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Against Breast Cancer

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Posted by Betsy Mullen on 4/10/2001 from 152.163.194.198:

In reply to: So much bone pain with TAXOL....WHY???? Please help... posted by Mike Randall on 4/4/2001 from 152.163.207.82:

Dear Mike:


On a positive note, I am very glad to hear that your mother’s tests have all come back negative and that there appears to be no sign of cancer left in her body – that is wonderful news. I am very sorry to hear about the pain that she has had to endure. I was in a very serious car accident many years ago and had a great deal of nerve damage in many areas of my body. I was in physical therapy for over three years, during which time I was also seen regularly in a pain clinic as the pain was and still is at times, very severe. I can truly empathize with the impact of severe, prolonged pain. And, as a breast cancer survivor, I can really relate to what your mother has been going through.

I have placed a call into one of our medical advisors that specializes in pain control and has worked extensively with cancer patients so that I can run your mother’s case by him. As soon as I receive any feedback from him, after I get the following feedback from you, I will post the information: It would be very helpful to know your mother’s type and stage of cancer, and all of her treatments, including her pain medication and doses of pain meds. This information can possibly help shed some light on why your mother has had such extensive pain without any relief. Our expert does work a lot with cancer patients experiencing bone pain and I am hopeful that we can get her some relief.

A resource that we use a lot is a book entitled "Cancer Chemotherapy Pocket Guide" by Robert J. Ignoffo, Carol S. Viele, Lloyd E. Damom and Alan Venook, published by Lippencott-Raven. In the section on Taxol, they cite a reference by RB Weiss, RC Donehower, PH Wiernik, et al entitled "Hypersensitivity Reactions from Taxol"; Journal of Clinical Oncology 1990; 8:1263-1268. The article can be accessed through a medical librarian, which most medical centers should have in place. You can perhaps discuss the possibility of getting a copy of the article with your mother’s oncologist. If you need us to access the article for you, please let me know and we will do our best to obtain copies. The article will likely be highly technical and since I have not read it, I do not know whether or not it addresses pain issues.

I am wondering, did/does your mother have access to patient-controlled anesthesia (PCA)? PCA is a method of administering medication that enables a patient to control the rate of drug delivery to control pain. When the patient needs pain relief, she/he can push a button on the PCA machine that will deliver a pre-determined dose of pain medication. The system is designed so that the patient will be unable to administer an overdose of the medication.

A positive step will be to refer your mother to WIN ABC and to this web site. We have trained information specialists in our offices that can speak with you and your mother one-on-one to best meet your needs and to also determine the best resource materials to send you (all free of charge). You and your mother are always welcome to telephone our office at (626) 332-2255; we can call you back so that the telephone call is "on our dime". Your mother is also welcome to complete our special Patient Profile Form and e-mail us with her information. All of her information will remain confidential. You can link to the special form at the top of the Message Board front page here on the WIN Against Breast Cancer web site (www.winabc.org). All e-mailed forms and conversations with staff and volunteers will remain confidential.

WIN Against Breast Cancer has several resources that I think will be very helpful to your mother. First, we have our Breast Buddy 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 your mother is interested, we could look into matching her with a woman who has a similar personal profile and they could become "virtual", e-mail and/or telephone Breast Buddy.

In addition, we will be happy to send you and your mother an arsenal of educational materials, free of charge regarding topics such as 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), breast cancer myths, relaxation audiotapes, a book by Richard and Annette Bloch entitled "Guide for Cancer Supporters" and much more depending upon your needs. WIN Against Breast Cancer has also published a very extensive Breast Health/Breast Cancer Resource Guide. We will be delighted to send these materials to both you (all of which are free of charge to patients and the public). We can Priority Mail them to you so you get them as soon as possible. Just let us know and they will be on their way!


ADDITIONAL RESOURCES TO HELP

Books Dealing with Pain, Pain Control and Complementary Approaches to Cancer Treatment


A book that I highly recommend 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".

"A Physician’s Guide to Pain and Symptom Management in Cancer Patients" by Janet L. Abraham was published last year by the Johns Hopkins University Press and is very comprehensive. It is available in paperback for $21.50 or thereabouts. The ISBN number is 0-8018-6246-9. This resource includes a bibliography of suggested reading for physicians, patients and families, which includes descriptions of each book and includes the following titles preceded by numbers:

1) "Pain Relief: How to Say No to Acute, Chronic & Cancer Pain!", by Jane Cowles

2) "Cancer Doesn’t Have to Hurt: How to Conquer the Pain Caused by Cancer and Cancer Treatment), by Pamela J. Haylock and Carol P. Curtiss.

