Onconurse.com -- Fact Sheet

Melanoma Resources

This list includes resources you're likely to use most often and those that are the richest sources of melanoma-specific information. All entries in each category are listed in alphabetical order, not by importance.

Melanoma organization

  • The Melanoma Research Foundation
    23704-5 El Toro Road, #206
    Lake Forest, CA 92630
    Phone/Fax: (800) MRF-1290
    The Melanoma Research Foundation was founded by melanoma patients and survivors to fund melanoma research. The web site provides links to many other sources of information and support.

Organizations providing general 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 an enormous web site, numerous statements, booklets, and books about cancer treatment and care, and a hotline to help cancer patients with a variety of issues such as physician referrals. To learn of the newest treatments available, call (800) 4-CANCER and ask for the PDQ (Physicians Data Query) summary for melanoma. 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/pdq.html.

Melanoma Internet support groups

Internet support groups (listservs or chat rooms) are free email or chat room discussions on specific topics of interest. Email subscribers receive copies of emails sent by any member of the group to the listserv. 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. Chat rooms can be either "live" chats or "bulletin board" chats. A live chat is similar to walking into a room where a discussion is already taking place except you will be typing your messages. In the bulletin board type of chat room, a participant may post a message, and others will usually respond right below that message. With any of these support groups, you may elect to participate or just observe by reading the messages of others and the responses that their messages generate.

  • The Mel-L Mailing List. Pete Tustison manages an Internet mailing list where melanoma patients of all stages can share experiences, advice, and information. There currently are over 300 members. To subscribe, send an email to LISTSERV@maelstrom.stjohns.edu. Leave the subject line blank. Type the following in the message area: subscribe MEL-L YourFirstName YourLastName (for example, subscribe MEL-L John Smith).

  • The Melanoma Patients' Information Page hosts a bulletin board at www.mpip.org/bb/bbindex.html and chat room at www.mpip.org/chat/chat.html to provide support, information, and community for people with melanoma. It also hosts PatNet www.mpmd.com/patnet/patnet.html--a database that allows melanoma patients to share their case histories with each other. The profile can include treatment histories, what's worked and what hasn't, doctor contacts, and other information that can be of great benefit to others. Names are not used, so privacy is ensured.

  • Association of Cancer Online Resources (ACOR) hosts dozens of cancer email discussion groups. Discussion groups hosted by ACOR include CANCER, CANCER-FATIGUE, CANCER-PAIN, CANCER-PARENTS, and dozens of others. ACOR offers a convenient automatic subscription feature for discussion mailing lists at www.acor.org. Click on mailing lists (on the left nav bar); 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.

Books about melanoma

  • Coping With Melanoma and Other Skin Cancers by Wendy Long. Rosen Publishing Company, 1999.

  • Melanoma: Prevention, Detection, and Treatment by Catherine M. Poole. Yale University Press, 1998.

  • Saving Your Skin: Prevention, Early Detection, and Treatment of Melanoma and Other Skin Cancers, Second Edition, by Barney J. Kenet and others. Four Walls Eight Windows, 1998.

  • The Transformed Cell: Unlocking The Mysteries Of Cancer by Steven Rosenberg, MD, PhD. G.P. Putnam's Sons, 1992.

General reading and reference material

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

  • A 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, MD, 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.

  • 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.

  • When Life Becomes Precious by Elise Needell Babcock. Bantam Books, 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 recommends books, includes inspirational patient stories, and has links to many of the best cancer sites on the Internet.

  • 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 comprehensive information sources for cancer patients on the Internet.

  • 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
    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.

  • Melanoma Patients' Information Page
    MPIP is the best online site for people with malignant melanoma. It provides accurate and up-to-date medical information on the disease, its treatment, and current research. It also provides forums for patients to communicate.

  • OncoLink
    OncoLink was founded in 1994 by University of Pennsylvania cancer specialists to help cancer patients, families, health care professionals, and the general public get accurate cancer-related information at no charge. It contains general information, symptom management, psychosocial support and personal experiences, overviews of different types of cancer, answers to frequently asked questions, treatment options, and current news.

  • PubMed
    The National Library of Medicine's free search service provides access to the 9 million citations in MEDLINE (with links to participating online journals), and other related databases. Also includes FAQs, news, and clinical alerts.

  • National Comprehensive Cancer Network (NCCN) practice guidelines for melanoma

  • Charles (Pete) Tustison's FAQ (Frequently Asked Questions) on melanoma

  • Malignant melanoma
Free Air Services

  • Air Care Alliance
    (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
    (800) 328-4226 or (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. Patients must be able to walk and travel without life-support systems or medical attention. There are no cost or financial need requirements.
Companies that will do medical information searches for a fee:

  • Can Help (360) 437-2291

  • Planetree Health Resource Center (415) 923-3681

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

  • The Health Resource, Inc. (501) 329-5272
This fact sheet was developed by Nancy Keene, an author of several Patient-Centered Guides, including, with Wendy Hobbie and Kathy Ruccione, Childhood Cancer Survivors: A Practical Guide to Your Future, © Patient-Centered Guides, 2000. Call (800) 998-9938 or check www.patientcenters.com for more information.

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