Women's Information Network
Against Breast Cancer

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Posted by Betsy Mullen on 4/10/2001 from 64.12.105.169:

In reply to: cancer pill posted by Alla Polyak on 4/7/2001 from 63.195.56.168:

Dear Alla:

The new drug that shows promise for the treatment of chronic myelogenous leukemia in particular, is Glivec, also known as ST1571. It can be administered in pill form, once a day and so far, has been shown to have few side effects and has not triggered resistance. The research team for the study that was profiled was/is headed by Dr. Brian J. Druker of the Oregon Health Sciences University in Portland, Oregon and Dr. Charles L. Sawyers of UCLA’s Jonsson Cancer Center in LA, California. Two articles regarding their clinical trial were published in the April 5, 2001 issue of the New England Journal of Medicine (www.nejm.org; please see link at the bottom of this message). In another article out of the Dana-Farber Cancer Center in Boston, Massachusetts, Dr. George Demetri and his colleagues reported on the use of ST1571 to treat a 50 year-old woman with a rare and heretofore incurable form of gastrointestinal cancer that had spread to her liver and other areas in her abdomen. The type of cancer that she was being treated for is gastrointestinal stromal tumor, also referred to as GIST. Fewer than 5 percent of patients with this type of cancer respond to conventional chemotherapy. Six months after the study began, the woman showed a 70 percent decrease in the size of her 8 largest tumors and 6 tumors had completely disappeared. In addition, no new tumors appeared during that period. Source: Adapted from Los Angeles Times Article "Research Shows Drug’s Effectiveness in Battling a Usually Deadly Form of Leukemia", April 9, 2001 by Thomas H. Maugh III.

As far as I know, there are currently no clinical trials using this drug for breast cancer patients.

If you have not done so already Alla, I encourage you to fill out the special Personal Profile Form (blue link at the top of this page) with your specific information and with requests for some of the information and resources I have outlined below. All of your personal information will remain confidential.

Also, if you have not contacted our office directly yet, we have trained information specialists that can speak with you one on one to determine the best materials to send you (all free of charge), including a booklet entitled "Understanding Breast Changes" and an in-depth WIN ABC resource guide with great resource listings and suggested reading. You are more than welcome to call us at (626) 332-2255. If it is a long distance call for you, just ask us to call you right back so that the call is "on our dime."

WIN Against Breast Cancer has several additional resources that I think will be very helpful to you. We have our Breast Buddy Breast Care Program which matches women who are at least 1-year post treatment (excluding tamoxifen) with new patients to mentor and support them throughout the diagnosis, decision-making, treatment and recovery periods -- for at least 1-year. We make every effort to match Buddies with new patients by age, geography, marital status, type and stage of breast cancer, type of treatment, hobbies and on and on. If you are interested, we could look into matching you with a buddy who shares a similar profile to yours. Depending upon where you live, this may need to be a telephone and e-mail relationship, but it certainly helps to speak with another woman who had a similar diagnosis and who faced similar decisions regarding her treatment options.

We will be happy to send you educational materials, free of charge regarding breast anatomy, breast health, understanding breast changes, questions to ask your health plan about exemplary care (found on our web site under help yourself – 10 key questions for women to ask their health plans), various videos including nutrition during cancer treatment, dealing with side effects of treatment, tamoxifen, breast reconstruction and much more depending upon your individual needs.

In addition, WIN Against Breast Cancer has published a very extensive Breast Health/Breast Cancer Resource Guide. We will be delighted to send these materials to you (all of which are free of charge to patients and the public).

RESOURCES TO HELP YOU


Clinical Trials *

Scientific research to find better treatments for cancer starts with basic research in the laboratory (in vitro) and animal (in vivo) studies. The safest and best results of such research can then be translated to human studies with the hope of finding breakthroughs that will benefit patients. Patients are enrolled in clinical trials on a strictly voluntary basis after careful screening and with the patientsí full consent. Patients participating in clinical trials are carefully monitored throughout the trial and are followed after the trial has ended. These patients become part of a network of clinical trials being conducted around the country run by teams of doctors and researchers. The researchers and doctors share their experiences and ideas to refine and monitor clinical trials.

There are a variety of reasons why patients choose to participate in clinical trials. Patients may be looking for a treatment to help prolong their lives after their cancer has not responded to treatment; they may be looking for a treatment that shows promise of less side effects so that they will feel better and have a better quality of life while undergoing treatment; and patients often choose to enter a clinical trial to contribute to research that may lead to a scientific breakthrough that will help other patients.

Patients may be exposed to health risks and drug side effects if they choose to participate in clinical trials. Also, because patients are receiving new treatment under investigation, not all of the potential risks, side effects and benefits are fully known or understood ahead of time.


