Resources

Stem Cell Transplant:
A Companion Guide for Breast Cancer Patients

Resource Listing and Glossary

Information and Support
Clinical Trials
Infertility
Insurance, Financial Assistance and Fund Raising
Transportation Support
Cancer Information on the Internet
Books
Glossary

Information and Support

Adelphi Breast Cancer Hotline and Support Program
Garden City, NY 11530, 516-877-4320 (In NY: 800-877-8077)
http://www.adelphi.edu/nysbreastcancer
provides information and emotional support

AMC Cancer Information and Counseling Line
1600 Pierce St., Denver, CO 80214, 800-525-3777
http://www.amc.org
provides information and support from professional cancer counselors

American Cancer Society's Breast Cancer Network
1599 Clifton Rd., NE, Atlanta, GA 30329, 800-ACS-2345 (800-227-2345)
http://www.cancer.org/bcn/bcn.html
publishes breast cancer material and offers support program

Autologous Blood and Marrow Transplant Registry (ABMTR)
International Bone Marrow Transplant Registry (IBMTR)
Medical College of Wisconsin, P.O. Box 26509
8701 Watertown Plank Rd., Milwaukee, WI 53226, 414-456-8325

Blood and Marrow Transplant Newsletter
1985 Spruce Ave., Highland Park, IL 60035, 847-831-1913
http://www.bmtnews.org
publications, attorney referrals, peer support

Bone Marrow Transplant Family Support Network
P.O. Box 845, Avon, CT 06001, 800-826-9376
provides emotional support for families

BMT-Talk online "chat" group
To subscribe, send an e-mail message to:
BMT-talk-request @ai.mit.edu Put only the word subscribe in the message.

Cancer Care, Inc.
1180 Ave. of the Americas, 2nd Fl., NY, NY 10036, 800-813-4673
http://www.cancercare.org
provides support services, materials and referrals

Cancer Information Service (CIS) National Institute of Health (NIH)
Bldg. 31, Rm. 10A16 , Bethesda, MD 20892, 800-4-Cancer (800-422-6237)
http://cancernet.nci.nih.gov
provides information, publications in English or Spanish also available through Cancer Fax (Call 301-402-5874 and follow instructions)

The Cancer Wellness Center
215 Revere Dr., Northbrook, IL 60062, 847-509-9595 or 847-509-9494
http://www.cancerwellness.org
offers emotional support to cancer patients and families

Cancer Hope Network
2 North Rd., Suite A, Chester, NJ 07930, 877-467-3638 (877-HOPE-NET)
http://www.cancerhopenetwork.org
offers peer support to cancer patients and family members

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

National Alliance of Breast Cancer Organizations (NABCO)
9 E. 37th Street, 10th Fl., NY, NY 10016, 888-80-NABCO (888-80-2226)
http://www.nabco.org
provides breast cancer information and advocacy

National Bone Marrow Transplant Link, (nbmtLINK)
20411 W. 12 Mile Rd. Suite 108
Southfield, MI 48076
800-LINK-BMT (800-546-5268)
http://www.nbmtlink.org
provides peer support and publications about BMT or stem cell transplant

National Breast Cancer Coalition
1707 L Street NW, Suite 1060, Washington, D.C. 20036, 202-296-7477
http://www.natlbcc.org
action, advocacy and policy group

National Cancer Institute (NCI)(see Cancer Information Service)

National Coalition for Cancer Survivorship (NCCS)
1010 Wayne Ave, 5th Fl., Silver Springs, MD 20910, 301-650-8868
advocates to eliminate the stigma of cancer in insurance, employment, and legal rights

National Self-Help Clearinghouse
25 W. 43rd St., Rm. 620, NY, NY 10036, 212-354-8525
http://www.selfhelpweb.org
refers to regional self-help groups

Oncology Nursing Society
501 Holiday Dr., Pittsburgh, PA 15220, 412-921-7373
http://www.ons.org
publishes directory of BMT centers

