At his father’s memorial gathering in August, 2014, wearing his trademark bowler hat, Lee Eric Newton greeted guests from his chair. Though weakened by repeated bouts of chemotherapy, he rose to laugh, talk, and deliver a poignant eulogy.
Most everybody there knew that Newton’s own time was short. After four years of treating his bladder cancer, doctors had run out of chemotherapy cocktails. The cancer had spread to his brain, and the prognosis was grim. Newton was a single parent with a 13-year-old daughter, but only a miracle would keep him from joining his father soon.
The miracle came through. Three weeks after praying to his father to help out from heaven, two weeks after telling an oncologist, “I have to live until my daughter graduates from high school. Keep me alive,” he learned of a clinical trial at Mount Sinai Hospital for a personalized cancer immunotherapy (PCI) called atezolizumab (pronounced ah-teh-zo-LEE-zu-mab). One year later he continues to take the train to New York every three weeks for an infusion. At age 51 his cancer is stable with virtually no side effects. His daughter Jasmine is a sophomore at West Windsor-Plainsboro High School South, and there’s a good chance the therapy can continue. His health is OK for now; his chief worry now is how to live — how to make a living for himself and his daughter.
The type of cancer drug that is curing Newton — immunotherapy — could eventually be worth tens of billions of dollars. A Merck immunotherapy drug, Keytruda, is in the news for apparently destroying the brain tumor of former president Jimmy Carter. About Newton’s drug, Atezolizumab, Sandra Horning MD, chief medical officer of Roche/Genentech, says that clinical trial results “may represent the first major treatment advancement in advanced bladder cancer in nearly 30 years.”
The hospital and the drug company are making Newton a “poster guy.” Don Champion is filming him for CBS New York, and he has been featured in the New York Daily News, NY1 News, and Princeton Community TV.
Unlike the chemo, Atezolizumab has virtually no side effects. “If you haven’t trashed the immune system with chemotherapy, this chemical unmasks the cancer and allows the immune system to go after it. I call it my liquid life, my miracle medicine,” Newton says.
It’s been five years since the morning Newton saw blood in his urine. The stock market was reeling. “It was the perfect storm,” he says. “I had just left a job in California and was looking for work. I had been doing management consulting and home-based work, but none of it afforded me unemployment insurance. Though I owned two houses in Princeton, my daughter and I were living at my parents’ house.”
Several months before, because buttons were popping off the pants of his six-foot four, 385-pound frame, he bought a pair of sneakers, started a walking regimen, and cut out carbs and sugar. After three months he had dropped 40 pounds, was working out, doing yoga, walking five miles a day, and feeling healthy. When he saw the blood, he thought he might have broken a blood vessel from too much exercise.
But after a week of rest the blood returned. So his journey with cancer began.
For a fast-moving cancer, waiting for a doctor’s appointment can mean the difference between life and death. He knew that. He had helped his mother through two bouts of breast cancer and his father had chronic lymphatic cancer. He went to a primary doctor and got referred to a urologist.
An ultrasound showed a three-centimeter mushroom shape on the side of his bladder, probably cancer, said the urologist: “Given your age and we don’t know the stage, let’s get this taken out.”
Newton talked with friends and family, did research online, and was overwhelmed with information. “You get it down to where you can digest it and put it through a sieve. You can’t eat it all.” He did not join one of the online groups, such as the Bladder Cancer Advisory Network at Inspire.com or www.smartpatients.org. “Friends thought I should have a group to talk with, but I have always been independent. I am my own man. I listen to other people, but I make decisions.”
Because he had no insurance, he qualified for care at the Bristol-Myers Squibb Community Health Center at Princeton Medical Center. The tumor was removed. After a month of healing the urologist went back to scrape away surrounding muscle tissue to confirm that cancer was not present.
Next came the standard therapy called Bacillus Calmette-Guerin (BCG), an immunotherapy that tries to restore your body’s natural defenses against bladder cancer. It works in 50 to 70 percent of cases where the cancer has not gone into the muscle. A solution of live tuberculosis bacteria is inserted into the bladder, where it remains for several hours before being flushed out as the patient drinks liquids.
“But BCG started me thinking on getting my immune system to fight the cancer,” says Newton. He had been doing yoga. He stepped up the yoga, worked out, ate lots of vegetables, lost a total of 110 pounds, and was feeling “amazing.” BCG continued for almost a year, and the visits were getting further apart. “Every time they looked into my bladder it was better. I thought that my doctor would tell me to come back in a year.”
In 2011, nearly a year after diagnosis, after returning from a yoga retreat in Mexico, one of his toes was numb. A CAT scan revealed that his lymph nodes were huge, and at first they thought that was from a TB infection from the BCG. A biopsy said it was cancer.
What followed was a blur.
One might wonder whether, if he had been a private patient, the status of his cancer would have been discovered and treated earlier. Newton, a fiscal conservative who is not a fan of universal health coverage, disagrees: “Doctors donate their time to the clinic once a month. We did have to wait for the CDC doctor to evaluate the possibility of a tuberculosis infection, but I probably got as good treatment as anybody.” He aggressively facilitated referrals and appointments. “I can’t afford mental negativity and energy. I understand everybody dies. I had to fight the cancer.”
