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The Hidden Drain of Cancer: Long-Term and Psychosocial Effects

Headshot of Phineas, an acute lymphoblastic leukemia survivor

Seven years after receiving CAR T-cell therapy for acute lymphoblastic leukemia in an NCI clinical trial, Phineas is cancer-free. Phineas is holding the syringe that was used to infuse his CAR T-cells.

Credit: Photo courtesy of Carlos.

In 2013, then 5-year-old Phineas received CAR T-cell therapy for acute lymphoblastic leukemia (ALL) through an NCI clinical trial. His dad Carlos shared how Phineas has been faring since doctors declared him cancer-free in 2013 and how the family coped with his cancer and its treatment.

On his way back to the NIH Clinical Center to be with his son Phineas, Carlos got his first speeding ticket in 8 years. Hours before, he had left his teenage daughter with neighbors so he could be with Phineas. In Virginia, state police had pulled him over on I-95 as he urgently returned to NIH in Maryland. He paid the ticket.

His daughter had just started school after summer break. Carlos didn’t want her to miss classes, so he left her with neighbors for a few weeks. Several states away from home, 5-year-old Phineas had received his CAR T-cell transfusion 3 days earlier and was spiking an alarmingly high fever and had become nonresponsive. When Carlos finally made it to the NIH Clinical Center that night, he found his wife with Phineas, exhausted.

Phineas pulled through, and ultimately, the treatments for his cancer were successful. Now 12 years old, he spends his summer days as many kids his age do: playing on the computer, swimming in the local lake, and hiking trails.

Six years before Phineas was diagnosed with ALL, Carlos and his wife had lost an 18-month-old daughter to acute myeloid leukemia (AML). Despite ALL and AML both being blood cancers, they are very different diseases, and there were very few treatment options for AML at the time.

“The first time around, you can lean on your ignorance of the process. The shock carries you through,” Carlos recalled from the experience with his daughter. “Learning Phineas had cancer was tough. As awful as cancer is, we were actually a bit jubilant when we heard Phineas had ALL. We already knew it was supposed to be the most curable type of cancer a kid could get.”

An Experimental Treatment: CAR T-Cell Therapy

Carlos and his wife figured Phineas was facing 3 years of discomfort from chemotherapy and other cancer-related treatments. They watched for 4 months as Phineas suffered metabolic issues in response to various chemotherapy drugs. His liver did not clear the drugs out of his system quickly. His cancer did not respond.

In 2013, CAR T-cell therapy was experimental—a promising treatment that came with many uncertainties. Phineas’s parents were aware that some children who have CAR T-cell therapy experience spectacular remissions followed by tragic relapses. “We knew this was not a sure thing,” Carlos said. “We wanted to give it a shot, though, before going down the road of just dumping more chemotherapy into this kid.”

Only a few cancer centers offered this new experimental therapy, and they had wait lists. Carlos discovered an NCI pediatric clinical trial testing CAR T cells engineered to target a protein called CD19. Phineas enrolled and received his CAR T-cell transfusion in September 2013. His doctors declared his cancer to be in complete remission 28 days later.

Today, a handful of CAR T-cell therapies have been approved by the Food and Drug Administration to treat a number of cancers.

Seven Years Cancer-Free

Being a 7-year cancer survivor doesn’t slow Phineas down. He has transitioned to seeing a primary care doctor, as opposed to an oncologist, and participates in a yearly cancer survivorship clinic. Despite missing first grade and spending a year in Costa Rica with his family, Phineas recently finished 5th grade as a top student.

His parents worked hard to make Phineas’s childhood as normal as possible. “His childhood was spent in hospitals,” Carlos reflected. “We tried to make it a really weird science-themed summer camp the whole time.” They always tried to see the positive in what was happening and to have a good time. For example, the nurses were willing participants in the practical jokes they played and laughed when they flew an inflatable blimp by remote control down hospital corridors.

A Need to Identify the Long-Term Effects of CAR T-Cell Therapy

Carlos is not concerned about any lingering cognitive effects from his son’s cancer treatments. He and his wife do continue to watch for physical effects, such as extra bone growth and other known late effects from radiation. They are glad that doctors have identified the severe long-term physical consequences of radiation and chemotherapy. However, late effects of CAR T-cell therapy have not been fully identified by scientists.

Carlos shared Phineas’s ordeal and his family’s experience at an NCI conference in May 2020 that brought together immunologists and other researchers to consider how to help patients and families with longer-term toxicities and psychosocial effects from CAR T-cell therapy. The emotional rollercoaster that the family has been on for more than a decade may have come to a stop, but the occasional cracks in Carlos’s voice and pauses as he tells their story reflect the lasting impact of the family’s experience and the continued need for emotional recovery.

Carlos expressed his family’s appreciation for the research that made a treatment possible for Phineas and the NIH Clinical Center where he received it: “Thank you for everything you are doing and keep on ‘sciencing’!”

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