alt.support.cancer
- Frequently Asked Questions
Miscellaneous
Table of
Contents
How to understand
and interpret clinical trials
Why do governments
require a treatment to undergo clinical trial before it can be used?
If a treatment is
in clinical trial is it ok to use?
If a treatment has
not successfully completed clinical trial should it be promoted?
Books about both
chemo and radiation
Books about
effects from treatment
Books about cancer
for children
Books about dying
for children
A review of a do
it yourself cancer cure book
How to hide your
e-mail address
How should I deal
with net-abuse in the newsgroup?
What is the
general view of spam on the newsgroup?
Donald E. Ekman
"Crossly the Glad-Eyed Bear”
Some humorous
classics about quackery
How can I help in
the fight against cancer?
Disclaimer: this FAQ is provided for educational purposes only. It cannot be used for diagnosing or treating a disease. If you have or suspect you may have cancer, you should consult your doctor. No responsibility can be accepted for information on any linked page, please read the provider's own disclaimer where appropriate. The external links in this FAQ are provided for the convenience of alt.support.cancer newsgroup visitors. The alt.support.cancer newsgroup has no interest in, responsibility for, or control over the linked sites. The alt.support.cancer newsgroup makes no promises or warranties of any kind, express or implied, including those of merchantability or fitness for a particular purpose, as to the content of the linked site. In no event shall the alt.support.cancer newsgroup be liable for any damages resulting from use of these links.
Clinical trials |
Clinical trials, also called cancer treatment or research studies, test new treatments in people with cancer. The goal of this research is to find better ways to treat cancer and help cancer patients. Clinical trials test many types of treatment such as new drugs, new approaches to surgery or radiation therapy, new combinations of treatments, or new methods such as gene therapy.
The phases of clinical trials (from the National Cancer Institute (NCI) Office of Cancer Complementary Alternative Medicine update posted 01/10/00)
Phase I trials: These first studies in people evaluate how a new drug should be given (by mouth, injected into the blood, or injected into the muscle), how often, and what dose is safe. A Phase I trial usually enrolls only a small number of patients, sometimes as few as a dozen.
Phase II trials: A phase II trial continues to test the safety of the drug, and begins to evaluate how well the new drug works. Phase II studies usually focus on a particular type of cancer.
Phase III trials: These studies test a new drug, a new combination of drugs, or a new surgical procedure in comparison to the current standard for treatment. A participant will usually be assigned to the standard treatment group or the new treatment group at random (called randomization). Phase III trials often enroll large numbers of people and may be conducted at many doctors' offices, clinics, and cancer centers nationwide.
How to understand and interpret clinical trials |
Best Case Series
Investigators describe patients who they believe have had the best results with a particular treatment.
Since 1991, the National Cancer Institute (NCI) has had a process for evaluation of data from alternative medicine practitioners of groups of patients with cancer treated with alternative medical approaches. This process, called the Best Case Series Program, provides an independent review of the medical records and primary source materials (medical imaging [e.g., radiographic, or ultrasound films] and pathology [cytology and surgical pathology]) and an overall assessment of the evidence for a therapeutic effect. (National Cancer Institute (NCI) Office of Cancer Complementary Alternative Medicine update posted 01/10/00)
Any Best Case Series described on this web site will be designated as to whether or not they have been reviewed by the National Cancer Institute.
Responses to Treatment
Standards for evaluation of the responses to treatment of measurable tumors have been defined by the National Cancer Institute.
National Cancer Institute Response Criteria
Code - Label - Definition
CR - Complete Response - Complete disappearance of all evident tumor.
PR - Partial Response - A greater than or equal 50% decrease in the cross sectional area (product of the largest diameter and its perpendicular diameter) of measurable tumor without progression in other tumor sites or the appearance of new lesions.
SD - Stable Disease - Change in measurable disease too small to meet the requirements for partial response or progression without the appearance of new lesions.
PD - Progressive Disease - Increase in greater than or equal 25% of any pretreatment area of measurable malignant disease, development of any new area of malignant disease, physiologic evidence of progression, or significant clinical deterioration reasonably presumed to be related to malignant disease.
Types of Studies Concerning Risk or Prevention of Disease
Although the terms below are defined in the context of the risk of developing disease, the concepts are adaptable for describing the risk of death or other outcomes following the development of disease as in the clinical trials studies previously defined.
Prospective Cohort
A group of people with a common characteristic (e.g. age, city of residence, exposure to a particular agent, etc.) is followed to determine the characteristics of those who develop disease. Cohorts may be compared with control groups that have not been exposed to a particular agent. These controls may be internal (from within the cohort) or external (outside of the cohort) that have not been exposed to a particular agent. In some cases, persons may function as their own (internal) controls by being exposed and then not exposed to a particular agent. Historical controls are a comparison group of persons who have been exposed to an agent prior to the current cohort (e.g., reported in a published medical article).
Retrospective Cohort
A group of people with a common characteristic is identified through a review of records. Characteristics, exposures, and occurrence of disease that have already occurred subsequently, but still in the past are then determined. A more current term for this type of cohort would be "Historical Cohort".
Retrospective Cohort With Historical Controls
A group of people with a common characteristic is identified through a review of records. Their response to treatment is then compared with a group of patients with similar characteristics whose treatment and response have been previously reported in the medical literature.
Case Control
A group or sample of persons with a particular disease (cases) is identified and then compared with another group or sample that does not have the disease (controls). This comparison focuses upon characteristics and exposures which have occurred in the past within each group that may be associated with their current designation as a case or control.
Case Report
Description of the diagnosis, treatment, and response of an individual patient.
Why do governments require a treatment to undergo clinical trial before it can be used? |
To prove that the treatment is safe and effective for the public.
If a treatment is in clinical trial is it ok to use? |
No! Many times the term "in clinical trial now" is used to give legitimacy to an unproven therapy. The various stages in a clinical trial must be understood to prevent this distortion from occurring.
If a treatment has not successfully completed clinical trial should it be promoted? |
No! It should not be recommended to terminal cancer patients, by anyone, other than medical professionals qualified to do so.
