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Resources


The following excerpt is taken from Appendix A of Non-Hodgkin's Lymphomas: Making Sense of Diagnosis, Treatment, and Options by Lorraine Johnston, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call 1-800-998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

The lists that follow reiterate the various groups, publications, services, and Web tools discussed throughout this book, and include additional resources that also may serve your needs. All entries in each category are listed in alphabetical order, not by importance.


NHL resources

This list includes resources you're likely to use most often, those that are the richest sources of NHL-specific information.

NHL organizations

Cure for Lymphoma
215 Lexington Avenue
New York, NY 10016
(212) 213-9595
http://www.cfl.org
Offers support and information, and funds research to fight lymphoma.

The Leukemia & Lymphoma Society Inc.
1311 Mamaroneck Ave.
White Plains, NY 10605
Phone: (914) 949-5213
Fax: (914) 949-6691
http://www.leukemia.org/hm_lls
Offers assistance to lymphoma and leukemia survivors.

Lymphoma Research Foundation of America
2318 Prosser Avenue
Los Angeles, CA 90064
(310) 470-4912
http://www.lymphoma.org/pages/
Offers support and information, and funds research to fight lymphoma.

National Lymphedema Network
1611 Telegraph Ave, Suite 1111
Oakland, CA 94612-2138
Phone: (510) 208-3200
Fax: (510) 208-3110
Info Line: (800) 541-3259
Email: nln@lymphnet.org
http://www.lymphnet.org
Provides information on swollen limbs, which may occur soon or many years after treatment.

NHL Internet support groups

A list of NHL-related Internet support groups follows. Because the Internet is a dynamic resource, this list may not be comprehensive. The number of subscribers given was approximate at the time of writing and will vary over time. The Association of Cancer Online Resources (ACOR) has pointers to all of the hematologic cancer email discussion groups. ACOR offers a handy automatic subscription feature for these and other discussion mailing lists, at http://www.acor.org.

  • NHL. Run by Robert Scott Pallack, offering medical discussion and emotional support for all non-Hodgkin's lymphoma survivors. NHL has about three hundred subscribers.
  • NHL-LOW. Discussion of medical treatment for those with low-grade NHL. About one hundred seventy subscribers.
  • HEM-ONC. Run by GrannyBarb Lackritz, offering medical discussion and emotional support for the hematologic malignancies, including NHL. Several oncologists are subscribed to this list. About eight hundred subscribers.
  • BMT-TALK. Medical discussion and emotional support for those who will be having or who have had bone marrow transplantation for any cancer. Several oncologists are subscribed to this list. About five hundred subscribers.
  • PED-ALL. Medical discussion for pediatric acute lymphocytic leukemia, which resembles some NHLs. This list was formed in early 1998.
  • CLL. Medical discussion and emotional support for chronic lymphocytic leukemia, which can convert into one form of NHL, called small-cell lymphocytic leukemia (SLL). About three hundred subscribers.
  • SICKKIDS. A discussion group just for children, but supervised by adults. On the Web at http://tile.net/listserv/sickkids.html.
  • YAP. A discussion group for young adults age 18-25 dealing with their own illness or that of a loved one. This list was formed in late 1998.

NHL reading and reference material

The Cancer Dictionary, by Robert Altman and Michael Sarg, is a good medical dictionary specifically for cancer survivors.

The Non-Hodgkin's Lymphomas, 2nd Edition, edited by Ian Magrath. New York: Arnold and Oxford University Press, 1997. As of this writing, this is the most current and comprehensive textbook available that is specifically devoted to NHL. You might be able to find a copy in your doctor's office, a hospital library, or a university library. It can be purchased through any bookstore, including Web-based bookstores, by ordering it from the publisher.

The National Library of Medicine's MEDLINE database http://www4.ncbi.nlm.nih.gov/PubMed/
The best place to find the published results of studies on cancer treatment and care. It houses more than nine million research papers. If you need help with searching, you can call the National Library of Medicine at 1-800-272-4787 or (301) 496-6308.

The U.S. National Cancer Institute (NCI)
Bethesda, MD 20892
1-800-4-CANCER
http://cancernet.nci.nih.gov
A division of the 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 tracts, statements, booklets, and books about cancer treatment and care. Many of the statements about cancer come in two versions, patient's and physician's. You might prefer to start with the patient's version, but it's likely that, as you learn more, the physician's statements will provide better, more detailed answers to your questions. The physicians' information is often part of PDQ, Physicians' Data Query.

