Alamo Advocates: Learn & Pay it Forward

Henry B. Gonzalez Coonvention Center

Henry B. Gonzalez Coonvention Center

December 3, 2012

All was quiet on the Riverwalk in San Antontio this morning.

Since Saturday 31 breast cancer  advocates, thanks to the generosity of the Alamo Breast Cancer Foundation (ABCF), have been arriving from across the United States, Austrailia,  New Zealand and the Netherlands for the 35th annual San Antonio Breast Cancer Symposium (#SABCS),  the premier international conference for scientists and clinicians to discuss advances in the shared mission of ending breast cancer.  I am fortunate to have be part of this group  and will report  — up close and personal — on the findings, studies, and hot topics every day.  Only at an event like this can you talk about everything in breast cancer, from molecular profiling, to evolving trends in hormonal therapies and germline polymorphisms.  It is the ultimate for science nerds, and as we all know, understanding the science is at the heart of effective advocacy.

For 15 years ABCS has provided 528 breast cancer advocates this oustanding opportunity to learn.  “What we hope is that advocates will not only relay the findings to their own organizations, to other women with breast cancer, and to their oncologists as well.   Not all oncologists can attend,” said Sandi Standford, ABCF president. “We even have one advocate who has a standing appointment with her oncologist every year after the symposium to discuss the latest findings.” Advocates are also encouraged to contact their closest NCI-affiliated cancer institution.  As part of NCI designation member organizations – by charter – must have patient adovcate representation on key committees.

That small bit of information is huge in reality.

There is nothing more powerful than a well-educated advocate, informed not only by her own experience but with a solid understand of breast cancer treatment, where it has come from and where it’s going. That’s why 31 of us are here for five fully-packed days. There are educational sessions, panel disucssions and presentations all day long. Then beginning Wednesday evening ABCF provides “Hop Topic Mentor Sessions” where physicians and researchers provide an overview of each day’s findings.

ABCF is an organization that gets behind educating women in a big way.  I’m grateful.  As I walked the streets of San Antonio this morning I couldn’t help but notice the inscription on the public library here. Considering the mission of Alamo and #SABCS, it seemed to say why we’re all here this week.

San Antonio Public Library

San Antonio Public Library


I’m ready.  Bring it!

Jody Schoger 



Day 2 and 3 at AACR

As day one ended, we began to think of what will come on day two.   The theme of the conference is “accelerating sciences:  Concept to Clinic”.   And we heard this at every presentation we attended.  I am so happy that the basic scientists are thinking the same way as patient advocates. 

A new word from me that I heard over and over is de novo.  I found out it means from the beginning, refresh, begin anew.  And that is what we are learning, we need to look at ideas the scientists had many years ago, such as immunology, virus and vaccines.  So, what the scientists are currently are doing, is using the Human Genome Project (HPG) to look at what and how they used the science years ago.  Now they are finding that with whole genome sequencing (WGS) they are able to learn more and more and that old ideas are now in some cases proving valid.  When the Human Genome Project was first completed, it took a month and $100,000 to do one sequencing, now it takes 24 hours and costs $10,000.  As these test are used more and more, they are finding that cancer is no longer a cancer of an organ, but a cancer of our genome, that certain pathways, proteins, genes are the same in many cancers.  For a while we have wondered why treatments that are for liver cancer, works well for certain subtypes of lung cancer, breast cancer, brain cancer, etc.  The prediction is that in a few years, we won’t say we have breast cancer, but we have P53 mutation cancer and our treatment will be driven by our gene mutations rather than organ type.  I am looking forward to that day! 

This morning I listened to a wonderful presentation from Amalie Ramirez, PhD, Rong Li, PhD and several other doctors about Energy and Obesity.  This was a great presentation, because Dr Ramirez had the panel begin at the beginning, in this case, molecular biology and Dr Li.  Next speaker brought it to clinical trails and then the stats were explained and final what can we do…. So, our fat cells produce energy but also are a “draw” for cancel cells, if we are obese then we have more fat cells and as such the cancer cells have more energy to grow and spread.  With the obesity on the rise in the country, they feel that cancer will be on the rise also.  And, they also found that the risk for obestiy patients is just about the same as in underweight patients.  This was a surprise to us all.  So, an increase in stromal fat cells increases aromatase and estrogen in the human body.  Currently, 1/5 of all cancer deaths (or 90,000) a year are associated with obesity.  Another problem discovered is that most treatments are based on white women (they are the ones who are in clinical trials the most) rather than all races.  Since we are all different, what works for white women may not work for Hispanics or African-Americans.  What is shown in mice is that cycr4 expresses in colon, kidney, prostate and breast cancer and migrates into the fat tissue and around the organ so that the treatment drug can’t kill the cancer.  This is also shown in bone fat cells.  The take home message was that fat cells fuel the cancer, so everyone should be aware of their weight, bmi, etc. 

Do you know that 62,000 DNA patents have been issued in the United States?  I was shocked by that number!  But, since 2007 direct to the public DNA tests have been available.  Today there are several websites and companies that will do a genetic breakdown for you (of course for a large fee), from finding paternity, to whole genome tests.  Some of these companies are 23andme, decodeMe, Knome.  Now the question is who ownes these genes that have been discovered.  This is a question for the lawyers. 

Again today we heard again and again, This is the End of the Beginning.  I love that because we are making progress.  Now to just get the scientists, translational scientists and oncologists to work together for a total treatment option for each patient.  So our future is looking promising and all of the doctors I heard and saw talking are very excited about the future and an end to cancer!

