Brian Koffman, MDCM
A family physician who lives in southern California, says he has
“an unwillingness to accept the impossible.”
That attitude has served him well in his battle with chronic lymphocytic leukemia (CLL), a blood cancer that ranks as the most common adult leukemia in the Western Hemisphere and is incurable with current therapies.
Many CLL patients have an indolent form of the disease that requires close monitoring only; median survival for them can exceed a decade. But Koffman for several years has been fighting an aggressive genetic variant of CLL that defied treatment until he entered a clinical trial at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James).
The trial involves a targeted experimental drug called ibrutinib that, in early clinical testing, has produced durable remissions with few side effects among patients in all subsets of the disease, including those – like Koffman – with relapsed or refractory CLL who have few or no other therapeutic options.
Since being diagnosed at age 54, Koffman has combated his illness with everything from alternative medicine (e.g., Chinese herbs and changing his diet to vegan), to an emergency splenectomy (spleen removal), to a combined therapy involving the drugs cyclosporin and rituximab, to a stem cell transplant.
The combined drug regimen put him into remission, after which he underwent the stem cell transplant at City of Hope Hospital in his home state, where all of his other treatments had taken place. The transplant kept him in remission for six months.
After relapsing, he sought still other options. As a physician who had familiarized himself with medical literature about his cancer, he was aware of John C. Byrd, MD, a CLL specialist at the OSUCCC – James who was reporting amazing results among patients being treated with ibrutinib in clinical trials here and at a few other sites around the country.
When the American Society of Hematology (ASH) held its annual meeting in San Diego in 2011, Koffman met with Byrd and agreed to enroll in an ibrutinib clinical trial at the OSUCCC – James, since the drug wasn’t available in trials in California. Samantha Jaglowski, MD, is principal investigator for the study.
“It was one of the best decisions I’ve ever made,” Koffman says. “My form of CLL has a lot of cytogenetic complexities – mutations that give me a poor prognosis – and it would not respond to most therapies. I was basically out of options.”
Koffman entered a section of the three-cohort trial that involves chemotherapy with the drug ofatumumab followed by oral administration (pills) of ibrutinib, which belongs to a class of drugs called B-cell receptor (BCR) antagonists. BCRs are overexpressed (too active) in CLL, but ibrutinib counters that condition by inhibiting a certain protein that is essential for BCR signaling.
Early in the trial, Koffman lived in Columbus so he could receive weekly infusions of ofatumumab. When the infusions were reduced to monthly, he returned to California and flew back to Ohio for each procedure.
After the ofatumumab portion of the trial ended and he started taking daily ibrutinib pills, he continued his flights to the OSUCCC – James for periodic monitoring.
In February 2013, he completed the yearlong clinical trial and entered a “continuation” trial in which he will take daily ibrutinib and report back to The James every three months for monitoring.
In his widely read blog, titled “Brian Koffman’s Awesome Transplant and CLL Adventure” (http://bkoffman.blogspot.com), he wrote when starting the continuation trial that his labs were stable “with essentially normal red blood cells, white blood cells and platelet counts and differential, and boring blood chemistries…Dr. Byrd is very happy with my progress.”
He was thus headed back toward a relatively normal life with his wife Patty, their four adult children and grandchildren, and with his patients and colleagues. He spends a lot of time traveling and giving medical lectures, some of which involve CLL, which has become almost a subspecialty for him because of all he has learned about it.
“I’ve lectured to more than 2,000 primary care doctors on targeted therapies and clinical trials for CLL,” Koffman says. “As a physician, I can translate medical information, and I think I have an obligation to explain it to others.”
He shares Byrd’s enthusiasm about ibrutinib, considering it “my lifeline.”
“With ibrutinib, my swollen lymph nodes started shrinking within a week, and I now have no palpable nodes,” Koffman says. “I feel better, my energy’s improving and I’ve had almost no side effects, just some mild rashes and a little gastrointestinal trouble.”
He offers two bits of advice for patients with a life-threatening illness. One is to “put together the right medical team that includes an expert in that disease, especially if it’s a relatively rare one like CLL.”
The other is to strongly consider entering a clinical trial, “not just because it’s a good thing to do for the community by helping to advance medical science, but also because it may have a significant upside for you as a patient.”
He notes that the OSUCCC – James has “expert teams that are set up to do clinical trials. Dr. Byrd says trials are for patients, not the other way around, and he does everything he can to make sure patients can stay on trials that are proving beneficial. You get the sense that you’re being taken care of there, and not just a check mark in a box.”
Clinical trials also may have downsides, he adds, but ultimately they are the mechanisms for generating medical knowledge that leads to cures. “The only way these novel drugs will ever become available to people outside of clinical trials is for more and more qualified patients to enroll in the trials so the drugs can be proven effective and approved by the FDA as standards of care,” Koffman says.
He also is aware that, although some CLL patients are on their second or third course of ibrutinib treatment with no relapses, resistance to the drug could eventually occur for him and others. That’s why still other promising drugs are under development.
