ACCRF keeps a close eye on clinical trials aimed at identifying new and better treatments. In recent months, there have been some important new developments worth highlighting:

Gene Testing for Salivary Gland Cancers - The Princess Margaret Hospital (Toronto, Canada) recently opened an "umbrella" study, a type of molecularly informed clinical trial, for salivary gland cancer patients. Rather than attempt to find one drug that is effective in all patients, the study carries out tumor profiling in an attempt to identify molecular targets that are driving each patient's cancer. If such a target is found, a matched drug is provided to the patient in the hope that it will be more effective. If no such target is found, a novel drug is provided. For the moment, only Canadian patients are eligible for this study. However, the structure of this clinical trial - in which tumor profiling informs the selection of the drug - is becoming much more common. The study description is available here.

Immunotherapy - Harnessing the body's immune system to battle tumors has had a long history in cancer research. Recently, there have been some very impressive results - particularly in melanoma - using immune checkpoint inhibitors. Accordingly, many studies have been opened to investigate whether these drugs might work across many tumor types. We included one such study for salivary gland cancers on ACCRF's Current Studies webpage and it was fully accrued very quickly. The drug is Pembrolizumab (also known as Keytruda or MK-3475) and it inhibits the PD-1 molecule in tumors that reduces the body's immune response. It will take several months before preliminary results are available for the study, but we will keep the patient community informed on related developments. In addition, ACCRF is supporting research into immunologic markers in ACC tumors to identify promising approaches to applying these cancer immunotherapies.

NOTCH Inhibitors - Various ACCRF-supported genomic studies have identified a subset of ACC patients who have alterations in a related set of "NOTCH" genes (NOTCH1, NOTCH2, FBXW7, etc.). Therefore, we have listed in the third section of our Current Studies webpage three Phase I studies of NOTCH-inhibiting drugs. The clinical trial of OMP-52M51 recently added M.D. Anderson to the list of participating sites. And there are two clinical trials of BMS-906024, one with chemotherapy and one without chemotherapy. These studies typically accept only patients with an altered or activated NOTCH pathway, so they would not be appropriate for all ACC patients considering systemic therapy.

ACCRF maintains a list of Current Studies related to ACC that patients with progressive disease may wish to consider with their physicians. The clinical trials are categorized into three groups:

• Phase II studies recruiting ACC patients
• Phase I studies of drugs inhibiting targets of interest in most ACC cases
• Phase I studies of drugs inhibiting targets of interest in a significant subset of ACC cases (currently cases with NOTCH pathway alterations)

A list of past studies provides a history of completed phase II studies in ACC as context for discussions among patients and physicians about treatment options. 

In addition to their generous support of ACCRF, Kellie's Krew maintains a Patient Assistance Program that helps alleviate some of the financial hardship that comes with traveling to treatment centers and doctor's appointments. Patients may benefit from short-term and/or long-term assistance by filling out the online or downloadable applications.

Kellie is deeply missed, but the legacy she created continues to provide comfort to ACC patients in their times of need.

Kellie Hinshaw (right) with her sister Kim Schmidlin in 2012

Jeff Kaufman, the Executive Director of ACCRF, recently began serving as a member of the Cancer Research Committee of the American Society of Clinical Oncology. He also serves as a member of the National Cancer Institute Council of Research Advocates. Jeff recently completed his terms on the National Advisory Dental and Craniofacial Research Council and the National Institutes of Health Council of Councils. While sharing the perspective of a rare cancer research organization and its patient community, Jeff seeks to raise the profile of ACC among leading researchers and funding organizations.