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The following resources to help you research your illness/treatments are from Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. To order, or get more information about Musa's book, call 1-800-998-9938. Permission is granted to print and distribute this list of resources for noncommercial use as long as the above source is included. This information is meant to educate and should not be used as an alternative for professional medical care.

Starting points: Online | Organization | Print
Drugs: Online | Print
Clinical trials: Online and Print
BMT/HDC: Online and Print
Alternative treatments: Online | Organization | Print

Starting points

CancerGuide
http://cancerguide.org/index.html
Steve Dunn's Cancer Information Page. One of the best resources on how to go about researching particular diagnoses, as well as a thoughtful collection of materials on pitfalls and benefits of seeking information, including "The Median Isn't the Message," an essay by evolutionary biologist and cancer patient Stephen Jay Gould. Steve Dunn calls it "The wisest, most humane thing ever written about cancer and statistics."

CancerGuide: How to Research the Medical Literature
http://cancerguide.org/research.html
Steve Dunn has written the best online step-by-step thorough introduction to researching your own disease and treatments. A must read.

CANCERLIT
http://www.healthgate.com/HealthGate/MEDLINE/search.shtml
A database in the MEDLARS group, CANCERLIT contains over a million citations, including some government reports, meeting abstracts, monographs and some foreign language journals not included in MEDLINE.

EMBASE
http://www.healthgate.com/HealthGate/price/embase.html
EMBASE is a giant database located in Holland. With more depth on drugs and the international pharmaceutical industry, it can be a source for information about drugs not yet approved in the United States. If you wish to access this database, you will be asked to pay a fee.

Glossary of Breast Cancer Terms
http://www.patientcenters.com/breastcancer/glossary.html
The complete glossary from Advanced Breast Cancer: A Guide to Living with Metastatic Disease, by Musa Mayer.

In Vitro Chemosensitivity Testing/Cell Culture Drug Resistance Testing (CCDRT)
http://www-med.stanford.edu/CBHP/Medical/Chemotherapy/
http://oncolink.upenn.edu/specialty/chemo/general/
Note: This procedure is not yet widely accepted among oncologists.

From Cell Culture Drug Resistance Testing (CCDRT) by Larry M. Weisenthal, M.D., Ph.D.: "Cell culture drug resistance testing (CCDRT) refers to testing a patient's own cancer cells in the laboratory to drugs that may be used to treat the patient's cancer. The idea is to identify which drugs are more likely to work and which drugs are less likely to work. By avoiding the latter and choosing from among the former, the patient's probability of benefiting from the chemotherapy may be improved." Weisenthal's extensive material on this controversial test can be found at the above url address. You may also send e-mail to Larry Weisenthal at: 72203.2235@compuserve.com, or phone: (714) 894-0011; Fax: (714) 893-3658.

Another source is Rational Therapeutics Cancer Laboratories where the test is called the Ex Vivo Apoptotic Assay (EVA): http://www.rational-t.com/. Or send e-mail to: RationalT@aol.com. Phone: (562) 989-8128; Fax: (562) 989-8160.

Medical News and Alerts Doctor's Guide to the Internet (P\S\L Consulting Group, Inc.) http://www.pslgroup.com/breastcancer.htm#News
A list of press releases on new findings, treatments, and drugs related to breast cancer.

MEDLINE
http://www.ncbi.nlm.nih.gov/PubMed/
MEDLINE is the single most important resource for researching the published medical literature. It contains nearly nine million medical journal citations and abstracts in every field of medicine from thousands of journals, back to 1966. It is the online version of the Index Medicus, indexed by medical subject headings (MeSH) to enable effective searches. MEDLINE is now available free, from the NIH at PubMed.

The Merck Manual
http://www.merck.com/!!quLzx2cATquOnv2W4I/pubs/mmanual/
Online version of The Merck Manual Of Diagnosis And Therapy, sixteenth edition, 1992 by Merck & Co., Inc. The Merck Manual is the most widely used medical text in the world, providing useful clinical information to practicing physicians, medical students, interns, residents, and other health care professionals. Gives overall, concise diagnostic and treatment information for all but the most obscure diseases.