“I often say there’s never a good time to get CLL, but there’s never been a better time to get it either, thanks to these emerging targeted therapies,” Koffman says. “I wouldn’t be doing all that I’m doing now without the clinical trials. I’d be in dire straits.”
When Gerri Speer’s physician told her she had breast cancer in July 2009, she thought she had heard the worst. She hadn’t. A week later her surgeon told her she had triple negative breast cancer, an aggressive subtype with a high recurrence rate and a poor overall prognosis.
Patients with triple negative have tumors that lack three hormone receptors – estrogen, progesterone and HER-2 – that are used to determine treatment for other forms of breast cancer. Consequently, treatments that target one or more of these receptors are not effective for triple negative.
“After first hearing that I had breast cancer, I set out to learn as much as possible about it, arming myself with knowledge about the different types, the most current treatments, the odds of recovery and the changes I’d need to make as I prepared to face this challenge,” Speer recalls.
Based on her initial research, she felt fortunate not to have triple negative. “So when
I learned that I did in fact have triple negative, my heart hit the floor,” she says. “From what I knew, there seemed very little room for optimism.”
But her medical team at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James), led by medical oncologist Charles Shapiro, MD, and surgical oncologist William Farrar, MD, offered hope by suggesting she enter a clinical trial for patients with aggressive breast cancer.
Speer took it under advisement and launched a feverish campaign to find the best possible treatment option anywhere in the nation.
“After phone calls and emails to specialists in triple negative breast cancer at other well-known cancer hospitals, I had a solid roadmap for my cancer journey,” she says.
“I immediately had sets of X-rays, pathology and lab reports sent off for second and third opinions regarding treatment options. Within days I had scheduled interviews with leading oncologists at these hospitals.”
Following a frenzied week of travel and testing, she evaluated her choices.
“Considering what I had learned, it became evident that the very best program for me was the clinical trial at The James,” she recalls. “To me, entering that clinical trial was an obvious choice. I knew I would be monitored very closely and that I needed the most aggressive therapy for my form of cancer.”
In August 2009 she entered a phase II neoadjuvant (presurgical) clinical trial that involved three chemotherapeutic experimental drugs: nanoparticle albumin-bound paclitaxel (nab-P) along with carboplatin and bevacizumab. The trial, designed for women with clinical stages II-III HER2-negative breast cancer, was led by principal investigator Ewa Mrozek, MD, a breast cancer specialist and researcher at Ohio State.
“Bevacizumab and carboplatin have been shown to improve outcomes when added to taxanes in patients with metastatic breast cancer,” Mrozek says, “and nab-P has demonstrated superior efficacy and safety compared with paclitaxel or docetaxel in patients with metastatic breast cancer. We hypothesized that adding bevacizumab to neoadjuvant chemotherapy with weekly nab-P and carboplatin would increase the rates of pathologic complete response.”
Mrozek says 33 women were enrolled in the study, including 12 with triple negative breast cancer. Of those 12, six – including Speer – had a complete pathologic response, meaning no cancer could be detected in the breast and lymph nodes at the time of breast surgery.
Speer remembers the six months of her treatment regimen as a difficult time in which she experienced grueling side effects, but she was determined to remain strong.
“Like others, I did my best to maintain a positive attitude and carry on,” she says. “My goal was to never miss a treatment. Even though it was extremely difficult, deep in my heart, I never wanted to not go. One Tuesday I was so physically ill that my oncologist suggested I take a much-needed break. I absolutely refused. In my mind every treatment meant that I was getting exactly what I needed, even though my body rebelled.”
Her persistence paid off with a complete response, but many more months of treatments lay ahead. She underwent eight weeks of radiation therapy followed by six more months of chemotherapy with bevacizumab. Her last treatment was in October 2010. For the next three years she would be monitored by her treatment team, visiting the hospital every three months.
“In the meantime,” she says, “I am living my life, business as usual, and hoping more women will realize that a cure for breast cancer will never be found unless we take advantage of the opportunity to participate in clinical trials.”
She also has established the Geraldine Dixon Speer Triple Negative Breast Cancer Fund at The Columbus Foundation to raise money for researching this disease at the OSUCCC – James. Besides her initial donation, she donates part of the annual profits from her business, Corporate Interior Concepts in Grandview, Ohio, to the fund.
“After 15 months of what I consider to be the best treatment possible, I am enjoying my life cancer-free,” Speer says, adding that, for a time, she volunteered weekly in the infusion room at The James before taking a leave to help care for her older sister, who was diagnosed with an inoperable brain tumor and also became a clinical trial patient at The James.
“I volunteered at The James because I believe in giving back,” she says. “I encountered a lot of other women with triple negative and told them, ‘I got out of that chair, and you can too.’
