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November 2014

Kellie's Krew  Patient Assistance Program

Dear Friend of ACCRF,


As part of our continued efforts to keep you informed about topics of interest to the ACC community, this update covers recent developments in clinical trials, cell lines, patient assistance and more.




Jeffrey Kaufman

Executive Director, ACCRF

Clinical Trial Developments

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

Cell Lines: New Validation Criteria

ACCRF is accelerating research by supporting efforts to identify appropriate cell lines (tumor cells that grow in plastic dishes), and we anticipate some imminent successes! 


These preclinical disease models would be very helpful for studying the molecular signaling that leads to ACC. And they would permit the screening of millions of compounds to help identify effective drugs.


Prior to 2009, various cell lines were thought to be derived from ACC. Unfortunately, many were found to be misidentified ovarian, bladder or other cancer cells (see Phuchareon et al.). And the few cell lines that were not clearly ruled out as misidentified have not undergone rigorous testing to authenticate their source. ACCRF has supported nearly a dozen laboratories over the past 8 years to develop new, validated ACC cell lines, and we anticipate some imminent successes.


In order to address the uncertainty across the research community about how best to validate ACC cell lines, ACCRF convened in April 2014 a working group of four world experts in salivary gland pathology. The ACC Cell Line Working Group drafted a document delineating the validation criteria for ACC cell lines based on necessary attributes, highly desirable attributes and other desirable attributes. The document is available here.


High quality resources are fundamental to making progress in cancer research. The ACC community may keep track of available resources on ACCRF's Specimens & Models webpage.


Kellie's Krew: 
A Legacy of Helping ACC Patients
Kellie Hinshaw was an ACC patient who was courageous, graceful and beloved in dealing with her disease. Kellie and her sister Kim Schmidlin founded Kellie's Krew to support ACCRF's research efforts and to provide financial assistance to head and neck cancer patients undergoing treatments. They worked tirelessly to organize an annual 5K run and were active in community outreach.


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
ACCRF Executive Director Appointed
to ASCO Cancer Research Committee

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.



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