Multiple Myeloma: Finding Resources and Support
While multiple myeloma can present many challenges, keep in mind that you do not need to cope with this diagnosis on your own. Your friends and family are important sources of strength and support. There are also many local and national support services available to assist you.
Here are some of the different types of resources available to you:
Medical information. Your oncologist, other doctors, and nurses are a great source of information about treatment options, pain and side effect management, and other medical concerns. There are also a great number of reputable organizations that provide trusted information on multiple myeloma and related issues (see bottom of page). The libraries at cancer centers also stock up-to-date literature on these topics.
Emotional support. A multiple myeloma diagnosis can be overwhelming, making you feel sad, scared, or anxious. Individual counseling, face-to-face and online support groups, and patient-to-patient networks are available to help you cope emotionally. Ask your health care team or one of the organizations listed below for recommendations. CancerCare provides free counseling and support groups led by professional oncology social workers.
Financial assistance. There are many organizations that provide help with medical billing, insurance coverage, and reimbursement issues. There is also financial assistance available to help people who cannot afford the cost of their medications. Good places to start your research are the websites of the Cancer Financial Assistance Coalition (www.cancerfac.org) and the Partnership for Prescription Assistance (www.pparx.org).
CancerCare’s fact sheet, “Sources of Financial Assistance,” provides more information about seeking financial help. Another resource is CancerCare’s A Helping Hand (www.cancercare.org/helpinghand). This is a searchable, online database of financial and practical assistance available for people with cancer. This comprehensive online tool features up-to-date contact information and descriptions for hundreds of national and regional organizations offering financial help to people with cancer. You can search by diagnosis, zip code and type of assistance.
Benefits and entitlements. Local and county government agencies can give you information on Social Security, state disability, Medicaid, income maintenance, the Low Income Heating Energy Assistance Program (LIHEAP), and food stamps. Check your local phone directory for listings.
Transportation help. CancerCare’s Door to Door program offers grants to help multiple myeloma patients with transportation costs such as gasoline, taxi service, and public transportation fare to and from medical appointments. The American Cancer Society’s Road to Recovery Program provides transportation to and from cancer centers for patients and their families. Your local and county governments may also offer low-cost transportation for people who qualify. Churches, synagogues, YMCAs, YWCAs, or fraternal orders may also have volunteers who can provide transportation.
Housing/lodging. The Hope Lodge of the American Cancer Society, the National Association of Hospital Hospitality Houses (www.nahhh.org), and other organizations provide temporary lodging for families of a patient who needs to travel far from their home for treatment. Joe’s House is a nonprofit organization that offers an online database with lodging information near cancer treatment centers across the U.S. To learn more, visit www.joeshouse.org.
Other practical assistance. People affected by multiple myeloma may feel overwhelmed by any number of other day-to-day concerns. Contact CancerCare or any of the other organizations listed below to learn about additional recommended resources. To learn more about what is available in your community, you can also contact the National Association of Area Agencies on Aging (www.n4a.org) and United Way (www.unitedway.org).
Multiple myeloma resources
American Cancer Society
American Society of Clinical Oncology
Be the Match® Patient Services
The Bone Marrow Foundation
International Myeloma Foundation
The Leukemia & Lymphoma Society
Multiple Myeloma Research Foundation
National Cancer Institute
National Comprehensive Cancer Network
National Bone Marrow Transplant Link
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Information provided by CancerCare.