“Like all cancer patients, I have to live with the possibility that my cancer will one day return,” she adds, “but I’m at peace with it. I’ve learned to accept whatever comes my way. My hope is that the research being conducted at The James and other leading research hospitals will lead to a cure for triple negative breast cancer.”
A career in biology didn’t pan out for Wally Yocum of Marietta, Ohio, but that doesn’t mean he can’t help to advance the field.
Yocum, a technical manager at the Marietta branch of RJF International Corp., has a biology degree from Fairleigh-Dickinson University in New Jersey that he pursued partly because he “thought maybe I could help find a cure for something.”
Years later, he’s doing just that by participating in clinical trials for patients with chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James).
CLL, the most common form of chronic leukemia in the Western Hemisphere, is a currently incurable hematologic malignancy with which Yocum was diagnosed in August 2008. A regular blood donor for many years, he was surprised when a technician at the donor site told him his hemoglobin was too low for him to donate that month. He later saw a doctor who discovered that Yocum’s white blood cell count was very high.
“He called me on a Friday night and told me to go to the Emergency Room immediately,” Yocum recalls. The next day, Kelli Cawley, MD, an oncologist at Marietta Memorial Hospital, told him he had CLL, and he began 18 weeks of FCR chemotherapy (involving the drugs fludarabine, cyclophosphamide and rituximab).
This led to a partial remission, but when Yocum’s blood cell counts rose again in mid-2009, Cawley referred him to John C. Byrd, MD, a CLL specialist and researcher at the OSUCCC – James, where Cawley had completed her fellowship training after earning her MD at Ohio State’s College of Medicine. After careful consideration, Yocum agreed to have Byrd place him on a clinical trial involving the drug flavopiridol from July to September, and Yocum achieved a partial remission that lasted 15 months.
When Yocum’s blood cell counts started rising yet again, Byrd suggested a clinical trial that involved a promising agent called ibrutinib (formerly PCI32765) in combination with ofatumumab, a drug approved by the FDA for treating CLL that doesn’t respond to other standard CLL drugs. Yocum would take ibrutinib orally as three tablets once a day and receive weekly, and later monthly, infusions of ofatumumab. He agreed and was placed on the trial in October 2011.
Ibrutinib is the first drug designed to target a certain protein that is essential for CLL cell survival and proliferation. Earlier preclinical work under the direction of Byrd and Amy Johnson, PhD, with CLL tumor cells in the laboratory showed this agent had promise as a therapy for this disease. A phase Ib/II clinical trial evaluating PCI as a single agent at the OSUCCC – James and elsewhere had subsequently shown promising results.
“This is an exciting agent,” says Samantha Jaglowski, MD, principal investigator for this phase II study. “It seems to be a highly active oral therapeutic that produces remissions often lasting months on end in patients with relapsed and refractory CLL. These responses last for many months in part because patients are willing to remain on the drug since the side effects are very tolerable.”
This trial is being conducted only at Ohio State for patients with relapsed or refractory CLL, small lymphocytic leukemia or prolymphocytic leukemia.
Yocum has completed his ofatumumab infusions but remains on ibrutinib and will continue to have monthly visits to The James for monitoring. His hope is that the drug will keep working for him so he won’t need a stem cell transplant that could lead to serious complications.
He admits he was initially apprehensive about enrolling on clinical trials, but now he’s glad he did.
“Before the first trial, I’d read about possible side effects, and it was frightening to envision all those things,” he says. “But I wanted to do something that was medically beneficial because I knew I could no longer give blood. That thought process returned with the second trial, but once again I’m glad to be doing it.”
He feels blessed to have been a patient of Dr. Cawley and now of Dr. Byrd, and considers himself lucky to be part of Dr. Byrd’s innovative studies.
“To get groundbreaking treatments by a world-renowned physician so close to home is wonderful. And there’s always the chance that ibrunitib could eventually become the first line of treatment for CLL,” Yocum says, adding that this therapy has had the fewest side effects and been the least physically challenging of all his treatments.
A trial that will follow this one to better identify who can be treated with just ibrutinib versus combination therapies (such as the ofatumumab + ibrutinib study that Yocum participated in) will be supported by revenue from Pelotonia, an annual grassroots bicycle tour that raises millions of dollars for cancer research at the OSUCCC – James. Yocum was a rider in Pelotonia 10 and hopes to ride again in the future.
In fact, his cancer experience has gradually made him much more outspoken than he was at first about both his illness and the importance of taking part in clinical trials to help improve therapy.
“At first I was secretive about it,” he recalls. “I was a healthy man in his mid-50s who had never been hospitalized, and I thought of myself as invincible. To find out I had CLL caused me to wonder what I had done wrong and how I could have avoided it. So I didn’t talk much about it.”
Now he’s much more open, speaking to groups about his experience, attending a major CLL conference and offering clinical trial testimonials.
“Since 2008, I’ve been in and out of treatment a few times, and it always involves a mental shifting of gears,” he says. “It helps to have a devoted caregiver like my wife, Marilyn, with me every step of the way – someone to hear what the doctors say, ask questions and talk things over with me. She has helped me immeasurably and been very supportive of my decision to participate in clinical trials.”
