Out of Balance | Tom Bumol’s life after lymphoma
February 26, 2019
This story is part of a series, Out of Balance, profiling a few out of the millions of people around the world living with immune-related diseases. Their journeys are what inspire researchers at the Allen Institute for Immunology in their quest to unlock the mysteries of the immune system and ultimately to improve patients’ health and well-being.
When Tom Bumol, Ph.D., moved into his new office at the Allen Institute, he gave prominent placement on his desk to a few items from his past.
The first: An empty green and white cardboard box for Taltz, an injectable, prescription medication for severe psoriasis. The box doesn’t have Bumol’s name on it — it’s someone else’s prescription — but it owes its being to him.
It was one of the drugs he led the discovery and early development of during his 35-year tenure at the pharmaceutical company Eli Lilly, before he joined the Allen Institute in 2018 to help launch the new Allen Institute for Immunology as its Executive Director. When Bumol announced he was retiring from Lilly, a colleague quietly put his empty prescription box on Bumol’s desk and said, “Thank you.”
The second: A trio of PET CT scans of a patient’s body. On the left, there’s a clearly visible dark mass “the size of a Nerf football,” Bumol joked. On the right, its near disappearance about two months later.
This one is Bumol’s own.
The scan accompanies him everywhere, he said. It’s a reminder of the whirlwind beginning of 2012 when he woke up with the worst headache of his life and ended up a short time later with a diagnosis of a type of aggressive non-Hodgkin lymphoma.
It’s a reminder of why he does what he does, first at Lilly and now at the Allen Institute, investigating the complicated inner workings of the immune system to enable better treatments for immune-related diseases — like the one he survived.
And it’s why, when others in his position might have been considering retirement, Bumol flew out to Seattle in 2016 to meet with the late Paul G. Allen, founder of the Allen Institute and at the time a fellow lymphoma survivor, to hear about Allen’s latest idea for a new initiative in immunology research.
“People kept saying, you’ve been an executive for a long time, why not just retire and take it easy? But my patient experience changed me, demanding that I keep going,” Bumol said. “I felt that one of the reasons I was still here — because in 2012 they told me I would likely be gone in a couple of years — was to do something like this.”
The cancer experience
Bumol’s original CT scan, left, showing a large tumor in his abdomen and smaller tumor that had spread to one of his lymph nodes. On the right, the tumor is almost undetectable following just two rounds of treatment.
Bumol first realized something wasn’t quite right on a vacation in Montana in December 2011. The family made the trip from San Diego to the mountains frequently, so he was used to the shift in altitude. But this time, he couldn’t shake the fatigue.
He went back to California earlier than his wife, Charlene, and that’s when he woke up in the middle of the night “feeling like my head was in a microwave,” Bumol said. He drove himself to the emergency room, where his blood pressure read out as 240/110. The ER doctors told him he had cranial nerve herpes zoster, the same virus that causes chickenpox but can hide in your nervous system for long periods of time.
The immunologist knew that this virus only flares up when something is really out of whack with the immune system. Bumol was in his late 50s at the time but seemingly healthy, so what was going on? A few blood tests, an ultrasound and a rushed CT scan later, and the answer was staring him in the face.
He had follicular lymphoma, a type of non-Hodgkin lymphoma that is typically slow-growing. But in Bumol’s case, the tumor was growing aggressively. He went through seven months of a standard lymphoma treatment known as R-CHOP, a combination of different chemotherapies and an antibody-based drug. By the summer of 2012, after just two rounds of the treatment, his tumor had shrunk dramatically, but his doctors still weren’t optimistic given the “transformed” phenotype his tumor demonstrated — typically foreshadowing a bad prognosis.
Bumol and his doctors therefore decided to take some extra measures. He went through radiation, and then an additional two years of “maintenance” treatment with the antibody alone. All told, he visited the infusion center at the cancer clinic at least 100 times, Bumol said. He has been in remission since the summer of 2012.
Cancer treatments are often a slow process. Many chemotherapies can’t be infused too quickly, because they are so toxic. Patients are lined up in recliner chairs, one after another, hooked up to IVs, and then they sit in the infusion center. There often was a lot of time for conversation.
When other patients in the cancer center found out what Bumol did, they always had one question for him: “What are you working on for my type of cancer?”
