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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 reacting to the treatment. Here are some ways you can offer support to help your loved one manage life with RRMM.
“One of the most helpful things a caregiver can do is stay informed,” says Ashley Rosko, MD, a hematologist at the Ohio State University Comprehensive Cancer Center’s James Cancer Hospital.
Get the facts on what it means to have RRMM. Learn about treatments, side effects, and recovery. This can be a big help if your loved one feels overwhelmed by the diagnosis and all the treatment choices.
Ask your loved one’s care team for educational materials on RRMM. You can also find information online and in the multiple myeloma peer community.
“National societies like the Multiple Myeloma Resource Foundation (themmrf.org) and the International Myeloma Society (myelomasociety.org) provide good patient education material. In-person conferences can also be a good resource,” says Amrita Krishnan, MD, a multiple myeloma specialist at City of Hope Orange County, in Irvine, CA.
Have a notebook or file where you keep everything about RRMM, such as treatment details and contact information for your loved one’s health care team. Keep everything up to date so it’s easy to stay informed.
You may find it helpful to include:
- Current treatment details
- Emergency contacts
- Other health conditions
- Health insurance information
- List of medicines and their doses and timing
- Specific care needs
- To-do lists for short- and long-term needs
- Any relevant personal information
Tag along with your loved one to in-person medical visits and telehealth appointments. It’s a chance to show your support, as well as to ask questions and share information you think might help the team.
Make a list of all the questions your loved one and you would like to ask the health care team before each appointment.
Take good notes. Jot down advice, instructions, and answers to questions. Ask the doctor if it’s OK to record what you talk about during medical visits so you can remember everything later.
Your loved one may need help finding doctors and getting support.
Here are some things you can do to help:
- Find a good medical center, a doctor for a second opinion, or other services your loved one might need.
- Check with the health care team to see if your loved one is eligible for financial assistance.
- Look into studies that might offer access to brand new treatments.
- Gather facts about treatments, time requirements, and goals so your loved one can make informed decisions.
Help your loved one build a support network. “Reaching out for support from a multidisciplinary team that includes social workers, physical therapists, psychologists, nutritionists, and others may be helpful,” Krishnan says.
Talk to your loved one’s oncology social worker. Look for support groups that may be a good fit. Reach out to organizations that offer support, referrals, and resources, such as:
- Cancer Support Community
- Leukemia & Lymphoma Society
- Multiple Myeloma Research Foundation
You can help your loved one manage everyday life by taking care of tasks such as shopping, cooking, and keeping track of medicines.
Reach out to family, friends, and neighbors in either of your networks to see if they can help out as well.
Create a list of who’s doing what to help. A detailed plan can keep things organized, lower your loved one’s stress, and help friends and family stay on track.
Try these tips to help your loved one stay as positive as possible and manage the emotional ups and downs of RRMM.
- Listen openly. Try not to be a cheerleader. Simply lending an ear and validating your loved one’s feelings may help.
- Be supportive of any treatment decisions your loved one makes.
- Support positive changes. Sometimes cancer shifts a person’s outlook. Your loved one may have a new perspective on what matters most. Simple things may become more meaningful.
You may be used to putting your loved one’s needs first, but your needs count, too.
“Myeloma is a marathon, not a sprint, so it’s essential that caregivers take care of themselves,” Krishnan says. “That includes taking time for your own activities and asking for help from friends or family.”
Try these tips:
- Take a break. Do things you enjoy. Take time for yourself.
- Enlist others. Invite friends and family into your support circle. They can help with chores and be a shoulder to lean on.
- Take care of your own health. Get enough sleep. See your doctor for regular checkups. Stay on track with any medicine you might take as well as with your own medical appointments and screenings.
- Eat well. A diet rich in fruits and vegetables can help you feel good. Take healthy snacks like nuts, peanut butter, or yogurt with you when you’re busy with medical appointments or running errands.
- Get moving. Being active is good for your emotional and physical health. Try walking, running, hiking, swimming, dancing, or hitting the gym for a cardio workout.
- Talk about your feelings. Lean on friends, family, support groups, or a professional therapist.