He found an oncologist. His question: “How do I die?”
Her answer: “We don’t talk about how you die, we talk about how you address this and how you live.”
Newton says it should be worded, “How can we prolong your life using chemotherapy for a little while, but it is going to be a hard walk.” He had chemotherapy, once every two weeks for six months, at the new site of Princeton Medical Center.
“I went in smiling — I try to enjoy it and make it fun. You can be happy or you can be sad, and that will contribute to your attitude,” Newton says. “People were very caring. They give you hope, saying ‘this little bag of chemo we hope is going to cure you.’ But in my mind I knew that at best it would give me more time. I started looking for newer therapies.”
He started a “GoFundMe” account to raise money for mapping his genes to qualify for a clinical trial. In contrast to thousands raised for a dog’s broken leg, it generated only $150.
Meanwhile, in the spring of 2014, six months of chemo had reduced his lymph nodes by 98 percent. He and his 89-year-old father were “chemo buddies” together. Without the chemo, he probably would have died in six months.
But the nodes were starting to grow again. And an MRI revealed a new horror: He had a three-centimeter brain tumor.
The clinic pushed to get him qualified for Medicaid, and a surgeon operated the next day.
More chemo would be too hard on his body. Newton searched for a clinical trial without success. He talked to his late father, asking him to help out with some celestial networking. “When you are dying of cancer, and doing chemotherapy, and feel sick, it is difficult to get onto a computer and find a trial.”
He was referred to the Cancer Institute of New Jersey and told the specialist, “Can you map my genes to cure my cancer using gene therapy? You’ve got to keep me alive until my daughter graduates.” Newton showed a picture of his daughter to make the doctor see him as a person. The doctor had no immediate answer, but — two weeks later — called with a possibility. Not gene therapy, but immunotherapy.
Dr. Matthew Galsky, director of the Genito-urinary Medical Oncology Program at Mount Sinai, invited him to come up the very next day. He enrolled in Genentech’s Phase II clinical trial of atezolizumab (see sidebar, "PCIs Hold Promise in Fight Against Cancer ").
Facing death, Newton was in the process of selling his house to move to Florida to be with his brother’s family. But after nine weeks in the program, the scan showed a significant difference in the size of the tumor. He wasn’t throwing up. He could eat the same day. His daughter was ready to start her freshman year at West Windsor-Plainsboro South. They stayed.
Medical breakthroughs aside, attitude is a big factor in survival. “Accept the fact that you have cancer,” says Newton. He is eager to help cancer patients on a similar journey. “I want to get this story out to help others in the process of trying to live — of finding the right solution for their life,” he says. “If someone is going to die, it also includes how to die properly.” Some tips:
Organize or be overwhelmed. Managing cancer — doctors, appointments, procedures, tests — is like managing a project (hopefully, a long-term project). Unless a family member or friend can do it for you, become your own advocate.
Scheduling. Getting the appointment you need — when you need it — is the hardest part. “You have to really play politics, to work in the system,” says Newton, who spent the first part of his career working in China. “I used what I learned in China, where they wheel and deal. They give each other gifts, so that later they can come back and ask you to do something. Gifts may not be appropriate here, but send a Christmas card to the receptionist and maybe some candy. Their job is strenuous, and I try to make them my friends.”
Learn how hospitals work. Determine the key players, so that if one person won’t help, you can go above their head. “But you can’t be pushy and abrasive. Be ingratiating and friendly and help them to see you as a likeable person, not a patient.”
Speak up for yourself. All too often healthcare systems don’t see you as a person, says Newton. When a New York hospital tried to schedule him for the “next available” appointment at 1 p.m., he balked. “I have a daughter I have to take care of, and an 80-minute train trip, how can I pick her up from school and prepare dinner?” Now he gets “triple booked,” if needed, for the early morning times.
Cancer patients or their advocates need to be hound-dog focused in order to sniff out the best possible care, but they also need to stay positive. “You have to smile,” says Newton. “I smile because it makes other people smile. I smile because it feels good, even when your circumstances are dire. When it stops being fun, I will stop doing it.”
But he is realistic. When he was at Princeton High School, his brother David Smith Newton and his brother’s best friend died in a motorcycle accident in Colorado. About that same time a senior at Princeton High was murdered. “We had these deaths — one intentional, one accidental — I saw life was so fragile. From age 15 on, I recognized that death was a part of life. I enjoyed friendships and tried to do my best. Everybody’s got to die.”
So though Eric Newton is no stranger to death, he lives his life to the fullest — like his father, Len, a true social justice pioneer.
The family belonged to Witherspoon Presbyterian Church, a mostly black congregation. “He had the idea that skin color shouldn’t matter and that integration was coming, that you should become the change you want to see,” says his son. In 1954 Len convened a group to open up Princeton’s harshly restrictive real estate practices; professional African Americans were prevented from buying or financing houses on “white” streets.
Len worked with Jim Floyd (who would later become Princeton’s first African American mayor), a Philadelphia real estate developer, and civil-rights minded people who could front the money to develop two intentionally integrated neighborhoods, Glen Acres on Alexander Road and an area around Mount Lucas Road and Dempsey Avenue. Eric grew up on Dempsey and now lives in Glen Acres.
