New Times / Cover Story
The following articles were printed from New Times [newtimesslo.com] - Volume 28, Issue 26
A difficult diagnosis: Learn about the Kids' Cancer Research Foundation, how they started, and what they stand for
By JONO KINKADE
For more than a decade, Frank Kalman worked tirelessly to keep his daughter alive.
Calli Kalman was diagnosed with neuroblastoma—cancer of the nerves, usually found in children—when she was 12 years old. That original diagnosis came 12 years ago and sparked a protracted battle with the disease that’s included milestones most patients with a similar diagnosis don’t survive.
After Calli’s initial diagnosis, she received a series of treatments and, eventually, had a tumor surgically removed, followed by a retinoid therapy to prevent recurrence. But the cancer returned, rooting into her abdomen. Again, a tumor was removed, this time in an operation with associated risks, and there was some complication during the surgery that nearly resulted in the loss of a kidney. Overall, though, the surgery was successful, and Calli was clean for four years.
Then the cancer returned again, with a tumor found nestled behind her spine, surrounded by arteries. Determined to avoid another close call, Frank and his wife Terry hunted for the field’s best surgeon on the West Coast. Facing opposition from doctors saying the risk of crippling organ damage was too high and recommendations for high doses of chemotherapy and radiation, the Kalmans were wary, worried that a second round of the treatments would be too much.
“There’s nothing more horrifying than being in a room with your daughter, and the nurse comes in wearing a rubber suit and has a face mask on, and she’s got this bottle and is about to put it in the veins of your daughter, your baby, and at that point there’s no turning back,” Frank said.
That’s when Frank—who’d already been scouring the nation for treatment options—picked up the phone and called Dr. Michael La Quaglia, a surgeon at Memorial Sloan-Kettering Cancer Center in New York City, and a man whom Frank said carries the reputation of being among the best in the world. La Quaglia looked at the tumor scans, thought about it, and told Frank he could do the surgery. Shortly after that, the Kalmans took their first trip to New York.
“It was scary going across the country with a sick kid. I find myself kind of a forward-thinking person, and still I found it super intimidating to go to the other side of the country. I was terrified, my wife and I both were,” Frank said. “And after I had done it, I realized it was no big deal; it probably saved my kid’s life.”
The surgery was successful, and after follow-up chemotherapy, Calli once again was clean.
Two years later, the cancer came back again.
The fourth time the neuroblastoma showed itself, it was time to fight harder than ever. Neuroblastoma is among a group of cancers that doctors have been able to treat fairly successfully, but for patients who relapse, the disease becomes very hard to treat and is often deadly. So the family went back to New York to see the specialists at Sloan-Kettering, and Calli went on a clinical trial involving a mouse immunotherapy treatment—a vaccine called 3F8—but it wasn’t successful. While at the hospital, one doctor was talking to another as word of the battle got around the hospital’s hallways, and a recommendation came back to Calli’s doctor suggesting they try revlimid, a drug most commonly used to treat multiple myeloma in adults, and rarely, if ever, used on a children’s cancer patient. The drug worked, and after receiving three more years of treatment in New York, Los Angeles, and San Luis Obispo, Calli was clean.
That was 2011. Currently, Calli is part of a clinical trial that uses a vaccine to prevent relapse. Frank said things are looking up for his daughter, who’s now 24 and married, and that he’s hopeful this current trial will show success.
But still, he won’t stop.
After being such a tireless advocate for his own daughter, Frank has taken up the broader fight to help in advancing childhood cancer treatment. Along the way he shares stories and offers advice, often intermingling passion and information. With the help of a few local advocates and guidance from professionals in the field, Frank started the Kids’ Cancer Research Foundation (KCRF). Recently, the foundation released a 38-page e-booklet titled Steps to Hope: A Practice Guide to Seeking the Best Possible Cancer Care. The booklet, released in late 2013, offers practical advice for cancer patients and their family members, written in a way that much of the advice and the eight-step approach is applicable for both children and adults.
The book is straightforward, often told from firsthand experience. It walks patients through a process that on paper may seem fairly easy to navigate, but in reality—during the shock and emotional eruptions that come with a cancer diagnosis rife with medical terms, appointments, and a difficult-to-parse insurance industry—the steps aren’t so obvious.