Suggested Questions to Ask about Clinical Trials

1. What is the purpose of the study?

2. What kinds of tests and treatments does the study involve (what and how are they performed/administered)?

3. What kind of long-term follow-up care is included in the study?

4. How will the study affect my daily life and routine?

5. How far will I have to travel to receive the treatment?

6. How often will I need to go in for the treatment?

7. How long will the study last?

8. What are the possible short and long-term side effects and risks of the treatment?

9. What are the possible benefits of the treatment?

10. Will I need to be hospitalized, and, if so, how often and for how long?

11. In my case, what is likely to happen with or without this new treatment?

12. What might this new treatment do and what might the cancer do?

13. If I am harmed as a result of the study, what treatment will I be entitled to?

14. Are there other alternatives to this treatment and what are their advantages and disadvantages?

15. Are there standard treatments for my case and how does the study compare with them?
16. Will I incur any costs or will all of the treatment and follow-up care be free?



Clinical Trials*

Source and Suggested Reading:


1. Choices In Healing -- Integrating the Best of Conventional and Complementary Approaches to Cancer Author: Michael Lerner, Ph.D. (MIT Press, 1994, ISBN#: 0-262-12180-8, 667 pages, $24.95) An objective and comprehensive resource covering mainstream and complementary therapies with emphasis on spiritual, psychological, nutritional and various unconventional treatments. Can be ordered directly from COMMONWEAL @: 415-868-0970.

Additional Suggested Reading:

2. Making Informed Medical Decisions: Where to Look and How to Use What You Find Authors: Nancy Oster, Lucy Thomas and Darol Joseff, M.D. (O’Reilly, 2000, ISBN #: 1-56592-459-2, 365 pages, $17.95)


*Excerpts from Breast Buddy™ Breast Care Program Volunteer Curriculum ©1994 WIN Against Breast Cancer rev. 5/00


Additional Clinical Trials Resources and Information Can Be found right here on this web site at:

http://www.winabc.org/resources3.html#t5


There is a great book out entitled "Be a Survivor, Your Guide to Breast Cancer Treatment " written by Vladimir Lange, M.D. You can purchase the book through our site’s bookstore. An additional book that I highly recommend for you was written by Michael Lerner, the Founder of Commonweal. There is a link to Commonweal in the Resources Section of this site as well. The book is entitled "Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer".

Additional good books that extensively cover breast health, breast cancer and reconstruction are entitled "A Woman’s Decision, Breast Care Treatment and Reconstruction, 3rd Edition" and the newest edition of "Dr. Susan Love’s Breast Book" which are also available in our "virtual bookstore". Another book I think will be helpful to you is entitled "The Road to Immunity: How to Survive and Thrive in a Toxic World" by Kenneth Bock, MD and Nellie Sabin. It covers in depth information about the immune system and how to keep our immune systems functioning at peak capacity.

We have another book in the WIN ABC library that good that is entitled "Assess Your True Risk of Breast Cancer" by Patricia T. Kelly, Ph.D., copyright 2000. It discusses what statistics really mean, evaluation of heredity and lifestyle risks and What You Need to Know About Genetic Testing (BRCA1 and BRCA2 gene testing).

The Complete Book of Breast Care by Niels H. Lauerson, MD, PhD and Eileen Stukane is also a very good resource with comprehensive and easy to understand information.

Another great resource about breast health is: Diseases of the Breast, Second Edition; Editors: Jay R. Harris, Marc E. Lippman, Monica Morrow, C. Kent Osborne; Publisher: Lippincott Williams & Wilkins; 2000; ISBN #: 0-7817-1839-2. Most medical libraries should carry it; I’m not sure about regular public libraries.

The books can be purchased on line in our virtual bookstore via Amazon.com and should be available in most public libraries.


AN IMPORTANT REMINDER: It is very difficult to render an opinion without knowing all the facts of any one particular case. But one strong recommendation we would like to make is that you pursue your question(s) with your own physicians. You should feel fully empowered to obtain a satisfactory answer and feel free to seek a second or third opinion. We have some great tips on partnering with your health care team and key questions to ask your doctors, communication tips and informed decision-making tips to help you get the information you need. There is a special Personal Profile Form on our web site (blue link at the top of this page) that you can fill out and e-mail to us to help us best meet your needs and you are also welcome to call us at (626) 332-2255. Your information will be kept confidential.


I am holding you in my thoughts and look forward to hearing from you with an update on how you are doing and how WIN ABC can best be of help and support to you. Please keep us "posted".


My warmest personal regards,
Betsy


Elizabeth ("Betsy") Mullen
Founder, President/CEO
WIN Against Breast Cancer
Main Office:
536 S. Second Avenue, Suite K
Covina, California 91723
Telephone: 626-332-2255 Fax: 626-332-2585
San Diego Office:
Telephone: (619) 284-4900 Fax: (619) 284-7900
Web Site: www.winabc.org

Follow Ups:

• Re: Research & New Drug's Effectiveness in Treating Some Cancers - Alla Polyak   4/12/2001 (1)
  • Re: Research & New Drug's Effectiveness in Treating Some Cancers - Betsy Mullen   4/13/2001 (0)

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