Document retrieval services can fax or mail you the full text of any published research paper. On the Internet, the Medline service providers HealthGate, Medscape, Helix, PhyNet, PDRnet.Com, SilverPlatter, Ovid On Call, Infotrieve, PaperChase, and others offer full-text services for a fee. Do a Web search for any of these names.

Companies that will do medical information searches for you for a fee:

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

Can Help
(360) 437-2291

Schine On-Line Services
1-800-FIND-CURE

General cancer resources

The following resources, while not specific for NHL, are varied and numerous, and are likely to offer you aid and services suited to your needs.

Cancer organizations

Agency for Health Care Policy and Research
P.O. Box 8547
Silver Spring, MD 20907-8547
1-800-358-9295

American Cancer Society (ACS) National Office
1599 Clifton Road NE
Atlanta, GA 30329-4251
1-800-ACS-2345
http://www.cancer.org
The American Cancer Society has many national and local programs to help cancer survivors with problems such as travel, lodging, and emotional support. ACS publishes an excellent book, Informed Decisions - The Complete Book of Cancer Diagnosis, Treatment and Recovery. This hefty book is a comprehensive guide to care and treatment for all aspects of all cancers. They also offer a 24-hour support line for both English- and Spanish-speaking cancer survivors. Check your local phone directory for the office nearest you or contact:

American Red Cross
430 17th Street NW
Washington, DC 20006
(202) 737-8300

The American Self-Help Clearinghouse
25 Pocono Road
Denville, NJ 07834
(973) 625-7101
Publishes a national directory of self-help groups.

Blood & Marrow Transplant Information Network
(formerly BMT Newsletter)
2900 Skokie Valley Road, Suite B Highland Park, IL 60035
(847) 433-3313 or toll-free (888) 597-7674
Fax: (847) 433-4599
Email: help@bmtnews.org
www.bmtnews.org
Publishes Blood & Marrow Transplant Newsletter, for bone marrow, peripheral stem cell, and cord blood transplant patients, and books on bone marrow and stem cell transplantation. Also available are the Transplant Center Database of more than 250 transplant programs in the US and Canada, a resource directory, an attorney referral service for those having difficulty persuading their insurer to pay for treatment, the Patient-to-Survivor Link Service, and a comprehensive web site.

Burger King Cancer Caring Center
4117 Liberty Avenue
Pittsburgh, PA 15224
(412) 622-1212
Provides counseling and a hotline service for those with cancer.

Cancer Care Counseling (National Cancer Care Foundation)
1180 Avenue of the Americas
New York, NY 10036
(212) 382-2078 or 1-800-813-HOPE
Provides information and support for those affected by cancer.

Cancer Family Care
7162 Reading Road, Suite 1050
Cincinnati, OH 45237
(513) 731-3346
Offers counseling to families affected by cancer.

Cancer Research Institute
681 Fifth Avenue
New York, NY 10022
1-800-99-CANCER
Offers services such as PDQ searches for clinical trials and free literature on cancer.

Cancervive
6500 Wilshire Boulevard, Suite 500
Los Angeles, CA 90048
(213) 655-3758
Offers many services to cancer survivors.

Center for Medical Consumers
237 Thompson Street
New York, NY 10012
(212) 674-7105
Provides information referrals to other organizations and maintains a medical consumer's library.

Consumer Health Information Research Institute
300 East Pink Hill Road
Independence, MO 64057
(816) 228-4595
http://www.reutershealth.com
Provides an integrity index and a credibility of publication index, including one that rates cancer books.

Hereditary Cancer Institute
2500 California Plaza
Omaha, NE 68178
(402) 280-1746 or (402) 280-2942
Evaluates families for risk and furnishes educational material to families with hereditary cancers.

Make Today Count
1235 East Cherokee
Springfield, MO 65804
1-800-432-2273
Offers peer support via local chapters for those with life-threatening illnesses.

Mautamar Project for Lesbians with Cancer
1707 L Street NW, Suite 1060
Washington, DC 20036
(202) 332-5536
Offers support to lesbians and their families.

National AIDS Hotline
(no street address)
1-800-342-2437
Furnishes assistance to those with AIDS, including AIDS-related NHL.