“That experience just kept overwhelming me that this was a validation of what I had done for the past 30 years. This is why we do drug discovery and development,” Bumol said. “I was one of the lucky ones — the medicines and treatments I needed were there, thanks to innovators of the past. This was not true for so many other patients.”
The next chapter
That was chapter one.
Chapter two was shorter but no less scary. On a regular visit to his dermatologist in 2017 – Bumol’s family has a history of skin cancer – his dermatologist spotted something suspicious on the top of his head.
It turned out to be melanoma, a rarer and more deadly type of skin cancer than those which ran in his family.
“It felt like lightning had struck twice, which it pretty much had,” Bumol said.
He had surgery to remove the original tumor and sentinel lymph nodes in his neck. So far, there’s been no sign of the cancer coming back — either of them.
When he reflects on surviving cancer — twice — Bumol’s first thought is of his family.
“Because I survived, I try to take nothing in life for granted,” he said.
Since 2012, Bumol and his wife of nearly 40 years have seen some milestone family moments: the birth of their two “rascal” grandsons, and their younger son’s wedding and graduation from medical school. And he’s been there for the hard milestones too, like when he and his brother had to transition their mother to a nursing facility, or when his family’s beloved dog died.
“Good or bad, you savor every moment as a gift ,” Bumol said. “When you engage in life as a survivor, it’s like hitting the lottery every day.”
His next thought is of all the work he has left to do.
A new view on time
Bumol, in the midst of chemotherapy in June 2012.
Some people who get through a life-threatening illness have an epiphany of sorts, one which might change the direction of their lives. For Bumol, his was more of an intensifier. He wanted to keep doing exactly what he’d been doing, research and drug development for immune-related diseases, only more of it, and faster.
When asked if his cancer experience made him change anything about the way he did his job, Bumol replied only that he had much less tolerance for inefficiency.
“Time really matters to patients in need,” he said.
When Bumol read Paul Allen’s 2011 book, Idea Man, the chapters about his cancer hit him like a ton of bricks. It was like Bumol was reading his own story, page after page.
“My recent illness made me more impatient and patient, simultaneously,” Allen wrote in his book, describing his 2009 bout with non-Hodgkin lymphoma. Allen had also survived Hodgkin lymphoma decades earlier. “It was a harsh reminder that there is no time to waste, and it’s made me more urgent and demanding of myself and those who work with me. Still, it’s humbling to await the results of a PET scan and know that you can’t make the clock wind faster.”
A new Institute, and a promise to fulfill
Bumol and Allen first met at the first immunology charrette, a brainstorming meeting for what would later become the Allen Institute for Immunology, which launched just two months after Allen passed away following a recurrence of his non-Hodgkin lymphoma. At that meeting, the two sat next to each other at dinner and swapped cancer stories.
“He asked me about my treatment, and if I lost my hair, and if I had any complications,” Bumol said. “We clinked glasses to surviving.”
Allen’s idea, buoyed by enthusiasm and support from leading immunology researchers at that meeting, was extremely appealing to Bumol. At pharmaceutical companies, drug development is a race to the finish line. The result is that research into the mysteries of the immune system often doesn’t go nearly as deep to maintain competitive speed. That led to a lot of big bets and some big failures — leaving a lot of mysteries still to uncover to make a difference.
The new Institute would rely on some of the large-scale science techniques established through the Allen Institute for Brain Science and many other sources. But the Allen Institute for Immunology would study both normal humans and humans with diseases from the very beginning, with a goal to have real translational research impact on human disease in the short, medium and long term.
Bumol has been at the Allen Institute for close to a year now, doggedly working behind the scenes to get the Allen Institute for Immunology up and running before its official launch in late 2018, and to build up the team of scientists and engineers that will do the hard work of mapping the dynamic immune system in health and disease. He’s motivated by the patients he met during his own illness, the millions of others like them around the world, and by a promise he made to Allen just a few months before the founder’s death. Allen’s wish for the new Institute was that they’d go beyond correlations between a dysfunctional immune system and illness to really get to the heart of what causes immune-related disease – be it cancer, auto-immune disease, or other immune-related diseases – and how to fix it.
“It’s not just some ethereal idea of translational research on top of ground breaking basic research. It’s a real goal of faster translation of our research to the clinic to help patients. Paul Allen pushed me on that,” Bumol said. “He was waiting a long time to see this, and we promised him we’d help make this happen.”
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