August 2012 



In This Issue
Video Helps In Advance Care Planning For CPR
New Caregiver Group
Upcoming Programs/Conferences

Quick Links


Bring SHARE to your Doctor 

Does your doctor know about the support groups and educational programs at SHARE? Are you able to bring SHARE materials with you to your next doctor's appointment?  Why not help spread the word?


Contact Christine Benjamin at 212-937-5586  


Breast Cancer Helpline


Llame a la Línea de Auxiliode Cáncer de Seno de SHARE al

(866) 891-2392. Usted podrá hablar con una sobreviviente que tiene cáncer de seno metastático.



Additional Resources 

Transportation Assistance

ACS Road to Recovery



Medication Assistance

Medication Health Wellness Foundation



Medicare Fundamentals Video 


Call The Breast Cancer Hotline For Additional Resources



Join Our Mailing List 
Need Trials? is

a non-profit service that

is dedicated to providing accurate information  

about breast cancer  

clinical trials. Our patient-centered website  includes trials funded by the National Cancer Institute, public research foundations, and the pharmaceutical/

biotechnology industry.

Our goal is to help you gain insight into the clinical trials process and make it easier and faster for you to find the clinical trials that are right for you.


The Group Room

Vital Options International produces The Group Room, Advocacy in Action and other media projects. Vital Options is a not-for-profit cancer communications, support, and advocacy organization with a mission, to facilitate a global cancer dialogue. Click on the above link and scroll down to "advocacy in action" to see what leading metastatic advocates are doing and saying. 

Looking For A Retreat?

Breast Cancer Options announces a 3 Day Retreat for Women With Metastatic Breast Cancer. The retreat will be held at the Omega Institute in Rhinebeck NY from September 24-27, 2012.

Call 845-339-4673
or email: Hope
New Data from Phase III EMILIA Study Showed Genentech's Trastuzumab Emtansine (T-DM1) Significantly Improved Survival of People With HER2-Positive Metastatic Breast Cancer


South San Francisco, Calif. --  August 26, 2012 -- Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), today announced updated results from the Phase III EMILIA study, which showed that trastuzumab emtansine (T-DM1) significantly extended the lives (improved overall survival) of people with HER2-positive metastatic breast cancer (mBC) compared to the combination of lapatinib and Xeloda® (capecitabine). The EMILIA study, in people with HER2-positive mBC who had previously received Herceptin® (trastuzumab) and taxane chemotherapy, has now met both co-primary efficacy endpoints of significant improvements in overall survival and progression-free survival (PFS). These data will be presented at an upcoming medical meeting.

Genentech has submitted a Biologics License Application (BLA) for trastuzumab emtansine to the U.S. Food and Drug Administration (FDA), and Roche will shortly be submitting a Marketing Authorization Application to the European Medicines Agency (EMA).

"We are extremely pleased to announce that people treated with trastuzumab emtansine survived significantly longer than those who received a standard option for this aggressive advanced breast cancer," said Hal Barron, M.D., chief medical officer and head, Global Product Development. "We believe that antibody-drug conjugates have the potential to change the future treatment of cancer, and we look forward to working with regulatory authorities in the hope of bringing another potential treatment option to people with HER2-positive metastatic breast cancer."

Based on these updated overall survival results, people in the lapatinib and Xeloda arm of EMILIA will be offered the option to receive trastuzumab emtansine. In addition, Genentech plans to open an Expanded Access Program (EAP) in the United States to provide, under certain circumstances, people with HER2-positive mBC access to trastuzumab emtansine while the company seeks regulatory approval.


*Press release by Genentech Aug 2012 



Video Helps In Advance Care Planning For CPR 
By Joan

Joan is a SHARE Leader, Consumer Reviewer, Department Of Defense Breast Cancer Research Program, & Helpline Volunteer

Joan on Hotline call

Many survivors with advanced breast cancer are probably uncomfortable planning for advance care interventions, such as CPR. As a metastatic breast cancer survivor, I had put off planning, but then realized it would be better to plan even if I never need such interventions. A plan helps to avoid confusion, takes the burden off of my family, friends, and doctors, and protects my rights and wishes in the future. It brings peace of mind.


Our oncologists often describe various medical interventions for advance care. However, a trial showed that a verbal description of CPR, or cardiopulmonary resuscitation, was not the best way to clearly explain the procedure. In the trial, patients who also saw a 3-minute video had more knowledge and were more likely to decline CPR than those who only heard a verbal description.


The researchers presented the trial results at an ASCO session on patient and survivor care, titled, A Video Decision Support Tool for CPR in Advanced Cancer: A Randomized Controlled Trial (Abstract 9004). The presentation was led by Angelo E. Volandes, M.D., Department of Medicine, Massachusetts General Hospital.


