with their doctors early in their treatment. “I’d
want to find out if my lower-grade brain tumor was
more likely than not to transform into an aggressive brain tumor.”
Molecular research also spurred the classification
changes that Salmi learned about. In May 2016, the
World Health Organization, the branch of the United
Nations that studies and promotes health worldwide,
published a new system of classifying brain tumors
based on molecular signatures, in addition to the
usual evaluation of the cells under the microscope.
Given the lack of treatment options, however,
having so much information can lead to frustration. Michael Yutkin, an asset manager in Irvine,
California, was diagnosed in August 2012 with a
glioblastoma during a business trip to Chicago. After
surgery, he had radiation and received Temodar
while also joining a clinical trial for the targeted
therapy drug Velcade (bortezomib). The Temodar
treatments ended after two years, but he continued to take Velcade until his white blood cell count
dropped in February 2015. His tumor began to
regrow in November 2015 and he underwent more
radiation therapy and another year of Temodar.
In the spring of 2016, Yutkin had his tumor
tissue analyzed. The report identified six genomic
alterations, but five came with no recommended
treatments or clinical trials. The sixth was an amplification, or production of multiple copies, of the
EGFR gene. Patients with non–small cell lung cancer
who have this alteration have responded to drugs
called tyrosine kinase inhibitors. However, most
patients with glioblastoma and an EGFR amplification have not responded to these drugs in clinical
trials, so it wasn’t a treatment option for Yutkin.
He doesn’t regret getting the molecular tests done,
“but I’m not sure how much it really told us,” he says.
Scans taken in June 2017 showed that the tumor had
started growing again, which led to a second surgery
in October 2017, and he’s now hoping to enroll in a
clinical trial for an experimental cancer vaccine or
another immunotherapy. “The field isn’t moving fast
enough,” he says.
In rare cases, genetic information can make
a big difference—but these cases are not typical.
Five years ago, Emil Lou, a medical oncologist
at Masonic Cancer Center at the University of
Minnesota in Minneapolis, had a 51-year-old
Knowledge Empowers Patients
“Today’s chemotherapy drugs are pretty blunt instruments” for treating brain cancer, says David Arons, CEO of the National Brain
Tumor Society, a nonprofit advocacy organization in Newton, Massachusetts. “So few therapies are available that you immediately start
thinking about investigational therapies.”
Some of the drugs being tested in clinical trials are specific to certain molecular signatures in tumors, which is a good reason to explore
genomic testing, Arons says. “An empowered patient is … able to play a meaningful role in the navigation of their course of care.”
Arons shared the following pointers for brain cancer patients:
• Obtain a pathology report that follows the latest World Health Organization classification of brain tumors by molecular signatures
and have it explained by a neuro-oncologist. “You want and expect your provider to explain in plain English what all of this means for
you,” he says. Molecular signatures may be a ticket to a clinical trial.
• Because molecular testing is so new, all tests may not be created equally. Find out how your doctor knows that the testing is reliable
and why it is being recommended.
• Ask your provider or the testing company for available options for financial assistance if testing is not covered by your insurance.
• Use the mutations identified by molecular testing to search for clinical trials at clinicaltrials.gov.