Onconurse.com -- Fact Sheet

Multiple Myeloma Resources

This list includes resources you're likely to use most often and those that are the richest sources of information about multiple myeloma. Entries in each category are listed in alphabetical order, not by importance.

Myeloma organizations

  • International Myeloma Foundation
    12650 Riverside Drive, Suite 206
    North Hollywood, CA 91607
    (800) 452-2873
    (818) 487-7455 outside of the US and Canada
    www.myeloma.org (English and Spanish versions)
    Organization that helps everyone involved in the battle against myeloma including patients, their families, caregivers, healthcare professionals, and researchers. The IMF provides a free informational packet for patients, a patient handbook, a technical handbook, Web broadcasts, treatment updates, conferences, and patient-to-patient networks; it also funds research. A listing of support groups in the US and around the world is available at www.myeloma.org/TheIMF/imf_sup.html. The IMF also sponsors a patient-to-patient database that enables patients and their families to contact other myeloma patients to share experiences, provide valuable information, and offer support.

Organizations providing cancer information

  • American Cancer Society (ACS) National Office
    1599 Clifton Road NE
    Atlanta, GA 30329-4251
    (800) ACS-2345
    The American Cancer Society has many national and local programs to help cancer patients with travel, lodging, and emotional support. They also offer a 24-hour support line for both English- and Spanish-speaking cancer patients.

  • National Cancer Institute (NCI)
    Bethesda, MD 20892
    (800) 4-CANCER
    A division of the US National Institutes of Health, the NCI has a hotline to help cancer survivors with a variety of issues such as physician referrals, an enormous web site, and numerous statements, booklets, and books about cancer treatment and care. To learn of the newest treatments available, call (800) 4-CANCER and ask for the PDQ (Physicians Data Query) summary for multiple myeloma. These free statements explain the disease, state-of-the-art treatments, and ongoing clinical trials. There are two versions available: one for patients that uses simple language and contains no statistics and one for professionals that is technical, thorough, and includes citations to the scientific literature. The PDQ can also be found on the Internet at http://cancernet.nci.nih.gov/.

Myeloma Internet support groups

Internet support groups (also called listervs) are free email discussions on specific topics of interest. Each subscriber receives a copy of an email sent by any member of the group. Some active groups generate dozens of messages a day. If you subscribe to the "digest" mode, you will receive one email containing all of the messages posted that day. Email discussion groups are an excellent way to connect with people in similar circumstances.

  • The IMF and ACOR (Association of Cancer Online Resources) host a myeloma listerv and an amyloid listerv. To subscribe, go to www.myeloma.org/ListServer/listserver.html.

  • ACOR hosts numerous cancer email discussion groups on a variety of topics including CANCER, CANCER-FATIGUE, CANCER-PAIN, and CANCER-PARENTS. ACOR offers a handy automatic subscription feature for discussion mailing lists at http://www.acor.org. Click on mailing lists (on the left navbar), then click on the group you are interested in joining.

  • OncoLink, at the University of Pennsylvania, has an online FAQ (document answering frequently asked questions) about cancer listservs at http://oncolink.org/resources/faq/listserv.html. If you would like to learn a bit more about them and get answers to some specific questions, this is a good place to start.

Myeloma-specific books

  • Going for the Cure by Dr. Francesca M. Thompson. International Myeloma Foundation, 1992. Personal story of an orthopedic surgeon who was diagnosed with multiple myeloma. The treatments are outdated, but the emotions expressed are timeless.

  • Biology and Management of Multiple Myeloma by James R.Berenson, MD. Humana Press, 2000. Technical textbook.

General cancer reading and reference material

  • Cancer Clinical Trials: Experimental Treatments & How They Can Help You by Robert Finn. O'Reilly & Associates, Inc., 1999.

  • The Cancer Dictionary, Second Edition by Robert Altman and Michael Sarg. Checkmark Books, 1999.

  • Cancer Survivor's Almanac: Charting Your Journey edited by Barbara Hoffman, JD. John Wiley & Sons, 1998.

