Assistant professor of medicine,
Tisch Cancer Institute,
Icahn School of Medicine at Mount Sinai
For National Cancer Survivor Month this June, The Cancer History Project is continuing its series of patient survivor stories.
Deborah Doroshow, who is also a historian of medicine, is returning as guest editor of the Cancer History Project this month.
Previous conversations between Doroshow and survivors of cancer appear here.
- Podcast: CAR T-cell therapy produced a complete remission of Marcus Humphrey’s lymphoma
By Deborah Doroshow and Alexandria Carolan | June 2, 2023
In January 2021 Mary Humphrey made several phone calls to find an oncologist who would treat her husband, Marcus Humphrey, for a lump that had grown rapidly and exponentially on the right side of his neck.
All photos courtesy of Marcus and Mary Humphrey.
She wasn’t having any luck. When she finally found an appointment for a week later, Jan. 19, the ear nose and throat doctor who Marcus Humphrey had first gone to heeded a warning:
“I’m afraid this man might not be here on the 19th if we wait until the 19th,” Humphrey’s doctor had said at the time.
“That was definitely very alarming,” Marcus Humphrey said to Deborah Doroshow. “Nobody wants to accept the big C because growing up, when I heard of people in my own family circle—close friends of my parents that got cancer—the next thing the family was hearing was—how long?”
Humphrey had not been a sickly man before this.
“I’d never been hospitalized all my life, never had any of the childhood diseases, the mumps and measles, none of those things,” he said. “And now here I am, a victim to whatever this was. We needed to find out.”
Not wanting to wait a week for Humphrey to receive a diagnosis and treatment, the ear nose and throat doctor made a call to the head of the head and neck oncology department at Medical University of South Carolina Cancer Center. Marcus Humphrey received an appointment for a core biopsy that day.
“We left that day for the Medical University of South Carolina and basically moved in there for about seven months,” Mary Humphrey said.
There, Marcus Humphrey was diagnosed with lymphoma. The subtype was still unknown, and the treatment path was yet to be determined.
The pain in his neck, meanwhile, became debilitating. He couldn’t sleep at night. His doctor, Brian Hess, said the pain was considered worse than that of a migraine.
“If you put your pointer finger up about halfway behind your ear, it was pushing up that far behind the ear and down underneath my clavicle,” Marcus Humphrey said. “It was excruciating pain to be in any position except holding my head straight and level.”
A week went by before Marcus Humphrey began treatment. On Jan. 19, the day that had greatly concerned the ear nose and throat doctor, Marcus was scheduled to have a lymph node removed to determine the subtype of his lymphoma. By this point, the mass on his neck had begun affecting his voice. Mary Humphrey was worried that soon he wouldn’t be able to breathe.
“In comes the anesthesiologist who specifically works in oncology,” Mary Humphrey said. “As soon as he sees Marcus, his eyes get huge. ‘Oh my God. This is the kind of thing I get called in the middle of the night for. Whatever kind of subtype he’s got, he needs treatment to start today.’ I felt a wash of relief.”
Marcus Humphrey was diagnosed with two subtypes of lymphoma: Diffuse large B-cell and follicular.
“They explained that diffuse large B-cell could be treated, and they didn’t use the word cured, but they said that the outcome could be very positive, that it might remain in remission, but that follicular rarely went away—fully went away,” Mary Humphrey said.
Doctors began treating Marcus Humphrey with the R-CHOP chemotherapy regimen, which caused gastrointestinal side effects. Also, he couldn’t urinate. This required nephrostomy tubes.
“I’m having to deal with the reality of my organs not functioning,” he said. “For someone who’d never been hospitalized and never been sick, I’m wondering, is the end here? Are they just delaying the end? They’re going to the end of this episode of chemo, and then I’m done. Because I didn’t feel like physically I had any more fight left in me.”
The mass in Humphrey’s neck subsided—and then it returned. Doctors determined the chemotherapy had failed, and started him on the R-ICE regimen instead.
Photo provided by Marcus and Mary Humphrey.
“That just wiped him out,” Mary Humphrey said. “He almost immediately lost about 60 pounds…he lost all his hair when he went through R-ICE too. I know no other way to describe it other than he looked like somebody that had been through the Holocaust. He looked like a skeleton. It was so scary to see him.”
By then, the lymphoma was pressing on his optic nerve. The headaches continued. An eye specialist suggested that the eye would have to come out.
“To multiply the already dismal picture here, I can’t imagine having sustained life with this little frail body that was looking like a toothpick now,” Humphrey said. “Now, to be so frail and then to think, ‘You’re going to take my eye out? How long am I going to have these recurrences of these headaches that won’t let me sleep at night? And these tubes hanging out my backside?’ Life had been diminished—so extremely diminished that it was almost taking my desire away.”
If both chemotherapies had failed, then what could possibly come next?
CAR T-cell therapy was an option, but Humphrey’s oncologists were concerned about his heavy tumor load. Still, doctors gave them both a book about the treatment, and Mary Humphrey did independent research online.
“Marcus read the first page in the book that they gave us—and he read the sentence that said ‘might cause death,’ and he closed the book, put it aside,” Mary Humphrey said. “I had come to the place where I realized that if he didn’t get some kind of treatment that worked, that the cancer was going to kill him.”
Hamza Hashmi, one of the oncologists treating Humphrey, was optimistic about Marcus Humphrey’s last treatment option. Mary Humphrey recalls him comparing the immunotherapy to Pac-Man.
“That stuff is like Pac-Man,” she recalled him saying. “It’s going to go in there and find all that lymphoma and eat it up. With this chemo, you’re in there with a hammer. It’s like whack-a-mole. You hit it in one place, it pops up in another. But with CAR T, it’s like Pacman goes in and eats it up.
