GIST Summit September 22, 2012!
at  M D Anderson Cancer Center, Houston, Texas

Our 4th Annual GIST Summit, jointly hosted by GIST Support International and M D Anderson Cancer Center, was fantastic!  This all-day, free-of-charge annual event is open to patients, caregivers, friends, family and all who have an interest in GIST.  GIST Summit 2012 was again generously sponsored by a grant from Novartis Oncology.

You can watch videos  of GIST Summit 2012 by linking from the program table below.

Scroll below the program listing for PHOTOS and a STORY about GIST Summit 2012.



8:00 am  Registration and Breakfast
9:00 am  Welcome
 Ronald A. DePinho, MD
President, The University of Texas MD Anderson Cancer Center
Watch Video
9:20 am  GIST 101 plus Understanding Your Pathology Report
 Alexander Lazar, MD PhD
Associate Professor,Dept. of Pathology/Lab Medicine
The University of Texas MD Anderson Cancer Center
Watch Video  View Slides 
10:10 am  Coffee Break nbsp;
10:30 am  Advances in Surgery & Radiological Interventions for Advanced Disease
 Kelly K. Hunt, MD FACS
Professor, Dept. of Surgical Oncology
The University of Texas MD Anderson Cancer Center
Watch Video  View Slides
11:20 am  Managing Metastatic Disease
 Jonathan C. Trent, MD PhD
Director of Sarcoma Medical Research Program,
Professor of Medicine
University of Miami Health System
Watch Video  View Slides
12:30 pm  

Filming – Patient testimonials
Poster Display – Q&A with Presenters


Diagnosis and Initial Evaluation of Patients With Gastrointestinal Stromal Tumor (GIST): An Observational Study of 1226 Patients
Jonathan C. Trent, Margaret von Mehren, Peter Pisters, Charles Blanke, Joel Picus, Christopher Keir, Andrea Magley

Dasatinib first-line treatment in GIST: Multicenter phase II trial of the SAKK (SAKK 56/07)
M. Montemurro, J. Domont, A. Blésius, P. Rutkowski, A. Roth, R. von Moos, R. Inauen, B. Bui, R. Burkhard, C. Knuesli, S. Bauer, P. Cassier, H. Schwarb, A. Le Cesne, D. Koeberle, V. Dunet, D. Dietrich, C. Biaggi, J. Prior, S. Leyvraz on behalf of Swiss Group for Clinical Cancer Research SAKK13

ETV1 is a lineage survival factor that cooperates with KIT in gastrointestinal stromal tumours
Ping Chi, Yu Chen, Robert Maki, Cristina Antonescu, Deyou Zheng, C. David Allis, Charles L. Sawyers

An Investigation of miRNAs in the Pathogenesis of Paediatric/Wild-Type Gastrointestinal Stromal Tumour
Lorna Kelly, Kenneth Bryan, Su Young Kim, Maria Debiec-Rychter, Maureen O’Sullivan

Phase I trial of panobinostat (P) and imatinib (IM) in patients with treatment-refractory gastrointestinal stromal tumors (GIST)
Bauer S., Hilger R., Grabellus F., Nagarajah J., Hoiczyk M.,Reichardt A., Ahrens M., Pink D., Mühlenberg T., Scheulen M., Schuler M., Reichardt P.

Preliminary Report of Crenolanib in the Treatment of Advanced Platelet Derived Growth Factor A (PDGFRA) D842V Mutant gastrointestinal Stromal Tumor (GIST)
M. von Mehren, M. Heinrich, E. Tetzlaff, K. Padavic-Shaller, M. Yu, C. Muralidhara, A.Ramachandran, H. Shah

Crenolanib, a Novel Type I, Mutant-Specific Inhibitor of Class III Receptor Tyrosine Kinases, Preferentially Binds to Phosphorylated Kinases
A. Ramachandran, H. Marshall, V. Jain

First in human phase I study – results of a second-generation non-ansamycin Heat Shock Protein 90 (HSP90) inhibitor AT13387 in refractory solid tumors
Daruka Mahadevan, Diane M. Rensvold, Sandra E. Kurtin, James M. Cleary, Leena Gandhi, John F. Lyons, Victoria Lock, Samantha Lewis, Murray Yule, Mohammad Azab, Geoffrey Shapiro