How to use PubMed? |
Here is how to use PubMed:
1) Go to www.ncbi.nlm.nih.gov
2) Select PubMed from the pull-down menu or click on the word in the dark blue bar near the top.
3) Enter search terms in the box. You can use your own words or, better yet, the terms from the defined thesaurus ("MeSH= Medical Subject Headings) to which all the articles have been indexed. The terms can be connected by Boolean operators (all caps)AND, NOT, and OR. If there are too many results, you may want to use subheadings with the MeSH terms. I'll give you some examples below.
4) When you get the list of articles, click on one that interests you. You will get the bibliographic refs and an abstract if one is available. Depending on the policy of the journal, you may also be able to click on a link to the full-text version. There will also be a clickable "Related Articles" button which will use the MeSH headings in that article to look for articles which were also indexed with those terms and thus possibly of interest. You can also look at the MeSH terms that were used for that article by selecting
MEDLINE from the pull-down that says "Citation"(the default format).
Here are some MeSH terms you might want to use [example for liver cancer]. If you use them without a subheading, you should put [mh] beside them to indicate you are using a MeSH term rather than just a text word [tw] or a title word [ti].
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hepatoma |
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liver neoplasms |
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hepatitis B |
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hepatitis B, chronic |
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multimodal treatment |
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survival rate |
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survival analysis |
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disease free survival |
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remission induction |
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treatment outcome |
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hepatectomy |
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liver transplantation |
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therapeutic embolization |
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immunotherapy |
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alternative medicine |
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postoperative complications |
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gene therapy |
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antineoplastic agents |
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antineoplastic agents, combined |
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antiviral agents |
The subheadings you might want to use are:
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/th = therapy |
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/dt = drug therapy |
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/mo = mortality |
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/su = surgery |
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/rt = radiotherapy |
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/ae = adverse effects (used with techniques or drugs) |
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/tu = therapeutic use (used with drugs) |
Thanks to Helen on sci.med.diseases.cancer
Cancer resources |
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CDC Division of Cancer Prevention and Control |
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Centers for Disease Control and Prevention |
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4770 Buford Highway, NE |
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MS K-64 |
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Atlanta, GA 30341 United States |
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Phone: 888-842-6355 |
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Centers for Disease Control and Prevention (CDC) |
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1600 Clifton Road |
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Atlanta, GA 30333 United States |
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Phone: 800-311-3435 |
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Centers for Medicare and Medicaid Services |
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7500 Security Boulevard |
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Baltimore, MD 21244 United States |
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Phone: 877-267-2323 |
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FDA Cancer Liaison Program |
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Cancer Liaison Program Office of Special Health Issues |
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FDA 5600 Fishers Lane |
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HF-12 Room 9-49 |
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Rockville, MD 20857 United States |
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Phone: 888-INFOFDA |
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Food and Drug Administration |
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FDA (HFE-88) |
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5600 Fishers Lane |
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Rockville, MD 20857 United States |
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Phone: 888-463-6332 |
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National Academies |
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500 Fifth Street, NW |
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Washington, DC 20001 United States |
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Phone: 202-334-2000 |
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National Cancer Institute |
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31 Center Drive |
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MSC 2580 |
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Bethesda, MD 20892-2580 United States |
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Phone: 800-4-CANCER |
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National Center for Complementary and Alternative Medicine (NCCAM) |
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NCCAM Clearinghouse |
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P.O. Box 7923 |
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Gaithersburg, MD 20898 United States |
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Phone: 888-644-6226 |
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National Health Information Center (NHIC) |
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P.O. Box 1133 |
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Washington, DC 20013-1133 United States |
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Phone: 800-336-4797 |
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Fax: 301-984-4256 |
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National Institute of Environmental Health Sciences (NIEHS) |
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P.O. Box 12233 |
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Research Triangle Park, NC 27709 United States |
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Phone: 919-541-3345 |
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National Institutes of Health |
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9000 Rockville Pike |
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Bethesda, MD 20892 United States |
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Phone: 301-496-1776 |
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National Library of Medicine |
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8600 Rockville Pike |
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Bethesda, MD 20894 United States |
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Phone: 888-FIND-NLM |
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Office of Cancer Complementary & Alternative Medicine |
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National Cancer Institute, NIH |
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6116 Executive Plaza North, Suite 600 |
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MSC 8339 |
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Bethesda, MD 20852 United States |
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Phone: 800-4CANCER |
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Office of Cancer Survivorship |
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6130 Executive Boulevard |
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Room 4089A |
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Bethesda, MD 20892-7397 United States |
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Phone: 301-402-2964 |
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Fax: 301-594-5070 |
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Office of Minority Health Resources Center |
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P.O. Box 37337 |
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Washington, DC 20013-7337 United States |
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Phone: 800-444-6472 |
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Fax: 301-230-7198 |
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State Cancer Legislative Database Program |
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National Cancer Institute |
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National Institutes of Health |
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Building 31, Room 10A48 |
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31 Center Drive, MSC 2580 |
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Bethesda, MD 20892-2580 United States |
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Phone: 301-496-5217 |
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Fax: 301-402-1225 |
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National Academies Press |
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Please direct inquiries to: |
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Stephen Mautner |
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Joseph Henry Press |
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500 Fifth Street, NW |
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Washington, DC 20001 |
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Fax: (202) 334-2793 |
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E-mail: smautner@nas.edu |
Cancer books |
A word about the books listed here. An attempt has been made to stay within good sense and sound judgment when selecting books for this list. There are books written about alternative medicine and cancer cures that are not supported by satisfactory completion of clinical trials. Those books are not included here. This is not an attempt at censorship, but a decision to provide solid recommendations to people that need good information, as they fight the battle of their lifetime.
Most of the books in this section are listed by author, title, and publisher. The intent is that you can print this list and search your public library for the hardcover or paperback. In the event that it can't be located at the local library, you are encouraged to use a search engine-such as Google-to locate it on the Internet.
Other sources are available online. One of them is the Oxford University Press catalogue at http://www.oup.co.uk/search/ Enter the word cancer or the cancer name in the box and click Find!
