In this webcast, Executive Director, Norman Scherzer walks attendees through his Personal GIST Survival Plan in order to guide patients in managing their own GIST care. It touches on important subjects in patient survival, such as retaining control of your own life, finding the right doctor, creating a support network and gaining an understanding of your disease.

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Norman J. Scherzer
Executive Director
The Life Raft Group

The GIST Collaborative Tissue Bank is a partnership between twelve internationally-renowned GIST researchers and the Life Raft Group’s Patient Registry.  This cutting-edge project allows researchers to have access to GIST tissue linked to a patient’s GIST clinical history. The project promotes the sharing of tissue derived from paraffin tissue blocks as well as the data generated by the researchers studying the tissue. The Stanford University School of Medicine is serving as tissue repository and data host through its Tissue Microarray website (http://tma.stanford.edu).

Dr. Matt van de Rijn and Dr. Rob West of the Stanford University School of Medicine discuss how the GIST Collaborative Tissue Bank came to be and its potential impact on GIST research. Norman Scherzer, Executive Director of the Life Raft Group, talks about the patient’s role in accessing and donating tissue and how patient-provided clinical histories provide a key puzzle piece in the search for a cure. An opportunity for questions will be available at the end of the webcast.ax

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Sunitinib (Sutent) is a promising new drug that is being used frequently for GIST patients, especially for those who may have progressed on Gleevec or who could not tolerate its side effects.  However, there have been reports about a high degree of hypertension and in some cases heart failure. Many of the symptoms of heart failure are difficult to discern in the presence of cancer and chemotherapy. Lenihan will discuss the importance of following daily blood pressure recordings and other approaches to cardiac monitoring and treatment while on Sutent therapy. He will also present recent data on these approaches, as well as suggestions on how cardiologists and oncologists can effectively work together to ensure best outcomes.

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Dr. Dan Lenihan
Director of Clinical Research
Department of Cardiology
M.D. Anderson Cancer Center

Since 2002, Gleevec has been the standard of treatment for GIST patients, but as we learn more about this oral cancer therapy, new information surfaces. Recent preliminary data indicates there may be a strong association between Gleevec dosage and progression-free survival. Plasma testing (or blood level testing) is an emerging area of interest for the GIST community to learn more about this association. This testing is available in the United States and is becoming more available in other countries.

Dr. Michael Heinrich of Oregon Health and Science University will delve into the role of plasma testing, its logistics, who might benefit from this testing, and how to interpret the results.

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The introduction of new drugs such as Gleevec and Sutent, which target specific mechanisms involved in GIST, has resulted in remarkable improvements. Despite this success, a significant number of patients treated with these drugs will develop dermatological side effects, such as hand foot syndrome, dry skin, hair loss, and rashes, which lead to decreased quality of life and inconsistent drug administration. All of which may affect a person's sense of well being and clinical benefit. Therefore, attentive dermatological care is critical for the optimization of GIST therapies and quality of life.

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Dr. Mario Lacouture
Director of Cancer Skin Program at
Northwestern University

Families battling GIST know how hard it is to wage a war against a rare disease. While the advent of oral targeted cancer therapies brought remarkable progress in treating GIST, resistance to these treatments has become an increasing problem. LRG launched its Pathway to a Cure research program in 2006 to identify ways to overcome resistance and to find a cure for GIST.  This research effort, based on a carefully thought out 5-year strategic plan and featuring a world-class research team, is on a track to identify new treatments and to find a cure for GIST. This webcast will provide an overview of the LRG’s innovative research program and introduce a new initiative that will focus attention on those fighting cancer and provide a way for everyone to take action to accelerate the search for a cure.

We will notify you when this webcast has been rescheduled.

The diagnosis of a rare cancer such as GIST can lead to concerns about inheritance. A parent with GIST may worry about their children’s risk to develop a similar cancer. Children who have the experience of living with a parent or other family member with GIST may wonder if they, too, are fated to develop cancer. Concerns center on clarifying the risk for susceptibility to GIST, whether steps should be taken to detect GIST in those family members who carry risk, and whether prevention options exist.

These issues are addressed by reviewing research findings on hereditary GIST and the implications and limitations of this information for guiding testing and screening. An overview of the role for current and future research in expanding our knowledge will be provided in this webcast, as well as anticipated implications for future prevention and treatment options.

For more information about Project FLAG, please visit:http://projectflag.org/

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In 2000, a very effective new drug, STI571 (now known as Gleevec), became available to GIST patients in clinical trials. With no other effective therapy for metastatic disease, nearly two thousand GIST patients entered clinical trials within the next two years. This introduced GIST patients to the world of clinical trials in an unprecedented manner.

Join Jim Hughes, LRG Clinical Trials Coordinator, as he explains the different types of clinical trials available to GIST patients. He will explore the various characteristics of trials and discuss the decision making process. He will also demonstrate the tools available on the Clinicaltrials.gov, Cancer.gov, and Life Raft Group websites that can help patients in their search for the right trial for them. The latest clinical trial newsfrom ASCO will also be briefly covered.

Trials are not just for resistant GIST. There are trials for all phases of treatment (including before Gleevec).

*Jerry Call, LRG Science Coordinator, participated in the Question & Answer section of this webcast.

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Dr. Lee Helman, the Director of the Pediatric Oncology Branch of the National Cancer Institute, and Dr. Alberto Pappo, Pediatric Oncologist of Texas Children’s Cancer Center, discuss a new initiative for pediatric GIST patients.

