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'Living' Newsletter - Issue 11, Spring 2004

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Celebrating Four Years Of Living!
by by Bonnie Bassett-Spiers

When I started "Living" in June of 2000 I had no idea that I would even see 2004 let alone be still producing the newsletter. But here I am and here is yet another issue.

In these past four years I've been privileged to get to know through their words the women who have so generously shared their stories and poetry of challenge and triumph. Hopefully, their words touched all our readers and I wish to thank them for sharing their experience with "Living". At a distance I and all the readers of "Living" have witnessed the loss of some of these women and others who are no longer on our mailing list. However, I've also been pleased to witness the growth of our mailing list. Naïve as this may sound, I prefer to acknowledge this growth as a result of people finding "Living" on our website or it being recommended to them rather than a reflection of many more women joining the ranks of this other dimension.

It has been greatly rewarding to publish "Living" these past four years and I hope that it will continue to reach more people. When I hear of people happily stumbling across it on Willow's website I know that it has been a worthwhile endeavour. If it has helped at least one other person living with metastatic breast cancer feel less alone then I feel that it has been worthwhile.

Treatment of metastatic breast cancer continues to improve and that means that many of us are living, not just existing, longer than ever before. What still seems to be slow to improve is the availability of materials and resources specifically for the person living with metastatic breast cancer. What has changed though is that it does not seem to be the taboo subject it once was. It has been brought out into the open and it is being seen more for what it is rather than what it used to automatically represent-the end game.

"Living" will continue to try to be a voice for those living with metastatic breast cancer and in some small way, hopefully will contribute to metastatic breast cancer being seen in an accurate light. I wish to thank Willow for giving me the opportunity to start "Living" and since then, for their unwavering support for the publication over the past four years.

So, Happy 4th, "Living"! It's been a great ride that continues to challenge and surprise. May it continue to bloom and grow and remind us that we are not alone and that we are all "Living!"

*This article may not be reproduced in any way except by written permission by the author.

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What ever happened to High-Dose Chemotherapy with Bone Marrow Transplantation (ABMT)?
by Bonnie Bassett-Spiers

This treatment has been fraught with controversy for a number of years, and some would even say has been surrounded by too much negative publicity.

In 1999, four randomized trials presented at the American Society of Clinical Oncology annual meeting reported no survival advantage of high-dose chemotherapy in patients with advanced breast cancer. However, what some studies also found is that there may be a subset of women under age 50 in which this controversial treatment may delay relapse and improve relapse-free survival. Dr.Naoto T. Ueno, director of bone marrow transplantation in breast cancer at M.D. Anderson Cancer Center, said that this data should not be ignored and there is enough data to warrant continued investigation in this field. Dr. Peters of the Barbara Ann Karmanos Cancer Institute in Detroit recommended that future studies should specifically look at women 50 and younger and that these studies should have an adequate follow-up time.

However, as this treatment is quite harsh and where the outcome may only differ after 10 years, it could be difficult to get participants. Patient advocacy groups are stressing caution and encouraging women to be informed, talk to their doctors about this treatment, be sure they understand the risks and the potential benefit and to be sure it is done within a well-designed clinical trial.

(from: Journal of the National Cancer Institute, Vol 95, No. 21, Nov. 5, 2003, p.1572-1573.)

*This article may not be reproduced in any way except by written permission by the author.

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TidBits from SABCS 2003 (San Antonio Breast Cancer Symposium - December 2003)
by Bonnie Bassett-Spiers

The following is some of the news from the 2003 San Antonio Breast Cancer Symposium relevant to metastatic breast cancer treatment.

A study of a new third-generation bisphosphonate drug, ibandronate analyzed its effects on bone pain, on analgesic use and quality of life. Both oral and intravenous administrations were studied over a 2 year period. Both oral and intravenous ibandronate significantly reduced bone pain over a long period. One of the co-authors of the study, Dr. Ingo Diel from Germany said, "Oral ibandronate offers a convenient alternative to intravenous bisphosphonate therapy, allowing self-administration at home, or conversion from intravenous to oral treatment once chemotherapy is completed." It also does not carry the risk of being toxic to the kidneys if given in 15 minutes rather than over 1 hour, unlike zoledronate. Ibandronate has been used to treat hypercalcemia in Germany for 5 years and the U.S. is planning a randomized trial comparing it to zoledronate, with its results likely submitted to the FDA for approval. [Study Title: Intravenous and Oral Ibandronate Alleviates Pain in Patients with Skeletal Metastases from Breast Cancer. Abstract 548]
(Charlene Laino, SAN ANTONIO, TX- Dec. 18, 2003)
View abstracts at www.abstracts2view.com/bcs03/