Cancer booklets |
Life Choices, by Joan Sosin, RN, JD
Masthead Date February 11, 2002
The index contains:
Introduction
Making realistic decisions
Pain management
Easily broken bones
Low blood counts
Fatigue
Loss of muscle tone
Shortness of breath, coughing and lung discomfort
Weight loss, Nausea and loss of appetite
Hospice
Resources.
This booklet gives a good broad-brush treatment to the above topics, and it is FREE. Go to http://community.nursingspectrum.com/MagazineArticles/article.cfm?AID=5972 to get copies or view in html. Thanks to Berky the Warrior
General cancer reading |
The Alpha Book on Cancer and Living. Alameda, California: The Alpha Institute, 1993.
Brenner, David J., and Eric Hall. Making the Radiation Therapy Decision. RGA Publishing Group, 1996.
Cancer Rates and Risks, 1996. The National Cancer Institute, 1-800-4-CANCER.
Crane, Judy B. How to Survive Your Hospital Stay. Westlake Village, California: The Center Press, 1997.
Cukier, Daniel, and Virginia McCullough. Coping with Radiation Therapy: A Ray of Hope. Los Angeles: Lowell House, 1996.
Dollinger, M., E. Rosenbaum, and G. Cable, editors. Everyone's Guide to Cancer Therapy. Andrews & McMeel, 1998.
Drum, D. Making the Chemotherapy Decision. Lowell House, 1997.
Friedman, A., T. Klein, and H. Friedman. Psychoneuroimmunology, Stress, and Infection, New York: CRC Press, 1996.
Glaser, Ronald, and Janice Kiecolt-Glaser. Handbook of Human Stress and Immunity. New York: Academic Press, 1994.
Harpham, Wendy Schlessel. After Cancer: A Guide to Your New Life. New York: W.W. Norton, 1994.
Harpham, Wendy Schlessel. Diagnosis: Cancer. New York: W.W. Norton, 1998.
Harpham, Wendy Schlessel. When a Parent Has Cancer: A Guide to Caring for Your Children. HarperCollins, 1997.
Hoffman, Barbara, ed., The National Coalition for Cancer Survivorship. A Cancer Survivor's Almanac. Minneapolis: Chronimed, 1996.
Inlander, Charles B., ed. People's Medical Society Health Desk Reference: Information Your Doctor Can't or Won't Tell You. New York: Hyperion, 1996.
Johnson, J., and L. Klein. I Can Cope: Staying Healthy with Cancer. Minneapolis: Chronimed, 1994.
Keene, Nancy. Childhood Leukemia: A Guide for Family, Friends, and Caregivers. Sebastopol, California: O'Reilly & Associates, 1997. A good reference for the parents of a child with NHL, some forms of which can resemble one form of childhood leukemia.
Keene, Nancy. Working with Your Doctor: Getting the Healthcare You Deserve. Sebastopol, California: O'Reilly & Associates, 1998.
Keene, Nancy. Your Child in the Hospital: A Practical Guide for Parents. Sebastopol, California: O'Reilly & Associates, 1997.
Lerner, Michael. Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer. Cambridge: The MIT Press, 1996.
McKay, J., N. Hirano, and M. Lampenfeld. The Chemotherapy and Radiation Therapy Survival Guide. New Harbinger Publications, 1998.
The Merck Manual, available in either the paper version or at their web site http://www.merck.com/, is a vast resource. Many public libraries have a copy of the Merck Manual in their non-circulating reference section.
Murphy, G., L. Morris, and D. Lange, editors. Informed Decisions - The Complete Book of Cancer Diagnosis, Treatment and Recovery. The American Cancer Society. New York: Viking Press, 1997.
The National Cancer Institute's PDQ State-of-the-Art Treatment Statements for Physicians on: Adult Non-Hodgkin's Lymphoma; Childhood Non-Hodgkin's Lymphoma; Breast Cancer and Pregnancy; Non-Hodgkin's Lymphoma During Pregnancy; AIDS-Related Lymphomas; Cutaneous T-Cell Lymphoma; Primary Central Nervous System Lymphoma, and others.
Olson, Kaye, R.N. Surgery and Recovery: How to Reduce Anxiety and Promote Healthy Healing. Traverse City, Michigan: Rhodes and Easton, 1998.
Radiation Therapy and You, a fifty-page booklet, is available from the U.S. National Cancer Institute by calling 1-800-4-CANCER.
Schover, L. Sexuality and Fertility After Cancer. New York: John Wiley & Sons, 1997.
Spiegel, David. Living Beyond Limits: New Hope and Health for Facing Life-Threatening Illness. New York: Fawcett Columbine, 1994.
Youngson, Robert, with the Diagram Group. The Surgery Book. New York: St. Martin's Press, 1993.
Zakarian, Beverly. The Activist Cancer Patient. New York: John Wiley & Sons, 1996.
Zukerman, Eugenia, and Julie Ingelfinger. Coping with Prednisone (and other cortisone-related medicines). New York: St. Martin's Press, 1997
Breast cancer books |
Dr. Susan Love's Breast Book 3rd Edition Author: Dr. Susan Love M.D. #ISBN- 0-7382-0235-5
Books about general treatment |
Non-Hodgkin's Lymphomas - Making Sense of Diagnosis, Treatment, and Options by Lorraine Johnson, O'Reilly 1999
Coping With Radiation Therapy: A Ray of Hope by Virginia McCullough and Daniel Cukier, 1996
Books about radiation therapy |
Making the Radiation Therapy Decision by David Brenner et. al 1997
Books about chemotherapy |
Making the Chemotherapy Decision by David Drum & Michael Van-Scoy Mosher 1998
Coping with Chemotherapy by Nancy Bruning 1993, Ballentine
Coping With Prednisone and Other Cortisone-Related Medicines: It May Work Miracles, but How Do You Handle the Side Effects? By Eugenia Zukerman and Julie Ingelfinger, MD 1997, St. Martins Press
Books about both chemo and radiation |
The Chemotherapy and Radiation Therapy Survival Guide by Judith McKay and Nancee Hirano, 1998
Books about effects from treatment |
Numb Toes and Aching Soles: Coping with Peripheral Neuropathy by John Senneff, 1999
Hodgkin's Disease: The Consequences of Survival by Mortimer J. Lacher, John R. Redman
Books about cancer for children |
Clifford, Christine. Our Family Has Cancer, Too! Pfeifer-Hamilton Publishing, 1997.