“I’m also doing this so that maybe someday others won’t have to go through it,” Yocum explains. “Maybe I can be part of a trial that leads to a cure, or at least to a better treatment. The number of people you can help by doing something like this is infinite.”
From the beginning of her breast cancer journey, Tracy Palmer knew she wouldn’t be going it alone.
Her close-knit family – husband, five children and three grandchildren – has made the incredible journey with her.
When she had chemotherapy, her husband Tim and her teenage daughters Shauna and Tianna, along with their friend Jacqui, shaved their heads in a show of support.
When she went shopping for a wig, three of her five children – including son Tim Jr. – tagged along to help make the selection.
And each of her kids (including Tabby, Samantha and grandchildren) accompanied her husband and her to at least one of her chemotherapy sessions at The Ohio State University Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James) so she could show them that her cancer treatment “was really not scary.”
“Your imagination is always worse than the truth,” says Palmer, a facilities space analyst at Ohio State’s Medical Center who describes her family as “a touchy-feely, huggy, goofy and fun” bunch of folks. “I thought that if my kids could see me feeling OK and still laughing during treatment, it might help them be less concerned.”
Just as important, her family has seen the positive steps she has taken by participating in not just one but five clinical trials and also contributing to a tumor sample bank – valuable contributions to the global war on cancer.
And she’s always watching for other studies to enter.
Palmer admits she was at first reluctant to enroll on a trial, but now she is “very passionate about them. I want to help end the myths surrounding these studies and make people understand how important they are for advancing cancer treatment.”
The first trial that she joined was for chemotherapy following her single mastectomy – a randomized study to compare four rounds of AC therapy (named for the drugs Adriamycin, which is now called doxorubicin, and Cytoxan) with four rounds of Taxol therapy. She was in the group receiving Taxol, the newer drug.
“As I thought it over, I realized that the standard of care I would receive was because of people who had participated in clinical trials before me,” Palmer says. “People who I didn’t know had done this for me, so I had a responsibility to do it for my daughters, my granddaughters and for people who I don’t know. These trials aren’t just about me, but them.”
Fortunately, her cancer had not spread. A few months after her chemotherapy ended in April 2009, she began breast reconstruction, a series of surgical procedures that she completed in December 2011. She has had no recurrence and is considered cancer-free, but she remains committed to clinical trials.
One trial she participated in studied the effectiveness of tocotrienol, a natural form of vitamin E, in preventing or reducing scar formation in postsurgical skin wounds. Three others were components of a Stress and Health Study at the Medical Center, including:
- THRIVE (Total Health: Research on Inflammation, Vigor & Energy), which seeks to understand why cancer survivors are more susceptible to fatigue and the role that the inflammatory network plays in it;
- Yoga for Breast Cancer Survivors, which examines the effect of yoga on fatigue, immune function and mood among this population;
- The FOOD Study (Fast Food, Fatigue and Inflammation), which addresses how eating a fast-food-type meal high in saturated fat affects the body’s immune response in ways relating to risks for fatigue and heart disease.
Palmer also has donated tumor samples to the Spielman Breast Cancer Tissue Archive, which represents more than 2,000 breast cancers being used to develop a tissue microarray that enables researchers to evaluate genetic and molecular changes of potential importance to this disease.
She is alerted about future trials for which she may qualify via Ohio State’s Cancer Clinical Trial Matching Service, accessible at www.cancer.osu.edu (type the name of the service into the Search box) and at www.ResearchMatch.com. These services match patients for clinical trials based on disease and treatment history.
In addition, Palmer volunteers as a patient-family adviser at the OSUCCC – James and frequently talks to groups about her experience as a patient and with clinical trials. She has a Facebook Fan Page called The James Cancer Warriors and is on Twitter as BC Survivor08.
“Many people think you join a clinical trial when you’re on your last leg and need experimental medication or that on a trial you may receive only a placebo that does not help you, but these negative perceptions are not true,” she says.
Palmer explains that most trials for patients with a chronic or serious condition are designed to add a newer treatment, or a new treatment combination involving the current “gold standard” of care plus another agent, and compare the outcomes to patients who are treated with just the “gold standard.”
“So everyone receives at least the current standard treatment, and if the newer treatment is successful, those who were receiving the standard treatment are often switched to it,” she adds.
Palmer believes she has a mission to share her story.
“I have a strong faith and believe that everything happens for a reason,” she says. “God can use anything for good, and I’ve been given a lot of opportunities to help others by sharing details of my journey as a survivor.”
A journey that, with her family in tow, continues.
John Brennan of Bexley, Ohio, has heard all the negatives about pancreatic cancer.
He knows it is the fourth-leading cause of cancer death in the United States despite ranking 10th in incidence.
He is aware of its status as the only major cancer with a single-digit five-year survival rate (less than 6 percent) for all stages combined.