National Coalition for Cancer Research
426 C Street NE
Washington, DC 20002
(202) 544-1880
An activist group that monitors government spending on cancer.

National Coalition for Cancer Survivorship
1010 Wayne Avenue, 5th Floor
Silver Spring, MD 20910
(301) 650-8868
Formed by cancer survivors to offer support and to effect change in progress against cancer through legislative efforts. They have published the Cancer Survivor's Almanac, a good reference for any cancer survivor.

National Family Caregivers Association
9621 East Bexhill Drive
Kensington, MD 20895
1-800-896-3650
Provides a variety of services to caregivers.

People Living Through Cancer, Inc.
323 Eighth Street, SW
Albuquerque, NM 87102
(505) 242-3263
Email: cancerhope@aol.com
Offers many services to cancer survivors.

PWA Coalition Hotline
50 West 17th Street, 8th Floor
New York, NY 10011
1-800-828-3280
Furnishes assistance to those with AIDS, including AIDS-related NHL. A really nice group of people.

R.A. Bloch Cancer Foundation
4410 Main Street
Kansas City, MO 64111
(816) 932-8453
Offers a variety of services to cancer patients and survivors, such as telephone-based second medical opinions and one-on-one phone contact between cancer survivors.

Well Spouse Foundation
610 Lexington Avenue, Suite 814
New York, NY 10022
1-800-838-0879
Offers support to those whose spouses are chronically ill.

Wellness Community
2716 Ocean Park Boulevard, Suite 1040
Santa Monica, CA 90405
(310) 314-2555
Has branches throughout the U.S. Check your local phone book for the chapter nearest you.

Children's cancer resources

Included below are organizations and reading material specifically for children.

Organizations that help children with cancer

Association for the Care of Children's Health
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814
1-800-808-ACCH
(609) 224-1742
Provides information for making informed decisions about care.

Candlelighters Foundation
7910 Woodmont Avenue, Suite 460
Bethesda, MD 20814
1-800-366-2223
Provides information and support for parents of children with cancer.

Chai Lifeline/Camp Simcha
48 West 25th Street
New York, NY 10010
1-800-343-2527
Provides a free kosher camp for children of any religion with cancer, including transportation from anywhere in the world.

Children's Hospice International
1850 M Street NW, Suite 900
Washington, DC 20036
1-800-242-4453
Provides many types of assistance to children with cancer and their families.

Federation for Children with Special Needs
95 Berkeley Street, Suite 104
Boston, MA 02116
(617) 482-2915
Provides support for parents regarding educational and health care rights.

Hole in the Wall Gang Camp
565 Ashford Center Road
Ashford, CT 06278
(860) 429-3444
http://www.holeinthewallgang.org/
A free ten-day summer camp for children ages seven through fifteen with cancer.

Make-A-Wish Foundation of America
100 W. Clarendon, Suite 2200
Phoenix, AZ 85013
(602) 279-9474
http://www.wish.org/
Offers sick children ages two through eighteen an opportunity for an adventure.

Sibling Information Network
University of Connecticut
249 Glenbrook Road, Box U64
Storrs, CT 06269
(860) 486-4985
Publishes a newsletter of interest to those who have children with developmental disabilities.

Special Love, Inc. (Camp Fantastic)
117 Youth Development Court
Winchester, VA 22602
(540) 667-3774
Offers recreational programs for children with cancer and their families.

Starlight Foundation International
12424 Wilshire Boulevard, Suite 1050
Los Angeles, CA 90025
1-800-274-7827
Provides entertainment for sick children between ages four and eighteen.

Sunshine Foundation
P.O. Box 255
Loughman, FL 33858
1-800-767-1976
Grants wishes to sick children.

Sunshine Kids
2902 Ferndale Place
Houston, TX 77098
1-800-594-5756
Offers sports, cultural events, and group activities for children being treated for cancer.

Vital Options
(818) 508-5657
A group dedicated to providing support to young adults with cancer and other serious illnesses.

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

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.

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.

Dunn, Steve. CancerGuide. Read this online at http://www.cancerguide.org/sdunn_story.html.

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. The new 17th edition will be published in early 1999.

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.