Susan G. Komen Breast Cancer Foundation
5005 LBJ Freeway, #250, Dallas, TX 75244, 800-I'M AWARE (800-462-9273)
http://www.breastcancerinfo.com
raises funds in support of research, education and outreach projects

Wellness Community
10921 Reed Hartman Hwy., #215, Cincinnati, OH 45242, 888-793-9355
http://www.brugold.com/wellness.html
provides educational materials on cancer and self-empowerment

Y-ME Breast Cancer Organization
212 W. Van Buren, 5th Fl., Chicago, IL 60607, 800-221-2141 or 800-986-9505 (Spanish)
http://www.y-me.org
provides publications, hotline and support groups

Clinical Trials

Community Clinical Oncology Program (CCOP) 800-4-CANCER
medical centers, selected by the National Cancer Institute, participating in clinical trials

Physician Data Query (PDQ) 800-4-CANCER
http://cancernet.nci.nih.gov/pdq.htm
computerized database on treatments, organizations, doctors involved in cancer care

CenterWatch: Clinical Trials Listing Service
http://www.centerwatch.com/patemail.htm

"What Are Clinical Trials All About?" (booklet) (available in Spanish)
800-4-CANCER

"Taking Part in Clinical Trials, What Cancer Patients Need to Know"(booklet)
800-4-CANCER

"Patient to Patient: Cancer Clinical Trials and You" (video)
800-4-CANCER.

Infertility

American Society of Reproductive Medicine
1209 Montgomery Hwy., Birmingham, AL 35216, 205-978-5000
http://www.asrm.org
offers information and publications

Genetics and Invitro Fertilization Institute
3020 Javier Rd., Fairfax, VA 22301, 800-552-4363
http://www.givf.com
offers information on ovary freezing

Resolve Inc.
1310 Broadway, Somerville, MA 02144, 617-623-0744
http://www.resolve.org
offers education, advocacy and counseling

Insurance, Financial Assistance, and Fund Raising

Association of Community Cancer Centers
11600 Nebel St., # 201, Rockville, MD 20852, 301-984-9496
http://www.assoc-cancer-ctrs.org

Barbara Anne DeBoer Foundation
2069 S. Busse Rd., Mt. Prospect, IL 60056, 800-895-8478
http://www.deboerfoundation.org

Bone Marrow Foundation
981 First Ave., #129, NY, NY 10022, 212-838-3029
http://www.bonemarrow.org

Health Insurance Association of America
555 13th St. NW, #600E, Washington, D.C. 20004, 202-824-1600
http://www.hiaa.org

National Foundation for Transplants (formerly Organ Transplant Fund)
1102 Brookfield, #202, Memphis, TN 38119, 800-489-3863 or 901-684-1697
http://www.transplants.org

National Transplant Assistance Fund
P.O. Box 258, Bryn Mawr, PA 19010, 800-642-8399 or 610-527-5056
http://www.transplantfund.org

My Friends Care BMT Fund (MI residents)
148 S. Main St., #101, Mt. Clemens, MI 48043, 810-783-7390
http://www.myfriendscare.org

Patient Advocacy Coalition
850 E. Harvard Ave. #465, Denver, CO 80210, 303-744-7667
http://www.patientadvocacy.net

Patient Advocate Foundation
780 Pilot House Dr., #100C, Newport News, VA 23606, 800-532-5274 or 757-873-6668
http://www.patientadvocate.org

Transportation Support

Airlifeline
50 Fullerton Ct. #200, Sacramento, CA 95825, 800-446-1231
http://www.airlifeline.org

Corporate Angel Network Inc.
Westchester County Airport, 1 Loop Rd., White Plains, NY 10604, 914-328-1313
http://www.corpangelnetwork.org

National Patient Air Transport Helpline
4620 Haygood Rd., #8, Virginia Beach, VA 23455, 800-296-1217
http://www.mercymedical.org

Cancer Information on the Internet

The Internet is a valuable tool for medical research. It offers a wealth of information, some helpful, some misleading. Evaluate Internet material by asking: "What is the source of this information?" "Is it factual or opinion?" "Is it based on someone's experience?" "How current is this information?"

