Pathogens are tiny invaders of the body that can make people sick—something that Howard Heller, MD, MPH, has spent his entire career studying. Then, in 2024, Heller discovered at age 64 there was another kind of invader, growing slowly and uncontrollably in his own body: cancer.
“I’ve helped patients as an infectious disease specialist for more than 30 years all over the world from right here in Boston to South Africa. Little did I know cancer was creeping up on me and making me sick,” Heller says.
As a busy physician working long hours with nighttime emergency calls as part of his month-long clinical consult rotation, Heller thought his constant coughing, fatigue, shortness of breath, and weakness were due to work or from mold or dust he inhaled while cleaning out his late mother’s apartment. But his symptoms persisted.
“It usually takes me a couple days after the consult service is over to recover, but I wasn’t recovering,” Heller says. “I started to consider the idea of retiring. Maybe I was too old for this, and it was time to explore my other options.”
Then on Patriots’ Day, after two months of feeling poorly, Heller went to urgent care at MIT. Upon being seen, the team felt an abnormality in his abdomen and immediately began bloodwork and an abdominal ultrasound.
Heller learned he had follicular lymphoma — a slow-growing cancer of the lymphatic system that affects white blood cells. There is no risk factor or familial tendency for lymphoma—it is a random event.
“I was devastated when I saw my results,” Heller says. “At first, I wanted control over my treatment at the hospital where I work because I know how everything will go, but I decided that I wanted to give control to someone else—at Dana-Farber.”
Living with Lymphoma
Once Heller chose to begin treatment at Dana-Farber, Heller was connected with Philippe Armand, MD, PhD, a globally recognized physician-scientist in lymphoma research at Dana-Farber. Immediately, Heller was scheduled for a bone marrow and lymph node biopsy.
“I knew I was in good hands, and I could turn everything over to him to take care of my experience from that first phone call,” Heller says. “As I was becoming part of the Dana-Farber system, I was remembering my experience at Memorial Sloan Kettering Cancer Center where I did my residency 40 years ago—the care you get at a cancer hospital is different.”
After additional testing, he began to go over treatment options with Armand, who gave him two options: standard treatment, typically chemotherapy and a targeted antibody drug regimen, or a clinical trial.
When he read more about the clinical trial, Heller felt an inner nudge to participate. He recalled his time in his earlier career, where he helped lead HIV-related clinical trials and enrolled many patients. Heller was used to navigating decision-making with patients, but never for himself.
“Back in the ‘90s, those were the times where entering clinical trials was risky. You might be entering a trial that turns out not to be good or could preclude you from being on other treatments in the future,” Heller says. “But there was always a possibility even then that this might be the right answer for some patients.”
HIV had a turning point in 1995, when more effective drugs were released, Heller recalls, and it felt to him like this combination of immunotherapy might be a turning point in lymphoma too, if he chose to enroll in the clinical trial.
The first question Heller had for Armand was: If I were to respond but then relapse, would CAR T-cell therapy be an option? The answer was yes. Relieved he had a back-up option, Heller asked a second question—one that he always received from patients: If it were you or a family member, what would you do?
The clinical trial, led by Reid Merryman, MD, director of clinical research in the Division of Lymphoma and clinical director of Follicular and Marginal Zone Lymphoma Centers, and Armand, was a phase 2 study of epcoritamab and rituximab for first-line treatment of follicular lymphoma. Epcoritamab is a type of immunotherapy that targets CD3 on immune cells and CD20, a protein found on the surface of tumor cells to destroy the cancer’s growth. Rituximab is a standard targeted immunotherapy to help reduce immune side effects caused by epcoritamab.
“Chemoimmunotherapy is the most common standard of care for patients with newly diagnosed high-tumor burden follicular lymphoma, but epcoritamab and other novel immunotherapies called bispecific antibodies are challenging the role of chemoimmunotherapy and could delay or even obviate the need for chemotherapy in this disease in the future,” says Merryman.
Heller is one of the 35 patients who participated in the initial cohort of the epcoritamab trial. Among these 35 patients, 34 responded to the treatment combination. With the trial’s current success, Merryman and the team expanded it to include an additional 65 patients, and enrollment is nearly complete.
Merryman says his research team at Dana-Farber can continue to deliver new therapies to patients because of contributions that Heller and others like him have made. Merryman hopes this treatment could soon be a viable option to lower the tumor burden for patients with follicular lymphoma upon FDA approval.
Moving Onward and Upward
As Heller progressed through the clinical trial, he began to appreciate something exemplified by his patients years ago—their strength.
“I was amazed at how people were determined to stick with their clinical trials in spite of side effects and complications and not knowing if it was going to help them in the long run,” Heller says. “And part of it was, I think, a feeling of responsibility to the community.”
Heller knew he was doing the clinical trial for himself with the hope of getting better but also knowing that the data that will come from this clinical trial could change the face of lymphoma treatment.
“It was during the harder times when thinking about my impact and my community responsibility that kept me going,” Heller says.
Since finishing treatment about a year ago, Heller has become a strong believer in the role of the immune system in cancer surveillance. With a strong belief that stress plays a large role in influencing the immune system, Heller chose to retire after turning 65. He remains engaged in teaching, conferences, consulting, and enjoys spending more time with family and traveling.
“What motivated me during my treatment was to think about all these other strangers who I will never meet, but who may benefit from my participation in the trial, even if this turns out to just be a baby step along the way,” Heller says. “The clinical trial helped me, and now I am enjoying life.”
Thank you for this article Maddi. I’m engaged in the same clinical trial under the care of Dr. David C Fisher and his wonderful team. Your article about Dr. Heller‘s experience is encouraging and I appreciate it. Well done.👍
As a newly diagnosed cancer patient currently in the middle of a clinical trial at Dana Farber, I am truly inspired and encouraged by Dr. Heller’s journey and for him sharing his experience.
As scary as a cancer dx. is I am learning that with a positive attitude and outlook, the care I am receiving by the staff at Dana Farber has exceeded my expectations.
Thank you!