NCCS Guide To Cancer Resources: Cansearch
http://www.access.digex.net/~mkragen/index.html
Marshall Kragen, the Internet Liaison for the National Coalition for Cancer Survivorship, walks you through the process. Look in the "Basic Research" section. Also gathers links to clinical trials, mailing lists and other support online.

PDQ (Physician Data Query) CancerNet
http://wwwicic.nci.nih.gov/health.htm
PDQ is a cancer database maintained by the National Cancer Institute (NCI) and contains statements, updated monthly, of the most recent treatments, standard and investigational treatment protocols, clinical trials, and major cancer treatment centers and physicians. For an overview of how materials are reviewed for inclusion in CancerNet, read "Levels of Evidence: Explanation in Therapeutics Studies" at http://wwwicic.nci.nih.gov/h_treat.htm

PDQ Physician Statement on Breast Cancer
http://imsdd.meb.uni-bonn.de/cancernet/100013.html
http://www.oncolink.upenn.edu/pdq_html/1/engl/100013.html
Although the NCI Statements can be obtained directly from the NCI, this excellent version hyperlinks references in the text to the article abstracts, a major convenience. It is also available in Spanish at: http://www.oncolink.upenn.edu/pdq_html/1/span/100013.html.

• • • • • •

National Cancer Institute (NCI)
Building 31, Room 10A16
9000 Rockville Pike
Bethesda, MD 20892
Hot line: (800) 4-CANCER (800) 422-6237
FAX: (301) 231-6941
World Wide Web: http://www.nci.nih.gov/
The National Cancer Institute is the most comprehensive and up-to-date source of clinical and research information for cancer patients and for health care professionals. Detailed and extensive patient treatment information, reviewed and updated monthly, is available by a number of methods from NCI. A clinical trials finder that lists all NCI sponsored clinical trials offers contact and other information. NCI publishes a variety of related materials, from supportive care guidelines to clinical updates, available free.

• • • • • •

The Bantam Medical Dictionary, revised. Bantam Books, 1990. An inexpensive paperback book that gives brief definitions of medical terms and concepts.

The Cancer Dictionary, by Roberta Altman and Michael J. Sarg, M.D. New York: Facts On File, 1992. A valuable resource which combines cancer-related terms with simple definitions. Includes acronyms for chemotherapy protocols and some illustrations. Order from Facts on File; (800) 322-8755, or online at: http://www.factsonfile.com/

INFOMEDICINE: A Consumer's Guide to Finding the Latest Medical Research, by Fred D. Baldwin and Suzanne McInerney. Little, Brown and Company, 1996. A good layperson's guide to the benefits of researching and gathering medical information. Includes basic information on Medline searches, clinical trials, as well as a sound rationale on why information-seeking can be so important. Like any print resource, it is slightly outdated with regard to online resources.

The Merck Manual Of Diagnosis And Therapy, sixteenth edition. Merck & Co., Inc., 1992. The most widely used medical text in the world. While the Manual has grown from only 263 pages nearly 100 years ago, to about 2800 pages today, its primary purpose remains the same—to provide useful clinical information to practicing physicians, medical students, interns, residents, and other health care professionals. Gives overall, concise diagnostic and treatment information for all but the most obscure diseases. See previous section for online version.

Second Opinion: Your Comprehensive Guide to Treatment Alternatives, by Isadore Rosenfelt, M.D. New York: Simon & Shuster, 1981. Basic information from a physician about the importance of second opinions.

Taber's Cyclopedic Medical Dictionary, Clayton L. Thomas, editor. Seventeenth illustrated edition. F. A. Davis Company, 1993. A comprehensive resource with illustrations intended for "nurses and allied health professionals."


Drugs

Clinical Pharmacology Online
http://www.cponline.gsm.com/
A good source for comprehensive pharmacology monographs.

