Cured: The John Cleland Story

CUREWinter 2004
Volume 3
Issue 4

Pulled back from the brink of death, this Indiana man was cured.

The moment: September 1974. John Cleland was dying. He had failed three grueling chemotherapy regimens, his weight had dropped to 106 pounds, and the cancer that began in his right testicle had now spread to his lungs.

The doctor delivering the bad news, Lawrence Einhorn, MD, a medical oncologist at Indiana University Medical School, had been seeing the 23-year-old Cleland since his initial diagnosis a year earlier in November 1973.

They sat in Dr. Einhorn's office. Neither spoke.

"I think he felt sorry for me," says Cleland today. "Finally, he said, 'Well, there is one other thing we can try.'"

Three weeks after his first injection of the then experimental drug Platinol® (cisplatin), Cleland was back at the hospital for his second treatment. From the vantage point in his hospital bed, he recalls sensing rather than actually seeing that something was happening in the hall where Dr. Einhorn and oncology nurse Becky Bond were viewing the new scans of his lungs. When Dr. Einhorn walked into his room he was smiling; Cleland knew something was up.

“He just looked at me and said, ‘John, I think you are going to make it.’”

The scans were clear. They were so remarkably different from Cleland’s previous scans that the radiologist was concerned he had confused Cleland’s films with another patient. He hadn’t. The tumors in Cleland’s lungs were gone, melted away.

The fortuitous meeting of patient, doctor and drug heralded a moment that thousands of cancer patients dream of—cure. But that it almost didn’t happen underlines the often serendipitous discoveries of cancer treatments.

In the early ’70s Dr. Einhorn found himself at a crossroads. Since beginning medical school his path had been clear—become a cardiologist and go into practice with his father in Dayton, Ohio. But his father had become ill and retired, leaving the son open to other possibilities.

“We were allowed to take an elective during the last two months of internship and I took hematology oncology to see what it was like.”

What Dr. Einhorn found was a field that was wide open to discovery and where the patients had significant symptoms and illness. After the first round he decided to do a second, being drawn into a specialty he found was “more complicated and more human.”

“Everyone faces illness, but I was struck by what cancer patients go through compared to other patients,” says Dr. Einhorn, who was now enamored by the challenges and faces of cancer.

Dr. Einhorn was also drawn to the idea of research and teaching. A two-year stint in the military gave him time to confirm his sense that oncology was a place where he could make a difference.

Oncology was still a new field in the early ’70s and to get additional training after one year at IU Medical Center, Dr. Einhorn had four options: the National Cancer Institute in Washington, D.C.; M. D. Anderson Cancer Center in Houston; Memorial Sloan-Kettering Cancer Center in New York City; or Roswell Park Cancer Institute in New York. He chose Texas, returning to Indiana in 1973 where he began working with John Donohue, MD, a surgeon who was exploring treatments for testicular cancer.

When he began working with Dr. Donohue, Dr. Einhorn’s exposure to testicular cancer had been limited to only a few patients in Texas, but he knew, as Dr. Donohue did, that it was a killer once it moved beyond the testicle. Indeed, at the time the cure rate was only 5 to 10 percent. Both physicians knew there had to be a better treatment for this cancer, which took mostly young men.

One of the first papers Dr. Einhorn read about treating testicular cancer looked at a very small sampling of patients with testicular cancer who had been given a new platinum-based drug called cisplatin.

The drug was only seconds away from being rejected, Dr. Einhorn says, because of toxicity to the kidneys and other side effects, such as severe nausea, vomiting and nerve damage.

Dr. Einhorn felt he might be able to address the kidney issues with hydration and the nausea with antiemetics. He designed a protocol that would cap the dosage at four courses over three months to reduce other side effects.

But there was still the issue of finding the right patient. “You can’t just pick someone and say, ‘I am going to treat them,’” Dr. Einhorn says. “You had to get the drug protocol, have it approved by the institution and then you can get a patient. John was the first eligible patient.”

Cleland was also the right patient because nothing else had worked. He had no other options.

John Cleland married his college sweetheart, Judy, on June 2, 1973. Two months later, he found a hard spot on his right testicle.

Because it didn’t hurt, Cleland, who was busy finishing his last semester at Purdue University with a major in animal science, paid little attention to the spot. When it did begin to hurt, he saw an internist who reassured him it was nothing, but “just in case” referred him to a urologist.

Between the internist visit and the urologist visit, the testicle swelled in size. In early November, Cleland saw the urologist on a Tuesday and had the testicle removed on Thursday morning.

At 22, Cleland learned he had testicular cancer.

At first, he says, he wasn’t overly concerned.

“After the orchiectomy they sent me to the IU Medical Center to have the retroperitoneal node dissection in a nine-and-a-half-hour operation.”

Cleland, who underwent the node dissection on his parents’ 26th wedding anniversary, came out of surgery with a scar from his waist to his breastbone. Of the 53 nodes removed, two indicated microscopic malignancy. A few days later he met Dr. Einhorn for the first time and began standard chemotherapy.

