Some patients worry
about telling their
doctors about side
effects while taking
insulin-producing cells in the pancreas. Once the
immune system has attacked the pancreas, the
damage is permanent. Patients are treated as though
they have type 1 diabetes.
Researchers are also trying to understand why a
small proportion of patients on checkpoint inhibitors, likely less than 1 percent, develop myocarditis, or inflammation of the muscles of the heart.
The condition can happen while taking any of
the checkpoint inhibitors but is most common in
patients being treated with a combination of two
different checkpoint inhibitors. Myocarditis comes
on suddenly near the beginning of treatment and is
often fatal. To reduce this risk, some cancer centers
are now routinely monitoring patients’ blood
and doing electrocardiograms to look for signs of
myocarditis, like elevated proteins indicating heart
damage and irregular heart rhythms, near the
beginning of treatment.
Javid Moslehi, director of the cardio-oncology
program at the Vanderbilt-Ingram Cancer Center
in Nashville, Tennessee, says that it’s important
to learn who is at risk for cardiac events, but he
also stresses the benefits of immunotherapy. “For
the first time, we have effective drugs for cancer
that previously had no treatment options,” he says.
“That’s really important. It should not [cause]
patients not to get potentially life-saving therapies.”
To learn who is at risk for side effects, researchers
are studying everything from patients’ genetics and
the microbes in their guts to their medical history.
Clinical trials for checkpoint inhibitors often exclude
patients who already have been diagnosed with auto-
immune diseases, the theory being that these patients
could be more susceptible to severe side effects. But
it’s not as simple as saying that people with pre-
existing autoimmune diseases will get certain side
effects. Recent research indicates that only some
patients with diagnosed autoimmune disease have
these problems, and patients without diagnosed auto-
immune disease can have severe side effects.
An Emphasis on Quality of Life
It’s important to figure out how to prolong life with
immunotherapy, but it’s also important to understand how therapies affect quality of life, says Karen
Loss of McLean, Virginia, who was diagnosed
with stage IV NSCLC in 2012 at age 53 and has had
various chemotherapies, targeted therapies and the
checkpoint inhibitor Opdivo.
Loss felt “good overall” while on Opdivo, aside
from some mild diarrhea and a cough, but her tumors
didn’t get smaller. In November 2016, she decided to
go on a clinical trial of Opdivo plus an investigational
targeted therapy. Her tumors shrank and then stayed
stable while she was on the combination. Although
she developed severe side effects, including diarrhea
and vomiting, it was never clear to her whether they
were related to the investigational drug, the immunotherapy or the combination of the two.
Loss stayed on the trial for 13 months, experiencing diarrhea the entire time. She loves to travel, but
going anywhere proved difficult. She decided to stop
participating in the trial and take a break from treatment. Her cancer remains stable.
“Having done a lot of cancer treatments over five
years, I can tell you quality of life is more important
to me than length of life,” she says. “You reach a
point where you can say, ‘You know what? Enough is
enough. I need to live the best life I can rather than
the longest life I can.’”
For Long, who developed colitis after three years
on immunotherapy, side effects also have meant
the end of the road with her checkpoint inhibitor,
at least for now. She stopped taking Opdivo and her
doctors treated her colitis with steroids. In March
2018, after she had an allergic reaction to an herbal
tea, she developed colitis again, perhaps because
the reaction had revved up her immune system, her
doctor told her.
Long currently has just one tumor, in her lung, which
is much smaller than at the start of immunotherapy.
She says the current plan is to stay off Opdivo unless
the cancer progresses. Regardless of what happens
next, Long is thankful for her experience on immunotherapy, she wrote in an email. Immunotherapy
“gave me three excellent years, saw the birth of two
KATE YANDELL is the digital editor of Cancer Today.