PharmInfo DrugDB
http://pharminfo.com/drugdb/db_mnu.html
This database provides access to the drug information resources on PharmInfoNet and elsewhere on the Internet. The database, listed by generic or trade name, has links to published articles on listed drugs.

RxMed
http://www.rxmed.com/prescribe.html
RxMed is a website for family physicians that has an excellent "prescribing information" section, which includes most of the materials found in the 1996 [or later edition] Physicians' Desk Reference, published by Medical Economics Data.

University of Maryland at College Park Libraries, Drug and Toxicology Information
http://www.lib.umd.edu/UMCP/MCK/GUIDES/drug.html
A comprehensive review of existing sources for drug information.

• • • • • •

Physicians' Desk Reference. Oradell, NJ: Medical Economics Data, 1997. Reference issued yearly lists authoritative information on all FDA approved drugs in technical language.


Clinical trials

What Are Clinical Trials All About?
http://cancernet.nci.nih.gov/clinical_trials/trialintro.html
For patients who are considering taking part in research for new cancer treatments. It explains clinical trials to patients in easy-to-understand terms and gives them information that will help them decide about participating. NCI publication #90-2706, 24 pages; (800) 4-CANCER.

CenterWatch Clinical Trials Listing Service
http://www.centerwatch.com/
An international listing of clinical research trials. Here, you'll also find profiles of centers conducting clinical research and listings of newly approved drug therapies.

MediStudy.com
3-304 Stone Road West, Suite 337
Guelph ON, Canada N1G 4W4
Telephone: (519) 827-9203/(877) 702-6334
Fax : (519) 827-9063
Email: contact@medistudy.com
Web: http://www.medistudy.com/
A source of clinical trial information for Canada, including a searchable database of trials recruiting patients.

NCCS Guide To Cancer Resources: Cansearch
http://www.access.digex.net/~mkragen/index.html
This is a general orientation to clinical trials, with links to helpful sites.

NCI Patient Clinical Trials
http://wwwicic.nci.nih.gov/trials/p_clinic.htm

NCI Selected High Priority Breast Cancer Treatment and Prevention Trials
http://wwwicic.nci.nih.gov/proto/breast.html

PDQ Clinical Trial Search Form for Patients
http://wwwicic.nci.nih.gov/prot/patsrch.shtml


Bone Marrow Transplantation/
High-Dose Chemotherapy

Blood and Marrow Transplant Newsletter
http://oncolink.upenn.edu/specialty/chemo/bmt/newsletter/
Edited by the List owner of the BMT-Talk listserv on the Internet, the Blood and Marrow Transplant Newsletter (formerly BMT Newsletter) has reviewed the major issues surrounding allogenic and autologous high-dose chemotherapy with stem cell or bone marrow transplant for all types of cancer. Issues 1992 to the present are available online. For print copies, write or call: 1985 Spruce Avenue, Highland Park, IL 60035; (708) 831-1913; FAX: (708) 836-1943.

Bone Marrow Transplants: A Book of Basics For Patients http://oncolink.upenn.edu/specialty/chemo/bmt/contents.html
Written by Susan K. Stewart, this is an excellent handbook for patients about what to expect from this treatment, covering medical, emotional and insurance issues. Technically accurate, yet easy to read. For print copies, write or call The BMT Newsletter: 1985 Spruce Avenue, Highland Park, IL 60035; (708) 831-1913; FAX: (708) 836-1943.

ECRI Patient Reference Guide:
High-Dose Chemotherapy with BMT for Metastatic Breast Cancer
http://www.hslc.org/emb/bctoc.html
This meta-analysis of clinical studies of HDC reviews all the available scientific and medical literature as of 1995. A must-read for anyone with metastatic breast cancer who is considering HDC. ECRI, 5200 Butler Pike, Plymouth Meeting, PA 19462-1298; (610) 825-6000.


Alternative treatments

A Guide to Unconventional Cancer Therapies
http://aorta.library.mun.ca/bc/uct/accept.htm
An extensive guide from the Ontario Breast Cancer Information Exchange Project. (See the Print section below to order by mail.)