The drug, Etanercept, an approved treatment for several autoimmune disorders such as rheumatoid arthritis, has potential as breast cancer therapy. Etanercept (Enbrel) is a tumor necrosis factor-alpha (TNF-alpha) inhibitor and TNF-alpha is apparently important in the pathogenesis of breast cancer. This was a Phase II trial which at this point was investigating the drug's toxicity, tumour response and biological activity in a small sample of 16 patients with progressive metastatic breast cancer who had not responded to conventional treatment. Although there was stabilization of disease with only one patient and minor regression of disease with another, the investigators will go on to test the treatment either on patients with less advanced disease or in combination with chemotherapy. [Study Title: A phase II trial of etanercept, a recombinant human soluble tumour necrosis factor receptor (p75) fusion protein in patients with metastatic breast cancer. Abstract B228]
(Paula Moyer, BOSTON, MA- Nov. 24, 2003)
View abstracts at www.abstracts2view.com/bcs03/

Multicentre, randomized, controlled phase III trials conducted by Dr. John E. Pippin, Dallas, Texas demonstrated that fulvestrant (Faslodex) is an effective alternative to anastrozole (Arimidex) for the treatment of postmenopausal women with advanced breast cancer. Fulvestrant is another estrogen receptor agonist and is administered once a month as an intramuscular injection. "These data (from these trials) show that women with advanced breast cancer have options when other hormonal therapies fail," stated Dr. Pippin. [Study Title: Fulvestrant (Faslodex) Versus Anastrozole (Arimidex) For the Treatment of Advanced Breast Cancer: a Prospective Combined Survival Analysis of Two Multicenter Trials. Abstract 426]
(Charlene Laino SAN ANTONIO, TX - Dec. 18, 2003)
View abstracts at www.abstracts2view.com/bcs03/

*This article may not be reproduced in any way except by written permission by the author.

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New Book:
Breast Cancer: Landscape of An Illness. A book by Penelope Williams (Penguin Canada, 2004)
reviewed by Bonnie Bassett-Spiers

Ms. Williams' newest book includes an extremely well-written and well-researched chapter devoted to advanced breast cancer. I am absolutely certain that the entire book is an excellent read if this chapter is any indication. However, for the purposes of this newsletter, I decided to focus on this relevant material.
The chapter, appropriately entitled, "The Other Shoe: Metastatic Disease", utilizes the experience of those living with the disease as well as medical experts and the woman who started to bring it out of the closet, Musa Mayer.
Ms. Williams does an excellent job of dispelling the myths about metastatic disease in the 21st century and finally gives the public an accurate account of the new hope that many of us have been afforded, largely due to new treatments. She cites that, "Women with metastatic breast cancer are swimming against the stream like never before, and living longer and better for it."
The chapter takes you through the various treatments available yet realistically talks about it being somewhat of a 'crapshoot' and 'just the luck of the draw' as to why some do well and some do not. It was also refreshing to hear an oncologist attest to the fact that, "Today, our clinics are crammed with women with metastatic disease who are surviving and surviving and surviving, and doing reasonably well." This is exactly the word that needs to get out and I applaud Ms. Williams' book for doing this. I'd love to quote this to the next oncologist that I hear about writing his patient off.
Delving into the advanced breast cancer world, even in one chapter, in an honest and accurate way is to be applauded and I thank Ms. Williams for this. I hope that those who pick up this book, whether veterans of breast cancer or not, can also read the chapter on metastatic disease because as scary as that can be, reading it can go a long way to educate and reduce fear.

*This article may not be reproduced in any way except by written permission by the author.

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FYI
Research Participants Wanted!

A research study exploring the meaning of music therapy support groups for cancer patients who have had recurrences or metastases is looking for participants. The time commitment involves one individual initial meeting (1.5 hrs), 8 music therapy support group sessions (2 hrs once/week for 8 weeks) and one individual follow-up meeting (1.5-2.0 hrs) after the last group meeting. If you are interested in this opportunity or want more information, call Mary Rykov at 416 538-2271. Ms. Rykov is an accredited music therapist and Ph.D. candidate at the Ontario Institute for Studies in Education of the University of Toronto. This research is supported by the Canadian Cancer Society through the National Cancer Institute of Canada and no previous musical skills are necessary.

A New 'Living With Metastatic Breast Cancer' Booklet Coming Soon!

Willow is collaborating with Edelman and Novartis on a new metastatic breast cancer booklet. The hope is that the booklet will be available to breast cancer clinics, physicians' offices and cancer organizations this spring.

The booklet will provide information on coping with metastatic breast cancer, including dealing with emotional issues, family stresses, coping with treatments, working with your health care team, where to get support, to name a few topics.

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The End of Angela's Journey
Angela Vecchio-Ozmon's journey through advanced breast cancer, which was documented by the CBC's documentary series, "The Passionate Eye", and was mentioned in the last issue of "Living", has come to an end. The 39 year old breast cancer advocate and single mother of two young children shared with us the most intimate details of her last 2 years because, as she said, "I didn't realize I wasn't supposed to talk about it". Perhaps fittingly, she died on February 19th in Halifax during the height of the raging snow storm.
Ms. Vecchio-Ozmon, who was committed to making a difference and telling her story, received a Distinguished Community Service Award from St. Mary's University in 2002 and a Woman of the Year Award from the Halifax YWCA in 2003.
With the documentary, "Angela's Journey", Angela Vecchio-Ozmon did what she needed to say, "goodbye", and she did it her way.