Fromer, Margot Joan. Surviving Childhood Cancer: A Guide for Families. American Psychiatric Press, 1995. Written for children.
Harpham, Wendy Schlessel. Becky and the Worry Cup: A Children's Book About a Parent's Cancer. HarperCollins, 1997.
Kohlenberg, Sherry. Sammy's Mommy Has Cancer. New York: Magination, 1993. For preschoolers.
Martin, Ann M. Jessi's Wish (Baby-Sitters Club No. 48) . Apple, 1991. Through Danielle, who has cancer, Jessi learns new things about herself.
Trillin, Alice. Dear Bruno. New Press, 1996. A cartoon book about adjusting to cancer, primarily but not exclusively for children.
Books about dying for children |
Take this list to your local library or search an online bookstore for the following titles:
Buscaglia, Leo. The Fall of Freddie the Leaf. New York: C.B. Slack, 1982.
Hitchcock, R. Tim's Dad: A Story About a Boy Whose Father Dies. Human Services, Springfield, Illinois, 1998.
Holden, L.D. Gran-Gran's Best Trick: A Story for Children Who Have Lost Someone They Love. New York: Magination, 1989.
Krementz, Jill. How It Feels When a Parent Dies. New York: Alfred A. Knopf, 1981.
LeShan, Ed. Learning to Say Good-by: When a Parent Dies. New York: Macmillan, 1976.
O'Toole Donna. Aarvy Aardvark Finds Hope. Burnsville, North Carolina: Celo Press, 1988.
Vigna, J. Saying Good-bye to Daddy. Morton Grove, Illinois: Albert Whitman, 1991.
White, E.B. Charlotte's Web. New York: Harper & Row, 1952.
Books about dying |
Look in your public library for these titles about dying:
Basta, Lofty. A Graceful Exit: Life and Death on Your Own Terms. New York: Plenum Press, 1996.
Bernard, Jan, and Miriam Schneider. The True Work of Dying. New York: Avon Books, 1996.
Callanan, Maggie, and Patricia Kelley. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. New York: Bantam Books, 1997.
Furman, Joan, and David McNabb. The Dying Time: Practical Wisdom for the Dying. New York: Bell Tower, 1997.
Groopman, Jerome. The Measure of Our Days. New York: Viking Press, 1997.
Humphry, Derek. Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying. The Hemlock Society, 1997.
The Rights of the Dying by David Kessler, published by Vermillion (a UK imprint of Ebury Press and Random House; 1997; ISBN 0 09 186413 5; 204 pages)
Kramp, Erin Tierney, Douglas H. Kramp, Douglas H. and Emily P. McKhann. Living with the End in Mind: A Practical Checklist for Living Life to the Fullest by Embracing Your Mortality. Three Rivers Press, 1998.
Kubler-Ross, Elisabeth. Death: The Final Stage of Growth. New York: Simon and Schuster, 1975.
Kubler-Ross, Elisabeth. Living with Death and Dying. New York: Touchstone (Simon and Schuster), 1981.
Kubler-Ross, Elisabeth. On Death and Dying. Macmillan, 1969.
Kubler-Ross, Elisabeth. To Live Until We Say Good-bye. New York: Fireside (Simon and Schuster), 1978.
Lattanzi-Licht, Marcia, John Mahoney, and Galen Miller. The Hospice Choice: In Pursuit of a Peaceful Death. New York: Fireside (Simon and Schuster), 1998.
McPhelimy, Lynn. In the Checklist of Life: A Working Book to Help You Live and Leave Life. AAIP Publishing Company, 1997.
Nuland, Sherwin. How We Die: Reflections on Life's Final Chapter. New York: Alfred A. Knopf, 1993.
Ray, M. Catherine. I'm with You Now: A Guide Through Incurable Illness for Patients, Families, and Friends. New York: Bantam Books, 1997.
Weenolsen, Patricia. The Art of Dying. New York: St. Martin's Press, 1996.
Lynn, J. L., Schuster, J. L., & Kabcenell, A. K. (2000). Improving care for the end-of-life. New York: Oxford University Press. This text provides guidance on how to improve care at the end of life. The chapters rely heavily on the experiences of the four dozen teams who participated in a year-long collaboration to examine how to improve care at the end of life. The teams made changes in four critical areas, controlling pain and other symptoms, improving advanced care planning, helping and comforting patients and families; and developing continuity of care. The book provides information on major causes of death and describes opportunities for the quality of life for those affected by them.
McKhann, C. M. (1999). A time to die: The place for physician assistance. New Haven, CT: Yale University Press. Drawing upon in-depth interviews with people who were dying from a variety of illnesses, the author examines the dying process encountered in painful and debilitating diseases, discusses the needs of patients and their families and discusses many aspects of physician-assisted dying. The author describes the forms of physician-assisted dying currently taking place and discusses moral, religious, legal and public policy issues.
Neimeyer, R. A. (2001). Meaning, reconstruction and the experience of loss. Washington, DC: American Psychological Association. Presents a comprehensive portrayal of grief and loss as a process of meaning-making. Drawing upon both quantitative and qualitative studies, contributors summarize and evaluate research on construction of life narratives in the wake of loss, post-traumatic growth, family processes of meaning negotiation, and the reformulation of personal identity in the aftermath of bereavement. Constructivist shifts in psychodynamic, cognitive-behavioral , and systemic theories are considered, yielding insights into particular contexts of loss (as in the death of a child, or contending with partner loss to AIDS) and therapeutic approaches to grief counseling and therapy.
Neimeyer, R. A. (2001). Lessons of loss: A guide to coping. New York: Brunner Routledge. Building on the idea of grieving as a process of meaningful reconstruction, this book offers concepts and methods for facilitating integration of loss through a variety of narrative and self-reflective exercises.