And he knows the gloomy statistics for those diagnosed – as he was in February 2011 – with metastatic pancreatic cancer, meaning it has spread within the body.
But he doesn’t let it get him down. At least not much.
“When I was diagnosed, I didn’t mope for very long and didn’t go through all the mental stages they tell you about,” Brennan recalls. “I just felt like, ‘I gotta get after it.’
“I have a weepy day maybe once a month,” he says. “The rest of the time I stay positive. They tell me some 75 percent of patients with metastatic pancreatic cancer die within the first year, so I figure I’ll be in the other 25 percent. Someone has to be in that category. It might as well be me.”
Brennan’s confident, practical outlook has served him well, along with his determination to stay active in public service. (He was nearing the end of his first term as mayor of Bexley and seeking a second term when this profile was written.)
His upbeat attitude also extends to his treatment as part of a phase II randomized clinical trial at Ohio State’s James Cancer Hospital and Solove Research Institute.
“My thinking is that the clinical trial is saving me,” Brennan says. “Some people worry about the negatives of clinical trials, but I don’t see anything negative about something that can help you.”
When he first came to The James with a pancreatic tumor that had spread to his liver, he “decided to get aggressive” with his treatment and allowed his physician, Tanios Bekaii-Saab, MD, medical director of the Gastrointestinal Oncology Program at The James, to enroll him on a clinical trial in which Brennan would receive a cancer-killing virus called Reolysinâ in combination with standard chemotherapy drugs.
Bekaii-Saab is principal investigator for the trial, which is sponsored by the National Cancer Institute and was being offered at only two other institutions.
Reolysinâ is a naturally occurring human reovirus. While reovirus infection in humans is generally mild and limited to the upper respiratory tract, the virus replicates in and is toxic to cells with mutations that activate the signaling pathway of a gene called RAS. Bekaii-Saab notes that RAS mutations are found in about 90 percent of pancreatic cancers, making the RAS pathway a prime target for therapy.
Brennan first underwent three standard chemotherapy treatments in nine weeks. A subsequent scan showed that his cancer had progressed. He then received Reolysinâ, and after nine weeks of treatment with the virus, he had a scan that showed all of his tumors had shrunk and a couple of lesions that had developed on his spine were gone. He has since had additional treatments on the trial.
“The results after my initial treatments were good; I hope future results will be too,” Brennan says. “If I weren’t on this trial, I probably wouldn’t be doing as well.”
One drawback, he says, is that receiving the live reovirus always gives him flu symptoms. “It comes like clockwork – the chills and fever – but it’s well worth it. The Reolysinâ is helping me, so it’s a good trade-off.”
Brennan goes to his mayor’s office daily except for chemotherapy day. That and working at his home computer have helped him stay on top of city business, much to the awe of town officials, who along with many members of the community have expressed support for his battle.
“And when I suggested that I would like to run for one more term as mayor, Dr. Bekaii-Saab said there was no reason not to,” Brennan says. “I’ve been improving and could be even better in the weeks and months ahead.
“Besides, I couldn’t just sit around at home or I’d go crazy,” he adds, noting that he has always been active, not only in his former careers as a restaurant owner and as a Parks and Recreation Department director for three communities over the years, but also politically, having served on Bexley City Council from 1988-95.
“I want to show people that, as mayor, I’m still on the job and can still keep going, that having cancer is not the end of the world,” he says, pointing out that he also receives optimistic boosts from everyone at The James. “The staff here is great, always positive and caring. For anyone with a serious form of cancer, this is the place to come. We’re lucky to have it here in central Ohio.”
He also acknowledges the unceasing support of his wife, Annie, and his three adult children, two of whom are students at Ohio State.
“And my faith helps me too,” he said, noting that his friend Ellen Tressel has given him several “healing Scripture verses that I carry with me and read every day.”
Still, he’s a realist and knows that his disease is treatable but not curable. Yet.
“I’m just hopeful the Reolysinâ will keep me going, and maybe in a couple of years they’ll have something even better for me at The James,” he says. “Early on, when Dr. Bekaii-Saab patted me on the knee and said they would get me through this, or at least buy me some time, I felt like I was touched by an angel.
“I’m grateful for their help, because there’s so much more I want to do.”
Bexley voters re-elected Brennan for a second term in November of 2011. Brennan lost his battle with pancreatic cancer on January 30, 2012.
Don Young, a lifelong central Ohio resident who has survived a rare form of leukemia, wishes he had started delving into genealogy 40 years ago.
He finds it so fascinating that, when he's not volunteering at Ohio State's James Cancer Hospital and Solove Research Institute, he spends much of his time studying and recording the history of his family, and also editing for the Internet what he considers to be important genealogical information about his hometown of Granville and vicinity.
His personal website contains, among other things, links to his interpretations of complete burial listings for three cemeteries, an index to all obituaries and death notices printed in The Granville Times from 1880-1941, and a complete list of birth registrations and corrections filed by individuals in Licking County.