The bare bones of the booklet came from Frank’s experience as an advocate for Calli, with the details fleshed out by other stories he’s encountered and insight from the other board members involved in writing the book.
An uphill battle
Maybe the propensity to fight is in the Kalmans’ blood.
Frank was 8 months old when his family escaped from Hungary in 1957, after the revolt against the Soviet-controlled government. His father was a high-level civil and chemical engineer, something the United States considered valuable, so the family was able to immigrate here. Frank’s foot was injured during the escape, and the story goes that in the hospital, doctors told his father that in order to stave off a debilitating infection, they’d need to cut it off. Upon hearing the prognosis, Frank’s father saw his son standing up without pain or difficulty, so he decided to ignore the doctors, take his son, and leave the hospital.
As he grew up, Frank became an avid motorcycle rider; eventually, he built a career in the industry and worked in marketing and product development for Honda. He said this experience lent itself to the fight on Calli’s behalf and establishing the foundation. In this case, the product isn’t a vehicle with an engine; it’s a disease in need of a cure. But Frank says both efforts are results-oriented, and testing out a new product requires persistent drive until the problem is solved.
While clinical trials for cancer treatments are obviously a bit more complicated, and the cause-and-effect relationship not as simple, Frank can’t help but look at the field and be thirsty for results.
“The idea of getting answers to life-threatening questions in years or decades is insanity,” he said.
So after years of being by his daughter’s side and becoming familiar with the various treatments and trials out there, Frank started to see where work needed to be done. He began talking about his experiences, his observations, and his frustrations with a friend and neighbor, Patrick Kerans. Frank and Kerans went on long bicycle rides and had lengthy discussions about the topic, bouncing thoughts back and forth. For Kerans, the subject was also something close to home, and something he felt passionately about.
A gut feeling
In 2000, Kerans’ stomach began having problems, becoming increasingly bloated. At one point, a friend made a comment that Kerans, who was 40 at the time, looked like he was pregnant. He went to the doctor and was diagnosed with liposarcoma—cancer of the fat, a rare disease usually found in fat tissue in the limbs or abdomen—and had a large tumor doctors said he’d been carrying for years. Kerans was told to get his affairs in order. The grim prognosis was unsettling and something he didn’t want to accept. So he sought a second opinion and was recommended high doses of radiation. That didn’t settle well, either.
“I told them no, and they came and pursued me,” Kerans said. “They wanted to use their machine.”
At the time, Kerans lived in the Bay Area and worked as an independent business consultant for tech companies. He also held a stake in a company that developed mobile application software in the early days of apps. The Bay Area, he said, has an abundance of forward-thinking doctors. So he kept looking and eventually ended up in the office of a well-regarded surgeon at UC San Francisco. There, doctors discussed an elaborate operation that could remove the tumor, which Kerans pursued. On a Friday the 13th in October 2000, Kerans went into surgery at 6 a.m. He didn’t come out until 10 p.m. When all was said and done, he was 50 pound lighter; doctors removed a 30-pound tumor and 20 pounds of fluid. The surgery was successful.
“It was incredible. I had such awe with the human body,” Kerans said. “It was like having twins or something.”
The process was a dramatically transformative point in Kerans’ life. Soon after the surgery, the app software sold, and he moved to San Luis Obispo with plans to leave the stress behind and live a more relaxed, healthy lifestyle. During his experience, Kerans said he acquired a particular evaluation of the medical world that has shaped his outlook. He became a proponent of patient-centered advocacy, the idea that a patient must be or have an advocate because the medical industry is so vast, so complex and saturated, that the best and most attentive care isn’t always given. It’s not for lack of effort from those in the field, neither is it for lack of care or compassion, Kerans said, but it’s a byproduct of a complicated culture wherein patients become complacent to business as usual.
“We are our own best general practitioner,” Kerans said. “You have to be in charge, whether you’re dealing with lawyers, doctors, anything. If you think you can check your brain in at the doctor’s waiting room, think again.”
When Kerans met Frank Kalman, he saw an extraordinary, battle-tested advocate.
“There’s no substitute for the walk that that guy’s walked,” Kerans said of Frank.