Cancer magazines

Cancer Communication
Published by PAACT
Patient Advocates for Advanced Cancer Treatments
1143 Parmelee Northwest
Grand Rapids, MI 49504
(616) 453-1477

Coping
P.O. Box 682268
Franklin, TN 37068
(615) 790-2400

Living Through Cancer
323 Eighth Street, SW
Albuquerque, NM 87102
(505) 242-3263

Medical resources

Medical information targeted to special topics is available through the resources listed in these categories.

Bone marrow transplantation

This expensive and lengthy treatment procedure is addressed by the publications and support groups listed below.

Reading material for transplantation

Bone Marrow Transplantation and Peripheral Blood Stem Cell Transplantation. The National Cancer Institute offers this treatise on marrow or stem cell transplantation. On the Web at http://cancernet.nci.nih.gov or call 1-800-4-CANCER.

Martin, Paul, M.D. (Member, Fred Hutchinson Cancer Research Center, Professor of Medicine, University of Washington.) A Short Primer on HLA and Bone Marrow Transplantation. On the Web at http://www.giftoflife.com/articles.htm

Stewart, Susan. Autologous Stem Cell Transplants: A Handbook for Patients. Highland Park, IL: Blood & Marrow Transplant Information Network, 1999

Stewart, Susan. Bone Marrow Transplants: A Book of Basics for Patients. Highland Park, Illinois: Blood & Marrow Ttransplant information Network, 1992.

Transplant Center Access Directory. National Marrow Donor Program. Call 1-800-526-7809; or on the Web at http://www.marrow.org and http:www.bmtinfo.org.

Reading material for finding a donor

Tissue Typing for Beginners: http://www.umds.ac.uk/tissue/what1.html

HLA Gene and Haplotype Frequencies in the North American Population: The National Marrow Donor Program Donor Registry: http://www.swmed.edu/home_pages/ASHI/prepr/Motomi.htm

Haplotype searching: http://www.swmed.edu/home_pages/ASHI/prepr/ mori_abd.htm

Histocompatibility: Interpretation and Correlation of HLA Typing for Bone Marrow Transplantation: http://www.bmtinfo.org/bmt/topics/htm/type_b.htm

HLA Class I and II Sequence Alignments: http://www.anthonynolan.com/ HIG/data.html

Transplant advocacy and support groups

Blood and Marrow Transplant Newsletter
1985 Spruce Avenue
Highland Park, IL 60035
(847) 831-1913
Offers support, publications, and guidance to legal aid for those getting transplants.

Bone Marrow Transplant Family Support Network
P.O. Box 845
Avon, CT 06001
1-800-826-9376
Offers counseling and support for those going through a transplant.

Living Bank
4545 Post Oak Place, Suite 315
Houston, TX 77027
1-800-528-2971
Motivates and facilitates organ donor commitment.

National Bone Marrow Transplant Link
29209 Northwestern Highway, No. 624
Southfield, MI 48034
1-800-LINK-BMT
Offers peer support and a variety of services for those being transplanted.

National Marrow Donor Program
3433 Broadway Street, NE, Suite 400
Minneapolis, MN 55413
1-800-MARROW-2
Coordinates national and international testing and matching of marrow donors and recipients.

Organ Transplant Fund
1027 South Yates
Memphis, TN 38119
1-800-489-3863
Provides a variety of services, including financial services, to those receiving transplants.

Verifying doctor and hospital credentials

The American College of Surgeons
633 North Saint Clair Street
Chicago, IL 60611
(312) 202-5000
Can verify whether your surgeon is board certified in a surgical specialty.

American Medical Association Directory of Physicians in the U.S. , published by the American Medical Association, provides a means to verify your doctor's credentials. The AMA's Physician Select web site (http://www.ama-assn.org/aps/amahg.html) is an excellent means to check your doctor's education and board certification.

The American Society of Pediatric Hematology/Oncology (ASPH/O) established standard requirements for programs treating children with cancer and blood disorders.

Center for Medical Consumers
237 Thompson Street
New York, NY 10012
(212) 674-7105
Provides information referrals to other organizations and maintains a medical consumer's library.

College of American Pathologists
325 Waukegan Road
Northfield, IL 60093-2750

1-800-323-4040

The Consumer Health Information Research Institute
(816) 228-4595
http://www.reutershealth.com
Provides an integrity index and a credibility of publication index.