The octogenarian's relatively recent interest in times past may stem from youthful memories of a yarn-spinning uncle.
"He was a great storyteller, but back then I thought it was boring," Young recalls. "If I could hear those stories now, I'd be in seventh heaven."
Young's own story has medically historic connotations.
After being diagnosed in January 1988 with hairy cell leukemia (HCL), a once uniformly fatal disease that was first identified by medical scientists at Ohio State in the late 1950s, Young had the good fortune of being treated at the University with a then-experimental drug called deoxycoformycin (dCF) that was also developed here.
His diagnosis stemmed from an annual exam during which his ophthalmologist detected blood near the back of Young's eye and referred him to a local hospital for a blood test, the results of which were sent to his family physician. "He told me I had a rare leukemia called HCL, but he said I was in luck because the doctor who discovered it was at Ohio State, 'and that's where you're going!'"
Young became a patient of Bertha Bouroncle, MD. In a landmark 1958 paper, Bouroncle had first described HCL as a new subset of leukemia. And in the 1980s, she had formed an Ohio State team that developed dCF to treat it. The team, which included faculty members Eric Kraut, MD, and Michael Grever, MD, was among the first in the world to use this agent to treat hairy cell leukemia, which is named for its characteristic malignant cells that display fine hair-like projections when viewed under a microscope.
"Soon after I was admitted to University Hospital (The James was still under construction and would open two years later), Dr. Bouroncle came in and said 'Good news! You're going to get dCF,'" Young remembers. "I was to be part of a study that was comparing dCF to another drug called interferon in treating HCL, and I was told that the drug I would receive was having an 85-percent remission rate."
He received dCF via chemotherapy for a month and was released. When he returned as an outpatient in July, doctors told him his cancer was in remission.
A decade later, they found his blood counts to be too low, so he received another brief regimen of chemotherapy that restored him to normal. He's been cancer-free ever since, returning only once a year for blood work with Kraut, who is now his oncologist.
"After my initial treatment, I knew the cancer was in remission but that it was not considered cured," Young says. "Dr. Kraut told me that HCL is a slow-growing malignancy for which a five-year disease-free period is insufficient to consider a patient cured. You need more like 20 to 25 years."
Consequently, Young changed his life a bit. He sold the book and stationery store he had owned in Granville for many years and "never looked back. I thought if I had only awhile to live, I wanted to enjoy it more. So I retired, and I've had a ball ever since."
He began volunteering at The James shortly after it opened in 1990, and his wife Ruth, now deceased, joined him a year later. They were quite a team, winning the Volunteer Services Department's Spirit of Hope Award for outstanding dedication and commitment in 1998.
"I started volunteering because I wanted to give back to the hospital, but also because, being retired, I was looking for something to do on a regularly scheduled basis," he explains. "And what better place could I volunteer than at The James? This is where my hospital roots are."
Young is glad he tried the experimental drug as part of a study more than two decades ago. He would recommend clinical trials to all cancer patients facing similar options.
"I'm not a gambler, but if I'm presented with a choice that gives me a chance for a positive outcome, I'll go for it," he says. "With clinical trials, your chances are as good or better than whatever else they may be offering for treatment. And even if a good standard treatment is already available, a clinical trial is what led up to it."
As for his own chances for cure, both he and Kraut remain optimistic.
"We never really know if anyone is cured," Kraut says, "but I would say that Mr. Young has a good chance of being free of his disease."
"It's been more than two decades since my original diagnosis," Young smiles, "and I'm not far from the quarter century mark – something to look forward to!"
Some might see 10 years of treatment for metastatic melanoma as a menu for misery. Phyllis Marshall of Marysville, Ohio, sees it as a batch of blessings that has helped her battle back against the deadliest form of skin cancer.
In the view of her doctors at Ohio State's Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute (OSUCCC-James), Marshall has defied all odds.
"I'm a spiritual person, and I have a lot of hope," says Marshall, a retired administrative assistant with Scotts® Miracle Grow. "I thank the Good Lord for every little blessing. I just know he's going to get me through this and I'll be fine."
She credits her resilience to her strong faith and to her medical team at the OSUCCC-James, where since 2000 she has undergone surgeries, endured regimens of chemotherapy and participated for a time in an innovative clinical trial that she believes was instrumental in prolonging her life.
Her experience began with removal of a small malignant mole from the back of her arm, a procedure that required 72 staples and two drainage tubes. "Hard to believe that such a little thing can do so much harm," says her husband Roger, who has accompanied her all along her journey.
She then faced chemotherapy, and, 10 months after it had ended, doctors found that the melanoma had spread to both of her lungs. They surgically removed those tumors and declared her cancer-free, but later that year another lung tumor appeared. Marshall was referred to William Carson III, MD, who thought placing her on a phase II clinical trial involving the drug Avastin would do her more good than more surgery.