This webcast gives you an opportunity to learn about a new NIH-based clinic scheduled for June 19, 2008. Doctors for the first time in history will come together to explore pediatric GIST hands on in hopes of discovering viable treatment options for these patients. Logistics about the event will be discussed by Dr. Helman. Dr. Pappo will present and discuss valuable information about the genetic and clinical elements of pediatric GIST.

We are honored to have Ashley Young and Jacqui Bromberg, Life Raft Group pediatric GISTers and Co-chairs for the NIH Clinic Planning Committee, moderating this session (Note: Jacqui was unable to moderate this session but we want to thank her for her continuing dedication in planning the NIH clinic).

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The Life Raft Group maintains a comprehensive database to track medical trends in GIST treatment. We recently published a long-term study that examined GIST patients’ overall survival since starting Gleevec. Optimal Gleevec dosage was the primary focus of this study.

This webcast will help you gain more understanding of our study and review the data collected and the impact this research has on the wider GIST community.

This webcast presents critical data that will greatly affect GIST treatment!

To review the published data on the research study, please Click Here.

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Multi-modality therapy is generally the most effective therapeutic approach in cancer. While tyrosine kinase inhibitors have dramatically changed the outcome for patients with GIST, the optimal combination of surgery and molecular therapy for both primary and metastatic GIST has not been determined. In terms of primary GIST, we have performed 2 national intergroup studies to examine the benefit of taking imatinib mesylate after surgery. With regard to metastatic GIST, we are studying the benefit of surgery in patients who have responsive or stable disease while on a tyrosine kinase inhibitor. In this presentation, I will discuss the use of surgery and tyrosine kinase inhibition in primary and metastatic GIST.

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Dr. Ronald P. DeMatteo
Surgeon at Memorial Sloan-Kettering Cancer Center

Many GIST patients have questions about eating a healthy diet after being diagnosed with GIST, whether it is relative to taking Gleevec, Sutent or recovering from surgery. For those lost in the maze of scientific information, this presentation aims to simplify the principals of sticking to a healthy diet.

Alice Sulkowski will address the basic ingredients of maintaining a healthy diet for GIST patients and strategies for managing nutrition problems and concerns during and after treatment.

Eating well will help patients regain their strength, rebuild tissue, and feel better overall. By the end of this webcast, you may decide to change what you eat.

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Monica Davey shares a comprehensive approach to side effects management:

Gleevec and Sutent are powerful anti-cancer drugs. They have both beneficial and negative effects. For most people the benefits far outweigh the negative effects.

However, side effects can have a negative impact on every day life. Learning how to manage side effects or in some cases, how to live with them, not only improves quality of life, but it also allows patients to be able to take these drugs at the proper dose
and schedule, which is key to successful treatment.

This webcast will discuss the potential side effects for Gleevec and Sutent. It will begin with an overview of the side effect profile of each drug followed by a more in-depth discussion of each side effect and its management. The special challenges of drug delivery and compliance will also be addressed.

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Presented by Drs. Chris Corless and Mike Heinrich from Oregon Health and Science University.

In July 2007, new GIST treatment guidelines
were published in the Journal of the National
Comprehensive Cancer Network. For the first
time, a panel of GIST experts strongly encouraged
mutational analysis for some GIST patients.
Join Dr. Michael Heinrich and Dr. Christopher
Corless as they demystify mutational analysis.
Dr. Heinrich and Dr. Corless and their labs at
Oregon Health and Science University are pioneers
in mutational analysis for GIST and other
cancers.

One day, cancer therapy will be individualized
for each patient. Mutational analysis, although
still an early step, is one of the most predictive
methods in current use.

Join Dr. Heinrich and Dr. Corless as they explain what mutational testing for GIST can and can not do.

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Life Raft Group members David Josephy PhD, and Jerry Call gave a presentation on the basics of GIST. David is a Professor at the University of Guelph in Ontario where he teaches Biochemistry. Jerry is the Science Coordinator for the Life Raft Group and both are on the LRG Science Team.

In this webcast, David and Jerry gave patients a basic understanding about the biology of GIST. Armed with this knowledge, it will be easier for patients to grasp the sometimes difficult concepts that they might be exposed to in the future.

Starting with a brief history of GIST, the presentation also touched on how GIST differs from common cancers. Included with the basic biology of GIST was the gene mutations that cause GIST and how understanding the biology has led to new treatments. The important role of the pathologist was highlighted including a discussion about how pathologists determine the risk of a GIST recurrence. The presentation included an introduction to how cells communicate and in the case of GIST, what happens when this communication goes awry.

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Dr. Trent’s presentation answered some basic questions that many GIST patients and their families have about GIST. He talked about Gleevec for metastatic GIST as well as for preventative treatment after surgery. He also answered questions about dose, side effects, measuring response, genotyping, likelihood of response to Gleevec and duration of treatment.
Dr. Trent also discussed options for managing Gleevec resistance. These options vary according to the type of resistance, local or widespread, and include other drugs, surgery, hepatic artery embolization, and clinical trials.

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Dr. Corless’s presentation answered questions that many GIST patients and their families have about the value of Mutational Testng in treating GIST. His presentation is easy to understand and follow, his explanations are direct and concise that any patient is able to easily understand the process, how important and vital it is in Treating GIST.

The GIST Collaborative Tissue Bank is a partnership between twelve internationally-renowed GIST researchers and the Life Raft Group's patient Registry. This cutting-edge project allows researchers to have access to GIST tissue linked to a patient's GIST clinical history. The project promotes the sharing of tissue by the researchers studying the tissue. Oregon Health Science University performs the mutational analysis and Stanford University School of Medicine is serving as tissue repository and data host through its Tissue Microarray.

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