Living his life: He worked treatment for non-Hodgkin lymphoma into his college schedule

John Hrbac, center, with his pediatric oncologist, Jodi Sima, MD, left, and his surgeon, Tamer Ahmed, MD, right. (photos by Susan Kahn)

John Hrbac, center, with his pediatric oncologist, Jodi Sima, MD, left, and his surgeon, Tamer Ahmed, MD. (photos by Susan Kahn)

BY AMBER SMITH

John Hrbac is a junior at George Washington University. He travels the East Coast with the school’s debate team. Over the summer he visited Europe. He’s studying for the law school admission test. At 21, the young man from Manlius is living the kind of life he envisioned.

“He’s happy, and healthy,” says his mom, Maha Hrbac, before adding, “I hope.”

Once a month Hrbac sits for an infusion of an immunotherapy medication to help his body’s immune system fight non-Hodgkin lymphoma.

Hrbac was diagnosed between his freshman and sophomore year of college. He had surgery, chemotherapy and radiation therapy. When tests showed that some cancer remained, his doctor proposed the immunotherapy drug pembrolizumab, sold under the trade name Keytruda.

His mother says it seems to be working. “It’s slowly deteriorating the cancer.” Hrbac feels fine. He’s going on about his life. Every three months he returns to Upstate for a checkup and scans to monitor the drug’s success.

How it started

Hrbac’s medical crisis began with general fatigue around Thanksgiving 2017. Being his first semester of college, he thought it was normal to feel so tired. Then, starting in December, every once in a while he’d feel a pinch on his heart. Intense shoulder pains began in January, but Hrbac thought he’d pulled a muscle or slept wrong.

He went skiing with friends during spring break in 2018 and wound up at an urgent care clinic with chest tightness and shortness of breath. “They told me that my muscles were inflamed and to just take painkillers. That was around the time my night sweats started,” Hrbac says.

By early May Hrbac started coughing up blood. Something wasn’t right, he knew. But because he didn’t have a doctor in Washington, D.C., he decided to wait and see his doctor as soon as he got home after finals.

“At first they thought it was either pneumonia or a blood clot. They did X-rays. They immediately called me and said I had to come and get a computerized tomography scan. When they called me for the CT, I knew it was something bad,” Hrbac recalls.

His primary doctor called him with the results. A tumor the size of a misshapen orange was growing in his chest.

John Hrbac

John Hrbac

Diagnosis and treatment

Hrbac underwent additional scans and a biopsy to get the diagnosis of non-Hodgkin lymphoma, a cancer that starts in the white blood cells. Specifically, he had mediastinal large diffuse B-cell lymphoma, an aggressive form that would need prompt treatment.

Upstate pediatric oncologist Jody Sima, MD, became his doctor.

“She saved my son,” Maha Hrbac says emphatically.

“John’s tumor was so large that it had stuck to the side of his left lung. It was pushing on his lung, airway and heart. It was constricting his main arteries, and the blood flow and his airway,” she recalls. “His health was deteriorating, to the point that he couldn’t walk down the hallway. He could only sleep sitting up at about 55 degrees. If he lay down, he couldn’t breathe because of the tumor.”

Sima admitted Hrbac to the Upstate Golisano Children’s Hospital, on the 11th floor, cared for by nurses and technicians his mother describes as angels. Surgeon Tamer Ahmed, MD, installed a port for the administration of chemotherapy medications, and Hrbac underwent five days of continuous chemotherapy before going home. Every two and a half weeks, he would return for five additional rounds of chemotherapy.

During her son’s first hospitalization, Maha Hrbac was a wreck. She stayed by his side. In the middle of the night, she stirred when a nurse came in to check Hrbac’s vital signs while he slept. The nurse then adjusted his blanket to tuck him in. That gesture meant so much to Maha Hrbac. She hurried to the hallway to hug the nurse and thank her for taking such care with her son.

The treatment was not fun, but Hrbac told his mom, “A little part of me was always happy to come back to the floor because I knew I would get to see everyone.”

The six rounds of chemo continued over the summer and into the start of his sophomore year at George Washington, where professors were understanding. At the conclusion, he returned to Upstate for follow-up scans. Sima had to tell him the bad news that the cancer wasn’t gone.

What next

Hrbac underwent 20 days of radiation during winter break — which also didn’t get rid of all the cancer.

Sima investigated options.

Many patients in his position undergo high-dose chemotherapy and a bone marrow transplant. “That is the traditional therapy,” Sima says, “however, it’s not very effective.”

As it turned out, Hrbac’s tumor contained some specific markers indicating that a new type of immunotherapy might work.

Sima met with Hrbac and his family. She said Keytruda was working well for some patients with lung cancer.

It was still early, but success was also being seen in some patients with non- Hodgkin lymphoma who were taking the immunotherapy drug. It might be worth trying.

“We were like, ‘What have we got to lose?’” Maha Hrbac remembers.

So, for the spring of her son’s sophomore year, every three weeks she would drive six hours to pick him up from school after classes on Thursday. He had no classes on Friday, so that’s when he would get his Keytruda infusion at Upstate. Then they would drive back to Washington, D.C., so he could be in class Monday.

She would, of course, do it all over again if she had to.

Keeping things normal

Sima knew how important it was to Hrbac to be able to keep living his life.

“I didn’t want it to stop me from living a normal life. I tried my hardest to keep life going,” he says. “Everyone told me to take this semester off, but I didn’t want to. It took a lot of strength, obviously. There were a lot of days I didn’t want to. But I didn’t want to put everything on hold for four months.”

Hrbac’s advice to anyone in a similar situation: Try to keep things normal. “Just keep going with it. That’s how I got through it. At the end of the day, the mental aspect was the hardest part.”

Now, Maha Hrbac’s son is a junior in college. He’s technically cancer free. But he undergoes the immunotherapy infusions once a month. The medication comes in a plastic bag about the size of a coin purse. It infuses into his arm through an intravenous line slowly.  “In an hour, he’s done,” she says, “and he goes on his merry way.”

What is immunotherapy?

One reason cancer cells thrive is because they have the ability to hide from the body’s immune system. The medication Hrbac takes, pembrolizumab (Keytruda), is an immune checkpoint inhibitor designed to prevent cancer cells from hiding from the immune system’s T cells. This allows the T cells to recognize and attack the cancer cells.

Some immunotherapies boost the body’s immune system in a general way. Others help train the immune system to attack cancer cells specifically. Some types of immune therapies are made using the patient’s own immune cells.

Different immunotherapies work on some types of cancers better than on others. Some are used alone, and some work best when paired with another therapy.

The goal is generally to stop or slow the growth of cancer cells or to stop cancer from spreading to other parts of the body.

Source: American Cancer Society

Cancer Care magazine fall 2019 issue coverThis article appears in the fall 2019 issue of Cancer Care magazine.

This entry was posted in blood/blood-related conditions/hematology, cancer, chemotherapy, health care, immunotherapy, patient story, surgery, Upstate Golisano Children's Hospital/pediatrics and tagged . Bookmark the permalink.