The photo was taken at the AACR Presidential Reception.  The group of advocates are with outgoing AACR President, Dr. Judy Garber. 




What is “The Walking Gallery”?

Post by Kathi Apostolidis – Breast Cancer & Patient Rights Advocate

Voluntary Sector Consultant & Health Commentator



The “Victim of the Game” was tucked warmly under my coat when I arrived on freezing Monday evening at the orientation meeting of the patient advocates making the class of the advocacy training ABCS2011. I arrived a bit late so everybody else was seated, I took off my coat and watched the others peek carefully on my back. No one said something, although I felt the eyes of those behind me staring at the artwork on my back.

At the dinner, my neighbour a young lady from Wisconsin, dared to remark that my jacket has a “nice” artwork …I said it’s nice indeed but it’s not the important about it. The important is the message it carries which is “Patients need medicines for treatment and pharma cannot keep patients hostages in their negotiations with the government over overdue debts”. She was surprised, and apparently did not grasp all the implications of the story…. She then moved on to ask whether I had painted it myself, I answered no and that a patient rights art advocllate in Washingto n DC, had painted it for me,  she was completely puzzled: a Greek  lady wearing a jacket with a specific healthcare message painted by another patient rights advocate in Washington…
The next morning, at the LEAD Project Seminar, another patient advocate, who also paints, asked me “Kathi what’s the painting on your jacket?”, and when I explained “it’s healthcare advocacy artwork and storytelling by patient rights art advocate Regina Holliday from Washington, DC”  I saw the surprise in her face. How come, you get connected with an artist advocate and had the jacket painted…The same went on the whole day. In the afternoon we had an IBC-Inflammatory Breast Cancer Meeting, the most strange form of cancer(?), a very difficult disease, at which I had the opportunity to meet in person the famous Dr. Massimo Cristofanilli, about whom I have heard so many stories from my friend and colleague Vassilis and Dr. Naoto Ueno, who was one of the first doctors I had followed on twitter, the well known under his twitter handle @teamoncology . 

After the meeting the IBC ladies wanted to know more about my jacket!, we took pictures you may see here. They were excited wearing their white lab robes with the IBC embroidery but thought to mov, embroidery higher up and you guess what: have their own stories painted underneath!

So, I will unveil here the mystery of the artist: Regina Holliday, was just a working mother of two boys, and she and her late husband Fred went through an ordeal: Fred suffered from renal cancer but no one in the ERs he visited had a closer look, they sent him home with aspirin!!!

Regina became a patient rights art advocate out of need to support her husband, even when it was  too late!!. She used her talents in art and storytelling for translating into powerful tell-tale art and stories, the individual stories of patients whom she meets at conferences. Her masterpiece is the 73cents  in which she transformed her sorrow into the picture of her family tragedy during Fred’s hospitalization.

Wonder what’s the Walking Gallery? c  and if you like to see the 107+ jackets pyou painted till now, you don’t need to get dressed and visit an art gallery, it’s here right under your figertips TheWalkingGallery.

Every jacket has its own story and ok I suggest to read them all!!! they are so empowering, written with great empathy and insight that they could, as I have already suggested to Regina, to make a book of them!

The Victim of the Game tells the story of Greek and patients in other countries, hit by economic crisis, who were held hostages of pharma in their negotiations with the government over outstanding debts.

I am proud to wear my Jacket here in San Antonio at the #SABCS and hope next time I come to meet many jackets walking around in this big conference and tell their stories because The Patient’s Voice Can Be a very Powerful Tool”.

 “And it don’t matter who you are: 

It treats everyone the same. 

All you need’s a heart

To be a victim of the game.”

Endocrine Therapy, the Theme for the Day

By Carolyn Charkey, Y-ME National Breast Cancer Organization and 2011 Alamo Scholar.
While there were several SACBS special meetings and sessions today that dealt with other important topics, the primary focus of the main sessions was Endocrine Therapy and issues important to the diagnosis/treatment of ER+/PR+ breast cancer. The Plenary Lecture was given by Eric P. Winer, MD, Dana-Farber Cancer Institute, Boston, MA. He opened the morning general sessions with an enlightened look into the state of treatment, where we are, then a glimpse into the future, what is coming, what we can expect and how what we have learned is propelling us into the future of diagnosis and treatment. In the age of indivisualized medicine, doctors and patients alike can expect change to be the order of the day.

From today forward, a breast cancer patient can expect, not hope, that there will be advances on the plate and on the horizon that will paint a better picture for her future. Today drugs that were developed for one specific use is studied further and the “rules can change.” Presentations throughout the morning highlighted advances that significantly improve overall survival rates with existing drugs and in new combinations. Other highlighted research projects and clinical trials introduced new studies and follow-up reports on earlier studies that also show improved patient outcomes.

During an early morning presentation on cancer genomics, Dr Joe Gray of OHSU Knight Center and Dr. Danny Welch of Kansas University Cancer Center presented a Special Interest Educational Session on the Biology of Breast Cancer and an Update on Metastasis Research. In lay language, they presented to advocates a series of complicated research terms and processes that made the world of research on breast cancer understandable enough to help advocates explain what happens when cells grow and divide into cancerous cells and how the new technologies available to researchers and clinitions has sped up the process of research, detection and treatment, thus offering patients not only hope, but a future.

More later about this day, but remember you can go online after the Symposium is over and find details on many sessions and topics on the Alamo Website, The SABCS Website and the Y-ME Website. Stay Tuned.