A diagnosis of Waldenstrom’s Macroglobulinemia can be overwhelming. The time ahead will be very important to you. This fact sheet gives advice on how to:
- Understand your diagnosis and treatment plan
- Communicate with your health care team
- Build a network of resources and support
- Care for yourself emotionally
What Is Waldenstrom’s Macroglobulinemia and How Is It Treated?
Waldenstrom’s Macroglobulinemia is a type of non-Hodgkin lymphoma. Lymphoma is a cancer that spreads through lymph vessels and lymph glands throughout the body.
Ways to treat Waldenstrom’s Macroglobulinemia, include immunotherapy, plasmapheresis (plasma exchange), chemotherapy, stem cell transplant and radiation therapy. Your doctors will be able to inform you what types of treatment might be best for you.
How Can I Stay Informed About My Cancer?
- Communicate with your health care team. Your doctors and nurses are the central part of your team. It also can include pharmacists, oncology social workers, counselors, patient navigators and more. They all help you make decisions about your care.
- Keep your health care appointments. Prepare your questions before your appointments and write down or record the answers to help you remember them. Think about bringing a friend or loved one for support.
- Contact health care organizations. CancerCare’s A Helping Hand is a listing of state and national organizations with advice and resources. This can be ordered in print or found online at www.cancercare.org/helpinghand.
What Are Some Resources That Can Help?
You do not need to cope with cancer on your own. There are local and national support services available to assist you.
Financial Assistance. Many organizations provide help with medical billing, insurance coverage and reimbursement issues. There are also financial assistance organizations for people who cannot afford the cost of their medications. Good places to start are the websites of the Cancer Financial Assistance Coalition (www.cancerfac.org) and the Medicine Assistance Tool (medicineassistancetool.org).
Benefits and Entitlements. Local and national government agencies can give you information on Social Security, Medicaid, disability issues, SNAP benefits and more. Check your local phone directory for listings or visit www.usa.gov/benefits.
Housing/Lodging. Lodging for families who need to travel for treatment may be found at The Hope Lodge of the American Cancer Society (www.cancer.org/support-programs-and-services/patient-lodging) and the National Association of Hospital Hospitality Houses (www.nahhh.org). Joe’s House offers an online database with lodging information across the U.S. (www.joeshouse.org).
How Do I Help Myself Emotionally?
Cancer may not just affect yourself, but everyone around you. It is important to take care of your feelings. You may find emotional support from friends, family and loved ones. There are also many organizations, such as CancerCare, that provide support services to help people affected by cancer.
CancerCare provides one-on-one counseling and support groups to connect you with others in a safe and supportive environment. We can also help find other resources to help you in many ways.