believe that in today’s society, people with cancer
often limit their quality of life and their ability to
survive because of their lack of knowledge and
understanding about their disease,” he says.
That conviction led Lawing to become a cancer
patient advocate. As an advocate, he has spoken
publicly about kidney cancer and the importance
of patient education. He has been a patient representative on teams that decide who gets funding for
cancer research supported by the Department of
Defense. He’s also created patient-friendly sum-maries of scientific presentations on kidney cancer
research for the Kidney Cancer Association, where
he is a board member.
While Lawing admits to lacking the education and
scientific knowledge of medical professionals, this
self-taught musician learned as much as he could
about kidney cancer by reading journal articles,
attending scientific meetings and talking to patients.
He has a voracious appetite for knowledge. While he
was in the hospital, a nurse told him about a book on
kidney cancer. His wife left his bedside to purchase
the book and they read it together. The couple has
often gone online to learn more about kidney cancer,
and they have learned to distinguish good information from bad. Lawing shares what he’s learned with
other cancer patients: He’ll provide information
about financial assistance programs and recommend
local medical specialists and hospitals if a person
can’t get to a faraway NCI-Designated Cancer Center
Lawing’s knowledge and experience with
IL- 2 made him the right person to answer ques-
tions about the therapy from other kidney cancer
patients when he stumbled upon an online patient
discussion board on the Kidney Cancer Association
website in 2007. He has spent countless hours par-
ticipating in online patient communities, answer-
ing questions about his disease and kidney cancer
treatments. Because Lawing was such a reliable
resource for patients, William Bro of the Kidney
Cancer Association asked him to be a moderator of
the patient forum on the organization’s website.
“While I may have limited abilities and knowledge in so many areas, the simple act of sharing that
knowledge with others benefits them and challenges
me to learn and to try to do more,” Lawing says.
An Array of Treatments
Lawing has been treated with several kidney cancer
drugs since his 1997 diagnosis. The IL- 2 treatments
stabilized his disease, but after he spent some time
off the treatment, new tumors appeared throughout his body, including in his abdomen and neck.
In 2006, the targeted drug for advanced kidney
cancer known as Sutent (sunitinib) was approved
by the U.S. Food and Drug Administration (FDA).
Beginning in January 2007, Lawing was on and off
Sutent for almost a decade. The medication would
shrink his tumors to a point where his doctor would
stop the treatment and keep an eye on the cancer
with CT scans. When the tumors showed signs of
growth, Lawing would go back on the drug.
In June 2016, when CT scans showed the tumors
were growing again, Lawing started on the PD- 1
inhibitor Opdivo (nivolumab), which boosts a
patient’s immune system to attack cancer. The
immunotherapy drug had been approved recently
by the FDA to treat advanced renal cell carcinoma.
After 10 infusions of Opdivo over a five-month
period, CT scans showed his tumors were stable.
Lawing and his oncologist decided to stop treatment
in October 2016 and keep a close watch on the cancer
via CT scans administered every three months.
“I’ve had over 80 CT scans, and for most people,
they would be terrified about the radiation from all
of those scans,” Lawing says. “But there’s a lower
“Every day that I’m alive
is a gift and a miracle.”