"The idea was to keep the lung tumor from growing and the melanoma from spreading to other sites," she says. "I did very well on that trial. It really was a blessing to me."
After the trial ended nearly four years later, an MRI revealed a metastatic tumor in the middle of her brain. "But it was very small and they were able to remove it, so again I was blessed," she says, crediting surgeon E. Antonio Chiocca, MD, PhD, for his kindness and skill. "Apart from losing a little short-term memory, I was OK."
Following this surgery, she was unable to go back on the clinical trial. But since then, Kari Kendra, MD, PhD, who became Marshall's primary oncologist, has placed her on various regimens of chemotherapy to combat tumors that subsequently have appeared in her breast, hip, lungs and, most recently, colon.
In the fall of 2009, her colon tumor was surgically removed, and she was being considered for enrollment on another clinical trial under development at The James, or perhaps for more chemotherapy.
Whatever the next course of action, Marshall remains upbeat.
"For more than nine years I've been coming to The James, and I couldn't ask for a better team of caregivers," she says. "I feel like they're my family; I'd be lost without them."
She has confidence in the personalized, science-based care she receives and is especially glad that she participated in a clinical trial. "Not just because it benefited me," she explains, "but for the hope it may give to future generations. I hope the medical researchers will learn something from me about melanoma that will one day help others."
Phyllis Marshall lost her courageous ten-year battle with cancer on Friday, July 23, 2010.
In 1998, Carl Stewart was told he had only a short time to live after doctors found a large lymphoma tumor in his brain.
The tumor likely stemmed from a kidney transplant from many years before. The post-transplant medication he had been taking to weaken his immune system and keep it from attacking the donated kidney had also enabled a virus called Epstein-Barr (EBV) to run rampant and lead to lymphoma.
When Stewart came to Ohio State's Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James), he enrolled in an antiviral drug therapy clinical trial led by Michael Caligiuri, MD, whose laboratory, along with collaborators at OSU, had devised an animal model of human central nervous system (CNS) lymphoma. Researchers hypothesized that novel drug therapies targeting EBV and lymphoma cells in the lab could be explored in humans with EBV and primary CNS lymphoma.
"Dr. Caligiuri said I'd be the first patient with transplant-related primary CNS lymphoma to undergo this therapy," Stewart says. "I jumped at the chance." Less than a year later, the tumor was gone, and Stewart remains cancer-free – a prime example of a patient benefiting from innovative, science-based treatment.
Carl Stewart lost his twelve-year battle with cancer on October 30, 2010.
The latest and most sophisticated forms of cancer treatment are offered to qualifying patients who participate in clinical trials, or studies designed to test the effectiveness of promising new therapies. A case in point is Linda Craig, who agreed to enter a clinical trial at the OSUCCC – James after being diagnosed with breast cancer.
"I felt a strong need to do this because I have two grown daughters, and if I could save them from going through what I had to go through, then I wanted to do that," Craig says, noting that she put a lot of thought into her decision and realized that new treatments will come about only through research-based clinical studies.
"There's no way we'll ever find out about new treatments unless people step to the plate and say, 'Yes, I am going to do this'," Craig explains. "Because I chose to take part in a clinical trial at The James, I truly believe I received the best treatment there is to have."
For more than 65 years, the Buckeye football team could count on Bernie Speyer's support. Today, Bernie counts on the Buckeyes.
After being diagnosed with an early stage of prostate cancer, Bernie Speyer underwent a radical prostatectomy. A year after his surgery, during a routine checkup, his prostate-specific antigen (PSA), which helps detect prostate cancer in men, was discovered to be elevated. Fearing his cancer had metastasized; Bernie underwent six weeks of radiation treatment.
Five years later, Bernie's PSA level was discovered to be higher than before his initial surgery. Hearing the news, Bernie was anxious to do more and consulted with his doctor. He told his doctor he wasn't ready to give up and was willing to try whatever other options were available. Based on Bernie's previous treatments, his physician, Robert Bahnson, MD, found a clinical trial in which Bernie was eligible to enroll. The clinical trial called for Bernie to receive an initial injection of Zoladex once a month coupled with Casodex, which he took orally every day.
After the first treatment, his PSA level went down. After the second, his PSA level was virtually undetectable. Initially, there were minimal side effects which consisting mainly of hot flashes which have since subsided.
Today, Bernie still participates in the clinical trial and will continue for as long as he wants. He has routine blood work to monitor his continued success.
More importantly, Bernie is back to his famous Buckeye tailgate tradition. Decked out in his Buckeye gear, Bernie sports a hat adorned with Buckeye pins collected over the years. When asked which pin is his favorite, Bernie points to the gold one in the very front which reads "cancer survivor." "That one," he says, "is the one I'm the most proud of."
In September 2005, Nancy Vowell of Columbus went to the doctor with what she thought was a simple, albeit painful, case of gallstones.
Through routine blood work to confirm her gallstones, doctors noticed Nancy had an unusually low red blood cell count.