Additional information may be found by using a "search engine." Search engines are powerful searching programs that are helpful in finding information anywhere on the Web. Some of the popular ones are:

• Yahoo http://www.yahoo.com
• Infoseek http://www.infoseek.com
• Alta Vista http://www.altavista.com

Begin searching with specific terms. Use broader terms next. For example, specific terms would be "stem cell transplant" and "breast cancer." A broader term would be only "breast cancer." Using quotation marks will result in a more specific search, but use the "Help" key to find out how to enter search terms correctly. If you are not comfortable using a computer, ask staff at the public library for assistance.

Breast Cancer Information Clearinghouse: http://www.nysernet.org

CancerAnswers: http://canceranswers.org

CancerNet: http://cancernet.nci.nih.gov

Oncolink: http://oncolink.upenn.edu

PDQ: http://cancernet.nci.nih.gov/pdq.htm

Clinical Trial Web Sites
http://www.scitalk.com
http://www.nabco.org/trials
http://cancertrials.nci.nih.gov
http://cancernet.nci.nih.gov
http://www.centerwatch.com
http://www.askcnet.org

Books

Bone Marrow Transplant Resource Guide, Friends Helping Friends
National Bone Marrow Transplant Link (800-LINK-BMT)

Breast Cancer: The Complete Guide
Yashar Hirshaut, M.D. and Peter Pressman, M.D.

Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness
Jon Kabat-Zinn, Ph.D.

Guide to Stress Reduction
John Mason, Ph.D.

Heal Yourself: A Step-by-Step Program for Better Health Through Imagery
Martin Rossman, M.D.

Holding Tight, Letting Go: Living with Metastatic Breast Cancer
Musa Mayer

Hope is Contagious: The Breast Cancer Treatment Survival Handbook
Margit Esser Porter

Love, Judy
Judy Hart

Not Now...I'm Having a No Hair Day: Humour and Healing for People with Cancer
Christine Clifford

The Race is Run One Step at a Time: My Personal Struggle and Every Woman's Guide to Taking Charge of Breast Cancer
Nancy Brinker

Survivors' Guide to a Bone Marrow Transplant, What to Expect and How to Get Through It
Keren Stronach
(800-LINK-BMT)

We're All in This Together: Families Facing Breast Cancer
Irene Virag

Glossary

Adjuvant chemotherapy - Drugs used to kill cancer cells. They are given with other treatments, such as surgery or radiation, to destroy areas of tumor.

Allogeneic transplant - The person donating the bone marrow or stem cells is a closely matched family member, usually a brother or sister. Or the person donating the bone marrow is a closely matched unrelated donor.

Alopecia - A partial or complete hair loss, usually a temporary side effect of the chemotherapy.

Anemia - A condition that occurs when the body's red blood cell count is low.

Antibody - A protein produced by white blood cells (leukocytes) to battle foreign substances that enter the body, such as bacteria.

Apheresis - The peripheral blood stem cell collection process in which blood is taken from a patient and circulated through a machine that separates out stem cells. The remaining cells are returned to the patient.

Autologous transplant - The patient donates his/her own bone marrow or stem cells prior to treatment for reinfusion later.

Axillary nodes - Lymph nodes located in the armpits.

Bone marrow - The spongy tissue found in the cavities of the body's bones where all blood cells are produced.

Bone marrow transplant (BMT) - A procedure developed to treat some forms of cancer and other diseases. There are several types of BMTs, depending on who donates the marrow (see autologous, allogeneic, and syngeneic).