The Notch pathway : a new target in Gastrointestinal Stromal Tumors
Amaury G. Dumont, Dennis P. Hughes, Jonathan C. Trent

 2:00 pm Workshop Breakout Sessions

• Therapy Management
   Pat Neal, RN
The Universtiy of Texas MD Anderson Cancer Center

• Pediatric and Wildtype GIST Updates
</ strong>  Su Young Kim, MD PhD
Associate Medical Director
Bristol Myers Squibb Discovery Medicine
Watch Video View Slides

Financial and Medical Matters Faced By Caregivers at the End of Life
  Ivy Fauntleroy

 3:00 pm  New Drugs – Rationale and What is in the Pipeline
 Andrew J. Wagner, MD PhD
Assistant Professor of Medicine, Harvard Medical School
Sarcoma Department, Dana-Farber Cancer Institute
Watch Video  View Slides
 4:00 pm  Coffee Break
 4:15 pm  Paul’s Posse and the Pan-Massachusetts Challenge
 Paul Schaye
Watch Video
 4:45 pm  Ask the Experts: an open panel Q&A session
 Dejka M. Araujo, MD (chairing the panel)
Assistant Professor, Dept. of Sarcoma Medical Oncology
The University of Texas MD Anderson Cancer Center
Watch Video
 5:30 pm  Closing Remarks
 Dr. Dejka Araujo and  Dr. Alex Lazar
 6:00 pm  Dinner  

GIST Summit 2012

GIST Summit 2012 was a phenomenal success! The all-day event — which took place at M.D. Anderson Cancer Center in Houston, Texas on September 22 – provided a chance to reconnect with old friends, make some new ones, and bring ourselves up to date on GIST diagnosis and treatment through a packed program of slide presentations, workshops, and interactive Q&A sessions involving top experts in the field. The program was attended by 120 people, including over 90 GIST patients and caregivers, representing a total of 16 U.S. states and Canada.

  Dr. DePinho

Welcoming the attendees was Dr. Ronald A. DePinho, President of M.D. Anderson Cancer Center and the architect of its new “moon shots” program, which aims to dramatically improve survival rates for eight major cancers: lung cancer, melanoma, triple negative breast cancer, ovarian cancer, prostate cancer, myelodysplastic syndrome, and acute and chronic myeloid leukemia. Progress from the $3 billion effort will inevitably have a ripple effect, he told the audience — benefitting patients with GIST and other uncommon tumors in the same way that GIST research has shed light on the pathogenesis of more prevalent tumor types.


  Drs. Lazar, Araujo, Hunt, and Trent sharing a smile

Dr. DePinho was followed by an all-star lineup of physician speakers, beginning with pathologist Dr. Alexander Lazar from M.D. Anderson. Dr. Lazar, who is co-author of GSI’s “Understanding Your Pathology Report for Gastrointestinal Stromal Tumor (GIST),” gave a detailed and delightfully offbeat account of what goes into preparing tumor samples and what all those little red blobs on a stained slide really mean.

Next surgical oncologist Dr. Kelly K. Hunt, also from M.D. Anderson, used clear lay language to summarize the recent progress in surgery and radiological interventions for advanced GIST.

Dr. Jonathan C. Trent, co-founder of GISTS and Director of Sarcoma Medical Research at the University of Miami Sylvester Cancer Center, spoke next. His topic was the management of metastatic disease, and he covered it with his characteristic mix of frankness and empathy. (Dr. Trent’s sons – Jon, 17, and Charlie, 11 – with help from their cousins and friends, kept the whole summit running smoothly, registering attendees on arrival and then passing around microphones during the question periods.)

Following lunch and the filming of optional patient testimonials, attendees had a choice of three “break-out” sessions: Pat Neal, R.N. — an oncology nurse and educator who works with M. D. Anderson sarcoma patients — discussed management of side effects and other aspects of GIST therapy. Ivy Fauntleroy, widow of a GIST patient, shared her experience in dealing with a numbing barrage of medical and financial end-of-life issues. And Dr. Su Young Kim, who is Associate Medical Director of Bristol-Myers Squibb Discovery Medicine Immuno-Oncology, but better known to many patients for his outstanding work at the NIH Pediatric and Wildtype GIST Clinic, discussed recent advances in the differentiation of GISTS driven by succinate dehydrogenase deficiency from those driven by oncogenic mutations of either KIT or PDGRFA.

