Twenty-one years after his diagnosis of pancreatic cancer, Howard Young is encouraged by the ongoing advancements happening in laboratories and clinics.
Howard Young is someone a lot of people call after they’re diagnosed with pancreatic cancer. He gets calls from the husbands, wives, children and friends of patients as they support a loved one fighting the disease. Over the past two decades, hundreds of individuals struggling in their darkest hours have reached out to him for guidance, inspired by his cancer journey and the hope he brings. People may find their way to Howard through church or through business connections. He’s the longtime co-owner and vice president of General Wholesale Company, a leading beverage distributor based in Atlanta. He has also led countless fundraising events for pancreatic cancer research, often partnering with other prominent community leaders. At these events – and in support groups, interviews and other settings – Howard is open about sharing his story, hoping to encourage others who are navigating or may one day have to contend with their own battles with cancer. It has now been nearly 21 years since Howard first received his diagnosis of pancreatic cancer – a disease with the lowest survival rate of all major cancers. Rather than accept these odds, he found his way to TGen and Daniel D. Von Hoff, M.D., who helped him not only survive the disease but also beat back three Stage 4 recurrences. Howard advises people to ignore the frightening statistics. He urges them to seek out the best specialists, get genomic testing and participate in clinical trials. He connects many people to his own care team at TGen. When asked about other types of cancer, Howard often checks with his friends at TGen to track down the names of the top experts in those areas. “You cannot afford to not get the best care,” he tells people. When you see experts at TGen, “you’re going to get the latest standard of care at the very minimum,” he explains, “but you may be getting what is the future standard of care, like I did, and it could save your life, like it has mine.” Howard’s knowledge of research progress at TGen runs deep. Not only has he participated in clinical research as a patient, but he has also served as a patient advocate for three Stand Up To Cancer grants headed by Dr. Von Hoff, helping secure significant funding that drove development of new treatment regimens, including one for refractory pancreatic cancer. Howard also serves on the TGen Foundation board and chairs TGen’s National Advisory Council for Pancreatic Cancer Research. His long association with TGen dates back almost to the organization’s inception in 2002, when Howard’s life took a surprising turn.
An Ominous DiagnosisHoward didn’t know a lot about cancer in 2002. It might have been the furthest thing from his mind. He was 42 years old, in the prime of life and otherwise in great health. He and his wife, Becky, had three active girls. He was leading a successful family business. The holidays were approaching. Then after a month of indigestion, he scheduled an appointment with his internist, thinking he might have picked up a bug during a recent trip to Mexico. He was completely unprepared for the news he received. On December 19, 2002, after a CT scan, his doctor told him he had pancreatic cancer. Surgery was scheduled for the day after Christmas. But even if the procedure was a complete success, they said, he’d still have only a 20 percent chance of surviving for six months. Howard had six days to get his affairs in order. His daughters were 12, 15 and 17 at the time. He remembers looking at them thinking, “Will I ever see them graduate from high school, much less get married or have a child?” He and Becky chose their words carefully when they talked to the girls. They downplayed the urgency and explained that there was “a mass” in his pancreas that had to be removed. It was their youngest daughter who asked, Could it be cancer? “We didn’t tell them there a was a 90 percent chance it was,” Howard said. “But we said, well, yes, it very well could be.” Howard’s surgery was followed by painful complications that brought him back to the hospital. He lost 35 pounds over just a few weeks. Then came months of intense chemotherapy followed by radiation.
You Need to Talk to Dan Von HoffHoward sought a couple of second opinions during this time. Then, through a friend, he met someone who was battling pancreatic cancer himself who told Howard that the best person in America that he could see would be Daniel Von Hoff. “He said you might not be able to get through to him,” Howard recalled, “but you ought to try.” Howard called Dr. Von Hoff’s office that same day and right away was invited to Arizona. Dr. Von Hoff spent a full hour with Howard and Becky, and he assured them they had done everything they should do. “Now here’s the great news,” Dr. Von Hoff said, and he told them about molecular profiling. Each person’s cancer is unique to that individual, Dr. Von Hoff explained, and it can vary a great deal. Using a sample of Howard’s tumor tissue that had been collected during his surgery the year before, Dr. Von Hoff and his team at TGen set out to look for known markers that could be treated with targeted therapies. These targeted treatments were often non-toxic and less debilitating than traditional chemotherapy and radiation. Analyzing Howard’s tumor sample, Dr. Von Hoff identified several known markers they began to attack with targeted therapies in an effort to destroy any lingering cancer cells. One treatment, for instance, targeted the epidermal growth factor receptor, which can contribute to cancer growth in a variety of cancers. They put Howard on a therapy that blocked this receptor in order to inhibit tumor growth. After completing a series of targeted therapies, Howard was feeling like himself again and Dr. Von Hoff thought he was in a good place. Howard continued to travel to Arizona for monitoring every three months at first, then every six months.
Just in Time for a Transformational Clinical Trial In 2008, after years of monitoring, one of Howard’s routine scans showed cavitary nodules on both lungs. Dr. Von Hoff ordered robotic surgery to biopsy one of the nodules, and this procedure confirmed that Howard had Stage 4 metastatic pancreatic cancer. The timing, however, was fortuitous. Dr. Von Hoff was in the midst of a clinical trial for the treatment of advanced pancreatic cancer that was showing great promise. He put Howard on the two-drug regimen of gemcitabine and nab-paclitaxel that he was testing, and the results were phenomenal. Within three months, Howard’s nodules were no longer visible on a CT scan. After a six-month course of the drugs, Howard was once again cancer free and back to routine monitoring. When the nodules returned in 2013, the two-drug combination that Howard had previously taken had just received FDA approval as one of two standards of care for pancreatic cancer. Further, Dr. Von Hoff now had evidence that patients who’d responded well to the regimen the first time tended to respond similarly well in the face of a recurrence. Sure enough, Howard’s nodules disappeared just as quickly as before. With each recurrence, Howard said he and his family put on their “battle gear” and maintained their faith. “It’s a real emotional thing to shift gears,” he said. “Every time, you think, is this the one?” Then each time he got to ring the bell signaling he was all-clear, he would start to settle back into normal life.