Quackwatch: Your Guide to Health Fraud, Quackery, and Intelligent Decision-making
http://www.quackwatch.com/
Quackwatch, Inc., is a nonprofit corporation whose purpose is to combat health-related frauds, myths, fads, and fallacies. Dr. Stephen Barrett, a retired psychiatrist, is on the Board of the National Council Against Health Fraud, and is a Scientific Advisor to the American Council on Science and Health. He has written a number of books exposing and debunking fraudulent health scams. His ambitious goals include investigating questionable claims, distributing reliable publications, reporting illegal marketing, and improving the quality of health information on the Internet. Of particular interest is "A Special Message for Cancer Patients Seeking 'Alternative' Treatments."

The WellnessWeb
http://wellweb.com/altern/index.htm
WellnessWeb is a collaboration of patients, healthcare professionals, and other caregivers, to help people find the best and most appropriate medical information and support available. Information about clinical trials, community health, drug dosages and compliance, treatment options and research, how to select a health care provider, reports on dozens of illnesses and conditions, tips about healthy lifestyles, complementary treatment alternatives and options, and many more topics.

• • • • • •

The National Institutes of Health Office of Alternative Medicine
OAM Clearinghouse
PO Box 8218
Silver Spring, Maryland 20907-8218
Toll Free: 1-888-644-6226
TTY/TDY: 1-888-644-6226
FAX: 301-495-4957
World Wide Web: http://altmed.od.nih.gov/
The National Institutes of Health (NIH), Office of Alternative Medicine (OAM) identifies and evaluates unconventional health care practices. The OAM supports and conducts research and research training on these practices and disseminates information.

• • • • • •

Cancer and Natural Medicine: A Textbook of Basic Science and Clinical Research, by John Boik. Oregon Medical Press, 1996. A thorough review of the published scientific evidence for a wide range of therapies, including herbs, vitamins and minerals, dietary factors, electrotherapy, psychological approaches, and a grab bag of other interesting substances. From the author: "Since the clinical efficacies of the natural therapies discussed in the book are still largely unknown, this book is not written as a treatment guide. Rather, it presents the current state of research, and points to promising therapies and research needs."

Cancer Therapy: The Independent Consumer's Guide to Non-Toxic Treatment and Prevention, by Ralph Moss, Ph.D. Equinox Press, 1992. A widely respected review of 100 nontoxic or relatively non-toxic treatment options. Of particular interest is his review of the evidence that some of these substances can enhance conventional therapy or reduce its side effects. Moss's website is at: http://www.ralphmoss.com/

"Emotions and Cancer: What Do We Really Know?" by Jimmie C. Holland and S. Lewis, in Mind Body Medicine: How to Use Your Mind for Better Health, Daniel Goleman and Joel Gurin, editors. Consumer Reports Books, 1993. This review of a controversial topic looks past popular approaches to take a thoughtful look at what the research has actually shown.

A Guide to Unconventional Cancer Therapies, Ontario Breast Cancer Information Exchange Project, 1994. To order, write, call or fax R & R Bookbar, 14800 Yonge St, Unit 106, Aurora, Ontario, Canada L4G 1N3; (905) 727-3300; FAX: (905) 727-2620.

"Information Packages" on selected unconventional therapies. Published by the Canadian Breast Cancer Research Initiative. Available from the Canadian Cancer Society/National Cancer Institute of Canada by calling the Cancer Information Service (in Canada) at 1-888-939-3333; or outside Canada, at (416) 961-7223 x372; FAX: (416) 961-4189.

Options: The Alternative Cancer Therapy Book, by Richard Walters. Garden City Park, NY: Avery Publishing Group Inc., 1993. Less thorough-going and research-based than the above listed guides by John Boik, and Ralph Moss, but according to Steve Dunn of CancerGuide: "It includes extensive references to both the popular and alternative therapy literature, with some references to the scientific literature. In my opinion, this book sometimes puts too much credence in marginal therapies for which evidence is lacking, but it is still useful."


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