“As much as I had read about CAR T, I don’t think mentally, either one of us were prepared for the intensity,” she said.
Marcus Humphrey experienced cytokine release syndrome and neurotoxicity two days after he began CAR T-cell treatment.
“I was realizing that the big fears and the concerns of why they even were hesitant to maybe do CAR T,” Mary Humphrey said. “He wound up in ICU, didn’t know his name, didn’t know his birthday, couldn’t formulate a sentence, couldn’t walk or talk or move an arm or leg. That was extremely frightening. Even once he got out of ICU, he wound up with a head full of patches where they check for seizure activity. It was hooked to a camera that was observing 24/7 of seizure activity, or really any activity around him.”
Mary Humphrey kept wondering, “Is this it?”
“We had two nurses that had worked with a lot of patients that had been through CAR T, and both of them kept encouraging me and saying, ‘We’ve seen this before. We’ve seen it before. He’s going to come around,’” she said.
Marcus Humphrey tried to remain positive.
“Coming out of this CAR T and dealing with not just the effects of the chemo, but CAR T had a twist all its own. I smelled like CAR T. It poured out of my pores. The smell of it, the taste of it was in my mouth. I couldn’t get rid of it,” he said. “Even though I had all those wires attached to my head, and I couldn’t tell you my name and date of birth—I still managed to try to keep that face on, that gave her hope.”
Things started looking up around July 4, 2021. Soon after, the Humphreys returned to their home in Beaufort, North Carolina. Mary Humphrey encouraged her husband to use the pool.
“I’m looking at her and I’m thinking, ‘She’s such a fighter for me that I can’t disappoint her. I can at least try,’” he said. “I could kick my legs and it was good therapy.”
Though mobility was still an issue, he was invited to throw a pitch at Riverdogs game in Charleston, which was, in part, a fundraiser for the American Cancer Society’s Hope Lodge.
“He wound up to make his pitch, and then they called the pitch over the loudspeaker,” Mary Humphrey said. “They said, ‘Oh, that looked like a strike to me.’
“It did not look like a strike to me, but it was fun. I think that positive encouragement really started to kick in and help.”
Marcus Humphrey, the son of a preacher, and an associate pastor at his church, turned to his faith and his community to gain strength while he received treatment.
“I just knew, growing up in a family of church-minded people, and being in a church, and being active as a believer, I knew I was not fully in control,” he said. “It wasn’t up to me. I didn’t have the final word. I needed to not forget my foundations. I needed to do a lot of praying and soul seeking and refuse to accept defeat. That was my immediate response.”
Today, Marcus Humphrey’s cancer is in remission. His past three scans have been clear. At the time of this interview, he and Mary were on a five month vacation in Europe.
“We’re looking out the window here over the Adriatic Sea,” Humphrey said.
Recent contributions
- MSK’s Sloan Kettering Institute Celebrates 75 Years of Discovery
By Memorial Sloan Kettering Cancer Center | June 1, 2023
When the Sloan Kettering Institute opened its doors on Friday, April 16, 1948, an Associated Press wire story announced: “The world’s greatest cancer center opened here today.”
And over the last seven and a half decades, institute researchers have made important contributions to the fundamental understanding of human biology, as well as driven practice-changing innovations in the treatment of cancer.
Sloan Kettering Institute scientists have discovered cancer-linked genes, unraveled signaling pathways that control cell growth and division, and identified cells involved in mounting and repressing immune responses.
They’ve illuminated how vesicles transport molecules to the surface of cells for secretion — work that later went on to earn a Nobel Prize. They’ve figured out how to derive dopamine-producing neurons from human embryonic stem cells, setting the stage for new treatments for Parkinson’s disease. And they’ve uncovered an overlooked alternative to the famous Krebs cycle, the main process that supplies the energy needs of cells — to list just a few examples.
And they’ve helped pioneer major advances in cancer treatment, from developing some of the first effective chemotherapy drugs to making significant contributions to today’s cutting-edge immunotherapies.
“Even with the many milestones in fundamental biology and cancer research that have happened here, there’s good reason to believe our most important contributions are yet to come,” says Sloan Kettering Institute Director Joan Massagué, PhD, a leading researcher on cancer metastasis and Chief Scientific Officer of Memorial Sloan Kettering Cancer Center (MSK). “That’s true not just for the research being done within the walls of the institute, but also for the many young scientists who receive their training here and go on to do profound, influential work around the globe.”
A full version of this story appears on the Cancer History Project.
- Podcast: 50th Anniversary of the Johns Hopkins Kimmel Cancer Center Podcast Series – Radiation Oncology
By Johns Hopkins Kimmel Cancer Center | May 31, 2023
In this podcast Dr. Bill Nelson and Dr. Ted DeWeese, the interim dean of faculty and CEO of Johns Hopkins Medicine, review the history of radiation oncology at Johns Hopkins.
- Sarah Cannon Research Institute, Genospace on the evolution of precision medicine
By Sarah Cannon Research Institute | May 30, 2023
Sarah Cannon Research Institute believes personalized medicine—tailoring treatment to the individual patient’s cancer—is critical for drug development and offering the right treatment, to the right patient, at the right time.
SCRI’s Personalized Medicine Program brings together experts in cancer research and the latest technology to help physicians determine the best treatments for their patients by surveying the genetic makeup of a patient’s individual cancer.
In this article, Andrew McKenzie, PhD, vice president of personalized medicine at SCRI and scientific director of Genospace, SCRI’s precision medicine platform, and Mick Correll, president of Genospace, share insights on how precision medicine has evolved over the past decades and what the future looks like.
This column features the latest posts to the Cancer History Project by our growing list of contributors.
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