Newly Diagnosed Patients:

Your Top Questions Answered


Over the years, the Multiple Myeloma Research Foundation (MMRF) has collected questions from patients like you, who have just been diagnosed with multiple myeloma. Here you will find answers to the most frequently asked questions.

Click a link below to view by topic:

1. What is multiple myeloma?
2. What are the treatments for multiple myeloma?
3. How can I find a doctor who specializes in multiple myeloma?
4. Do I need a second opinion?
5. What do I tell people about my diagnosis?
6. How can I connect with other patients?
7. How can my family and friends help?

 

1. What is multiple myeloma?

Multiple myeloma is a type of blood cancer in which certain cells, called plasma cells, in the bone marrow grow out of control. These cells can damage the bone, causing bone pain. Myeloma may also cause infection, anemia, problems with bruising and bleeding, and damage to some body organs (particularly the kidneys).

Multiple myeloma is considered to be incurable, but it is treatable. More treatments are currently available than ever before that help individuals with the disease live longer, healthier lives.

Learn more about multiple myeloma.

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2. What are the treatments for multiple myeloma?

Among the many treatment options for multiple myeloma are steroids and conventional chemotherapy and more targeted and less toxic treatments (such as Revlimid, Thalomid, and Velcade), as well as high-dose chemotherapy and stem cell transplantation. Some medications are taken orally, and others are given intravenously (by needle). Drugs to treat myeloma can be given alone, but more often they are given in combinations of two or more drugs to enhance the effectiveness of treatment. In addition to these standard treatments, new treatments are being evaluated in clinical trials. Talk to your doctor to see if you are eligible to participate in a clinical trial.

It is important to keep in mind that there is no one standard therapy for multiple myeloma. You and your doctor will decide on the best treatment approach for you. Learn more about how multiple myeloma is treated.

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3. How can I find a doctor who specializes in multiple myeloma?

Choosing a doctor who specializes in multiple myeloma is one of the most important decisions you will make. He or she will coordinate your care throughout the course of the disease. A specialist in multiple myeloma is known as a hematologist-oncologist, and there are several ways to find a specialist in your area.

  • Ask your primary care doctor for a referral. Most primary care doctors know one or more hematologists-oncologists with expertise in treating multiple myeloma. Check your health insurance plan, as some plans require that you get a referral from your family doctor. 

  • Ask your health insurance company for a list of hematologists-oncologists.

  • Search for hematologists-oncologists in lists on the websites of professional organizations. The following are some organizations that have compiled such lists.
    • American Society of Hematology (www.hematology.org)
      Find a Hematologist: search by city and state to find a specialist in your local area

    • American Society of Clinical Oncology (patient website: www.cancer.net)
      Find an Oncologist: search for oncology specialty “Leukemia/Lymphoma/Myeloma/MDS”

  • Multiple Myeloma Research Consortium (MMRC) (www.themmrc.org)
    Participating Centers are among the nation’s top cancer centers specializing in multiple myeloma


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4. Do I need a second opinion?

People with multiple myeloma are encouraged to seek a second opinion from a doctor with expertise in treating multiple myeloma soon after the initial diagnosis. In fact, most doctors will recommend consultation with another doctor before treatment is begun, and many insurance companies require a second opinion.

Seeking knowledge and expertise from more than one doctor will help you learn more about your diagnosis and treatment options and will help empower you to participate in decision-making about your treatment. 

Visit our sister organization, the Multiple Myeloma Research Consortium (MMRC) at www.themmrc.org for more information about cancer centers that specialize in multiple myeloma. Also available online is a list of National Cancer Institute (NCI)-designated cancer centers. The American Society of Hematology and the American Society of Clinical Oncology offer online searchable databases of specialists.

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5. What do I tell people about my diagnosis?

A diagnosis of multiple myeloma can be overwhelming, not only for you but for your family and friends. Your loved ones will want more information about the disease and how it is treated, but they may not know what to say or what questions to ask. Information on this site can help them better understand the disease and its treatment. They can also learn more by listening to one of our Webcasts or attending one of our free educational programs.

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6. How can I connect with other patients?

You can connect with other people with multiple myeloma in a variety of different ways.


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7. How can my family and friends help?

There are many ways for your family and friends to help. One of the most meaningful ways for them to help is to donate to the MMRF in your honor. They can also attend one of many events the MMRF holds across the country. Attending an event supports you in your journey with multiple myeloma as well as helps MMRF bring new treatments to patients and facilitate research to find a cure.

Your friends and family may also want to set up an MMRF Tribute page to document your experience and enable others to offer words of support and encouragement as you go through treatment.


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