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    Posted: May 10 2011 at 5:03pm
Dear all,

I recently attended a Living With Metastatic Breast Cancer conference in Philadelphia by LBBC (Living Beyond Breast Cancer). 

I think LBBC did a marvelous job with this conference and I also feel we owe a great debt of thanks to the Komen organization for their sponsorship program which enabled over 100 women to attend the conference through a special grant program for those who would have had to struggle financially to attend. Thank you Susan G. Komen for the Cure.

I believe this was the 5th annual conference and there will be another one next year and I would urge anyone who would like to attend to do so. The quality of the speakers was excellent and especially the different workshops were important but the major impression I had was a feeling of hope that was pervasive.

The women I spoke to were all very intelligent, very realistic and were there to learn and to share with each other. I had some absolutely wonderful conversations with many women and heard their stories and was so impressed with their courage, spirit and smarts. One woman, who was volunteering her time at a booth is a 20+ Stage IV survivor and yes she has gone through hell with multiple surgeries and chemo treatments but she is here.

Having just lost a friend, dear to many of us here, last week and others over the last months I know that sometimes nothing seems to work. To be honest, I am still reeling from those tragedies. But I heard a lot of other stories where, at least, disease has been somewhat stable for years. In the Metastatic Breast Cancer Stage IV world there is no cure, so ‘stable’ is, often, about as good as it gets. One survivor who spoke said “I have learned to not fear the thunderstorms but to learn how to dance in the rain.” I keep hearing her words and they continue to resonate with me. I am always telling folks with cancer, to, “try to find the beauty in each day” and I think her advice is the same, expressed a bit differently.

I attended two workshops and felt they were both excellent. One was on brain mets and was led by Dr. Carey Anders at UNC. She is the Principal Investigator of a new clinical trial for TNBC women with brain mets. She explained that one of the main sites for metastasis for TNBC is the brain and there are no FDA approved drugs for brian mets. One of the major problems is that many chemotherapies do not penetrate the ‘blood-brain’ barrier. She went over several that do and her clinical trial combines a parp inhibitor, INIPARIB and Irinotecan, an approved drug for other cancers. There are 11 sites open around the country now. I am not suggesting that anyone here with brain mets join these trial. I am not a medical professional but I would suggest you speak to your oncologist about it and if your oncologist would like to speak to Dr. Anders I have her contact information. If any patient wants information you can call Madlyn at UNC. I spoke to her yesterday and she has been an oncology nurse for 30 years and is very experienced and has a beautiful heart as well. 

Madlyn Ferraro, RN, OCN, CCRC

Network Coordinator

UNC Cancer Network

Clinical Protocol Office

Lineberger Comprehensive Cancer Center

University of North Carolina at Chapel Hill

3rd Floor Administrative Tower, CB 7295

Chapel Hill, NC 27599-7295

phone: 919-966-7359

pager: 919-216-1693

Fax: 919-966-4300

Here is the link to the trial on

Also, please note that in January sanofi announced that INIPARIB in combination with Gemzar and Carboplatin did not meet its endpoints for first-line patients and first-line patients can no longer join the Expanded Access Protocol (EAP) but it is my understanding that if you had the EAP trial and it was not effective for you it does not exclude you from the INIPARIB--Ironotecan trial. Again, I am not a medical professional so please do not rely on anything I say. If your oncologist is interested he can contact the folks at UNC or at any of the other sites where the trial is being offered.

As an aside, I spoke again with Dr. Anders at the conference and I am so impressed by both her knowledge and her heart. There is, in my opinion, a patient-centered, caring culture at the Lineberger Cancer Center at UNC-Chapel Hill that is very profound. I have met Dr. Lisa Carey and Dr. Chuck Perou there. They are both deeply enmeshed in research regarding TNBC and also Dr. Carey is a medical oncologist, as is Dr. Anders. Again, they do not possess a magic wand but are working hard to unravel some of the mysteries.

On Sunday, I attended Dr. Cliff Hudis’ presentation on TNBC. He did an excellent job in explaining things to a lay audience and patiently answered our questions. One of the things that has been troubling many of us is that, in recent years, scientists have identified the fact that TNBC is not just one disease but has many subtypes. We have been wondering why in addition to testing for HER2neu, PR and ER further testing e.g. to see if the tumor was basal-like was not being done currently. Dr. Hudis explained that, in his opinion, we need clinical trials to prove that doctors can actually use this information to select more effective treatment options.  For example, they would need better evidence that a certain chemotherapy will show some efficacy in treating a basal-like TNBC tumors, as opposed to other chemotherapy options. In other words the treatment will drive the use of pathologic testing rather than testing all tumors and then wondering how to use the information that results. Since the conference I have found e.g. several clinical trials examining basal-like tumors.

Here is one-

ABT-888 in Treating Patients With Malignant Solid Tumors That Did Not Respond to Previous Therapy
This study is currently recruiting participants.
Verified on January 2010 by National Cancer Institute (NCI)

First Received on May 1, 2009.   Last Updated on October 30, 2010   History of Changes
Sponsor:University of Pittsburgh
Collaborator:National Cancer Institute (NCI)
Information provided by:National Cancer Institute (NCI) Identifier:NCT00892736


(the italics below are mine-)


  • Establish the maximum tolerated dose, dose-limiting toxicities, and recommended phase II dose of chronically dosed, single-agent ABT-888 in patients with refractory BRCA1/2-mutated malignant solid tumor; platinum-refractory ovarian, fallopian tube, or primary peritoneal cancer; or basal-like breast cancer.

