36 | fall 2018
the team. There, she met Paul Bunn, the oncologist who
had agreed to test her tumor samples. This is where luck
enters Freeman-Daily’s story.
Bunn told her that other tests were now available for
more genetic abnormalities, and that he still had some of
her tumor sample left. This time, Freeman-Daily’s cancer
tested positive for a mutated form of the ROS1 gene, an
abnormality thought to be present in just 1 to 2 percent of
lung cancer cases.
In November 2012, Freeman-Daily enrolled in an
early-phase ROS1 clinical trial for Xalkori (crizotinib), a
drug that had been approved by the U.S. Food and Drug
Administration (FDA) in 2011 to treat patients with late-stage lung cancer who have an abnormality in the ALK
gene. Eight weeks after she started Xalkori, the hot spots
in Freeman-Daily’s right lung were gone, and she has had
no evidence of cancer since.
The FDA approved Xalkori for treating ROS1-positive
lung cancer in 2016. But Freeman-Daily continues to
take the drug as part of the ongoing clinical trial to
help researchers learn more. Every six weeks, she flies
to Denver to pick up medications and get scans. While
there, she usually stays with her nephew, his wife and
their two young children. “Being with family really
helps,” she says.
All along, she’s worked closely with her medical team.
“As one of the earliest cases of patients living for years
with advanced lung cancer, Janet shows the importance
of involving patients in decisions,” says Steve Kirtland,
her pulmonologist at Virginia Mason Hospital in Seattle.
In fact, he finds that with her science background, she is
just as likely as he is to bring up the latest research findings. “I am blessed to know her and to have a patient who
is a true rocket scientist,” Kirtland says, alluding to her
career in the aerospace industry.
BUILDING PATIENT COMMUNITIES
Now, Freeman-Daily’s focus is on helping other people
with lung cancer. “My side effects are mild so I have a lot
of energy. I feel I can make a real difference,” she says,
noting that she is able to manage side effects of edema and
pulmonary embolism with medications.
In 2013, Freeman-Daily teamed up with Deana
Hendrickson, a patient advocate who lost her mother to
the disease. The two met via an online patient network
for lung cancer patients, and together they created a
Coming Together Over
Cancer patients have joined forces in several online
communities devoted to abnormalities in specific genes:
ALK, EGFR, ROS1 and Exon 20. The latter is not a gene
but a variation in a gene. Each community has a Facebook
group that is open to members to share experiences
The U.S. Food and Drug Administration has approved
17 targeted therapies for lung cancer. To discover if a tumor
has a treatable mutation, physicians can order genetic
sequencing tests that identify individual abnormalities, or
next generation sequencing (NGS), which tests for multiple
abnormalities. “Since most lung cancer patients have
limited tumor tissue for testing, NGS testing gives you the
most bang for the buck,” says lung cancer survivor Janet
Freeman-Daily. “It tests the largest number of genomic
alterations in tumor tissue [using] the least amount of tissue.”
Patients should talk to their oncologists about whether NGS
testing is a good option.
The ALK Positive group has 1,223 members in 41 countries.
The EGFR Resisters group has 456 members in 20 countries.
The ROS1ders group has 252 members in 20 countries.
The Exon 20 group has 243 members in 27 countries.
All numbers are as of September 2018. —R.M.