FEB 2013  

METS MATTERS

INFORMATION FOR WOMEN LIVING WITH METASTATIC BREAST CANCER 
In This Issue
Gene Sequencing
What's New @ SHARE
New Caregiver Group
Upcoming Programs/Conferences

Quick Links

computer/phone
WE WANT TO HEAR FROM YOU
 
The three things I hear most from women living with metastatic disease is: we want information about new treatments, we are isolated, marginalized  and feared and there is no place to talk about how we really feel. You talk, we listen and respond with programs, support and events for you and those who love you.
Tell us what you want and need:

Call (212)937-5586

 

or Email

 

Click HERE

 

WATCH
The Balancing Act
on Lifetime
to hear Kathy Hynes-Kadish
and Christine Benjamin talk about metastatic breast cancer

Breast Cancer Helpline
212-382-2111  


HABLA CON UNA SOBREVIVIENTE

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

888-227-6333

 

Medication Assistance

Medication Health Wellness Foundation

800-675-8416

 

The BigAppleRx Prescription Discount Card  

 

Medicare Fundamentals Video  

 

Call The Breast Cancer Helpline For Additional Resources

1-866-891-2392 

 

 Join Our Mailing List
Need Trials?

BreastCancerTrials.org is a non-profit service that is dedicated to providing accurate information about breast cancer clinical trials. 

 

Studies
Genentech and
@23andMe are
partnering on a new
metastatic breast
cancer research
initiative, called InVite.
The study aims to learn
more about how
genetics play a role in
response to treatment.
Click Here for more info. 
 

Gene Sequencing

Are Gene Sequencing Assays

Worth It? 

 

By Joan

SHARE Helpline volunteer and co-chair of SHARE Leaders, consumer reviewer for the Department of Defense, Breast Cancer Research Program

  

At the San Antonio Breast Cancer Symposium in December, I picked up a flyer from Los Angeles-based City of Hope Medical Center's Clinical Molecular Diagnostic Laboratory. It reads: Coming soon ... Next-Gen Sequencing Panels. The photocopied sheet of white paper then listed the panels, their individual genes, and the cost of the gene panel:

 

*Onco-44-gene panel, $1,875

*Cancer-30-gene panel, $3,250

*Breast-17-gene panel, $2,350 (ATM, AXIN2, BAP1, BARD1, BRIP1, CDH1, CHEK2, MRE11A, NBN, PALB2, PTEN, RAD50, RAD51C, RAD51D, STK11, TP53, XRCC2)

*Ovarian-22-gene panel, $2,350

*Colorectal-19-gene panel, $2,350

*Cancer-428-gene panel, $3,950

 

Read more HERE 

  
WHAT'S NEW FOR WOMEN LIVING WITH METASTATIC DISEASE (and those who love them) at SHARE?

 

We at SHARE have been working on incorporating your thoughts, concerns and issues into our programming. We've reached out to some of our funders to be able to provide what you need and hope our new initiatives will meet some of those needs.

 

To educate families, friends, caregivers, medical professionals, staff and volunteers about issues and concerns unique to those living with metastatic disease, SHARE has organized a program entitled, "How Metastatic Breast Cancer Affects Us All," with Beth Taubes RN, OCN, CBCN, and clinical practice manager at The Women's Oncology and Wellness Practice in NYC. This program on March 7th at 6 PM will be an informational and social evening for those living with metastatic disease and those living with and loving them.

 

The patient, family and friends will have the opportunity to pose their questions and concerns related to the impact of a Stage IV diagnosis. For more information and to register, please CLICK HERE.

 

To read the rest of this article,  CLICK HERE. 

 

 

Caregivers

GOOD NEWS FOR CAREGIVERS

 

SHARE is committed to providing needed services to caregivers.  In addition to our monthly support group, we will be providing teleconferences and webinars geared to caregivers.  Check SHARE's website, subscribe to our e-newsletter or ask for a Program Guide to be mailed to you.   