  • Everyone's Guide to Cancer Therapy, Third Edition edited by Malin Dollinger, MD. Andrews McMeel Publishing, 1998.

  • Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment, and Recovery by Gerald P. Murphy, Lois B. Morris, and Dianne Lange. Viking, 1997.

  • Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer by Michael Lerner. The MIT Press, 1996.

  • When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy Schlessel Harpham. HarperCollins, 1997.

  • When Life Becomes Precious by Elise Needell Babcock. Bantam Books, 1997.

  • The Chemotherapy and Radiation Therapy Survival Guide by Judith McKay and Nancee Hirano. New Harbinger Publications, 1998.

  • Sexuality and Fertility After Cancer by Leslie R. Schover. John Wiley & Sons, Inc., 1997.

  • Working with Your Doctor by Nancy Keene. O'Reilly & Associates, Inc. 1998.

Online Resources

  • CancerGuide
    Steve Dunn, a cancer survivor, clearly explains cancer types and staging, chemotherapy, pathology reports, and the pros and cons of researching your own cancer. He also recommends books and includes inspirational patient stories. He has links to many of the best cancer sites on the web.

  • Blood & Marrow Transplant Information Network
    Blood & Marrow Transplant Information Network is a not-for-profit organization that provides publications and support services to bone marrow, peripheral blood stem cell, and cord blood transplant patients and survivors. All literature is written in lay language and reviewed for accuracy by a team of medical experts from transplant centers throughout the US and Canada.

  • CancerNet
    An NCI sponsored comprehensive source of cancer information including types of cancer, treatment options, clinical trials, genetics, coping, support, resources, and cancer literature. CancerNet is one of the most important information sources for cancer patients on the Net.

  • CanSearch: Online Guide to Cancer Resources
    Service of the National Coalition for Cancer Survivorship that leads you step-by-step through an online search.

Clinical Trials

  • http://clinicaltrials.gov
    A consumer-friendly database sponsored by the National Institutes of Health that provides information on more than 4,000 federal and private medical studies involving patients at more than 47,000 locations nationwide.

  • PubMed
    The National Library of Medicine's free search service provides access to 9 million citations (short abstracts from technical journals) in MEDLINE and other related databases. It also includes FAQs, news, and clinical alerts.

  • OncoLink
    OncoLink was founded in 1994 by University of Pennsylvania cancer specialists to help cancer patients, families, healthcare professionals, and the general public get accurate cancer-related information at no charge. It contains general information, symptom management, psychosocial support and personal experiences, an overview of multiple myeloma, treatment options, support, and a virtual classroom about the role of bone marrow transplants for multiple myeloma.

  • PharmInfoNet
    Site that provides a drug database, an FAQ that answers questions about specific drugs, and press releases from pharmaceutical companies.

  • The Ariail Family's Information Page
    An excellent site that provides a comprehensive set of links to the best myeloma information on the Internet.

Free air services

  • Air Care Alliance (ACA)
    (800) 296-1217
    ACA is a nationwide association of humanitarian flying organizations. Founded in 1990, ACA members have safely flown 24,000 patients to and from medical treatments.

  • Corporate Angel Network, Inc. (CAN)
    Westchester County Airport, Building 1
    White Plains, NY 10604
    (914) 328-1313
    A nationwide nonprofit program designed to give patients with cancer the use of available seats on corporate aircraft to get to and from recognized cancer treatment centers. There is no cost or financial need requirement.

Companies that will do medical information searches for a fee

  • The Health Resource, Inc. (501) 329-5272

  • Can Help (360) 437-2291

  • Planetree Health Resource Center (415) 923-3680.

  • Schine On-Line Services (800) FIND-CURE

This resource list was developed by the editors of Patient-Centered Guides, a leading US publisher of health and medical content. We have published information on advanced breast cancer, colon and rectal cancer, non-Hodgkin's lymphomas, cancer clinical trials, childhood cancer, childhood leukemia, and other topics. For more information, call (800) 998-9938 or visit www.patientcenters.com.

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