Central line or central venous catheter - A small, plastic tube inserted in a large vein to inject or remove fluids. The central line used in a stem cell transplant allows blood samples to be drawn, drugs to be given, and the actual transplant to occur with little discomfort.

Chemotherapy - Treatment with one or more anticancer drugs to try to stop or slow the growth of cancer cells.

Clinical trials - Long-term research studies that test new cancer treatments.

Colony stimulating factor or growth factor - The proteins given to stem cell transplant recipients before and during the harvest to increase the number of stem cells in the blood.

Conditioning - A phase in the stem cell transplant process designed to destroy cancer cells more effectively than with standard doses of chemotherapy. Conditioning involves combining high doses of chemotherapy and/or radiation.

Cytokines - Naturally occurring substances that can make cells grow (growth factor).

Engraftment - Process in which transplanted stem cells begin to grow in the recipient's bone marrow and produce new white blood cells, red blood cells, and platelets.

Erythrocytes - Red blood cells that carry oxygen.

Graft failure - Complication after a transplant in which the stem cells do not grow in the recipient's bone marrow and do not produce new white blood cells, red blood cells, and platelets.

Growth factor or colony stimulating factor - The proteins given to stem cell transplant recipients before and during the harvest to increase the number of stem cells in the blood.

Harvest or stem cell retrieval - The process of collecting stem cells from the circulating blood.

Immunocompromised - A condition in which the patient has a much higher risk of infection due to a weak immune system.

Immune system - The group of organs and cells in the body that fight infection and other diseases.

Inflammatory breast cancer - A rare, aggressive type of cancer. Symptoms include redness, warmth, and the appearance of ridges, welts, hives, or wrinkles.

Informed consent - Hospital form, signed by the patient, that documents an understanding of medical procedures.

Infusion - Slow introduction of fluid into a vein referred to as an IV (intravenous).

Leukocytes - White blood cells that fight infection.

Lumpectomy - A surgery to remove only the cancerous lump and some other tissue.

Lymphocytes - A type of white blood cell that is part of the immune system.

Mastectomy - A surgery to remove all or part of the breast and sometimes other tissue.

Metastasis - The spread of cancer from one part of the body to another.

Mobilization - Moving more stem cells from the bone marrow into the bloodstream through chemotherapy and/or a growth factor.

Peripheral blood stem cells - Stem cells that circulate in the blood.

Peripheral blood stem cell transplant or stem cell transplant - Stem cells are removed from the blood, frozen, thawed, and returned after high-dose chemotherapy.

Platelets - Blood cells that act as clotting agents to prevent bleeding.

Prognosis - The predicted or likely outcome.

Protocol - A specifically designed treatment plan.

Purging - The process of removing certain types of cells from bone marrow before transplanting it to a patient. In autologous transplants, marrow may be purged of lingering cancer cells.

Radiation therapy - Treatment to kill cancer cells using high-energy rays from x-rays, electron beams, or radioactive isotopes.

Red blood cells - Cells carrying oxygen to all parts of the body (erythrocytes).

Re-infusion - The return of healthy stem cells into a transplant recipient's body.

Remission - Complete or partial disappearance of cancer cells and symptoms.

Rescue process - Another term for a stem cell transplant. The reinfusion of healthy stem cells following high doses of chemotherapy or radiation.

Staging - The process of determining and describing the extent of the cancer.

Stem cells - The "parent cell." Every type of blood cell in the body begins its life as a stem cell. The stem cells then divide and form the different cells that make up the blood and immune system.

Stem cell retrieval or harvest - The collection of healthy stem cells from the circulating blood stream.

Stem cell transplant or peripheral blood stem cell transplant - Stem cells are removed from the blood, frozen, thawed, and returned after high-dose chemotherapy.

Syngeneic transplant - The person donating the bone marrow or stem cells is an identical twin.

Thrombocytopenia - Low platelet count.

White blood cells - Cells that help fight infection and disease (leukocytes).

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