The enrollees were patients recruited from four large academic oncology centers in the United States. Half of the 150 enrollees were women and 10% had breast cancer. The average age of the patients was 63.


When asked whether they would choose CPR, 48% of patients in the verbal arm of the trial wanted CPR attempted, 51% declined, and 1% were unsure. In the video arm, however, only 20% wanted CPR, 79% declined, and 1% were unsure. The results were highly statistically significant (P = < 0.001, meaning there was less than a 1 in 1,000 chance that the statistical result was due to chance).


Prior to describing CPR or showing the video, the surveyors asked the enrollees a few questions in order to gauge their baseline knowledge of the procedure. On the scale, the two arms scored average and were roughly even. But when asked the same set of questions after hearing a description or watching the video, the patients in the video arm had gained more knowledge. They were more likely to know that CPR was a procedure to restart your heart if it stopped beating, and most advanced cancer patients had complications from CPR and few survived to walk out of the hospital. The results were highly statistically significant (P = <0.001).


What did patients think about the video? Of the enrollees in the video arm, 90% found it helpful, 93% were comfortable watching the video, and 97% would recommend it to another patient with advanced cancer.


The trial enrollees were one-third African-American, 10% Latino, and half were Caucasian. The trial excluded patients who did not have advanced cancer and could not speak English, but the video has now been translated into Spanish and Chinese and will be available in other languages in the future.


Other videos about advance care planning may also help us make better decisions today for potential interventions in the future.






ONE-TO-ONE SUPPORT: speak with another woman living with metastatic disease.  Call the SHARE Hotline @ 212-382-2111.




IN PERSON DAYTIME SUPPORT GROUP: First and Third Thursday of the month.  12-1:30 PM  Sept dates: Sept 6th and Sept 20th.   Click HERE  for more information. 



Monthly on Wednesdays, 6-7:30 PM.  Sept 5, Oct 3, Nov 7, Dec 5 Click HERE.  




This group is for those whose loved ones have been diagnosed with any stage of breast or ovarian cancer.  Caregivers will have the opportunity to share experiences and support each other as they help their loved ones deal with cancer.  Facilitator is the husband of a SHARE participant.   

Monthly on Tuesdays, Sept 11, Oct 9, Nov 13, Dec 11 


You must register.  Call the Helpline to register in advance for support groups.   SHARE Helpline: 212-382-2111.


In Person groups meet at the SHARE office.  1501 Broadway. Suite 704A, New York, NY 10036.  Broadway between 43rd & 44th Street.  


Click HERE  to see additional SHARE programs.   



Call 212-382-2111 to register for all programs. 


Celebrity Makeup Artist from the Hit TV Series "30 Rock"
Jenn Jorge Nelson and colleagues will share their knowledge of chemical-free products for radiant skin, effective makeup application and where to find easy-to apply lashes/eyebrows and wigs.  A few lucky attendees currently in treatment will receive a "makeover" at the session.  Registration required.
SHARE Office 1501 Broadway #704A
Thursday October 4, 2012 6:00 - 7:30 PM 

The new SHARE calendar is available.  Click HERE to see calendar online.

Lower Your Anxiety. Get Legal Help.
A program of Wise Women's Circle, for women of retirement age
Tina Janssen-Spinosa, Esq, New York Legal Assistance Group Staff Attorney will talk about advance medical directives, powers of attorney, last wills and testaments and other relevant legal documents.
SHARE Office 1501 Broadway #704A
Tuesday October 23, 2012 2:30 - 4:00 PM 

MBCN (Metastatic Breast Cancer Network) Annual Conference.  Moving Forward With Metastatic Breast Cancer. 

Northwestern University

Robert H. Lurie Medical Research Center

303 E. Superior Street, Chicago

Saturday - October 13, 2012

8:00 AM - 5:30 PM

Scholarships may be available through MBCN. 
Click here for more info.

Living with Metastatic Breast Cancer A Two-Part Series free "Connect" workshop for people living with mbc, their families, friends and health care professionals. 
This is a telephone workshop offered by Cancer Care.
Call 1-800-813-HOPE (4673) or visit to register.  
Interested in being a Helpline Volunteer or Peer Referral? 

Helpline training is scheduled for Oct 17th and 24th at the SHARE office beginning at 6:00 PM. Contact Donna Faranda to register.  212-937-5577


SHARE's mission is to create and sustain a supportive network and community of women affected by breast or ovarian cancer. We bring these women and their families and friends together with survivors to provide participants with the opportunity to receive and exchange information, support, strength and hope.   


SHARE provides telephone support, support groups, educational programs and advocacy opportunities.  All services and programs are free.   


Christine Benjamin LCSW
Metastatic Program Coordinator