A Revelation from Genomic Profiling Following his treatment in 2013, Howard was ready to declare that cancer was behind him. But the bad news came again in 2015. This time, it looked different. Howard now had a mass in his lung that looked like it might be lung cancer. They scheduled surgery in Phoenix to remove a portion of Howard’s left lower lobe and biopsy the mass. Again, it proved to be Stage 4 metastatic pancreatic cancer. After surgery, Howard was put on the “TGen triple,” the two-drug combination he had taken previously, paired with cisplatin, a form of platinum. Howard had recently been part of a Stand Up To Cancer grant which allowed Dr. Von Hoff to prove that this additional ingredient helped inhibit the ability of pancreatic cancer cells to repair their DNA, causing them to self-destruct. The “TGen triple” was now a recommended treatment by the National Comprehensive Cancer Network, and Howard responded favorably to it. This time, Dr. Von Hoff said he wanted to map both Howard’s genome and the genome of his tumor. This level of mapping was a relatively new practice, as TGen was getting the technology down to a fairly affordable undertaking. Today, City of Hope is performing an even more advanced level of genomic profiling for 90% of its patients to reveal potential treatment targets and contribute to the development of new diagnostics and therapies. The analysis revealed that Howard’s genome has an overamplification of one gene called GATA6. This increased number of genes, Dr. Von Hoff speculated, may help explain why Howard responds so well to treatment. A colleague on the Stand Up To Cancer grant, Michael Barrett at the Mayo Clinic in Arizona, conducted a global research study of long-term pancreatic cancer survivors, and many shared with Howard this overamplification of GATA6, suggesting it may be an indicator for a better prognosis in patients.
Living a Full Life It has now been eight years since Howard’s last recurrence. He’s looking forward to his 40th wedding anniversary. He has walked all three daughters down the aisle and recently welcomed his fifth grandchild. “I’m feeling pretty good,” he said, “but I’m knocking on wood as I say this.” Howard has continued to get regular scans in Phoenix. He now sees Dr. Erkut Borazanci, one of Dr. Von Hoff’s protégés who has taken over many of his patients, leaving Dr. Von Hoff more time to focus on research. At Howard’s most recent appointment, Dr. Borazanci said he felt it was safe for Howard to go down to one scan a year. “That’s the first time anyone has said that to me in 20 years,” Howard said.
Giving Back Since the early days of his cancer journey, Howard said, “I wanted to find a way to raise money and awareness for pancreatic cancer. And I tell people I don’t know where you can have more of an impact than TGen and Dr. Von Hoff.” Dr. Von Hoff’s clinical trial work has now led to 3 of the 4 regimens approved by the FDA for treatment of patients with advanced pancreatic cancer. In the beginning, Howard asked friends to sponsor him in the 10K Peachtree Road Race. “I wanted people to know that you could recover from pancreatic cancer. You could go run a race,” he said. “I wasn’t winning it, but I ran the whole way.” Soon after, as his story became known, he partnered with others in the Atlanta area to raise funds in support of TGen’s work. To date he has helped raise over $6 million in support of Dr. Von Hoff and his pancreatic cancer research and clinical trials. Howard joined TGen Foundation’s board in 2009, the same year he began serving as a patient advocate on the first of three Stand Up To Cancer grants. In 2016, he was honored for his service with TGen’s John S. McCain Leadership Award. Today, as chair of TGen’s National Advisory Council for Pancreatic Cancer Research, Howard is helping lead TGen’s Relentless Pursuit initiative, an effort to establish The Daniel D. Von Hoff, M.D. Endowed Chair in Cancer Research and to raise support for pancreatic cancer clinical trials and early detection. Howard said the Council wants to ensure that some of the best and brightest scientists follow in the footsteps of Dr. Von Hoff, pushing the boundaries of innovation in the fight against pancreatic cancer. Howard is encouraged by the continued progress being made in the laboratories and in the clinics. “Where once there seemed little hope,” he said, “we now are seeing success.” He is particularly optimistic about the work Dr. Von Hoff and his colleagues are doing to develop a blood test to detect pancreatic cancer at its earliest stages when it is highly susceptible to treatment. The vision is that, in a few years, when individuals go to their primary care doctors, those with the highest risk profile will start to get a routine blood screening for early, curable pancreatic cancer. Howard is also excited about the application of genomic analysis across City of Hope. “It’s revolutionizing the treatment of cancer,” Howard said. “City of Hope CEO, Robert Stone, and TGen president, Jeff Trent, Ph.D., have put together an all-star team that is rewriting the treatment of cancer globally. It’s changing lives.” “Howard is such a great person who has given so much to the fight against cancer,” Dr. Von Hoff said. “And we’re starting to see more Howards out there. When patients see we’ve got people like Howard who’ve made it this far, they realize, I could be one of those, too.” That’s a message that Howard likes to share, as well, with the many people who reach out to him. “I tell them, I’m alive in year 21. Why can’t you be here 21 years from now?”
To support The Daniel D. Von Hoff, M.D. Endowed Chair in Cancer Research, pancreatic cancer clinical trials and early detection, visit: tgen.org/relentless
