A diagnosis of multiple myeloma can leave you and your loved ones feeling uncertain, anxious and overwhelmed. Your doctors’ appointments will provide the best opportunity to speak with members of your health care team. Getting as much information as you can about the goals of your treatment and how it will affect your life will help you feel more satisfied with your care.
The Importance of Communicating With Your Health Care Team
Your team of doctors, nurses and social workers are valuable sources of support as you cope with a cancer diagnosis. It’s a good idea to bring a list of questions to the appointment and write down the doctor’s responses. In addition, if possible, bring someone with you to any appointment; another set of ears can help reduce confusion.
It’s also important to talk to your health care team about the cost of your care. Research shows that many patients do not feel comfortable asking their doctors how much treatment is going to cost and many doctors do not normally bring it up either. If possible, it is important to find out the cost of your medications before starting treatment. Your doctor may not know the answer, but he or she should be able to refer you to a social worker, pharmacist or hospital financial specialist who can help. For more information on talking with your doctor, read CancerCare’s booklet titled, “Communicating with Your Health Care Team.”
Questions that You May Want to Ask Your Health Care Team:
Since I’ve been diagnosed, I’ve been overwhelmed. How can I better cope with my diagnosis? A cancer diagnosis turns a person’s world upside down emotionally, financially and physically. Your team of doctors, nurses and social workers are valuable sources of support as you cope with a cancer diagnosis. Oncology social workers are licensed professionals who counsel people affected by cancer, providing emotional support and helping people access practical assistance. CancerCare’s oncology social workers provide individual counseling, support groups and locate services face-to-face, online or on the telephone, free of charge. To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).
What is my recommended treatment plan? There are a wide range of treatments for multiple myeloma, including stem cell transplant, targeted treatment, radiation therapy, immunotherapy and chemotherapy.
What’s involved in a stem cell transplant? A stem cell transplant is a procedure in which diseased bone marrow is replaced with healthy bone marrow. It is an important treatment option for people with multiple myeloma. When a person with multiple myeloma receives his or her own stem cells, the procedure is called an “autologous” stem cell transplant. The procedure is known as an “allogeneic” stem cell transplant if the stem cells are from a donor (usually a close relative, such as a brother or sister). Ask your health care team if a stem cell transplant is a treatment option for you.
What side effects might I experience throughout my treatment plan? Keep in mind that side effects can vary from person to person, and can be treated by your health care team. A key to managing side effects is to be aware of them and communicate with your health care team when they arise. Report them right away—don’t wait for your next appointment. Your health care team can help you cope with side effects of multiple myeloma treatment. Some of the things you may want to write down in your journal include:
- How long a side effect lasts
- The date and time a side effect occurs
- What impact the side effect has on your daily activities. For example—does pain keep you from sleeping?
- How strong the side effect is. For example—if you experience pain, how strong is it on a scale from 0 to 10, where 0 equals no pain and 10 is the worst pain possible? Read CancerCare’s fact sheet titled, “Pain and Symptom Management: Talk to Your Health Care Team” for more information on talking to your doctor about pain.
Why should I avoid ibuprofen for pain? Ibuprofen (Motrin, Advil, Nuprin, others) is a non-steroidal anti-inflammatory drug (NSAID) that works by reducing hormones that can cause inflammation and pain. NSAIDs should be avoided by people with multiple myeloma, as they can be harmful to the kidneys. It’s important to talk to a member of your health care team about pain relief options before taking any over-the-counter medication, to determine if they are safe and will not interfere with your treatments.
Should I seek a second opinion? Usually with a new diagnosis there is a period of time, depending on the cancer type and stage, before treatment begins. During this time, getting a second opinion may help give you a peace of mind or an alternative treatment possibility. Talk to your health care team and read CancerCare’s “When to Get a Second Opinion” fact sheet for more information.
Is there a clinical trial I can participate in? If so, will it be covered by my insurance? Clinical trials are the standard by which we measure the worth of new treatments and the quality of life of patients as they receive those treatments. For this reason, doctors and researchers urge people with cancer to take part in clinical trials. Read CancerCare’s “Clinical Trials: What You Need to Know” fact sheet to learn more information on clinical trials.
CancerCare’s A Helping Hand
CancerCare’s A Helping Hand (www.cancercare.org/helpinghand) 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.