This is the season for celebrating family, health, hope and new beginnings.
I want to share a story about one family, a doctor and their unified hope for a new beginning.
In 2014, Merak Melikian Hatounian was a 20-year-old sophomore attending the University of San Francisco. "He was living his dream," said his mother, Debra. Then, suddenly and inexplicably, he began suffering frequent headaches and fatigue, enough to warrant a visit to a local emergency room.
Doctors conducted tests. Merak was anemic. There was evidence of past bleeding in his gastrointestinal tract, but not at that moment. They ruled out stomach ulcers and infections. The ER doctors suggested the old bleeding might be due to "college lifestyle." They prescribed iron supplements and antacids and sent him home.
A few weeks later, he was back in the ER, again very anemic. Again, he was sent home without a definitive diagnosis. The next day, Merak saw his own doctor, who ordered a blood transfusion and additional tests. Still, no diagnosis.
"This was deeply troubling," said Debra. "A mother's intuition told me something was wrong ... very wrong. It was very frustrating."
Then fate stepped in. During a visit with her husband's oncologist in Los Angeles, the doctor asked how the rest of their family was doing. Debra described her son's condition; the oncologist suggested Merak be tested for gastrointestinal stromal tumors (GIST), a rare cancer that involves cells in the stomach and intestines that control peristalsis. GISTs are rare, and relatively few doctors specialize in their study or treatment.
One who does is Jason Sicklick, MD, a surgical oncologist at Moores Cancer Center at UC San Diego Health and associate professor of surgery in the School of Medicine. Sicklick has spent years studying and treating GISTs.
Following the advice of her husband's oncologist, Merak was tested for GIST. Father and son shared the same hereditary gene mutation that causes GIST. Merak moved back home to Southern California. In 2014 and again in 2015, Merak underwent partial gastrectomies — surgical procedures to remove portions of his stomach – to extract tumors. The surgeries were not enough. Cancer cells remained.
"He had aggressive disease," said Debra. "I knew we were in trouble."
Looking for help, Debra met Sicklick who was a featured speaker at The GIST Day of Learning in Orange County, hosted by The Life Raft Group, an international GIST patient advocacy organization.
"I was very impressed with Dr. Sicklick's depth of knowledge on this very rare cancer," she said. "Afterwards, I spoke with him at length. I immediately knew that this doctor was very special, and felt that he was somehow going to be very important in our lives. I just did not know how important at that time."
In the following months, Merak transferred his care from Los Angeles to San Diego where Sicklick, medical oncologist Paul Fanta, MD, and their team treated Merak, who refused to allow GIST to define him. He continued to engage in activities like a cross-country road trip with his friends.
After three failed chemotherapy treatments, Merak underwent a third operation by Sicklick in 2016. More than 50 tumors were removed, with Sicklick taking some tumor cells back to his laboratory. Unlike most doctors, Sicklick is a scientist too. He seeks to create new treatments, not just to employ those already known. With research colleagues, Sicklick cultured the first GIST cell lines from the hereditary form of GIST that Merak possesses.
Fanta then began treating Merak with a fourth drug that seemed to work. Based on parallel efforts in the clinic and laboratory, Sicklick and Fanta identified a new and potentially effective therapy for Merak's form of GIST. In turn, this has led to a new clinical trial for patients with so-called SDH-deficient GIST.
Unfortunately for Merak, the latest drug lost effectiveness after a year. Recent tests revealed Merak's tumors had grown and become inoperable. At the same time, however, Sicklick's laboratory team has been testing thousands of compounds against Merak's cell line, looking for new and better drug therapies. They now have seven leads, all Food and Drug Administration-approved drugs for other diseases. They are pushing toward development of a personalized treatment plan designed to specifically kill Merak's cancer.
"Dr. Sicklick is a highly skilled surgical oncologist, a brilliant translational scientist and the most compassionate clinician I have ever known. I believe that this rare combination of expertise offers the best care and hope for my son."
Throughout her GIST journey, Debra says she has gleaned important insights and is hopeful that this information could be helpful to others who find themselves or loved ones facing a rare cancer diagnosis.
"Time is of the essence. It is vitally important to find a leader in GIST, or in any rare cancer, that you or your loved one may suffer from. Moreover, you need to find a cancer center that is known for their excellence in that specific cancer."
The Moores Cancer Center at UC San Diego Health is one of just a small group of centers worldwide that treat a high volume of GIST cases each year. Patients travel from the across the nation and from abroad to seek the care and GIST expertise of Sicklick and his colleagues.
"On any given day, Dr. Sicklick can be in the operating room removing tumors and saving lives, and then in his research laboratory translating his findings into the care of patients like Merak. This bench-to-bedside cycle repeats. For my son who suffers from a rare cancer, this is enormously important."
— Scott M. Lippman, MD, is director of UC San Diego Moores Cancer Center. His column on medical advances from the front lines of cancer research and care regularly appears in La Jolla Light. You can reach Dr. Lippman at firstname.lastname@example.org