Nuland, S. B. (1995). How we die: Reflections on life's final chapter. New York: Vintage Books. The author examines the seven most common roads to death: old age, cancer, AIDS, Alzheimer's, accidents, heart disease, and stroke. In an attempt to demythologize death, he presents it in its biological and clinical reality, as seen by those who are witness to it and as felt by those who experience it.
Rando. T. A. (Ed.). (2000). Clinical dimensions of anticipatory mourning: Theory and practice in working with the dying, their loved ones and their caregivers. Champaign, IL: Research Press. The events preceding a persons death have a profound effect on that person's dying experience and the pre and post death bereavement of survivors. This text includes chapters by persons at the forefront in the area of anticipatory mourning. Topics range from clinical knowledge and theory to the specifics of anticipatory mourning from the perspectives of the different parties involved.
Steinberg, M. D., & Youngner, S. J. (Eds.). (1998). End-of-life decisions: A psychosocial perspective. Washington, DC: American Psychiatric Press. Striking a balance between the need for patient autonomy and the need to make well-formulated treatment decisions, the authors explore the roles psychiatrist can play as adviser to terminally ill patients and their loved ones. The authors describe the range of emotional and psychiatric issues faced by terminally ill patients, their families, and physicians, which affect choices patients make to limit treatment or to ask for assistance in dying.
Webb, M. (1997). The good death: The new American search to reshape the end of life. New York: Bantam Books. Based on more than six years of firsthand research and reporting, The Good Death examines the medical, legal and ethical controversies that surround end-of-life care, and explores how these controversies affect individuals and families. The author introduces the reader to leading doctors, medical ethicists, pain specialists and legal experts working to improve care at the end of life.
Weenolsen, P. (1996). The art of dying: How to leave this world with dignity and grace, at peace with yourself and your loved ones. New York: St. Martin's Griffin. Written for the dying person, this book helps one to resolve the spiritual, emotional, and physical concerns unique to this time. The book includes very practical information about arranging finances, advanced directives and ideas about what to expect in the last few moments before death.
A review of a do it yourself cancer cure book |
How I Conquered Cancer: A Naturopathic Alternative. / (Book review)
Author/s: Manfred Kroger
Issue: March-April, 1998
How I Conquered Cancer: A Naturopathic Alternative by Eric Gardiner (Houston, TX: Emerald Ink Publishing, 1997), 118 pp., $9.95 (paperback).
This book's back cover advises, "If you have prostate cancer, or if you are an American male 30 years old or older, you must read this book. An entire industry out there wants to take out your prostate. You don't have to play their game. Keep your prostate, your bladder control, your dignity. The other game in town is called Naturopathic Medicine and you owe it to yourself to find out about it." This argument sounds suspiciously like those we sometimes hear from well-meaning friends: "Yes, you could have your damaged car repaired by an established dealership garage, but instead why not take it to an alley shop owned by a friend's friend who is said to have put a few clunkers back on the road?" Actually, this book seems just as anecdotal--and about as reliable--as most third-hand car-repair advice.
It's another book by an aging male who, for a lifetime, has recklessly abused his body and health, is suddenly confronted with the "big C," sets out to hastily live the rest of his life as he should have all along, and then wittily and with an upbeat voice touchingly instructs the rest of the world with his newfound insights.
When diagnosed with prostate cancer, Mr. Gardiner began seeing the medical establishment as "the enemy." He also indicted others as contributors to his condition and to human misery in general--namely, the pharmaceutical and food-processing industries, conventional agriculture, and all air, water, soil, and food polluters. On his enemies list are all these things he believes are linked to cancer: meat, metal in your mouth, aluminum in your kitchen, "poisonous" consumer products, parasites in your intestine, unfiltered air and water, "nonorganic" food, alcohol, tobacco, stress, and lack of exercise.
There is some good common sense here and some good advice from the "orthodox" literature. But when this information is diluted with the mishmash of sometimes conflicting naturopathic pronouncements, a thoughtful reader must conclude that this book is uneven and studded with sheer drivel. The author's naturopathy is a dangerous disregard for medical science, a blind trust in unproven remedies and questionable practices, and a declaration of war against the scientific method and most of what is praised as achievements in science and technology.
Worst of all are the recommendations for hopelessly scared cancer victims to use numerous regimens, products, and devices that have generally not been shown in tests to be safe and effective. Almost as bad are the many rigid, irrational do's and don'ts.
We need sensible, sane, and truly helpful books for those confronted with the threat of cancer. This volume is not one of them.
Netiquette |
RFC 1855: Netiquette Guidelines http://www.cybernothing.org/cno/docs/rfc1855.html is the basis for all modern Internet Network Etiquette documents.
Rules for posting to Usenet http://www.faqs.org/faqs/usenet/posting-rules/part1/
Emily Postnews Answers Your Questions on Netiquette http://www.faqs.org/faqs/usenet/emily-postnews/part1/
Answers to Frequently Asked Questions about Usenet http://www.faqs.org/faqs/usenet/faq/part1/
An Alternative Primer on Net Abuse, Free Speech, and Usenet http://www.faqs.org/faqs/usenet/freedom-knights/free-speech-faq/
A Primer on How to Work With the Usenet Community http://www.faqs.org/faqs/usenet/primer/part1/
Hints on writing style for Usenet http://www.faqs.org/faqs/usenet/writing-style/part1/
Personal privacy |
Please be careful about the information you post to the newsgroup. Please think carefully before you post or e-mail private information about yourself (or any present day individual) to the world.
If you do not want Google to archive your newsgroup posts, add "X-no-archive: Yes" to the header, or as the first line in the body of the post. In reality, though, you should consider anything you post as public, permanent, and searchable.
How to hide your e-mail address |
Newsgroups are routinely scanned for e-mail addresses by spammers. This is done by software which examines posted articles and looks in header fields such as From and Reply to for e-mail addresses to add to their lists. This software may try to pick up anything that resembles an e-mail address anywhere in the body of the article, including the signature line.