Again, I feel Dr. Hudis did an excellent job at the workshop and Memorial Sloan-Kettering Cancer Center in NYC is a center of excellence regarding research, treatment and the clinical genetics of breast cancer. Dr. Hudis is Chief, Breast Service Medicine Service which has 18 Breast Medical Oncologists in the dept. 

These workshops were an excellent way to meet expert oncologists in an intimate setting and both Drs. Anders and Hudis made us feel welcome and our questions were answered thoroughly and patiently. A wonderful experience from my perspective and the women I spoke to regarding several of the other workshops were enthusiastic about them as well.

It was a bit frustrating that there were so many concurrent sessions but the podcasts will be helpful. That is the nature of most conferences and the next one I will attend ASCO in Chicago will be even more difficult to navigate. 

So, thank you LBBC for this wonderful conference and thanks again to Komen and the other sponsors. I would encourage all of you to watch the podcasts that should be out soon and I will post when the next conference is scheduled. Special thanks to Elyse Spatz Caplan, director of Programs and Partnerships and the wonderful staff at the event. Everyone was super helpful, friendly and professional.

all the best,


p.s. It is my understanding that there will be podcasts of all the sessions. I look forward to seeing the ones I missed. I will advise as soon as I know. Also will advise for the date for the conference next year..


Saturday, April 30, 2011


9:00 a.m. – 10:00 a.m.               Registration and Continental Breakfast


10:00 a.m. – 10:15 a.m.             Welcome and Introductions (LBBC)


10:15 a.m. – 10:45 a.m.             Plenary Session I

                                                Treating Metastatic Breast Cancer

                                                Ruth Oratz, MD, FACP


10:45 a.m. – 11:15 a.m.             Plenary Session II

                                                In the Pipeline: Understanding Drug Approval

                                                Dr. Robert Somer, MD


11:15 p.m. – 12:00 p.m.             Questions & Answers with Drs. Oratz and Somer


12:00 p.m. – 1:30 p.m.               Plated lunch, networking and visit with exhibitors


1:30 p.m. – 2:45 p.m.                Workshop Session One (see below)


2:45 p.m. – 3:15 p.m.                Break – Networking and visit with exhibitors


3:30 p.m. – 4:15 p.m.                Plenary III

                                               Support and Communication: Getting What You Need
                                               Marilyn Brine Gilmour, MSW, LICSW


4:15 p.m. – 4:45 p.m.                Questions and Answers with Ms. Gilmour


4:45 p.m.                                 Closing remarks


5:00 p.m. – 6:00 p.m.                Networking reception


Sunday, May 1, 2011


8:30 a.m. – 9:00 a.m.                 Continental Breakfast


9:15 a.m. – 10:30 a.m.               Workshop Session Two (see below)


10:30 a.m. -11:00 a.m.               Break


11:00 a.m. – 12:15 p.m.             Closing Plenary Session (see below)
                                                Ask the Expert: Managing It!


12:15 p.m. – 1:00 p.m.               Closing Networking Reception


Workshop Session 1

Saturday, April 30

1:30 p.m. – 2:45 p.m.


Workshop A. Brain Mets

                    Carey K. Anders, MD, FRCPC


Workshop B. Eating Well for Feeling Good

                    Katrina Claghorn, MS, RD, CSO, LDN


Workshop C. Close-Up on Neuropathy

                    Steven C. Cohen, MD


Workshop D. Creating Your Stress Reduction Toolbox

                    Marilyn Brine Gilmour, MSW, LICSW


Workshop E. Taking Control: End-of-Life

                    Terri Altilio, LCSW, ACSW


Workshop F. Care for the Caregiver: Understanding Your Needs

                    Lara Krawchuk, MSW, LCWS, MPH


Workshop Session 2

Sunday, May 1

9:15 a.m. – 10:30 a.m.


Workshop G. Bone Mets

                    Adam Brufsky, MD


Workshop H. Acupuncture

                    Mary Ellen Scheckenbachm MAc, LOM


Workshop I. Close-Up on Fatigue

                   Ann M. Berger, PhD, APRN, AOCNS, FAAN


Workshop J. Flying Solo: Managing Mets as a Single Woman

                   Helen L. Coons, PhD, ABPP


Workshop K. Doctor-Patient Communication: Making Treatment Decisions

                    Rick Michaelson, MD


Workshop L. Triple-Negative Metastatic Breast Cancer

                    Clifford A. Hudis, MD

Ask the Expert Panel: Managing It!

Sunday, May 1

11:00 a.m. - 12:15 p.m.


  • Helen L. Coons, PhD, ABPP
  • Clifford A. Hudis, MD
  • Spencer Rand, Esq.
  • Mary Ellen Scheckenbach, MAc, LOM
  • Woman Living with Metastatic Breast Cancer (TBD)


Edited by steve - May 11 2011 at 8:59am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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