At this point in the program, incoming GISTS chair Ginger Sawyer approached the podium to present the first-ever GSI Medal of Honor to outgoing chair Barbara Doré. In 2008, Barbara conceived the idea of a relaxed, open forum where GIST patients could meet with experts in the field to discuss crucial issues related to their care. The first of these GIST summits involved a single medical expert – Dr. Jonathan Trent – and took place in the clubroom of Barbara’s apartment building in Houston! Barbara, whose permanent residence is London, is moving back to the U.K. this year, and GSI wanted to honor her tremendous achievement. The medal was accompanied by a substantial donation check to GSI from the patient community in Barbara’s honor. Thanks to Barbara Auw of Fayetteville, GA, for generously initiating and leading the collection drive.

The late afternoon sessions began with an overview of new GIST treatments in the pipeline, prepared by oncologist Dr. Andrew J. Wagner of the Dana Farber Cancer Institute in Boston. In addition to discussing a number of recently approved and/or experimental agents, Dr. Wagner provided a useful summary of the FDA clinical trial system — explaining the difference between Phase I, II, and III trials and exploring the circumstances under which GIST pat
ients might benefit from participating in a drug trial.

Next up was Paul Schaye: founder of a New York-based mergers and acquisitions firm, triathlete, and GIST patient. Since discovery of his tumor in 2006, Paul has been channeling his formidable energies into raising money for sarcoma research and treatment. His team of bikers, “Paul’s Posse,” rides 192 miles every summer in Dana Farber’s Pan Mass Challenge, the most successful athletic charity fundraiser in the U.S. The team, which includes oncologists Dr. George Demetri and Dr. Andrew Wagner of Dana Farber and Dr. Gary Schwartz of Memorial Sloan-Kettering Cancer Center in New York, has already raised over $1.8 million to support Dr. Demetri’s work at Dana Farber. At the conclusion of Paul’s heartfelt talk (“I don’t just survive; I thrive”), the audience was treated to a short video of the Posse in action:

The final presentation of the day was an “Ask the Experts” open panel that included Drs. Lazar, Hunt, Trent, and Wagner and was chaired by oncologist Dr. Dejka M. Araujo of M.D. Anderson, the official physician host of GISTS 2012. Audience members were encouraged to ask anything and everything on their minds, and they did – with questions about drug interactions and side effects, renal effects of TK inhibitor therapy, and other specific issues.

Closing remarks by Dr. Araujo were followed by an informal buffet dinner, at which patients and caregivers reviewed the day’s events, made practical suggestions for next year’s meeting, and exchanged contact information, hugs, and good wishes.

Throughout the long and intense program, the audience remained attentive and enthusiastic. Vanda  Lancour from Amarillo, TX summed up her response in a single word: “Awesome!” Lisa Lambdin of Wichita, Kansas posted on Facebook: “Enjoyed the day, learned a lot and met wonderful GISTers… The group gave me hope, support and good ideas about getting a second opinion and how to afford the out of state expenses.” Bill and Suzanne Caver of Mandeville, LA, wrote: “I just want to thank Ginger, Barbara and all the others who put on the summit in Houston Sept. 22. It was my first one and I could not believe such an outstanding group of doctors took off a whole Saturday to spend the day with us. I especially enjoyed the Pathology talk, and seeing Drs. Trent and Hunt again! Thank you so much.”

Special thanks go to GISTS founder Barbara Doré and Ginger Sawyer for their tireless efforts to make 2012 the best summit ever. For those GISTers who were unable to attend, videos of all the presentations will be available on the GSI website in a few weeks. And mark your calendars now for next year’s event, taking place at M.D. Anderson on September 14, 2013!


PAST GIST Summit Videos

Click to watch videos of the GIST Summits from 2009, 2010, and 2011 too!