You can adapt a few techniques to prevent spammers from automatically picking up your address. First, don't give your real e-mail address to anyone you don't know, such as a request on a web page, or correspondence (e-mail or snail mail) to companies. When posting to newsgroups, you can alter your e-mail address so that it is still discernible to real people, but confusing to bots, which take the address in its entirety. For example, if your e-mail address is "yourname@your.com" you might use an e-mail address like one of the following:
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DELETE_CAPS_TO_REPLY_yourname@your.com |
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yourname@DONTSPAMyour.com |
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delete DONTSPAM to reply |
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yourname@##your.com |
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* delete ## to reply |
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yourname@your.com* |
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* delete the trailing asterisk to send back a reply |
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yourname at your dot com |
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replace "at" with @ and "dot" with . to reply |
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yourname@yourXX.com |
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delete XX's to send back a reply |
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yourname@yourxyz.com |
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delete xyz to send back a reply |
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yourname@your.org |
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replace org with com to reply |
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yourname@yourjoke.com |
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delete "joke" in the return address to reply |
Be creative! With the help of twisted minds, spambots are becoming cleverer. Many can decipher simple techniques of hiding your e-mail address. Thus, you are better off using techniques like the last three in the above example, which change the domain name to appear "real" to spambots.
Avoid using the special characters < > or () or "" as these delimiters will be ignored, resulting in spam in your inbox. Be sure to instruct people as to how to respond to you -- include instructions in your signature line as to how to respond. Don't include your real e-mail address there - spammers' robots will find it.
Note: modify only your domain name (to the right of the @ - your.com in the previous example). If you modify your username (yourname, above), it will cause unnecessary traffic on the Internet. By modifying your username, the spam will be sent to your server (your ISP). Your server won't find a user by that name, so it will return the spam back to the spammer's server. Since most spammers fake their "replyto:" address, the spam will most likely go into a null file (deleted).
Problems with this approach include:
It takes effort for someone to change your return address and reply to you. You may want to direct your newsreader to simply dummy up your "from" header, and leave the "reply to" header intact when you post, in order to confuse the bots. But keep in mind that many people routinely respond to newsgroup posts with an e-mail copy to the originator. If you post to a newsgroup with a fake reply to header, people sending replies to you can become very unhappy when their replies bounce back to them.
Using a bogus domain name can result in an unsuspecting, but legitimate, domain being sent your e-mail. Note that the domain nospam.com is now placed on hold because of the large amount of UCE [unsolicited commercial email] that has been directed there.
What is net-abuse? |
Since the first net-abuse newsgroup, many curious forms of Usenet behavior have been discussed. Of these, spam is the one most universally accepted as 'net-abuse', which is why it gets its own section below.
However, "it's for abuse *of* the net, NOT abuse *on* the net." Just because somebody does something vile doesn't mean we can do anything about it. To qualify as true panic-inspiring net-abuse, an act must interfere with the net-use of a large number of people. Examples of this: newsgroup flooding, widespread or organized forgery campaigns, widespread or organized account hacking, widespread or organized censorship attempts, etcetera.
How should I deal with net-abuse in the newsgroup? |
Be indifferent to net-abuse:
Ignore all net-abuse
Killfile or block sender all net-abuse
Ignore a net-abuse thread
Net-abuse messages posted by people using a cotse, or hotmail, or yahoo address may indicate the person is posting in an anonymous manner, possibly behind a remailer. This may indicate that the person has something to hide. Be careful not to encourage people who are shielding their identity and privacy in this manner.
Dealing with trolls |
"to everyone in this group: please read this link very carefully http://www.teamtechnology.co.uk/troll.htm”
Dealing with trolls
When dealing with suspected trolls, you can employ various strategies. First, remember that just because you suspect that someone is a troll, it doesn't mean they are a troll. In addition, just because you suspect someone is genuine, it doesn't mean they are genuine. In view of this, the best tactics are:
Ignore postings that you suspect may be from trolls.
“Don’t invest any of your self emotionally until you have verified beyond all doubt that the person you are dealing with is genuine" - Jan
What is spam? |
Some people think crossposting is "bad". In and of itself, it's good behavior - it allows you to reach more groups with less impact on the net, especially if you set the "Followup-to:" header to one group. It is "bad" when it's done to attack newsgroups or provoke flame wars (like crossposting how to cook a cat between alt.tasteless and rec.pet.cats), but this is beyond the scope of this FAQ.
Some consider the term "spam" to mean excessive postings of EMP (Excessive Multi-Posting) or ECP (Excessive Cross-Posting) variety. That is, "spam", is a generic term for several different things. The term was originally supposed to mean EMPs only, but most people use "spam" to mean "any excessive posting."
A spam, EMP, or ECP therefore refers to a posting that has been posted to many places. There is a consensus that defines when posting is abuse, and is subject to advisory cancellation.
A formula has been invented by Seth Breidbart, which attempts to quantify the degree of "badness" of a spam (whether EMP or ECP) as a single number. The Breidbart Index (BI) is defined as the sum of the square roots of n (n is the number of newsgroups each copy was posted to). It's a complex calculation that can be found at http://www.faqs.org/faqs/usenet/spam-faq/
What is the general view of spam on the newsgroup? |
Unsolicited or commercial advertising on newsgroups is controlled at the server using algorithms based on the Breidbart Index. This newsgroup has that software on the server; therefore, you will never see a message that meets the strict BI definition of spam.
Advertising posted in low volumes will not reach the BI threshold, and will appear on the newsgroup. It is not spam. It is a violation of Usenet/ISP Acceptable Use Polices and is prosecuted as such. The basis for that policy is alt.support.cancer is a noncommercial newsgroup. Most AUPs prohibit commercial messages on a noncommercial newsgroup.