The Joint Commission on Accreditation of Health Care Organizations (JCAHO)
1 Renaissance Boulevard
Oakbrook Terrace IL 60181
(630) 792-5800

National Council Against Health Fraud
P.O. Box 1276
Loma Linda, CA 92354
(909) 824-4690

The Official ABMS Directory of Board Certified Medical Specialists 1998. 30th Edition. 1997 Marquis Who's Who. This is a directory of board certified physicians who have chosen to specialize in a particular area of medicine.

QuackWatch (http://www.quackwatch.com) gives the medical scientist's evaluation of those unusual remedies you've been hearing about.

U.S. News and World Report's annual "Best Hospitals" edition. Write to 2400 N Street N.W. Washington, DC 20037-1196, or call (202) 955-2000.

Drug and dosage information

The Physician's Desk Reference (PDR), a compendium of information about drugs, is now reprinted in versions that are easier for the general public to understand, but you might appreciate the learning experience gained from reading the original PDR. In addition to PDR, many other drug encyclopedias are available as well for the general public.

U.S. Food and Drug Administration (FDA)
5600 Fishers Lane
Rockville, MD 20857
(301) 827-4420
1-888-332-4543
1-800-532-4440
http://www.fda.gov/
You can report adverse effects of drugs to the FDA, too, or use their MedWatch web site: http://www.fda.gov/medwatch/how.htm.

Clinical Pharmacology Online
http://www.cponline.gsm.com

DrugInfoNet
http://www.druginfonet.com/

Glaxo's DoseCalc
http://www.meds.com/DChome.html

HealthTouch
http://www.healthtouch.com/level1/p_dri.htm

PharmInfoNet
http://pharminfo.com

RxList
http://www.rxlist.com

Calculating body surface area

Cornell University
http://www-users.med.cornell.edu/~spon/picu/bsacalc.htm

Martindale's HS Guide
http://www-sci.lib.uci.edu/HSG/Pharmacy.html

Medical College of Wisconsin
http://www.intmed.mcw.edu/clincalc/body.html

Tests and procedures


These resources can help you learn how tests are done, and what the results mean.

Information on how tests are done

Andrews, Maraca, and Michael Shaw. Everything You Need to Know About Medical Tests. Springhouse, 1996. An excellent, comprehensive (691 pages) reference written for the patient in a readable and respectful style.

Barry, L., ed., with Peter Zaret, and Lee D. Jatlow. The Patient's Guide to Medical Tests. Houghton Mifflin Co. (Trade), 1997.

The Biology Project. University of Arizona: http://www.biology.arizona.edu.

Brodin, Michael B. The Encyclopedia of Medical Tests. Pocket Books, 1997. A 1982 book with the same title written by Pinckney and Pinckney should be passed over in favor of this newer book. 592 pages.

Department of Pathology, University of Washington, Seattle: http://www.pathology.washington.edu.

The Family Internet site at http://familyinternet.com.

HealthGate at http://www.healthgate.com.

Keene, Nancy. Childhood Leukemia. Sebastopol, California: O'Reilly and Associates, 1997. An excellent reference for those who have a child with leukemia or lymphoma, especially for the form of NHL related to and treated like childhood acute lymphocytic leukemia.

Keene, Nancy. Your Child in the Hospital. Sebastopol, California: O'Reilly and Associates, 1997. Covers all aspects of the child's experiences with hospitalization, from tests and treatment to emotional issues such as sibling reactions.

Magrath, Ian, editor. The Non-Hodgkin's Lymphomas, 2nd edition. London: Arnold and Oxford University Press, 1997.

Mid-South Imaging & Therapeutics, P.A. at http://www.msit.com.

Mosby Consumer Health Series at http://www.mosbych1.com/mhc/top/003833.htm.

Pagana, Kathleen, and Timothy Pagana, editors. Mosby's Diagnostic and Laboratory Test Reference. Mosby, 1992.

Shtasel, Philip. Medical Tests and Diagnostic Procedures - A Patient's Guide to Just What the Doctor Ordered. Harper and Row, 1990.

Stauffer, Joseph, and Joseph C. Segen. The Patient's Guide to Medical Tests: Everything You Need to Know About the Tests Your Doctor Prescribes, 4th edition. Facts on File, 1997.

ThriveOnline: http://www.thriveonline.com.

University of California at Los Angeles: http://anima.crump.ucla.edu.