Only three months later in February 1974, the cancer was back. This time Cleland started a chemo cocktail that included Adriamycin® (doxorubicin), Blenoxane® (bleomycin) and Oncovin® (vincristine), referred to as ABO.

“Those drugs got your attention,” Cleland recalls. “We were living in Lafayette and Judy was working full time and going to school full time to finish her engineering degree from Purdue, so my parents or friends would bring me down for treatment. With the ABO I went from 158 to 106 pounds.”

Cleland suffered mouth sores so severe he couldn’t eat or drink. He spent some 60 days in and out of the hospital from February to June, and his physical condition deteriorated. He recalls one day in early June 1974 when Judy suggested they sit outside their apartment and enjoy the day.

“So we did. We went out and sat under a tree and when it came time to go in, I couldn’t get up. I half crawled and got about halfway to the apartment and my cousin came by with her husband, Nelson, and their little boy. Nelson picked me up like a baby and carried me inside. I was in bad shape.”

By July, Cleland couldn’t handle the ABO combination and Dr. Einhorn switched to Actinomycin D (dactinomycin) once a month, a drug Cleland says made the others look easy when it came to nausea and vomiting. In September, Cleland had his fateful conversation with Dr. Einhorn.

“Until then I was always confident I would survive,” says Cleland. “My heart was pounding. My mind was racing. I didn’t say anything and he didn’t say anything.”

Then Dr. Einhorn recommended an experimental drug called cisplatin. Cleland discussed the drug and his prognosis with Dr. Einhorn, he says, exploring how long he might live and progression of the disease.

“I thought, ‘Well, I don’t have anything to lose. I might as well try it.’”

Cleland doesn’t hesitate as he recalls his first injections, drawing on the survivor’s crystalline memory of moments in the cancer journey.

“I had the first injection on October 7, 1974 of cisplatin, Velban® (vinblastine) and bleomycin. I was in the hospital for five days and got an injection every day.”

It was when Cleland went back for the second treatment that everyone watched a miracle unfold; 10 days after the first treatment, the metastatic tumors were gone from his lungs.

“I was lying there thinking about getting my things in order,” Cleland recalls, “and then Dr. Einhorn comes in, and I can tell you this, when he told me the news I was not touching the mattress, I was floating. It was the greatest feeling in my life.”

Cleland says he called his wife immediately but couldn’t get her on the phone. The second call was to his parents. Only the week before, he had told his dad he didn’t think he was going to make it and asked him to tell his mother.

“I don’t remember my exact words but I told her what Dr. Einhorn said and we cried like babies.”

He underwent two more treatments, one on Thanksgiving Day, which his nurse came to his home to provide.

Then it was time to watch and wait, a grueling period of not knowing for the doctor and the patient. Indeed, the entire oncology community was holding its collective breath to see if indeed a metastatic solid tumor could be cured.

Six months later when the cancer had not reappeared, there was hope. A year later when the cancer had not reappeared, there was a new word being used: cure.

“The initial dramatic resolution of tumor was very gratifying and in all honesty very surprising,” Dr. Einhorn says. “The larger moment was that these remissions were durable, and at a year out we had about a dozen patients who were remaining in complete remission, which, because of how fast the metastases grow, was remarkable. We knew then that even if there were a few people, it was doing something incredible.”

Incredible indeed.

It’s a Sunday morning and John Cleland sits in his Indianapolis home and recalls those days with a clarity that cancer survivors know well, despite the fact that it has now been 30 years since his treatment.

He jumps up when he hears the car return from church and welcomes home his wife of now 31 years and 16-year-old twins, Brice and Cecelia. The Cleland’s older son, Chris, is finishing his junior year at Purdue. This father is quick to point out each child’s academic and athletic accomplishments.

When the Clelands talk about the cancer experience, it’s clear its impact remains an indelible part of their current lives. John Cleland describes the period when treatment was over as the best of times and the worst of times.

“It was the best because of the need Judy and I had for each other at that time and the relationships we had with family and friends. You appreciated each and every day and all the small things,” he recalls.

During the months of watching and waiting, John and Judy Cleland tried to get back to being a young married couple planning for the future, one that now included many unanswered questions. It affected both in myriad ways.

John Cleland, whose lifelong goal had been to manage a dairy farm, had completed his degree and taken a job at the University of Missouri before cancer forced him to return to Indianapolis and treatment. His next job was regaining his health. When it appeared the remission was going to be durable, he felt he wanted to give back. He earned his teaching certificate in biology and began teaching at Zionsville Community High School, a job he continues today.

Judy Cleland, despite pursuing an engineering degree from Purdue, always saw her future as a full-time mother.

“John’s cancer made me more of my own person,” Judy Cleland says. “All of a sudden it was no longer that I was going to work for a few years, then quit, have four kids and be a Brownie leader the rest of my life.”

Instead of rural farm life, the Clelands stayed in Indianapolis. And when Judy was offered a job, John encouraged her to take it since she had assumed the financial responsibility for the family during his illness.