Here is a quote from a newsgroup user concerning spam:
"Never buy anything from someone who sends you unsolicited advertising. There are plenty of social contexts in which selling is simply inappropriate, and *discussion* or *support* groups are such places. Would you try to sell to people at a wedding? At a funeral? At a party, you were invited to? To the cop who pulled you over for speeding?" -- Eric Bohlman
Donald E. Ekman "Crossly the Glad-Eyed Bear” |
The first post/poster (and creator of the) newsgroup 1992-04-03 10:33:17 PST
http://groups.google.com/groups?dq=&hl=en&lr=&ie=UTF-8&oe=UTF-8&selm=gtjjnwh.ekman%40netcom.com
Donald had Prostate Cancer and posted to other newsgroups from (the book of) Sonnets from the Portuguese (Elizabeth Barrett Browning)
Here's his control message to alt.config to create the newsgroup.
http://groups.google.com/groups?hl=en&lr=&ie=UTF-8&oe=UTF-8&selm=8bbjsjnekman%40netcom.com
A little history, Donald posted several times to sci.med about his cancer but received no replies. Then he tried alt.support about the subject of creating a specific cancer newsgroup.
http://groups.google.com/groups?selm=jw%2Bj%3Dn%23ekman%40netcom.com&oe=UTF-8&output=gplain
Here's all the posts to alt.support.cancer between April 1 - 30, 1992
http://groups.google.com/groups?dq=&num=25&hl=en&lr=&ie=UTF-8&oe=UTF-8&group=alt.support.cancer&scoring=d&as_drrb=b&as_mind=1&as_minm=4&as_miny=1992&as_maxd=30&as_maxm=4&as_maxy=1992&start=25
I suspect but not sure, that out of this newsgroup, the other cancer newsgroups were formed.
Curly++ |
http://groups.google.com/groups?hl=en&lr=&ie=UTF-8&oe=UTF-8&selm=slrn9cfd55.69s.ocurtin%40moth.loc
Oison "Curly++" Curtin was instrumental in the development of the initial alt.support.cancer FAQ.
This was Curly++'s signature:
Oisin "Curly++" Curtin http://pages.infinit.net/curlypp/
"Life is a non-renewable resource, use it well." ocurtin@usa.net
oligo 3, szr 6/1/2k, biopsy 6/19/2k, rad 30 8/24/2k-10/11/2k, stable!
Steph |
Steph is a Radiation Oncologist.
Steph is a favorite among many of us. He has provided sage and honest answers to some of cancer's most difficult questions. He really has done a wonderful job of supporting our group of cancer patients and caregivers.
Steph holds the honor of writing the most quoted post in the alt.support.cancer newsgroup. The subject is "Questions to Ask"
http://groups.google.com/groups?hl=en&lr=&ie=UTF-8&selm=KyW97.994%243x.3689%40news.bc.tac.net
Paul Roda |
But I don't trumpet my treatments beyond all reasonable expectations, either. I always encourage my patients to pray and I've often said (when thanked for curing someone) that I didn't give the cure, just the drugs.
Mike R (Mike Radcliffe) |
Whatever I say in this NG, I stand by. When I can't say what I honestly feel I will give up nursing and go into politics. Most advice I give is about having choices and keeping control of your life. Use me as you please, my wife does...I wish
MIKE - R.N., Palliative /hospice care (Western Australia)
Robin |
For her assistance with brain cancers and especially childhood cancers.
Robin...mom to Hannah, aka "wild thing".pilocytic/anaplastic astrocytoma...brain stem/spinal cord// wife to E....the other love of my life.
J |
For being such a good researcher and supporter for the group.
For being the spark that ignited the FAQ, project. It would not have happened without J.
Jeff Davis |
For providing, the Recommended Links starter-set.
Jerry |
For the monumental task of making the FAQ/Charter, what it has now become, comprehensive.
(Favorite quote) "If you haven't all the things you want, be grateful for the things you don't have that you wouldn't want." - Anonymous
Notable newsgroup quotes |
"Short term memory is something most people don't even think of as memory. It's opening a drawer and still knowing what you wanted out of it."
"Have you read Stephen Jay Gould's article about the survival curve? With these facts, a good mathematician might figure out where you are on that curve. I don't need math to know you're one H of a survivor." - Curly++
"Hey! What are you doing asking a bunch of usenet geeks to diagnose your mum? Don't you know you can't trust us with your womenfolk? We're all per-verticals and charlotte-anne's out here, you know. Just look at me here givin' you advice, and me a half a wit. Well it's worth what ya paid for it anyways. :-) And the ng's always open for a chat." - Curly++
"I often tie my foot to my tongue, but you'll notice it's the other way round. I don't notice my foot in my mouth until the laces start digging into my tongue. Lot's of sensing nerves in that organ. Don't try chewing on your socks, it doesn't help." - Curly++
"They say that everyone dies eventually, but I have my fingers crossed. Yes, many people do die from cancer, but the harder you fight, the longer you can enjoy life." - Curly++
"Yes, you are right. That CaCl stuff is definitely something to worry about. I hear some Britts running fish&chip stands used it on their wares, which they sold on the racing page. Now you can't read a thing, the paper's gone all brown! That coral calcium ruins everything!" - Curly++
"I'm one of those painfully shy people who sit in the corner. I lay in the hospital thinking, I've spent years trying to learn how *not* to step on my tounge. If I die tommorrow, what will I have gained? What will I have given?" I came so close, I think I did die 384 days ago. That was when my life of waiting ended. This is my life of doing. In my new life, I don't hesitate to speak my mind. I'm not too shy to help my neighbor. I don't shut up just because someone interrupted. I try to share what I know and what I feel. Sometimes I'm wrong, I learn from that. I fix it if I can. If I've done the best I can, I don't stop for regret. This second life is much better than the first.
