If your loved one has relapsed/refractory multiple myeloma (RRMM), it means the cancer has come back or is not responding to treatment. Here are some ways you can provide support to help your loved one manage life with RRMM.
“One of the most helpful things a healthcare provider 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 about what it means to have RRMM. Learn more about treatments, side effects and recovery. This can be a big help if your loved one is feeling overwhelmed by the diagnosis and all the treatment choices.
Ask your loved one’s care team for educational materials about RRMM. You can also find information online and in the multiple myeloma peer community.
“National societies such as the Multiple Myeloma Resource Foundation (themmrf.org) and the International Myeloma Society (myelomasociety.org) provide good patient education materials. In-person conferences can also be a good tool,” says Amrita Krishnan, MDa multiple myeloma specialist at City of Hope Orange County, in Irvine, CA.
Be sure to keep a notebook or file where you keep everything about RRMM, such as treatment information and contact information for your loved one’s care team. Keep everything up to date so you can easily stay informed.
You may find it helpful to include the following:
- Current treatment details
- Emergency Contacts
- Other hsituations
- Information about health insurance
- List of medications and their dosages and timing
- Specific healthcare needs
- To-do lists for short- and long-term needs
- All relevant personal information
Accompany your loved one to in-person medical visits and telehealth appointments. It’s an opportunity to show your support, as well as ask questions and share information you think can help the team.
Make a list of all the questions your loved one would like to ask the care team before each appointment.
Take good notes. Write down advice, instructions and answers to questions. Ask the doctor if it is okay to write down what you talk about during medical visits so that 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 perhaps need.
- Please contact the healthcare team to see if your loved one are eligible for financial assistance.
- Look into studies that MReal provide access to brotherAnd new treatments.
- Gother facts about treatments, time requirements and goals your loved one can make informed decisions.
Help your loved one build a support network. “It can be helpful to seek support from a multidisciplinary team that includes social workers, physiotherapists, psychologists, nutritionists and others,” says Krishnan.
Talk to your loved one’s oncology social worker. Look for support groups that might be a good fit for you. Contact organizations that provide support, referrals, and resources, such as:
- Cancer care
- Cancer Support Community
- Leukemia and Lymphoma Society
- Multiple Myeloma Research Foundation
You can help your loved one manage daily life by completing tasks such as grocery shopping, cooking, and keeping track of medications.
Reach out to family, friends and neighbors in one of your networks to see if they can help too.
Make a list of who is doing what to help. A detailed plan can keep things organized, reduce 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. Don’t try to be a cheerleader. Just offer a listening ear and validate your loved ones feelings can help.
- Support any treatment decisions your loved one makes.
- Support positive changes. Sometimes cancer changes a person’s outlook. Your loved one may have a new perspective on what matters most. Simple things can 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 is essential that healthcare providers take care of themselves,” says Krishnan. “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 the time for yourself.
- Engage others. Invitation friends and family in your support circle. They can help with chores and be a shoulder to lean on.
- Take care of your own health. Get enough sleep. Consult your doctor for regular checkups. Stay on track with each doctorine you could take as well as with your own medical care appointments and showings.
- Eat good. A diet rich in Fruits and vegetables can help you feel good. To take healthy snacks such as nuts, peanut butter or yogurt while you’re at it medical appointments or shopping.
- Get moving. Being active is good for your emotional and physical health. Try walking, running, hiking, swimming, dancing or going to the gym for a cardio workout.
- Talk about your feelings. Lean on friends, family, support groups, or a professional therapist.