 

CAREGIVER SUPPORT GROUP:
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: Feb 12, Mar 12, April 9 6:00-7:30PM

METASTATIC SUPPORT GROUPS AND HELPLINE INFO

 

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

 

TELEPHONE SUPPORT GROUP:  Every Monday, 4-5 PM Click HERE 

 

IN PERSON DAYTIME SUPPORT GROUP: Second and Fourth Thursday of the month.  12-1:30 PM  Feb: 14, 28 Mar: 14, 28, Apr 11, 25.   Click HERE  for more information. 

 

IN PERSON EVENING GROUP: LIVING WITH UNCERTAINTY
has a new format.  Join Beth Taubes RN, on Thursday March 7 from 6 - 7:30 PM with your friends, family and caregivers to learn about how Metastatic Breast Cancer Affects All of Us. Light refreshments will be served. See more on this below.  
Thursday March 7, 2013 6-7:30 PM. Click HERE.  

 

 

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.   

ProgramsConferencesUPCOMING PROGRAMS & CONFERENCES

 

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

  

How Metastatic Breast Cancer Affects Us All  Join Beth Taubes RN, OCN, CBCN, and clinical practice manager at The Women's Oncology and Wellness Practice in NYC. This program will be an informational and social evening for those living with metastatic disease and those living with and loving them.  SHARE Main Office: Thursday March 7, 6:00-7:30 PM

The Pink Elephant Series: Facing Loss
Young Women and Breast Cancer: The Pink Elephant Series: FACING LOSS
    

This series will start the conversation no one wants to have. Women cope daily with loss that comes hand in hand with a diagnosis of breast cancer. We will look at personal loss as well as what the overwhelming and continued loss of friends in our cancer communities.  

 
Ruth Bolletino, is a psychotherapist in private practice in New York City specializing in work with people dealing with life-threatening illness, loss, trauma and bereavement. Dr. Bolletino trained extensively with Elisabeth Kubler-Ross and then with Lawrence LeShan with whom she has worked as a colleague since 1990. In 1991 she herself was diagnosed with cancer, and since 1991 has been cancer-free.  This program made possible through a grant from the Beth C. Tortolani Foundation.

SHARE Main Office: Thursday Mar 21, 6:00-7:30 PM
 
The Pink Elephant Series:  RECOGNIZING LOSS  

Lee Miller, Founding member of SHARE, Bereavement Counselor and Director of Special Projects at SHARE will continue the conversation started with Dr. Bolletino.  Lee will lead a discussion allowing participants to acknowledge the many losses associated with breast cancer that many pretend do not exist.  Lee has the amazing ability to talk about the most difficult things with ease, grace and humor.  Women with all stages of cancer are welcome to attend this special program.
Thanks to the Beth C. Tortolani Foundation, this program is available free of charge to those who need it. 
SHARE Main Office: Thursday April 18, 6:00-7:30 PM
 
Promising Experimental Treatments for Women with Metastatic Breast Cancer  Dr. Tiffany Traina from MSKCC will be discussing two drugs (already approved for prostate cancer) for androgen positive metastatic breast cancer.  Seventy five percent of all breast tumors have androgen receptors.  Enzaludamide is in phase l trials for ER positive and negative and HER2 positive tumors.  Bicalutamide is in a Phase ll trial fro Triple Negative Metastatic Breast Cancer.
SHARE Main Office: Thursday Apr 25, 6:00-7:30 PM 

FOR MORE SHARE PROGRAMS,  CLICK HERE     

VolunteerVOLUNTEERS
Interested in being a Helpline Volunteer or Peer Referral? 

Helpline training is available to give you the skills to help others.  Contact Donna Faranda for more information.

Mission ABOUT SHARE 

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.   


Sincerely,

Christine Benjamin LMSW
Breast Cancer Program Director

 Cbenjamin@sharecancersupport.org  

212-937-5586