With the pair going on long bike rides and putting their heads together, it was only a matter of time before they started getting to work—especially when they began identifying room for improvement.
Research, funding, and your kid
For the most part, cancer diagnoses rates are decreasing, while success in treatment is increasing. Treatment advances, an increase in screening and early detection, and prevention campaigns have all shown benefits. Positive results have been seen particularly in the four major types of cancer: prostate, female breast, colorectal, and lung, according to the National Cancer Institute’s 2011-2012 Cancer Trends Progress Report.
Meanwhile, the progress report also shows that diagnosis of the disease in minor cancer sites—the areas where it’s less commonly found—has been steadily increasing, though slightly. Cancers of the kidney and renal pelvis; thyroid; pancreas; liver and intrahepatic bile duct; as well as melanoma, have all been rising more than 1 percent a year. Rising less than 1 percent a year are non-Hodgkin lymphoma, childhood cancer, leukemia, testicular cancer, myeloma, and esophageal cancer. Mortality rates have fluctuated.
Childhood cancer rates have been slowly increasing since 1975, while mortality rates have decreased 50 percent. Doctors have gotten a handle on some childhood cancers, like leukemia, developing a set of standard treatment protocols for particular diseases. Neuroblastoma, the disease Calli was diagnosed with, is among the more common childhood cancers and has its own set of standard treatments. Neuroblastoma is most commonly found in infants and children younger than 5 years old, and long-term survival rates have been increasing, reflecting the rising success of treatments. Like some forms of cancer, however, when neuroblastoma reoccurs, it’s often deadly, with survival rates of 20 percent or less.
That’s what makes the Kalmans’ story and their success in fending off the initial diagnosis and three relapses so remarkable and so rare. And that’s why the foundation has been looking recently to improve the odds for others.
Currently, the KCRF is raising money for a trial aimed at reducing neuroblastoma relapse rates. The study, being conducted by the KCRF advisory board chair, Dr. Robert Seeger, is testing results of the immunotherapy agent CH14.18. In a recent trial that Dr. Seeger worked on involving CH14.18, relapse rates were reportedly reduced from 54 percent to 34 percent.
There are two reasons the foundation is a big proponent of the current trial. For one, the fact that a vaccine can be used to fend off relapse, rather than the more toxic option of chemotherapy—which can have long-term, life altering effects—is something Frank’s attracted to. After all, it’s working for his daughter.
Secondly, while such a trial may hold promise, money isn’t exactly being thrown at it. When it comes to kids’ cancer, new treatments that may have potential don’t always get the attention they deserve, Frank said. Of all children being treated for cancer, the vast majority are involved in clinical trials, which means there’s great potential for advancements.
According to NCI’s website, the institute’s total relevant funding to childhood cancers was $208.07 million in 2012, or about 4 percent of NCI’s total $5.067 billion budget. Other numbers often mentioned aren’t quite as generous, putting foundation-based and private funding at a bit less than government funding. In comparison, the frequency of childhood cancer is quite low as well, with about 13,500 children diagnosed with cancer in the United States each year, according to the Children’s Oncology Group, an extensive network of medical professionals and treatment centers that includes more than 90 percent of children cancer patients.
Since so few children’s cancer patients exist percentage-wise, and considering such a wide variation in the kinds of cancer and the needed treatments, markets for particular drugs are so small that they often don’t get developed as quickly as the much-more-common forms of adult cancer. Large-scale funding often comes after what’s called the proof-of-concept stage, when a trial has shown significant potential, offering a more attractive risk-benefit ratio than before. For the trials in the early stages, before the milestone has been reached, funding can be tight.
That’s why the KCRF seeks out early-stage emerging treatments, conducts a vetting process, and potentially offers a cash injection, hoping to help the trials yield enough of a result to stand up to funding requirements of larger foundations and government grants.
“With the market-driven approach, if you think about it logically, where there are successes is where the money is going to go, because there is going to be a big market,” Kerans said. “Take breast cancer: There has been success in treating it, thankfully, and it’s become a huge market. The ones that are tougher, the ones that are harder, they are also typically in a smaller group, a smaller market of people, so the research dollars just aren’t going to go there naturally. So that’s what we’re trying to correct.”