Take your pick..." - Curly++
"Seriously, the most important thing about the lively discussions that we all have here on this ng is that it is a =lively= discussion. No one here is just laying down waiting to die. We are all fighting from day to day the hand that has been dealt us, struggling to make sense of our place in the world with this mess that's been dropped in our laps. I for one, think we are doing pretty damned good at it...." - CAT
"If it helps, I'm posting in my underwear and wearing a very silly hat!" - CAT
"No one has ever changed their mind in the history of Usenet." - CAT
"Finally, don't be shy about posting rants and raves here. In many ways, the rants and the raves are the point of this ng..." - Lowkey the lowly Labrat
" You know, there is this episode, I believe it is in James Clavell's Taipan, where one of the characters goes out in the woods to vent his frustration at a tree; a 'shrieking tree' it is called. Go out, scream at it, curse it, kick it if you need to. But never ever act out your frustration on another person. Yes, those medical professinials are an obvious target of your frustratration, I know that from my own experience. But they are people too, and you should never ever act out your frustration on other people. Pick a shrieking tree instead if you really need to vent your frustration" - Jan
To the "Quacks": "If you were intelligent, or at least had an IQ in the mid-teens, what would you say next? - Steph
"Why let facts get in the way?" - Steph
"We are all mortal and I guess that scares the bajesus out of some? I do understand pain, real to your core pain and I wouldnt wish it on my worst enemy but again it is all just part of being a human that every last person risk." - Jo -Blo
"This group is as good a place as any to discuss painful and hilarious subjects (we get those kind of posts all the time - usually from peddlers of alternative meds etc.) This group has covered people at all stages of cancer over the year or so I have been involved and I don't think anyone has been overly upset by anyone elses perspective. Cancer sufferers are people first and most would be the first to say if you lose your sense of humour you may as well curl up your toes and climb in the box now; what else will keep you going?" - Mike Radcliffe
"Your Mother is always with you" is a wonderful post by J. http://groups.google.com/groups?selm=3EBB0750.29D9D5A1%40execulink.com
"saw this hanging on the wall in the lab at the hospital and thought it said alot. haven't been here long enough to know if it has been posted before but i wanted to share it! :)" - Jody
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What Cancer Cannot Do: |
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Cancer is so limited... |
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It cannot cripple Love |
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It cannot shatter Hope |
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It cannot corrode Faith |
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It cannot destroy Peace |
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It cannot kill Friendship |
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It cannot suppress Memories |
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It cannot silence Courage |
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It cannot invade the Soul |
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It cannot steal Eternal Life |
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It cannot conquer the Spirit |
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Cancer is so limited! |
"What I really like is that I discovered this NG. BECAUSE, I really was considering Alternative medicine. I had friends and family pushing these remedies on me and I told them that the information that I got from this newsgroup showed me that convensional medicine was the best way to go. I could have spent all my life savings on cures that have NO track record or proof that they work. Right now the plan is to continue the chemo for about 6 months, 3 weeks on, 1 week off, and then a catscan every few months. The bad thing about this whole thing is that my own personal Doctor has prostate cancer himself that has spread. When I saw him today, he looked bad. He told me that he is suffering through the side-effects of his radiation treatments but he is keeping a positive outlook and that my catscan report made his day. I'm glad that this NG exists. Thank you for listening to me and giving important information to those who seek it." - Will
(In response to a loony) "I suffer from cancer, not stupidity!" - Jerry
Some humorous classics about quackery |
Lowkey and the parasite theory:
Cat in the Hat's PHP Gold (tm) and PHS- GOLD (tm)
http://groups.google.com/groups?q=+%22Hippo+Phlegm%22+author:Cat+author:in+author:the+author:Hat&hl=en&lr=&ie=UTF-8&oe=UTF-8&scoring=d&selm=E00%259.2756%246P2.320444%40newsread1.prod.itd.earthlink.net&rnum=3 "tongue firmly planted in my little furry cheek"
http://groups.google.com/groups?q=+%22Hippo+Phlegm%22+author:Cat+author:in+author:the+author:Hat&start=10&hl=en&lr=&ie=UTF-8&oe=UTF-8&scoring=d&selm=yNkX9.5203%24bL4.509234%40newsread2.prod.itd.earthlink.net&rnum=13 "Not available in stores"
What is hope?
"I used to get hung up on statistics and numbers, but not anymore. Have lots of hope. .... Do you know what hope is ? ... It's magic and it's free... It's not in a prescription ... It's not in an IV ... ... It punctuates out laughter ... It sparkles in our tears ..... It simmers under sorrow ... And dissipates our fears ... ... Do you know what hope is ? ... It's reaching past today ... It's dreaming of tomorrow ... ... It's trying a new way ....... It's pushing past impossible ... It's pounding on the door ... It's questioning the answers ... It's always seeking more ..It's rumors of a breakthrough ... It's whispers of a cure .. A roller coaster ride ... Of remedies unsure ... Do you know what hope is ? .. It's candy for the soul .. It's perfume for the spirit ... To share it makes you whole .... see colon_cancer_support@yahoogroups.com message # 409 for The Importance of Hope Take care and God bless. Cliff . . " (Clifford Thomas)
The final hours
Hi CAT, Jim stayed at home with us around him. When the legs go, it is getting close. He then got sort of mottle blue tinge in the legs although in bed. He was in and out of semi coma, then had one outstanding day 3 days before he passed, where he was bright, alert, got his voice back and was very communicative. Then three days later he passed. It is not scary CAT. It is almost peaceful. The breathing changed about an hour before he crossed
and then again about 10 minutes before. I had a feeling that he was in two world for several weeks, like he visited God and would come back. It is hard to explain, but there were times that his body functioned and his spirit seemed absent. I saw a look on his face
that assured me that there was a presence there. The boys and I then bathed Jim and dressed him in his own clothes after I removed catheter, tubes, patches etc.
It is something I am so glad we did.
One other thing, if you have a pet, let them sniff. They need closure too.
Jims dog accepted the change.
God Bless you and Betsy CAT, we all care and wish you peace and love. We are all here as you walk in these shadows, remember you are not alone He loves Betsy even more than you do. - patti-anne-lea
"... her mom never left her side (stayed at the hospice room). her mom and i were there at the end. it was a very holy moment..the peace of God was just flooding the place." - mark-h
"the home health folks and the docs will know when its time, if you don't already. keep in communication with them about that." - mark-h
How can I help in the fight against cancer? |
Anyone, anywhere with access to a personal computer and the Internet, could help find a cure for cancer by giving 'screensaver time' from their computers to the world's largest ever computational project, which will screen 3.5 billion molecules for cancer-fighting potential.
The project is being carried out by Oxford University's Centre for Computational Drug Discovery - a unique 'virtual centre' funded by the National Foundation for Cancer Research (NFCR), which is based in the Department of Chemistry and linked with international research groups via the worldwide web - in collaboration with United Devices, a US-based distributed computing technology company, and Intel, who are sponsoring the project.
http://www.chem.ox.ac.uk/curecancer.html
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