Nearly 60 patients, caregivers, doctors, and researchers from 16 states gathered at our Chordoma Community Conference at MD Anderson Cancer Center in Houston last October to learn about the latest advances in chordoma research and treatment, and connect with others who share similar experiences. They were treated to presentations from over a dozen chordoma specialists on topics that ranged from new surgical and radiation techniques to trends in pain management and rehabilitation to the latest drug development efforts.
Videos of these presentations are archived and available on our YouTube channel. We encourage you to watch and share these videos and appreciate your help in spreading the word to anyone else who may benefit from their content.
To get you started, below are five key takeaways heard onsite, and the videos where you can find them.
#1: “The best patient outcomes are only achieved when the best quality surgery occurs as part of a carefully constructed multidisciplinary management plan.”
– Franco DeMonte, MD – Vice-Chairman of the Department of Neurosurgery, The University of Texas MD Anderson Cancer Center
In this video, Dr. DeMonte offers an overview of chordoma, including the latest statistics about prevalence and presentation, the evolution of surgical approaches over the past decade, and the importance of multi-disciplinary medical teams in providing patients with the best possible care.
Referencing a new Acta Neurochirurgica journal article co-authored by himself and several colleagues at MD Anderson, Dr. DeMonte explains how new research has shown that initial treatment of patients with skull base chordoma by a multi-disciplinary care team results in significant improvement of progression-free survival.
In a sentiment shared and repeated by many throughout the conference, he goes on to explain that when data, insights, and personal observations are shared, patients get better care – period.
#2: “For proton therapies, one of the success stories has been chordoma.”
– David R Grosshans, M.D., Ph.D. – Associate Professor, Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center
In this video, Dr. Grosshans, a radiation oncologist who primarily treats patients with skull base tumors, talks about how proton therapy works, and why it offers excellent local control for skull base chordomas. Because chordomas need high doses of radiation, he explains, the ability of protons to kill tumor cells while sparing surrounding healthy tissue has made it a preferred treatment.
From the introduction of stereotactic radiosurgery to a discussion of the merits of carbon ion therapy, evolving radiation techniques for both initial and recurrent tumors were a common thread throughout the meeting,
#3: “The nice thing about drug development right now is that the pipeline is more robust than ever.”
– Anthony Conley, MD – Assistant Professor, Department of Sarcoma Medical Oncology, The University of Texas MD Anderson Cancer Center
If surgery and radiation are not an option, explains Dr. Conley in this video, patients can turn to systemic therapies like those suggested in the National Comprehensive Cancer Network (NCCN)® Clinical Practice Guidelines. Though current options – such as imatinib or erlotinib – are not sufficient for every patient, several clinical trials studying promising new treatment options for patients with recurrent or advanced disease launched this year, opening the door to new possibilities.
Dr. Conely recommends, as does our Medical Advisory Board, that, whenever possible, patients with advanced disease start by considering a clinical trial. To find a list of all clinical trials currently enrolling chordoma patients, along with brief summaries and eligibility criteria, go to chordomafoundation.org/clinical-trials.
The Foundation also recently released a new resource designed to clarify the options that are currently available through off-label prescription and clinical trials.
#4: “Pain is inevitable. Suffering is optional”
– Haruki Murakami – Japanese author
This quote was shared by Dr. Carlos Roldan, an anesthesiologist and pain specialist at The University of Texas MD Anderson Cancer Center, in describing how chordoma patients and their care teams can integrate pain management strategies into their treatment plans to improve quality of life.
Covering topics such as the role and value of palliative care, the introduction of “prehab,” and the importance of exercise, Dr. Roldan explains in this video the body mechanics of chordoma, and the various options for addressing pain and discomfort.
From medical intervention to physical therapy to rehabilitation to psychological counseling, Dr. Roldan, and later, Dr. Jack Fu, a palliative care and rehabilitation specialist at MD Anderson, shared recommendations for how to plan for and address the pain that can be expected with chordoma treatment.
#5: “Brachyury is essential in chordoma, and we’re aiming to target it and turn it off. ”
– Charles Lin, PhD – Assistant Professor, Molecular and Human Genetics, Baylor College of Medicine
In this video, Dr. Lin talks about how his lab at Baylor University College of Medicine is working to directly target brachyury, a key genetic driver of chordoma. “We know that chordoma forms in the notochord and that brachyury is a key driver,” he said, “so our lab is focused on working to turn off brachyury by figuring out what keeps it on.”
Sometimes called an “un-druggable target,” because it has no obvious active site, Lin argues that Brachyury has several binding sites onto which a small molecule can be attached, halting chordoma growth. If successful, he notes, this will have extensive consequences for the chordoma genome.
Hear the latest advances in chordoma treatment and research at the International Chordoma Community Conference March 23-24
Registration is now open for our 2018 International Chordoma Community Conference in Boston this March. This biennial event brings together patients, caregivers, and loved ones from around the world to face the unique challenges of chordoma together. Our new, one-and-a-half-day format will offer presentations from leading chordoma experts about the latest advances in treatment and care, practical advice for navigating life with chordoma, support groups, roundtable discussions, social events, and more.