Normal values of tests

The Lupus Lab Tests web site (http://www.mtio.com/mclfa/lfalt1.htm) has tests commonly done for lupus, but many of these are also done for hematologic cancers such as NHL.

The University of California Division of General Internal Medicine. Enter the test name and click Search: http://www.oncolink.upenn.edu/.

The University of Michigan Pathology Laboratories Handbook. Enter the test name and click Search:http://po.path.med.umich.edu/handbook/.

Clinical trials and investigational new substances

The Food and Drug Administration (http:///www.fda.gov) contains regulations for investigational new drugs and for importing foreign drugs for single-patient use. Call 1-800-532-4440.

The book Intuitive Biostatistics, by Harvey Motulsky, can help you understand published results of clinical trials, and can help you assess trial design if you're planning to enroll in a trial.

MediStudy.com is a source of clinical trial information for Canada, including a searchable database of trials recruiting patients:
www.medistudy.com.

The National Cancer Institute Clinical Trials web site (http://cancernet.nci.nih.gov/prot/protsrch.shtml) is the most comprehensive way to locate trials of new substances and treatments.

QuackWatch (http://www.quackwatch.com) gives the medical scientist's evaluation of those unusual remedies you've been hearing about.

Steve Dunn's Cancerguide is an excellent resource for learning how to assess clinical trials and how to research your illness. Email dunns@h2net.net or on the Web at http://www.cancerguide.org/sdunn_story.html.

Resources for pain and other side effects

The American Cancer Society has many programs to help cancer survivors with problems such as pain. Call 1-800-ACS-2345 or check your local phone directory for the office nearest you.

American Society of Anesthesiologists
515 Busse Highway
Park Ridge, IL 60068
(847) 825-5586

American Society of Clinical Hypnosis
2200 East Vine Avenue, Suite 291
Des Plaines, IL 60018
(847) 297-3317

National Lymphedema Network
2211 Post Street, Suite 404
San Francisco, CA 94115
1-800-541-3259
Provides information on swollen limbs, which may occur soon or many years after treatment.

End-of-life resources

Resources for increasing comfort and serenity in the last stage of life are included in this category.

Home and hospice care

Community Health Accreditation Program, Inc.
350 Hudson Street
New York, NY 10014
1-800-669-9656
Provides a list of accredited home care organizations.

Gentiva Health Services
3 Huntington Quadrangle 2S
Melville, NY 11747
1-888-GENTIVA or 1-888-436-8482
www.gentiva.com
Offers help with all home health care services.

National Association for Home Care
519 C Street NE
Washington, DC 20002
(202) 547-7424
Represents all home health care agencies in the U.S. They offer publications on selecting home care.

National Hospice Organization
1901 North Moore Street, Suite 901
Arlington, VA 22209
1-800-658-8898
Offers information on the goals of hospice and how to choose a hospice.

Oley Foundation
214 Hun Memorial
Albany Medical Center A-23
Albany, NY 12208
1-800-776-OLEY
Offers help with parenteral or enteral nutrition-that is, feeding by IV or stomach tube.

Visiting Nurse Associations of America
3801 East Florida Avenue, Suite 900
Denver, CO 80210
1-800-426-2547
Provides skilled nurses, aides, and therapists for home care.

Reading material 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.

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.

Legal, financial, employment, and insurance resources

Beyond the physical aspects of cancer lie its effects on our careers and finances. The resources listed below can offer guidance and aid.

Organizations that help with legal and financial issues

The Blood and Marrow Transplant Newsletter
1985 Spruce Avenue
Highland Park, IL 60035
(847) 831-1913
Offers guidance to legal aid for those getting transplants.

The Center for Medical Consumers
237 Thompson Street
New York, NY 10012
(212) 674-7105
Provides information referrals to other organizations and maintains a medical consumer's library.

Consumer Credit Counseling
1-800-388-2227
Can provide help getting expenses under control.

The Federal Trade Commission
(202) 326-3650
Can provide information about the federal Consumer Credit Protection Act, a landmark series of laws passed in 1968 to protect debtors.

Health Care Cost Hotline
1-900-225-2500
Can furnish the median fee and range of fees charged by doctors for various services and procedures. The call is $2.00 to $4.00 per minute.

Health Insurance Association of America (HIAA)
555 13th Street NW
Washington, D.C. 20004
(202) 824-1600
http://www.hiaa.org/index.html Has more than 250 members consisting of insurers and managed care companies. HIAA can supply booklets on disability income, health insurance, long-term care, medical savings accounts, and general insurance information, including a directory of state insurance departments.

