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ACCRF Update
August 2018

Clinical Trials:  ASCO Highlights

Clinical Trials: ASCO Highlights

At the Annual Meeting of the American Society of Clinical Oncology (ASCO) in June, four clinical trials reported results in ACC patients. Two drugs performed particularly well with the best responses ever in advanced ACC patients.  
  • Phase II trials testing Lenvatinib (multi-tyrosine kinase inhibitor) in recurrent/metastatic ACC patients at Memorial Sloan Kettering Cancer Center (MSK; New York, USA) and the Instituto Nazionale dei Tumori (INT; Milan, Italy) reported a partial response in 15.6% and 11.5% of patients, respectively. Median progression-free survival ranged from 9 months at INT to 17.5 months at MSK. Although drug toxicity was common in both studies, patients reported significantly less pain at 12 months (INT study). Preliminary analysis suggests that higher MYB levels in tumors may correlate with better responses (MSK study). 
  • Preliminary results from a phase II trial of Apatinib (VEGFR-2 inhibitor) in recurrent/metastatic ACC patients conducted at Shanghai JiaoTong University School of Medicine (Shanghai, China) reported an overall response rate of 47.1%, a 12-month-progression-free survival rate of 50.7% and a 12-month overall survival rate of 96.3%. However, we expect the overall response rate to be revised downward once the final results are compiled. 
  • A phase I/II trial of pembrolizumab (PD-1 inhibitor) and vorinostat (HDAC inhibitor) in recurrent/metastatic head and neck squamous carcinoma and salivary gland cancer at the University of Washington (Washington, US) resulted in a partial response in 1 of 12 ACC patients (8%) and stable disease in 56% of salivary gland patients. Progression-free survival was 7 months and median overall survival was 13 months in salivary gland patients. 
These results have been added to ACCRF's   Past Studies webpage. Open clinical trials are listed on the Current Studies webpage. ACCRF will continue to update patients on the latest therapeutic developments.
Patient Champion: Kara Gelb
As one of the original members of ACCRF's Board of Directors, Kara Gelb helped set the tone and direction of the foundation. She combined a keen, results-oriented mind with a velvety ability to put people at ease in coming to useful solutions. And Kara demonstrated the depth of her caring by counseling many ACC patients through their agonizing treatment decisions. She could always draw upon her own experience with ACC of the trachea, neutron radiation, radiofrequency ablation, laser ablation and clinical trials to connect with other patients, calmly sharing both the technical details and emotional dimensions.
When Kara joined ACCRF as a Director in 2006, she was a Principal in GE Healthcare's clinical consulting practice where she worked to enhance the quality of hospital operations across the United States. After moving to the United Kingdom a few years later, she led the Women's Health Division of the University College London Hospitals. The unifying theme of her professional career, including her efforts at ACCRF, was to improve patient outcomes through listening, analyzing and making quality decisions. She was a wizard with spreadsheets but also understood deeply the human impact behind the numbers. During her 16 years of dealing with ACC, Kara drew strength from her husband Andrew and their two children, paying it forward to so many others.
Kara passed away on July 3, 2018. However, the impact of her thoughts, feelings and actions will always reverberate throughout the ACC patient community.
Brave Like Gabe 5K
Gabe Grunewald and Marnie Kaufman

ACC patients and their supporters converged on Minneapolis/St. Paul, Minnesota, USA, in mid-May to share their stories, get some exercise and raise funds for research. Organized by ACC patient and world-class runner Gabe Grunewald, the  Brave Like Gabe 5K race wound around beautiful Lake Como Park. In its inaugural year,  the event raised $110,000 for ACC research!
The day before the race, ACC patients gathered to get acquainted and learn from each other's experiences. Gabe shared her story of being diagnosed in 2009 and dealing with recurrences since 2016. Harnessing the iron will that led her to be the USA champion in the 3,000-meters, Gabe has dedicated herself to encouraging survivors to persevere and to promoting rare cancer research. The group also was treated to an overview of ACC research presented by ACCRF Scientific Program Officer Dr. Nicole Spardy Burr.
Kellie's Krew Run For A Cure 
For the tenth year,  Kellie's Krew  will be hosting a race in Dunn, North Carolina, USA, to support ACC research, financial aid to patients and student scholarships. This year's festivities on August 25th  will include a 5K, 10K, Color Run, lawn party and live music. This event always brings out an energetic and inspiring effort from the entire community. Patients are encouraged to attend.

To register, click here:
 Please Help Support ACC Research