After additional testing, doctors discovered that Nancy had multiple myeloma, a type of blood cancer formed by cancerous plasma cells in the blood. When plasma cells grow out of control, they can form a tumor, usually in the bone marrow. This type of tumor is called a myeloma, and if there are many of them, they are called multiple myeloma.
"When you find out you have cancer, it is a very scary thing," says Nancy, a former nurse with more than 36 years of experience in the healthcare industry. With no known cure for multiple myeloma, Nancy knew she was in for the fight of her life and needed to find the most advanced treatment available. She made the decision to get a second opinion at Ohio State's James Cancer Hospital and Solove Research Institute.
At The James, Nancy met Don Benson, MD, a member of the multiple myeloma treatment team. Nancy underwent induction treatment with a regimen recently developed in clinical trials and achieved a remission. She went on to complete a successful stem cell transplant but unfortunately relapsed several months afterwards. Nancy courageously completed a full treatment course with another novel treatment recently approved through the results of several clinical trials. Nancy received Velcade® which has kept her in remission for nearly two years. Unfortunately, her myeloma count began to climb once again earlier this year.
After assessing her options, Dr. Benson suggested Nancy enroll in a clinical trial using a new drug that had shown to lower the myeloma count in the blood. Because of her nursing background, Nancy knew that there would be uncertainties with participating in a clinical trial, including the possibility of side effects.
Nancy began the six-week trial with no complications or discomfort. During the last week of the trial, she became very ill, experiencing what would be considered typical side effects including nausea, vomiting and diarrhea. Although Nancy withdrew from the study, her myeloma remained under good control and she has remained in remission without requiring further treatment.
Today, Nancy is considered to be in remission. However, as a multiple myeloma survivor, her condition will have to be carefully monitored for the rest of her life. Although there is no known cure for multiple myeloma, through clinical trials scientists are discovering more about what causes the disease and how to improve treatment. Currently at The James, there are nearly a dozen clinical trials open for patients with myeloma, offering promising new therapies to patients with the condition.
"People see me and what I've been through and it gives them hope," says Nancy. When asked if she would consider participating in another clinical trial, Nancy doesn't hesitate. "Absolutely, without a doubt," she says "I enjoy life, I enjoy living and I want to be part of the cure."
Nancy Vowell lost her long and courageous battle with multiple myeloma on September 19, 2012.
Of all the surprises that Donn Young, PhD, might have imagined receiving for his 60th birthday, a diagnosis of metastatic prostate cancer wasn't one of them. But that's what he got.
Just a few days before, during a pre-operation visit for a routine back surgery, he had requested a prostate-specific antigen (PSA) test, which can detect prostate cancer. "It was just on a whim," Young recalls. "I had no symptoms, but it had been a few years since I'd had a PSA."
PSA levels in healthy men are usually less than four; Young's came back at 78, and a repeat test showed them at 90. As a biostatistician who had designed and managed clinical trials with the cancer program at Ohio State for more than three decades, Young knew there was something terribly wrong. Young said, "I've worked with enough research data and crunched enough numbers to know."
On his birthday, Young had a prostate biopsy that confirmed cancer with bone metastasis to several vertebrae, his right shoulder and hip, and a couple of ribs. "Having your prostate biopsied instead of blowing out candles is no fun," he says, adding that the results were even worse, since there is no known cure for his advanced illness.
Young turned to Ohio State's Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James), where Steven Clinton, MD, PhD, enrolled him in a clinical trial that involves a pair of drugs. The first drug stops the body's production of testosterone and androgen, while the other blocks those hormones from binding to tumor cells. The trial is designed to determine whether an intermittently administered regimen of this therapy is as effective as continuous therapy in promoting overall survival.
"This is an equivalency rather than a curative trial," Young explains, noting that the study opened in 1995 and accrued patients until October 2008. "So it's taken all these years to find out whether the intermittent regimen is as good as what the standard of care was when the trial started." The median survival time for men on this trial is 34 months.
In May 2009, Young had reached the 29-month mark, and his PSA levels were virtually undetectable. "So far, so good," he says. "But the reality is that at some point this cancer always escapes hormonal control. My hope is that, through this therapy, I can buy a number of years until they can find out why and devise another targeted therapy."
Young knows the only way to make progress against his and other forms of cancer is for more people to enroll in science-based therapeutic clinical trials that can turn discoveries into innovative treatments. Although retired from the University, Young stays active and upbeat. He works out at a gym every day, serves as PTA treasurer at his daughter's school, and coaches youth volleyball.
Understanding the need for continued funding to support cancer research, he also signed on to ride in the inaugural Pelotonia, a three-day bicycling event designed to raise $4 million in its first year and $40 million over five years for Ohio State's Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute.
"I never have been much of a worrier or a negative person," he says. "I just take each day as it comes and have fun doing what I want to do. It's always a matter of what you make of life rather than how long you live – but I hope to live a long, long time."