. When multiple myeloma returns it can be a particularly difficult time for patients and their families.

Pre-Treatment

If the person you care for is receiving treatment, it is a good idea to know which treatment(s) they are receiving and any associated potential side effects.

Before treatment begins, discuss some of the ways you plan to help with your loved one. Ways you can support them in the pre-treatment phase could include:

• Taking notes during meetings with physicians
• Completing insurance claims and other paperwork
• Helping your loved one apply for financial assistance
• Prepping living space for optimum convenience and comfort during treatment
• Listening to your loved one’s fears without trying to control the conversation

One of the most valuable things you can do for a loved one with cancer is to provide emotional support. Sometimes, what your loved one will need most is for you to just listen.

During Treatment

Treatment for RRMM can be quite grueling. Side effects of treatment may be intense and prolonged. Your loved one may be most in need of your help and support when they are feeling the physical and emotional impact of treatment.

Almost all multiple myeloma drugs are "myelosuppressive," which means they can result in low blood cell counts.

This is good in the sense that the cancer cells are in the blood cell family and it is good to kill cancer cells, but you want your healthy blood cells (red, white, and platelet-generating cells), in good numbers to carry oxygen and fight infection and keep the balance between bleeding/easy bruising and blood clots.

Ways you can support your loved one while they are receiving treatment include:

• Running errands including calling in prescription refills or picking up their medication from the pharmacy
• Keeping a diary of side effects for future hospital appointments
• Assisting with household chores
• Taking them to appointments and bringing them home
• Visiting them at home when they aren't feeling up to going out but would like company or someone to talk to
• Regularly calling, texting, emailing, or even sending handwritten notes and thoughtful gifts to remind your friend you're thinking of them and lift their spirits

When Treatment Stops Working

Relapsed myeloma can respond to treatment and go into another period of remission. However, each individual is different, and the person you are caring for may respond better or worse than others to treatment.

Unfortunately, there does come a time when myeloma progresses to a point where nothing more can be done to treat it and care becomes palliative.

Taking Care of Yourself

One of the most important aspects of caring for someone is looking after yourself. You cannot care for someone else if you do not look after yourself properly. This is an important point that many carers often disregard.

Someone with RRMM may need several hours of help during the day. If you are the primary person caring for your loved one, you'll want to find ways to manage stress and avoid caregiver burnout.

There are ways to help reduce stress while you are a caregiver. They might help prevent depression that can develop over time. This includes:

• Support from family and friends in caring for the patient
• Exercise
• A healthy diet
• Spiritual support, such as religious activity, prayer, journaling, or meditation
• Recreational time, when you can enjoy friends socially
• Help from a trained mental health professional

Make an effort to notice and talk about things you do as they happen during the day. Set aside time during the day—like during a meal—when you do not talk about illness.

If you will be caring for a family member, discuss your needs for time off with your boss and your employer's human resources department. This will help protect your job while you are on unpaid leave to provide caregiving.

A Word From Verywell

If you’re caring for someone with RRMM, educate yourself about the disease. Learn more about cancer symptoms and the side effects of treatment. 

Have a discussion with your loved one about their disease and treatment. Show your support by asking what role you should play in their treatment. Be honest with them and with yourself. Seek additional help if needed.

Caring for a loved one with RRMM can be challenging. You might also benefit from joining a special caregiver support group where you can talk with others also caring for loved ones with multiple myeloma. Consider joining a local or online group.