Kalman says that while total funding is comparable to the total frequency of children’s cancer cases, there’s one thing in particular that the market doesn’t account for: When children die of cancer, the “years lost” is calculated at a bit less than 70 percent of an average lifespan.
Because an improved chance of recovery for a child with cancer often means traveling to larger hospitals and centers, and potentially plugging into clinical trials, the booklet Steps to Hope emphasizes the process of looking for treatment. The recommendation was informed by experience and involves scouring the country for the best of the best. Recommended steps include getting a second opinion to confirm an initial diagnosis, assembling a team, and assessing all the options. Implied is the idea that if at first you don’t succeed, go elsewhere—that a patient ultimately can’t depend solely on a primary care physician or local oncologist to give the best advice.
Treating children’s cancer is delicate and involved, so the Children’s Oncology Group has emerged as a foundational network that gives medical professionals the tools they need to stay on top of new information and treatments. In addition, the majority of treatment is carried out at larger centers, such as children’s hospitals, generally in urban areas. Still, patients who have a more common form of cancer, like leukemia, may get their treatment in the area. Like other non-urban areas, San Luis Obispo doesn’t have a resident pediatric oncologist, which means local patients are likely to work with a major hospital anyway, and either go there for treatment or collaborate with a local non-pediatric oncologist or a nurse practitioner.
Traveling and looking elsewhere was the case for Frank and Kerans, and that may be true to some extent for others as well. But members of the foundation, including a KCRF board member who works as an executive at local hospitals, have stressed the importance of working with doctors, of communicating, of not shirking the medical establishment and looking solely for alternatives.
Those in the oncology world in San Luis Obispo agree that there’s value and importance in seeking specialists and assessing treatment options—which likely means traveling to a larger hospital—but also stress that working with local doctors is very important. Mary Mott Okimoto is a pediatric nurse practitioner at Coastal Integrative Cancer Care in San Luis Obispo. Okimoto, who has worked at Memorial Sloan-Kettering in New York and Lucile Packard Children’s Hospital at Stanford, works collaboratively to provide treatment in conjunction with oncologists and specialists within the COG network. As one of the few who do so in San Luis Obispo, Okimoto says basic treatments are carried out in the area, but the diseases that need more extensive treatment regimens—including those that entail higher doses and longer administering of chemotherapies, with neuroblastoma treatments included—are handled at children’s hospitals, which house more specialists and nurses who perform the treatments more frequently, especially the more high-risk and acute treatments.
Since there are no pediatric oncologists in the area, patients have to travel to one, often ending up at one of the children’s hospitals. If there’s a standard treatment regimen that exists, like there does for leukemia, which requires 3 1/2 years of treatment, then the doctor prescribes it, and Okimoto or others assist with administering it locally. Through this process, most children’s cancer patients are seen at the places Frank recommends. While this may be the case, Okimoto still sees the booklet’s value.
“[It’s] useful to help people kind of organize the chaos they are facing,” she said.
While Frank and KCRF board members admit that sometimes you have to take your search for a cure elsewhere, they still recommend working and communicating with your doctor and including the question of whether there are people out there who would treat the case differently.
Okimoto agrees that asking about other options is important, and cautions against a cavalier attitude where patients or families insist on doing all the research themselves instead of working with their doctor, who is professionally trained and experienced in the matter.
“It’s hard because cancer, especially pediatric cancer, is not one disease; it’s 30 or 40 diseases that we all call cancer,” Okimoto said, adding there is no “one size fits all” approach to treatment.
As for the rare cancers and those with mixed treatment results, a proactive approach is requisite for finding the right clinical trial to join.
“Now you fall into this category, or no-man’s-land, where if that front-line treatment fails, now you’re in our arena, of pediatrics, and that’s where the booklet is very helpful,” Frank said.
For Frank and Kerans, encouraging the patient or parent to embrace the advocate role is just the first step, and if it’s done with kindness and respect, then it can begin a process of increasingly positive options.
“I’ve come to the conclusion that you hold a much greater responsibility to your child or your loved one to confirm whatever that person is doing and telling you,” Frank said. “It’s been my experience that the majority of the time the doctors welcome it, because you put your stake in. They get it.”
Contact Staff Writer Jono Kinkade at firstname.lastname@example.org.