An alumnus of MIT, Len Newton started out as an account executive at Opinion Research Corporation and Response Analysis. But his best work, says his son, was as a social engineer — as an entrepreneur. “He was always holding meetings, trying to bring people together.” After spending two years in China during World War II, he conducted MIT tours of China, established several joint ventures there, and supported the invention of a Chinese character keyboard.
“Len was a change agent well into his late years,” says Ram Iyer, former president of the MIT Club of Princeton and the CEO of the Midmarket Institute in Princeton. “Len Newton had founded the MIT Club here in 1975 and ardently supported it — recruiting new alumni in the area, counseling club officers, making introductions for alumni who were seeking to expand their businesses or look for a job. Well into his 70s, when there was a vacuum in the leadership, Len stepped in as the club president. He was a big stickler for constant and effective communications.”
Near the end of his life Len shifted his attention from racial justice to economic and political problems and was almost obsessed by the effects of the economic downturn. In his final years, when he was dying from cancer, he mustered all his available energy to convene groups for creating jobs.
Len’s wife, Ruby, was a speech therapist, and her home was a convivial hub. “Eric and his family have always welcomed us in their home and their hearts,” says Gabrielle Kline, who grew up in the integrated community. “There’s always a celebration when you’re with them!” All three surviving children have multiracial families. Daughter Julie lives in Princeton and Alex in Coral Springs, Florida.
Not much can topple Eric Newton’s confidence. In 1966 his parents took him to demonstrate for peace at the White House. He was four years old, and in the first 15 minutes he got lost. His parents stayed on the march, only later circling back to pick him up. He was fine. Two decades later he was ready to enroll at Beijing University for a master’s degree in linguistics when, just before his departure, came Tiananmen Square. He went anyway, one of only a dozen people on the Boeing 747 bound for Beijing.
But like most youngsters with undiagnosed dyslexia, Newton struggled in school. Somehow he made it through the Princeton school system. Hiding the fact that he could not read music, he sang in the high school’s renowned choir — a tenor with a Pavarotti-like range. “If I heard it three times, I could memorize my part.” Popular and always ready with a quip, he earned the title of Class Clown. But he also earned a prestigious spot as a Peer Group leader in the just-beginning program (founded by Sharon Powell) that has now spread country wide. “But when I graduated, I could not write a decent paragraph.”
He was rescued by dyslexia education pioneer Marsha Lewis, founder and director of the 40-year-old Lewis School of Princeton. After 18 months at the Lewis School he tripled his SAT score, got into Boston University, and graduated in 1989. Then he traveled in China, riding camels in the Gobi desert with his intrepid father, and becoming enamored of the Chinese way of life with its emphasis on family.
Fluent in Mandarin, he worked in China for the next 12 years as an executive at five star hotels. With his own consulting firm, Global Business Management, he had a contract with Henderson Land, one of Hong Kong’s largest business enterprises. He also married a Chinese woman. In 2001, when the couple was living in Princeton, Jasmine was born, “my greatest joy.”
The following year he joined his wife in working at a customer call company co-founded by his friend Scott Kline. The company was sold, and the Newtons followed their jobs to California.
When Jasmine was five, the Newtons went through an amicable divorce. His wife’s parents were in China (she was supporting them) and his parents were available to help with child care, so she relinquished custody and he moved back to Princeton in 2007 to be Mr. Mom. He has all legal rights, but his former wife Skypes, visits during holidays, and hosts their daughter for summer visits.
The prognosis for Eric Newton is OK — for now. His life insurance will eventually help his daughter. But now that he is going to live, at least for a while, he may have to sell his house. He is out of work and living on disability because of his peripheral neuropathy. He hopes to raise money on Go Fund Me (www.gofundme.com/NewtonLifesupport).
He strongly advocates for clinical trials, no matter what the outcome, but he wishes trial participants could share in eventual profits “or at least be taken care of somehow. They will make millions if not hundreds of millions of dollars. Perhaps they could do something for those brave enough to be in the trial?”
Meanwhile Newton nurtures his immune system. He and his daughter grew eight varieties of organic vegetables in a big back yard garden last summer. “On one side of the family we are farmers, and I wanted to share my roots and be sure she can take care of herself, growing her food.”
He is trying to rehab and go back to yoga. “I could do a full split two years ago, today it is difficult to do a ‘downward dog.’ But in yoga, you meet your challenges from where you are. Looking into the past only brings anxiety. Yoga gives me freedom from the world.”
He brings the focus of yoga to self healing and shares this example: “As a kid, when I had a wart under my toenail, it kept coming back. My father read me a story about somebody who healed themselves and said ‘It is your wart. You can do what you want with it.’ I wished it away. Every day I looked at my wart and it went away.”
So now he meditates while the medicine is dripping into his bloodstream. “I put my hand over my abdomen and send energy through my brain. We use only a small percentage of our brains, and I try to increase that through yogic breathing. I hold my hands over where my cancer is, and I imagine them shrinking. I use my mind to heal my body. I use my breath.”