Lexis Law Publishing
800-542-0957
This group can send you a copy of any law.

The Medical Information Bureau (MIB)
P.O. Box 105, Essex Station
Boston, MA 02112
(617) 424-3660
Records all entries made by insurance companies about your health, and will send a copy of this information to your physician if you request it. If you find an error in these files, you can contact the bureau for the procedures necessary to correct errors.

The Organ Transplant Fund
1027 South Yates
Memphis, TN 38119
1-800-489-3863
Provides help with fundraising to those receiving transplants.

Magazines for legal and financial issues

Health Pages reports on ranges and norms of doctor's fees. Call (212) 929-6131.

Medical Economics reports on ranges and norms of doctor's fees. Call (201) 945-9058.

Social Security Administration bulletins

The chief resource in this category is the 1997 Social Security Handbook, 13th edition. On the Web at http://www.ssa.gov/OP_Home/ handbook/ssa-hbk.htm. Other, more specific SSA bulletins include:

Social Security: What You Need To Know When You Get Disability Benefits (6/96; Pub. No. 05-10153)

Social Security Disability Programs (5/96; Pub. No. 05-10057)

Social Security: If You Are Blind, How We Can Help (6/96; Pub. No. 05-10052)

A Guide to Social Security and SSI Disability Benefits for People with HIV Infection (6/95; Pub. No. 05-10020)

Disability Based on Drug Addiction or Alcoholism (5/96; Pub. No. 05-10047)

How We Decide If You Are Still Disabled (4/96; Pub. No. 05-10053)

How Social Security Can Help with Vocational Rehabilitation (9/94; Pub. No. 05-10050)

Working While Disabled: How We Can Help (1/96; Pub. No. 05-10095)

Red Book on Work Incentives for People with Disabilities (8/95; Pub. No. 64-030)

Free treatment resources

The National Cancer Institute
Bethesda, MD
1-800-4-CANCER

The Shrine of North America
Shriner's Hospitals
In the United States, call 1-800-237-5055
In Canada, call 1-800-361-7256

The St. Jude Children's Research Hospital
(901) 495-3300

Free travel and lodging for care

See Chapter 21, which consists of many more resources than we can duplicate here.

Air Care Alliance helps cancer patients travel to distant health centers for care. You may call ACA at 1-888-662-6794 tollfree in the U.S. Direct number 757-318-9145, or visit their web site at http://www.angelflightfla.org/aircareall. org/acahome.html.

The American Cancer Society (ACS) sponsors Hope Lodges, which provide free lodging for those who travel to receive cancer care. Check your local phone book, or visit their web site at http://www.cancer.org/frames.html.

The Candlelighters Childhood Cancer Foundation can help you make travel arrangements. In the U.S., call (301) 657-8401 or 1-800-366-CCCF. In Canada, call 1-800-363-1062. Also on the Web at http://www.candlelighters.org.

Corporate Angel Network helps cancer patients travel to distant health centers for care. Call (914) 328-1313, or visit their web site at http://www.corpangelnetwork.org/.

The Leukemia Society of America will reimburse up to $750 per year in travel expenses. Call 1-800-955-4LSA, or visit their web site at http://www.leukemia.org/.

Mercy Medical Airlift helps cancer patients travel to distant health centers for care. Call 1-800-296-1191, or visit http://www.mercymedical.org.

National Association of Hospital Hospitality Houses (NAHHH) can recommend nearby hotels with reduced rates for cancer patients. Call (301) 961-3094, (317) 883-2226, or 1-800-542-9730; or visit http://visit-usa.com/hhh/members.htm.

The National Cancer Institute, Bethesda, Maryland, will in some cases help pay for the travel and lodging expenses of those being treated at the NCI. Call 1-800-4-CANCER.

Ronald McDonald House Coordinator, c/o McDonalds Corporation, provides free lodging for children who are being treated for cancer. Call (630) 623-7048, or visit http://www.mcdonalds.com/a_community/.

The Shriners' Hospitals provide free treatment for children who need orthopedic or burn remediation. In the United States, call 1-800-237-5055. In Canada, call 1-800-361-7256. Also on the Web at http://www.shrinershq.org/index.html.


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