3) "Management of Cancer Pain: Clinical Practice Guideline Number 9", published by the Agency for Health Care Policy and Research (AHCPR), US Department of Health and Human Services, Public Health Service, 1994; written by Ada Jacox, D.B. Carr, R. Payne, et al. AHCPR publication number 94-0592. This publication is available from AHCPR Clearinghouse, PO Box 8547, Silver Spring, Maryland 20907; telephone: 1-800-358-9295.

4) "Getting Relief from Cancer Pain", published by the Cancer Information Service (CIS); telephone: 1-900-4-CANCER (1-800-422-6237).


A resource that we have used for years is "The Chronic Pain Control Workbook" by Ellen Mohr Catalano, M.A. and Kimeron N. Hardin, Ph.D., New Harbinger Publications, Inc., is another good resource. The book is a step-by-step guide for coping with and overcoming pain.


Books about Breast Health and Breast Cancer


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.

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 author is well known and well respected.

"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 and breast cancer 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.

I have included information below that is from WIN Against Breast Cancer’s (WIN ABC) Breast Buddy Volunteer Curriculum ©1994, rev. 1/00 that includes suggestions on how to help and support a breast cancer patient. In addition, we will be happy to send you; free of charge, a great book written by Richard Bloch entitled "Guide for Cancer Survivors". We can also send you additional information about breast health and breast cancer to expand your own general knowledge, Mike.


I also want to make sure that the rest of your family is following through with their own breast health needs, Mike. Here are a few questions that come to mind:

Do you/they know how to do a proper breast exam? You can receive this information self-exam right on our web site (www.winabc.org). I realize that you are a man, but this is good information for everyone and yes, men can get breast cancer.

Are your female relatives current on having screening mammograms (if appropriate, depending upon their age? Regular clinical breast exams?



The following information is an excerpt from WIN Against Breast Cancer’s Breast Buddy Volunteer Curriculum, ©1994, revised 1/99:

"The best way to cheer yourself up is to try to cheer somebody else up."
Mark Twain

Family members, partners and significant others cannot take away the fact that their loved one has breast cancer, wish as they might. But they can work together to deal with her diagnosis and the changes that result. Ask the patient what you can do to help. Patients’ needs may change from day to day. The following lists have been developed for volunteers, family members and friends.

Suggestions

Go with the patient to doctor appointments. Take notes to record information discussed during the visit. Since you do not live close to your mother, perhaps you can arrange for a conference call with your mother and her physician(s).

Prepare meals or bring a frozen casserole for later use.

Help the patient investigate treatment options and available resources.

Go with the patient to shop for a wig and/or prosthesis.

Suggest to the patient that she "countdown" her treatments ("10, 9, 8...") to make them seem more manageable.

Acknowledge treatment milestones (e.g., halfway point).

Be honest about your needs and feelings. Encourage the patient to do the same.

Encourage patient to remain active. Plan phone calls and visits to help keep her spirits up.

Run errands (grocery shopping, car-pooling, etc.)

Encourage the patient to express her feelings. Listen, listen, and listen!

Take care of children (help with homework, etc.)


Five Keys to an Individual’s Support System

1. Self: Positive facets of a person that she brings to an experience. These include personality, successful past experiences, the ability to handle difficult situations and a positive self-image.

2. Family and Friends: Significant sources of practical, emotional and social support.

3. Work and/or School: Sources of satisfaction, positive distraction, productivity, and emotional and social support.

4. The Medical Community: Sources of physical, informational and psychosocial support.

5. Religion and/or Spirituality: Spirituality is expressed in many ways. Various types and places of worship can be strong sources of support and hope. Individuals who incorporate an Eastern philosophy into their lifestyle, such as meditation and yoga, often experience psychological well being from these approaches.

Adapted from: Fawzy & Fawzy, "A Structured Psychoeducational Intervention for Cancer Patients", General Hospital Psychiatry, 1994


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 your mother and you pursue your question(s) with her physicians. You both should feel fully empowered to obtain satisfactory answers and feel free to seek second or opinions. 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. Again, there is a special Personal Profile Form on our web site (blue link at the top of this page) that your mother can fill out and e-mail to us to help us best meet her needs and you are both also welcome to call us at (626) 332-2255. Your information will be kept confidential.


I know first-hand how scary this is; I am an eight-year breast cancer survivor. I also know that a breast cancer diagnosis impacts patients’ loves ones, such as yourself and we are here to help and support you as well as your mother in any way that we can.

Here are some words about courage that I would like to share with you and your mother:

What is COURAGE?

Confronting the dragons

Overcoming the obstacles

Understanding the risks

Really living

Always believing

Going the distance

Expecting the BEST!


Please take care, Mike and let us know how we can best be of help and support to you and to your mother. She is blessed to have a son that cares so much – you are a wonderful advocate. As I will post more information on pain and pain control associated with Taxol as I gather it and will advise you that I have done so. Please also keep us "posted" on how you are both doing.


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

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