“I owed her everything I had. It was an interesting dynamic,” Cleland says. To which Judy quickly replies, “We just did it. That is just what you do. I like to say that the women’s movement hit us a little early.”

By the time the couple began a family, Judy Cleland had established a successful career as an environmental engineer, consulting with a number of private companies as well as the state of Indiana, a career she continues to build while also balancing family demands.

“We waited 10 years to have children,” Cleland says, explaining that despite the severity of his treatment, they were conceived naturally.

Christopher Blane Cleland was born June 4, 1983 and named for two friends who had seen the Clelands through cancer. Twins Brice and Cecelia were born five years later.

Ironically, it was the summer his first son was born that Cleland ended up back in the hospital with a late effect of chemotherapy—viral myocardiopathy, a condition he discovered while training for a marathon that requires he keep his heart rate below 140.

But soon life became one of children and school and athletics for the Clelands. And, while Judy Cleland says she mostly looks at the cancer as ancient history, she wanted to honor what she calls John’s indomitable spirit by nominating him to carry the Olympic torch in the 2002 relay, which traveled through Indiana.

Out of more than 200,000 Hoosiers nominated, Cleland was one of 142 to carry the torch, running along a stretch of Indianapolis street lined with family, teaching colleagues, friends from college and former students.

Dr. Einhorn and the Clelands have remained friends over the years as it became clear Cleland had indeed been patient zero for what would become the standard treatment for men with advanced testicular cancer.

Today advanced testicular cancer has a 75 percent five-year survival rate, and Dr. Einhorn estimates more than 100,000 men and boys have been cured of testicular cancer since John Cleland agreed to the first treatment of cisplatin.

The Clelands threw a party in 1999 to celebrate 25 years of remission and honor the family and friends who supported them. More than 100 people came, including Dr. Einhorn, the nurses who cared for Cleland and friends and family. Cleland recalls that it was an eye opener for his children, particularly for his oldest son Chris.

“He said, ‘Dad, I knew you were sick, but all these people told me how really sick you were,’” Cleland says. “It just hasn’t been a part of their lives.”

Few of his colleagues at Zionsville Community High School don’t know about Cleland’s history. In fact, he is often called upon to talk to young men who are newly diagnosed, and he is the resident expert in health classes, which in Indiana are required to discuss early detection for both breast and testicular cancer.

Cleland’s colleagues were eager to talk about his commitment to teaching, his leadership, his love of his students and his spirit, which was all summed up by Principal John Eggers.

“John doesn’t have bad days,” Eggers says.

Today, as Cleland continues to educate about testicular cancer, Dr. Einhorn continues looking at new uses for cisplatin in other cancers and a way to treat the 25 percent of men with advanced testicular cancer who do not respond to cisplatin. Although testicular cancer only accounts for around 1 percent of all cancers in American men, it remains the No. 1 cancer killer of men between 15 and 34.

“These are often teenagers and we keep looking at what we can do,” says Dr. Einhorn, who is encouraged by new discoveries such as Velcade® (bortezomib) and Gleevec® (imatinib) and hopes other new drugs for those who fail chemotherapy for testicular cancer are just around the corner.

Cleland and Dr. Einhorn talk a few times a year, and Dr. Einhorn had a special surprise for Cleland at his 25th celebration party in 1999.

During the party Cleland was called to the phone by a friend who said someone wanted to talk to him.

“I said hello and this guy says he is Lance Armstrong and I kept saying, ‘Sure, who is it really?’ He convinced me it was him because he knew some piece of medical information that Larry probably told him. He thanked me for being the first. I told him I didn’t have a choice.”

While Cleland was one of Dr. Einhorn’s first patients, undeniably his most famous patient is cyclist Lance Armstrong, who sought out Dr. Einhorn after his advanced testicular cancer diagnosis in 1996. Armstrong had been given a less than 40 percent chance of survival at diagnosis because his cancer had already metastasized to his lungs, brain and abdominal lymph glands.

Dr. Einhorn watched Armstrong win his first Tour de France in 1999 from his home in Indianapolis. “Pride doesn’t even express my feelings when I saw him,” he says today. “He had overcome so much and become such a better person. From a focus on himself to the focus on the cancer community.”

Cleland had a chance to meet Armstrong face-to-face when he and Dr. Einhorn were on the stage to greet the cyclist when he rode into Indianapolis during the 2003 Cycle of Hope. Dr. Einhorn sent out invitations to former testicular cancer patients to join him at the city’s field house, thinking he would introduce Armstrong and a few patients would show up.

“They opened the door at 9 a.m. to the field house where the event would take place and here came all these men and their wives and children. I was looking at my life’s work walking toward me.”

More than 300 former patients came that day, and Dr. Einhorn recalls that when he went to the microphone and said, “Hi, I am Larry Einhorn,” there was a five-minute standing ovation.

“I introduced Lance after the applause died down and he got great applause. I whispered in his ear that I thought they liked him. He said, ‘Yes, but they love you.’”