As a caregiver for a patient with multiple myeloma, you may face “a new normal,” with challenges for both your loved one and yourself. As the disease manifests over time, it may be difficult to balance your needs with those of the patient for whom you provide care. You may encounter physical, social, emotional, or financial difficulties. In this caregiver series of posts, we’ll address some of these concerns and ways to manage them.
While there are a number of online resources for finding support and information, filtering them for reliable content is a difficult task. Each stage of myeloma can provide a unique set of questions—with new and rapidly changing information to process. Here we have compiled some sources of reputable, up-to-date information and caregiver support services. We’ve also included a list of useful apps and software for myeloma caregivers and patients.
Educational and support resources
The Multiple Myeloma Research Foundation (MMRF)
The MMRF excels at providing extensive resources and in-depth information for those at any stage of the myeloma journey.
- The MMRF CoMMunity Gateway is a resource to connect with other caregivers and patients, have your questions answered by myeloma experts, and learn about topics that are relevant to you. Join the family and caregivers interest group to connect with others. Follow along as Deb Osborne, caregiver for and wife of myeloma patient Allan Osborne, posts about her experiences.
- MMRF nurse specialists are available by phone (1.866.603.MMCT) to guide you through the myeloma experience.
- The MMRF multiple myeloma Disease Overview brochure and Treatment Overview brochure provide information about the basics of myeloma and treatment options.
- Patient summits with information about myeloma are held in multiple cities across the US each year. For more information, click here.
- Search the MMRF Support Group Directory to find a local option in your community.
The Leukemia & Lymphoma Society (LLS)
The LLS resources include weekly online chats for caregivers, tips on balancing work, long-distance caregiving, a phone support program, financial assistance, online discussion boards, and local family support group programs.
International Myeloma Foundation (IMF)
The IMF offers workshops and phone support. Its publications are available in more than 20 languages.
Blood & Marrow Transplant Information Network (BMT InfoNet)The BMT InfoNet provides information and emotional support for transplant survivors and their caregivers. BMTSupport.org is an online chat room, and the Caring Connections Program can connect you with other caregivers.
American Cancer Society (ACS)Part of the ACS, the National Cancer Information Center provides information and support via phone or live chat throughout the year. The ACS also offers rides for patients and patient lodging programs.
CancerCare offers counseling and support groups, education, financial assistance, and community programs for caregivers.
Cancer Support CommunityIn-person support groups and a cancer experience registry are open to caregivers.
The Myeloma Beacon The Beacon publishes myeloma-related research updates, patient perspectives, and original physician contributions and includes an online discussion board.
CareZone is an online and mobile app for organizing files, contacts, and medications and coordinating with family and others using a shared calendar and journal.
Myeloma Manager This software, developed by the IMF, can display and print laboratory results, as well as provide a real-time news feed and useful links.
Track My Multiple MyelomaThis app designed by Celgene can help you organize appointments, medications and refills, and lab results and share information.
This site lets you create a free personal website to share experiences with myeloma with friends and family. Your site can be shared on social media and can also be linked to a personal fund-raiser.
Lotsa Helping HandsThis website helps you create a community to organize volunteers for help and coordinate logistics.
A free tracking tool for medication schedules with reminders.
Connecting with other caregivers can help you realize you are not in this alone. The next post in this series will focus on caregiver self-care.
For more information, visit the following websites: