C3 Collaborating to Conquer Cancer: Fall 2013
The University of Colorado Cancer Center's Fall 2013 edition of C3.
C O L L A B O R AT I N G T O C O N Q U E R C A N C E R W I N T E R 2 013 FINGERPRINT CANCER 12: FOURTH TIME’S A CHARM 16: LAYERS OF SUPPORT 10: Q&A WITH NOT WHERE IT LIVES, BUT WHAT IT’S MADE OF TIM GARRINGTON, MD 11: C3 MD THERESA PACHECO 18: SUPPORTER FOCUS ON MORTON & SANDRA SAFFER ANSCHUTZ MEDICAL CAMPUS CSI-STYLE DNA FINGERPRINTING SHOWS CAUSE OF CANCER SPREAD Most cancer cells can’t travel. Blood cells can. CU Cancer Center along with Yale University and the Denver Crime Lab report the first proof of cancer’s ability to fuse with blood cells in a way that gives cancer the ability to enter the bloodstream and seed sites of metastasis around the body. “One night on a bus ride returning from a conference, a colleague pointed out that, in a patient with a bone marrow transplant, the blood cells come from someone else—one person with two genomes,” says Richard Spritz, MD, professor of pediatrics at the CU School of Medicine. Here’s what they did: Spritz and colleagues DNA fingerprinted a patient’s healthy cells. They DNA fingerprinted the bone marrow donor’s cells. And then they looked at the traveling cancer cells. Sure enough, the patient’s metastatic cancer cells had elements from both the patient and the donor DNA. They were hybrid cells. “The finding could have major implications for the treatment of metastatic cancers of many kinds. It really focuses your thinking—if traveling tumor cells essentially think they are blood cells, that means we might be able to focus approaches to attack them,” Spritz says. N3WS P E R C E PTI O N O F F E RTI LITY A F F E CT S Q UA L I T Y O F L I F E I N YO U N G , F E M A L E C A N C E R S U RV I VO R S A recent study shows that “a woman’s opinion of her own fertility status after cancer treatment affects her well being long after treatment ends,” says Laxmi Kondapalli, MD, MSCE, director of CU Cancer Center’s Oncofertility Program. “Interestingly, it wasn’t the lab and ultrasound markers of fertility AFTER GREAT DANE SUCCESS, CANCER DOCTOR EYES BRAIN TUMORS MICHAEL GRANER alone that affected quality of life,” KO NDAPALLI At age 12, Star the Great Dane was sick. When she collapsed during a coughing fit, her owner discovered the cause: lung cancer. The prognosis was grim, with a median survival from diagnosis of only six to 27 days. And Star was well past the age when she could’ve tolerated chemotherapy or radiation. But Star’s owner was Michael Graner, PhD, associate professor of neurosurgery at the CU School of Medicine and when Star got sick, Graner turned to his specialty, immunotherapy. By using engineered vaccines to prime the immune system to recognize tumors, cancer immunologists are using the body’s own defenses to clear itself of the disease. “The important thing to us was her quality of life was really good,” Graner says. “The treatment was really simple and it certainly didn’t hurt.” Finally, at 44 weeks—more than 10 times the best they should have hoped for—Star showed aggressive experience may help to extend the lives of human brain cancer patients. Graner has continued his studies with the vaccines of the type that led to Star’s dramatic and prolonged improvement. “Star’s success may make it much easier for the FDA to approve similar treatment with human glioblastoma,” Graner says. “Star was a real sweetie. Hopefully her contribution to the world has just begun.” Kondapalli says. “It was a woman’s opinion of her fertility status based on the regularity of her menstrual cycle after treatment that had the most impact on quality of life.” Following cancer treatment, many women think that if they maintain regular menstrual cycles, their fertility is preserved, and that if their menstrual cycles become irregular, then they are likely infertile due to treatment. “This isn’t necessarily the case because we are finding that menstrual cyclicity is a poor predictor of fertility status,” Kondapalli says. “Survivors may be falsely reassured if they resume normal periods or they may be unnecessarily stressed if they don’t get regular periods after cancer treatment.” LITTLE KNOWN ABOUT THE EFFECTS OF SMOKING ELECTRONIC CIGARETTES Thinking about using electronic cigarettes to help you quit smoking traditional tobacco cigarettes? Think twice: the reality is, not much is known about the health effects of using these devices, and there’s little evidence that they help smokers quit. “No safety studies have been done on e-cigarettes, and the chemical contents are not yet known,” says Arnold Levinson, PhD, director of CU Cancer Center’s Health Smoking Cessation Service. “The long-term health risks are therefore unknowable.” When the FDA analyzed the devices it found that the liquid in many of them contains a substance called propylene glycol, which is also an ingredient in fog machines and antifreeze. The FDA does not regulate e-cigarettes. This means that there is no oversight guaranteeing that products on the market are safe. 2 WWW.COLORADOCANCERCENTER.ORG THIN KS TOCK progression of the disease, and Graner and his family made the difficult decision to euthanize her. But Star’s 25 T H E TO P UCH RANKED ONE OF THE TOP 25 IN THE U.S. FOR CANCER CARE The U.S. News Best Hospitals 2013–14 report examined almost 5,000 hospitals across the nation, including 30 in the Denver metro area, to rank the best performers in 16 adult specialties. Cancer care at UCH made a significant jump in the U.S. News rankings, going from No. 34 to No. 23. UCH is where the majority of CU Cancer Center clinical care is delivered and clinical research is conducted. U.S. News & World Report’s 2013-14 Best Children’s Hospitals rankings were released in June 2013. Children’s Hospital Colorado is CU Cancer Center’s partner in pediatric oncology. Children’s Colorado ranked No. 7 among all children’s hospitals nationally and No. 9 in cancer care. CU Cancer Center is the only National Cancer Institute-designated comprehensive cancer center in the Rocky Mountain region, and one of only 44 in the country. Earlier this year, it was named a member of the elite National Comprehensive Cancer Network, an alliance of the world’s leading cancer centers. POL LY E A NEW DISEASE-TO-DRUG GENETIC MATCHING PUTS SNOWBOARDER BACK ON SLOPES Chronic neutrophilic leukemia (CNL) is a rare blood cancer. In an article in the New England Journal of Medicine, CU Cancer Center researchers describe a genetic mutation present in most CNL. The mutation is also the disease’s Achilles heel, allowing CU doctors to prescribe the first targeted treatment for the disease. “I’m a crazy sports fan,” says the first patient treated. “I snowboard 30 days a season. I may be the oldest guy snowboarding on the mountain, but I’m not the slowest!” After receiving a series of incorrect diagnoses, the patient ended up under the care of Daniel A. Pollyea, MD, MS, assistant professor and clinical director of leukemia services at the CU School of Medicine. “By the time we saw him, his blood counts were going in a bad direction,” Pollyea says. In collaboration with researchers at Stanford and the University of Oregon, Pollyea discovered the genetic cause of the patient’s CNL: a mutation in a gene called CSF3R. Further studies revealed that a drug, ruxolitinib, could effectively target cells with this mutation. “There were no good alternatives,” Pollyea says. “But his white blood count came down, his other blood counts normalized, and his symptoms virtually disappeared.” “I had my best snowboarding season ever,” says the patient. “Would I have had this kind of treatment Get more CU Cancer Center news on our blog: www.coloradocancerblogs.org Sign up for our bimonthly newsletter, Colorado Cancer News. WAIT TIMES UP 78 PERCENT AT VAs FOR COLORECTAL CANCER PROCEDURES “Some of it is purely staffing—we don’t have enough surgeons or nurses or anesthetists or O.R. time to meet the need,” says Martin McCarter, MD, surgical oncologist at UCH. “But some of this increase in wait times for cancer procedures at the VA may be due to an increased focus on quality and outcomes. Better care takes time.” The study showed that from 1998–2008, the median time between diagnosis of colon cancer and treatment increased from 19 to 32 days. At high-volume centers, increases were even more pronounced, jumping 14 days for the treatment of colon cancer and nearly 30 days for the treatment of rectal cancer. The question is whether more careful care is worth the wait. “The challenge for the future is to have our cake and eat it too—to have quality along with the efficiency of shorter wait times,” McCarter says. anywhere else? I’m not so sure.” T H INKST OC K 3 C3: WINTER 2013 FINGERPRINT CANCER Where a Cancer Lives May not be as Important as What it’s Made of BY GA RT H S U N D E M I THINK ABOUT TREATING CANCER AS PUTTING A KEY IN A LOCK. magine you live in Buffalo or El Paso or Tallahassee. Would you still eat Thai food, listen to the Beatles and watch Harrison Ford movies? Of course you would. Sure, if you live in San Francisco you might be a little more likely to experiment with yoga and if you live in Manhattan you might be a little more likely to be a Yankees fan, but no matter where you live, you would remain you. Researchers at the University of Colorado Cancer Center are learning the same is true of cancer. For example, it turns out that two lung cancers may be as different as a skinned knee and a runny nose—if they’re made by different genetic mutations, you can’t treat them with the same targeted drug. And far-flung cancers like breast and bladder may be stopped cold by the same treatment, as long as their genetic structures are similar. Cancer used to be defined by where it lives in the body. Increasingly it’s being defined by the fingerprint of the genes that create it. It’s not just where it lives, but also what it’s made of that counts. And CU Cancer Center is at the leading edge of this paradigm shift in the way we classify and treat the disease. W H I C H K EYS F IT W H I C H LO C K S? Let’s start with a Colorado hometown story and a good example of how replacing a cancer’s site-specific label with the code of its genes can lead to new, life-changing treatments. “Think about treating cancer as putting a key in a lock,” says Robert C. Doebele, MD, PhD, associate professor of medical oncology at CU School of Medicine. “A cancer-causing genetic mutation is like a lock. Then for each lock, there’s the specific key of a drug. You put the right key in the right lock and you’ve unlocked or solved a type of cancer.” So what keys and what locks? “People go about it from both directions—they have a drug and wonder what cancer it could treat, or they have a cancer and wonder what drug will treat it. In this case we decided to look at the locks first—what previously unknown genetic mutations cause lung cancer?” Doebele says. It sounds like a big question and it is: There are about 40,000 genes in the human body. That’s 40,000 bits of stuff that make things (to use scientific terms). Unless you have an identical twin, chances are darn good that no one else on earth has the same stuff as you. And everything from sunshine to overcooked steaks to living and breathing has the potential to change the stuff and things you were born with so that by the time you’re reading this article, not all your cells look the same. “A CANCER-CAUSING GENETIC MUTATION IS LIKE A LOCK. THEN FOR EACH LOCK, THERE’S THE SPECIFIC KEY OF A DRUG. YOU PUT THE RIGHT KEY IN THE RIGHT LOCK AND YOU’VE UNLOCKED OR SOLVED A TYPE OF CANCER.” —ROBERT C. DOEBELE, MD, PHD 4 WWW.COLORADOCANCERCENTER.ORG INCREASINGLY CANCER IS BEING DEFINED BY THE FINGERPRINT OF THE GENES THAT CREATE IT. In other words, the human genome is a massively confusing soup through which not even a psychic or a Basset Hound can sniff. That is, until you pare it down from 40,000 genes to the top suspects. See, there are 180 or so genes that have been identified as very common causes of cancer. For example, one of these genes is BRCA1. When in good working order, BRCA1 repairs damaged DNA in breast tissue, or if a cell’s DNA is beyond repair, BRCA1 helps to mark that cell for destruction. But when BRCA1 is itself damaged, it can’t repair or destroy damaged cells and so these damaged cells with their suspect DNA stick around and cause breast cancer. There are roughly 180 genes like BRCA1 that, when malfunctioning, have been shown to cause cancer—and so rather than searching through 40,000 genes, Doebele limited his search to this worrisome shortlist. A TH YR O I D CAN C E R G E N E I N LU N G CA N C E R TU M O R S But why look for locks that you already know exist? Well, many of these genetic locks have only been paired with cancers at the site where they were discovered. For example, BRCA1 is known as a breast cancer gene. But recently, it’s been implicated in ovarian and even bladder cancer. Likewise, genes that control cell growth in the presence of androgens have long been known to drive prostate cancer, and researchers at CU Cancer Center have shown that these same genetic signatures can contribute to bladder and breast cancers. And mutations in the genes EGFR, ALK and ROS1 have been shown to drive lung cancer—and now it turns out these mutations also drive subsets of colon cancer. So there’s precedent for the genetic causes of cancer jumping the sites where they were discovered. Instead, one mutation may drive many different “kinds” of cancer at many different sites. Doebele wondered if any known genetic causes might jump into lung cancer. And so he collected 36 samples from tumors that tested negative for any known genetic driver of lung cancer and sent them to the lab for gene sequencing. If not a known driver, maybe there was an unknown driver? And if there’s an unknown driver, maybe it was one of these 180 suspicious candidates? Sure enough, samples started coming back positive for mutations in the gene NTRK1. If Doebele’s samples had been from thyroid tumors there would’ve been no surprise: When accidentally mashed together with another nearby gene, NTRK1 signals cells to constantly grow and divide, leading to the cancer known as papillary thyroid carcinoma. But Doebele’s samples weren’t from the thyroid; they were from lung tumors. Robert C. Doebele, MD, PhD, associate professor of medical oncology at CU School of Medicine C ASE Y C ASS ONE MUTATION MAY DRIVE MANY DIFFERENT “KINDS” OF CANCER AT MANY DIFFERENT SITES. 5 C3: WINTER 2013 C OURT E SY OF LE ILA GARC IA TE STI N G TU M O R S But was it the random chance of an unlucky couple of lung cancer cells that happened to hold this mutation—or was the pattern prevalent enough in the overall tumor to make it worth targeting? Doebele didn’t know. Yet. He took the idea back to the lab of Leila Garcia, PhD, director of the Cytogenetics Shared Resource at CU Cancer Center and a top, international expert on designing tests that could show how many cells inside a tumor hold a specific genetic mutation. Garcia looks at cancer with the technique known as fluorescence in-situ hybridization (FISH). She designed a FISH test to look for NTRK1 fusions. Basically, it made cells with this genetic anomaly light up. And cells within Doebele’s lung cancer patient samples lit up. “So I walked up the street to Arrary BioPharm, a biotech firm in Boulder and it turns out they had a couple compounds that target this gene just sitting on the shelf,” Doebele says. In other words, now with a clear picture of the lock, it turned out there was already a key and it was sitting there in a lab not a half-hour drive from Doebele’s office. With a lock, a test to know where the lock lives, and now a key, Doebele is laying the groundwork for possible clinical trials that would use one of Array’s compounds to target the gene NTRK1 in the subset of lung cancers seen malevolently active on Garcia’s FISH test. That’s how collaboration gets done. FLUORE SCENCE I N-SI TU HYB R ID IZ AT ION (F ISH ) CASEY CASS F I N G E R P R I NTS, S P E C S & D R U G D EV E LO P M E N T This is cutting edge. It’s right here. But CU Cancer Center certainly isn’t the only institution where researchers are picking apart cancer based on mutations instead of sites where it lives. The National Cancer Institute is prioritizing a program called Strategic Partnering to Evaluate Cancer Signatures (SPECS) to help cancer centers and other research institutions pool their expertise to discover new mutations, define their importance and design tests to see which tumors hold these mutations. Basically, this groundwork lays mutations at the feet of drug companies who have the capital and expertise needed to bring drugs to market that target these mutations. And it’s a major revolution for targeted cancer therapies. Imagine this: you find a mutation that’s present in a tiny subset of one cancer type. Do you think it’s worth many, many millions of dollars for a drug company to bring a drug to market that they can eventually hope to sell to this small slice of the cancer population? Don’t count on it. But if a specific mutation isn’t just driving the growth of, say, 2 percent of lung cancers, but also 2 percent of colorectal and ovarian and head & neck and prostate cancer, all of a sudden you have a larger market and a powerful incentive for drug companies to develop the treatment. By finding mutations across cancer types, SPECS may not only give drug companies targets, but may demonstrate the market potential that can help the idea of a drug become reality. With that in mind, national and international researchers from the SPECS group recently met at CU Cancer Center to take stock and explore next steps. Among this group of elite researchers is Fred R. Hirsch, MD, PhD, professor of medical oncology and pathology at the CU School of Medicine. Hirsch leads the only SPECS group focused on lung cancer. And basically the challenge is this: While genetic ways to understand and treat the most common form of non-small cell lung cancer have exploded in recent years, its cousin, squamous cell lung cancer, has lagged far behind. Treatment options are basic: surgery, chemotherapy and radiation. Leila Garcia, PhD, director of the Cytogenetics Shared Resource at CU Cancer Center, designed a FISH test to look for NTRK1 fusions. 6 WWW.COLORADOCANCERCENTER.ORG “The SPECS program has been very successful,” Hirsch says. “The FDA recently approved a new, genetic signature in micro-RNA that can help refine the prognosis for breast cancer, discovered by a SPECS group. And the leukemia group is also far ahead. The lung group is the youngest in the SPECS family but we’re honored to have received a sizeable grant a year ago to bring the understanding of squamous cell lung cancer in line with these other diseases.” The SPECS lung cancer group that Hirsch heads includes researchers from eight institutions in the U.S. and Canada, and is at the stage of genetically profiling around 1,000 squamous lung cancer samples. Then they will pair this profiling with patient outcomes. What genetic signatures predict strong outcomes and which signatures predict poor outcomes? If Hirsch can discover which genes are “bad” in squamous cell lung cancer, he can immediately offer genetic models that can help patients and doctors plan around a more accurate prognosis. And these same “bad” genes may provide drug companies with targets. A WE B O F G E N E S With Doebele, Garcia and Hirsch, these are stories of what happens when one gene goes bad: it turns on or off or makes something it shouldn’t and the result is cancer. But what happens when more than one gene is to blame? Remember the confusing soup of the human genome? Well, it’s about to get even more confusing. That’s because genes interact in complex and sometimes unpredictable ways. Maybe a good gene acts bad in the presence of a third gene? Or a twist in a gene affects another far downstream? Or many genes combine to create a catastrophic effect? As wonderful as it is to notice and treat the direct one-to-one effects of a gene that causes cancer, sometimes it’s not that easy. Sometimes a cancer can’t be defined by one gene that creates it and instead is a complex fingerprint of many genes, all acting together in a spider-web of interactions in which the shaking of one thread creates shaking somewhere else and eventually the whole web wobbles. CASEY CASS SOMETIMES A CANCER CAN’T BE DEFINED BY ONE GENE THAT CREATES IT AND INSTEAD IS A COMPLEX FINGERPRINT OF MANY GENES Dan Theodorescu, MD, PhD, director of CU Cancer Center, developed a model that squints at these webs, taking into account its genetic ups and downs to create a concise picture of exactly how the web wobbles—and recommends drugs and treatment strategies that will stop its shiver. It’s called CO-eXpression EXtrapolatioN or COXEN. At its heart it’s a marriage of math and genetics. With Doebele, Hirsch and Garcia, we’ve been looking at many samples of the same kind of cancer to see what they all share—what mutation creates them and so what mutation, turned off, could cure them? Theodorescu’s COXEN model does something a bit similar, but across many different cancer types. See, the National Cancer Institute maintains 60 cancer cell lines—60 dishes in which specific “flavors” of cancer cells grow—lung or bladder or breast, etc. Theodorescu looked not at one slice of the NCI-60 but across all these cells. The NCI-60 have now been hit with so many experimental drugs that we have a darn good idea of how they react to just about anything that’s been made. We even know how cancer patients with these types of tumors fare with certain drugs and treatments. Fred R. Hirsch, MD, PhD, professor of medical oncology and pathology at the CU School of Medicine and associate director of international programs at CU Cancer Center, leads the only SPECS group focused on lung cancer. 7 C3: WINTER 2013 But what makes cells and patients respond to drugs? Theodorescu hypothesized that it was their genetic expression—their fingerprint—and he asked an important question: Across these 60 different types of cancer, was there anything in the genes that could predict how these tumors respond to treatments? In other words, is there a genetic signature that can predict how all cancers—regardless of where they live or even their specific one-gene mutations—respond to certain kinds of drugs? The answer is a resounding yes. Theodorescu showed that cancers across the NCI-60, no matter if they were from breast or ovary, respond in certain ways to certain drugs. And then he showed that he could extend these results even past the limits of these 60 cell lines—even in bladder cancer (Theodorescu’s specialty), which was not represented in the NCI-60, cells with genetic signatures he’d seen responded in expected ways to drugs. A cancer’s genetic fingerprint predicts its response to treatment. The COXEN principle has identified genetic markers that predict how a tumor will respond to therapy, and the use of these markers is now making its way up the cancer treatment food chain: Thomas Flaig, MD, medical director of CU Cancer Center’s Cancer Clinical Trials Office and assistant professor of medicine at the CU School of Medicine, has NCI approval for a national clinical trial of COXEN in bladder cancer patients. “In bladder cancer, you commonly treat the cancer with chemotherapy for a couple months and then follow with surgery. But sometimes tumors don’t respond to drugs and you’ve wasted a couple months. We hope this trial will show whether COXEN can predict based on a tumor’s genetic signature which preoperative chemotherapy is best and also show which tumors won’t respond to drugs at all, so that we can go straight to surgery and save time,” Flaig says. CASEY CASS MATCHING EACH PATIENT TO THE BEST DRUG BASED ON THE TUMOR’S GENETIC CHARACTERISTICS COULD REVOLUTIONIZE CANCER CARE For obvious reasons, you can’t just release an algorithm into the wilds of clinical care and let it start recommending treatment options. If this COXEN trial shows that it knows ahead of time how treatments will turn out and what treatments might be better, Flaig and Theodorescu are optimistic that in the next clinical trial COXEN will be allowed to say not only, “I told you so,” but also, “Here’s a better way.” “In essence we hope COXEN could guide treatment selection, matching each patient to the best drug based on the tumor’s genetic characteristics. This truly personalized approach could revolutionize cancer care,” Theodorescu says. Effectively, what researchers at CU Cancer Center and elsewhere are asking is, “Are we grouping cancers the right way?” says Doebele. “Might these things that we describe as lung, breast or colorectal cancer be better described not by their site but by their genetic characteristics? I don’t want to discard decades of clinical work – but while viewing cancers at their site may help recommend the right surgery, chemotherapy and radiation, it does nothing to recommend new, personalized or precision treatments.” How should we best understand cancer in order to treat it? By the top-down approach of its site or the bottom-up approach of the genetics that built it? By moving from the first to the second, CU Cancer Center is a leader in the way future cancer care will be delivered. “The cure for cancer is in your genes,” says Theodorescu. Thomas Flaig, MD, medical director of CU Cancer Center’s Cancer Clinical Trials Office, has NCI approval for a national clinical trial of COXEN in bladder cancer patients. 8 WWW.COLORADOCANCERCENTER.ORG DEC DING CANCER H HOW A FISH TEST SNIFFS CANCER ow do you know that a specific reindeer is Rudolph? Well, his nose lights up of course! The genetic test in this article known as fluorescence in-situ hybridization Researchers use FISH tests to check for the genetic sequences that cause cancer. For example, CU Cancer Center researchers are showing that when the gene NTRK1 accidentally fuses with another nearby gene, it can cause lung (and potentially other) cancer. So Garcia’s FISH test sends “noses” with the genetic sequence of these NTRK1 fusions into cells. If bits of a cell’s chromosomes fluoresce, then the cell has this mutation, and so may be susceptible to drugs that also target this specific gene rearrangement. First you have to know that a mutation causes cancer. Then you have to be able to test a tumor for this mutation. Last you need a drug that targets the problem. That’s the modern workflow of cancer care. (FISH) does the same for cells. Starting in the 1980s, Leila Garcia, PhD, and other leaders in the field have been developing light-up noses specific to genetic sequences. You make a nose with a suspicious genetic pattern, place many of these noses inside a cell, and the noses attach only to chromosomes that share the same sequence. When the noses light up—they fluorescence—you know there’s a match: a cell has the same genetic sequence as the “noses” in the FISH test. FISH Genetic Test NTRK1 N NTRK1 BEFORE Does this cell’s chromosomes conceal the cancer-causing mutation, NTRK1? AFTER Specially designed FISH test ‘noses’ attach only to NTRK1 mutations. When attached, ‘noses’ fluoresce. 9 C3: WINTER 2013 A CONVERSATION WITH TIM GARRINGTON, MD Associate Professor of Pediatrics, Director of the Pediatric Hematology, Oncology and BMT Fellowship Program University of Colorado School of Medicine BY GA RT H S U N D E M Program Leader of the Solid Tumor Team Children’s Hospital Colorado “When I first started as a pediatric oncologist, I’d be shaking going into the room if I knew I had to deliver bad news to a family,” says Timothy P. Garrington, MD. Here we talk with Dr. Garrington about his process of learning to communicate difficult and sometimes devastating news to patients, and about his efforts to teach these skills to residents and fellows at the University of Colorado School of Medicine. C3: You’ve been involved in changing how doctors communicate with patients— specifically in how doctors deliver bad news. When you started your work, how was this skill taught? Garrington: The short answer is that it wasn’t. Forty years ago, medicine was very paternalistic and we didn’t even tell patients they were dying. Now we teach communication skills at the medical student level, but in my opinion communication skills training needs to continue beyond medical school into residency and fellowship, where trainees need these skills in real settings. As far as residents and fellows, there really wasn’t much of anything when I was in training, and I don’t think people had a sense of how to go about it—you learned by doing and developed whatever habits you developed. C3: And were some residents and fellows Garrington: Well, yes. Some are naturally better at communication than others, and the belief has been that you’re either good at it or you’re not. But what we found is that the ability to deliver bad news and communicate well with patients is related to a specific set of skills that can be taught to anyone. C3: Like what? Garrington: First, there’s a model we follow and teach. And then there are some important things we’ve learned from our experience along the way, too. The model is called SPIKES, which stands for Setting (you can’t be in a busy hallway or have your beeper going off), Perception (what do the families already know and what are they worried about?), Invitation (you invite patients and families to tell you the kind of information they want—how much or how little, test results or just big picture), Knowledge C3: But you said there are also things you’ve learned from experience? Garrington: Yes, absolutely. We help residents and fellows work with real patients, and we even did a study, led by Gee Mei Tan, a pediatric anesthesiologist at Children’s Colorado, using actors to play the part of patients. One huge thing we see is that after communicating the information—the “K” step of knowledge—doctors want to jump in and fill the space that inevitably comes after. There’s a basic human need to make other people feel okay. And so a doctor might tell a family that a scan came back developing better habits than others? (this is where you deliver the bad news in an organized and straightforward way and provide the time and space to answer all of their questions), Empathy (you show the patient you empathize with their feelings of sadness or even anger), and Steps (the plan moving forward). bad, but then jump right into what we’re going to do about it and why everything’s going to be okay. Giving space allows time for patients to process the information and lets the next step happen, which is empathy. C3: I can see why it would be hard for doctors to allow themselves to empathize day in and day out… Garrington: It’s difficult and uncomfortable and that’s why so many doctors avoid empathy, or even try to avoid the process of delivering bad news altogether. But this is important: What we see from experience is that doctors need this step of empathy too. When a patient starts crying or even when a patient expresses anger, the tendency is to minimize the emotion—to smooth it over. But let me tell you, your doctor is experiencing this emotion too. We know a diagnosis can be unfair and we’re sad and angry right along with you. In the long run, empa th izing is essential for the doctor—it makes you more satisfied with what you’re doing. There’s less burnout and less risk of disengagement. Empathy is as critical to the experience of being a doctor as it is to the experience of being human. Pediatrics isn’t all hugging babies. Sometimes you have to deliver bad news. Dr. Tim Garrington, MD, knows how. 10 WWW.COLORADOCANCERCENTER.ORG CAS EY CASS Work Doesn’t Stop at the Clinic Door FOR HER TH E CAN T H E R E SA PAC H E C O, M D, TI M E S P E NT W ITH PAT I E N T S I S O N LY A PART O F H E R DAY. OT H E R I S D I S C OVE R I N G S C I E N C E THAT H E L P PATI E NTS S H E WI LL N EVE R M E ET. BY E R I K A MATI C H Theresa Pacheco, MD, had a father in health care, an interest in science and a strong stomach when she was a kid in rural Colorado. Those things led her where she is today—part of a University of Colorado Cancer Center team that is working to develop a sunscreen that can sense DNA damage from sun exposure and even repair it. Pacheco is one of seven children in a family from San Luis, Colorado’s oldest town. When she was 14 years old, her father, a dentist, needed an on-demand assistant and she fit the bill. Pacheco’s quiet but solid demeanor matched his requirements for a dental assistant. “I always liked science,” says Pacheco. “My father said medicine was a great choice for women and I just followed that path.” Pacheco’s path took her to the University of Rochester in upstate New York and then led her back to Colorado and a career in skin research. Pacheco’s research at the University of Colorado School of Medicine started with the study of pigmentation and ‘sun spots.’ She received an award to look at the molecular basis of a pigmentation disorder called generalized lentiginous. Although commonly thought to be only a cosmetic nuisance, understanding what causes ‘sun spots’ is important because melanoma, the most dangerous type of skin cancer, is primarily caused by repeated sun damage. “My research is considered clinical-translational,” Pacheco says. “Everyone talks about how that’s important. In the sun spot research project, I literally took the research from observations in the clinic back to the bench.” This laboratory study of sun spots ultimately led to the mapping a new gene in the lab under the mentorship of Richard Spritz, MD, of the Human Medical Genetics and Genomics Program. It sounds simple, but this took years. Now, Pacheco is collaborating with Yiqun Shellman, PhD, a research expert in pigmentation from the department of dermatology, and with Kristin Artinger, PhD, an expert in neural crest development from the molecular biology program. Under their collective expertise, the research continues using various lab and animal models to understand why the gene they mapped is important for pigment cell growth and survival, and ultimately how the gene contributes to diseases like melanoma. Pacheco says that instead of clinic-to-bench, the workflow of her sunscreen research project went the other way: “I am doing the opposite.” She says, “I am taking research from the clinic to the bench.” In the clinic, Pacheco had been working with patients who had undergone organ transplants. Interestingly, the same drugs that transplant patients use to prevent organ rejection lower their immune system and increase their skin cancer risk. Pacheco started a clinic in large part for these high-risk patients, and researchers at other institutions, like the Mayo Clinic, took notice. Pacheco was invited to take part in a study that highlighted the need for specialty care for these high-risk skin cancer patients. That brings us to the sunscreen. A group of scientists at CU Cancer Center including Raj Agarwal, PhD, and Tom Anchordoquy, PhD, from the Skaggs School of Pharmacy and Pharmaceutical Sciences; Gail Harrison, PhD, from CU School of Medicine; and Michael Glode, MD, from CU Cancer Center, read Pacheco’s study and asked her to be the dermatologist in their efforts to develop a better sunscreen. The sunscreen that resulted from their collaboration not only prevents sunburn and skin cancer but it can detect and repair DNA damage from sun exposure. Pacheco says there are several reasons their sunscreen is better than existing products. “It uses FDA standards for sunscreens; we were compliant with that. But, we also used a botanical based on Raj Agarwal’s work that makes the formulation better,” Pacheco says. Agarwal is one of the world’s most accomplished scientists exploring the use of naturally occurring compounds to prevent and control cancer. It’s been eight years between Pacheco’s paper and the team’s product, but the formulation for the sunscreen has a patent pending and it will soon be available to the public. Of course, first there are some business details and possibly even clinical trials. But for Pacheco it’s all about bringing science to people who can benefit from it. “That’s why we all do this. As a physician, you are limited to helping the patients you come in contact with, but with a scientific discovery you have the opportunity to be able to apply it toward a greater number of patients.” ABOUT THERESA PACHECO, MD Investigator, University of Colorado Cancer Center Associate Professor, Department of Dermatology, University of Colorado School of Medicine “My research is considered clinical-translational. In the sun spot research project, I literally took the research from observations in the clinic back to the bench.” —theresa pacheco, md 11 C3: WINTER 2013 C ASE Y C ASS MD CLINICAL CARE PAT RIC K C AMPBE LL BY K I M C H R I SCA D E N FOURTH TIME’S A CHARM FOUR CANCERS CANNOT STOP RETIRED DENTIST AND AVID HUNTER, TOM EVANS, FROM LIVING LIFE TO THE FULLEST 12 WWW.COLORADOCANCERCENTER.ORG Opposite: Tom and Bev Evans in their Genesee home. Above: Over the years, the couple has been able to combine their love of hunting and travel on several international hunting trips to Zambia, Tanzania, South Africa, and Argentina. A LO N G H I STO RY O F CAN C E R After graduating from the University of Nebraska Medical Center College of Dentistry, Tom moved to Colorado in the 1960’s to open his own practice. “I wanted to be in the mountains,” Tom says. “Back then I’d go up to Longs Peak for the hell of it. I had $5,000 saved so I set up an office in Golden, but I didn’t have any patients.” As luck would have it, the Colorado School of Mines was a few blocks away. With no patients and a lot of free time, Tom started playing handball with the professors. Within a few months, he’d “recruited” his first patients. By 1998, more than 30 years later, Tom knew it was time to retire. He was diagnosed with prostate cancer. Managing treatment and his practice wasn’t an option. Tom sold his practice and focused on beating cancer. After a radical pros tatectomy and radiation, he was a first-time cancer survivor. Seven years later cancer returned. This time he was diagnosed with squamous cell cancer at the base of the tongue. Large doses of chemotherapy and radiation were needed. Tom was fed strictly through a feeding tube and lost more than 10 pounds on his already small frame. Yet again, he survived. Doctors caught the cancer early. Then in early 2012 Tom noticed a spot on his nose. Cancer again. Since he’d spent so many years in the Colorado sun he wasn’t surprised by the diagnosis. More surgery would be needed. This time he’d have reconstructive surgery, essentially sculpting a new nose on his face. As the caregiver, Bev recalls this time as beyond trying. EVERY TIME HE HAS BEEN DIAGNOSED WITH CANCER, I JUST SAY ‘NO, NO, HE’S GOT MANY MORE YEARS TO LIVE.’ —BEV EVANS “He was quite the sight to see,” Bev recalls. “The nose wasn’t a big deal,” Tom chimes in. “Oh no, it was a big deal,” she says. “It wasn’t easy.” Having survived a third cancer, Tom and Bev thought they were in the clear. Tom was feeling and looking great. A few months later, however, they received the ALL diagnosis. Doctors thought Tom’s ALL could have been due to all his previous cancer treatments. “It’s hard,” Bev says. “Every time he has been diagnosed with cancer, I just say ‘no, no, he’s got many more years to live.’ This one has been very tough. I didn’t think we could make it through.” 13 C3: WINTER 2013 C OURT E SY OF T OM E VANS A t the end of 2012, Dr. Tom Evans was hauling wood for a new deck up the mountain behind his house in Genesee— a climb he’d done almost every day since 1997—when his body told him to stop. He was fatigued and short of breath. “I was doing fine—walking a few miles every day and hunting,” Tom says. “One day I couldn’t walk up the mountain to save my soul. I was exhausted. I knew something was wrong.” At 75, Tom knows his body. He’s spent his life being active— biking up Lookout Mountain, hunting around the world, playing handball at the Colorado School of Mines, and farming in Nebraska. He’s no stranger to knee surgeries; he’s had four. One of his ankles has been fused. And he’s already heard the words “you have cancer” three times. While many would shrug off not making the climb to being out of shape, Tom was far from it. He knew it meant trouble. He just didn’t expect cancer. Not again. After a trip to his primary care physician and a bone marrow biopsy, the news was bleak. Tom had acute lymphoblastic leukemia (ALL), a fast-growing cancer impacting a type of white blood cell called lymphocytes, which help the body fight infections. When lymphocytes become cancerous they grow quickly and crowd out the bone marrow, preventing it from making normal red blood cells, white blood cells and platelets. Tom was not the average patient; the cancer is most common in children under the age of 15. Yet, despite the news, Tom said, “Let’s get’er done.” His life had already handed him many challenges. He and his wife, Bev, were ready to fight one more cancer. Dan Pollyea, MD, MS, (above left) clinical director of leukemia services, and Jonathan Gutman, MD, (far right) clinical director of allogeneic transplantation, work together to develop comprehensive treatment plans for their patients at CU Cancer Center. J U ST O N E M O R E When the couple received the news, they were sent to the University of Colorado Cancer Center to see Dan Pollyea, MD, MS, clinical director of leukemia services, and Jonathan Gutman, MD, clinical director of allogeneic transplantation. Both are members of the integrated Blood and Marrow Transplant Team, a specialized group of blood cancer doctors and transplant specialists working together to develop comprehensive treatment plans for their patients. “In other cancer centers the transplanters and non-transplanters often work separately,” says Gutman. “At CU Cancer Center our team works together very well, which in turn allows us to move quickly to treat our patients.” The doctors informed Tom and Bev that treatment options were risky due to Tom’s age. A phase I clinical trial was his best option; chemotherapy could take his life. However, Pollyea and Gutman agreed to treat him. “They told me it wasn’t good, but that they’d give treatment a go,” says Tom. “I told them I didn’t have a choice. I felt like hell.” Tom was enrolled in the team’s phase I clinical trial using two drugs: entinostat and clofarabine. Entinostat is believed to stop the growth of cancer cells by blocking some of the enzymes needed for cell growth. In tandem with clofarabine, a drug used in chemotherapy that kills and stops cells from dividing, entinostat is believed to kill even more cancer cells. At first the two drugs worked for Tom; the leukemia cells went into remission, but then started to come back. The next option was chemotherapy. Although Tom was older, his good health and success in the clinical trial made him eligible for chemotherapy. After one dose the leukemia went back to remission—a surprise to both Pollyea and Gutman. “Most patients in Tom’s age group have to endure at least two to three rounds of chemotherapy before we see the cancer go into remission,” Pollyea says. “With Tom it happened right from the start, which we attribute to the success of the clinical trial he was previously on.” After 30 days in the hospital and countless side effects, Tom was ready for step three of treatment—a stem cell transplant. Luckily, Tom’s brother was a perfect match. A “G E NTLE” TRAN S P LANT The common treatment for leukemia is to hit it with massive amounts of chemotherapy and radiation followed by a stem cell transplant, says Gutman, but this type of aggressive treatment can be too much for older patients to withstand. Though transplants are not common in Tom’s age group, Gutman believed he could benefit from an non-myeloablative or “gentle” allogeneic stem cell transplant, where stem cells from a healthy person are given to a patient after mild chemotherapy. On May 7, 2013, Tom received his brother’s stem cells. “Patients of Tom’s age historically have a very poor prognosis, but he’s been able to take advantage of several of the clinical trials we have to offer,” Gutman says. “We were able to work smoothly and efficiently to move him on a trial and then seamlessly take him to stem cell transplant.” But Tom and Bev didn’t want to stop at the transplant. They wanted something to increase Tom’s choice of cure. Turns out, Pollyea and Gutman were recruiting patients who were at high-risk of post-allogeneic stem cell transplantation relapse for a new clinical trial. Tom was one of the first to enroll. Do you have an inspirational story? Tell your story at http://story.coloradocancercenter.org or contact Kimberly.Chriscaden@ucdenver.edu. 14 WWW.COLORADOCANCERCENTER.ORG GLE NN ASAKAWA To search for a cancer clinical trial, visit www.uch.edu/conditions/cancer/research/research_trials/ “We figured why not try a drug that has the chance of cancer never reoccurring,” Bev says. M O P P I N G U P TH E D I S EAS E Earlier this year, with grant funding from the Leukemia & Lymphoma Society, Pollyea started the first clinical trial focused on finding a maintenance therapy for patients post-transplant. Currently, no maintenance drugs for the post-transplant setting exist. He decided to approach Pfizer about using their investigational drug PF-04449913. The drug has been shown to inhibit the hedgehog signaling pathway, which tells cancer stem cells to regenerate killed cancer tissues. “In a healthy person the hedgehog signaling pathway is only activated when you are a fetus. During the rest of your life it is minimally active,” Pollyea says. “In adults an abnormal activation of the pathway can lead to various cancers through the transformation of adult stem cells into cancer stem cells. Pollyea and Gutman hope PF-04449913 will “mop up any leftover disease,” says Pollyea. While doctors always hope to cure patients after transplant, they know relapse is a possibility. “As a physician, most of the time we let our patients go after their transplants and simply wait and see if the leukemia comes back,” Gutman says. “If our experiment with maintenance therapy works, we’ll be able to offer a pill to our patients and decrease the risk of relapse.” Currently, the trial is being expanded to the Fred Hutchinson Cancer Research Center in Seattle, Wash., so that more patients can be recruited. They intend to recruit 28 patients. Beyond providing a maintenance drug, Pollyea hopes the study will help them get better at predicting which patients will benefit from using it. In order to do so they’re continuing to look at what risk factors make patients more prone to relapse. Only time will tell if the transplant and drug are working for Tom. “It’s going to be a year before we know that the transplant worked,” Bev says. And if it doesn’t, Tom says, “There are no other options.” Tom and Bev Evans check “sea kayaking in Alaska” off their bucket list. S LOW I N G D OW N In the meantime, Tom and Bev have been continuing to enjoy life, checking off items from their bucket list left and right. They’ve traveled to Indonesia, Turkey, Costa Rica, India and Vietnam, to name a few. But their main passion has always been hunting. After all, an elk hunting trip in below freezing weather in the early 1990’s is what brought the two together. “When she went elk hunting with me for the first time and camped out in the snow, I knew she was the one,” says Tom. Despite being a petite woman, Bev can hold her own in the wilderness. Over the years, they’ve been able to combine their love of hunting and travel on several international hunting trips to Zambia, Tanzania, South Africa and Argentina. They even renovated their old cabin to showcase the many animals they’ve accumulated. However, all the adventures stopped after Tom’s diagnosis. Tom has had to learn to sit still. “It’s really hard to not be active. I’d walk to the top of the mountain every day. Now I just sit around,” Tom says. “I can’t wait to start lifting weights and walking again. You go crazy sitting around all day.” The one thing the couple has kept up with is visiting their two farms in Nebraska—a place where Tom finds rest or where Bev tries to keep Tom from mowing the yard and riding the tractor. Tom says getting back to his farm is on the top of his list. “I’ve hunted plenty,” he says. “I don’t need any more heads.” Instead he needs his farm and his tough wife to keep him going. “She’s really protective,” says Tom. “If it wasn’t for Bev, I would never be able to take care of myself—I couldn’t even remember to take all those pills.” As for Bev, she’s become the expert caregiver after all these years. “He’s gotten through all of the other cancers, but I really thought this was going to be it,” she says. “It’s been a long haul, but we’re now starting to see the end of the tunnel.” The end of the tunnel is May 2014—a year post transplant. If Tom’s leukemia comes back, it will come back within the first couple of years. Until then, Tom’s learning to rest and finding more to add to his bucket list. “I’ve gotten beat up all these years, but I’m still kicking,” Tom says. “I’ve got a lot left on my list to complete. “I may not make it another year, but I sure hope so.” 15 C3: WINTER 2013 COURTESY OF TOM E VANS PALLIATIVE CARE CONSULT SERVICE HELPS FAMILIES TAILOR CARE TO MEET PERSONAL DESIRES BY M A RY L E M M A BARB CASSOU WAS BACK TO WORK as a sales director two weeks after her husband, Bob, lost his life to cancer—a journey that lasted more than five years. After Bob’s diagnosis of stage IV cancer—a shock considering “he was in the best shape of his life,” Barb recalls—the Cassous decided to get a second opinion at the University of Colorado Cancer Center. “We did the research and learned that Dr. Ross Camidge was a leading [lung cancer] expert in the world,” she says. “Bob and I quickly discerned that the University’s approach was a much better fit for us. The focus [at CU Cancer Center] was about living, staying positive and enjoying the best quality of life possible.” RE L I E V I N G T HE PAI N Pallium, or cloak, the Latin root from which palliative is derived, dates back centuries. But as a multidisciplinary medical specialty aimed at relieving the physical and emotional symptoms of serious illness, palliative care has been gaining ground only in the past decade or so, says Jeanie Youngwerth, MD, assistant professor of medicine at the University of Colorado School of Medicine. Youngwerth is director of the Palliative Care Consult Service at University of Colorado Hospital (UCH). The Cassous learned about palliative care services during their first visit to UCH. Still, the shock and stress of learning that Bob’s cancer was so advanced was an emotional derailment for Barb, so it wasn’t until her husband was admitted to the hospital with a pain crisis that she was reminded how the service could help. “Palliative care isn’t just about managing physical pain,” Barb says. “It addressed our emotional and mental stress. To see a healthy body and life withering away can cause a lot of anguish. The team was so instrumental in facilitating conversations with Bob.” One of the messages still resonating with Barb was the emphasis on quality of life. “They told us, ‘You have a choice about how you live your life.’ That opened our minds to choosing other options instead of solely the most aggressive treatment of the disease. The team was very good at listening and understanding the person—who that person is and what’s important to him and his family.” The team of palliative care experts at UCH includes boardcertified physicians, advanced practice nurses, chaplains and social workers who work hand-in-hand with the oncologists. “Our goal is to provide the best care to each patient,” Youngwerth says, “to improve their quality of life as they go through the cancer journey.” Tailoring care for the patient doesn’t mean “one blanket of care for all,” she says, “it’s taking into account the individual’s background, culture and spiritual beliefs. We need to explore all those things. It all comes down to that particular patient’s needs. There’s no cookbook.” M AKIN G PALLIATIVE C ARE K N OWN Integrating palliative care at the point of diagnosis is critical, says Jean S. Kutner, MD, MSPH, professor of internal medicine at the CU School of Medicine. “We’re getting away from waiting for palliative care.” There’s also a trend to integrate palliative care into medical school curriculums, which CU School of Medicine has done. “When I was in school, I hadn’t even heard of it,” Kutner says, 16 WWW.COLORADOCANCERCENTER.ORG C OURT E SY OF BARB C ASSOU Bob and Barb Cassou on an emotional high as they celebrate their daughter’s high school graduation. FR O M I N- PAT I E NT T O OUTPATI E NT As in-patient palliative care has grown (UCH has had a palliative care service since 2000) Kutner, Youngwerth and their care collaborators have their eyes on another opportunity: an out-patient palliative care clinic. Tom Purcell, MD, executive medical director and associate director for clinical services at CU Cancer Center, is a big advocate of the outpatient clinic. When you think about it, he says, “much of our cancer care is in an outpatient setting, so having the palliative care team available for outpatient consultation is imperative.” An outpatient palliative care clinic would help fill the gaps, Youngwerth says, by providing an extra layer of support for Jean Kutner and a team of researchers are exploring informal caregivers’ and patients’ experiences not only of cancer but other complex illnesses. CASEY CASS “but now medical students are demanding palliative care in the curriculum and in residency programs.” UCH is one of 15 sites across the country awarded $10,000 to put toward the costs of achieving The Joint Commission advanced certification in palliative care. Kutner and Youngwerth attribute the trend to an increasing desire to treat not just the disease, but the whole person—as well as how family members are affected by the stress of cancer and other serious illnesses. Research is a key factor in the palliative care equation and is informed by the clinical setting, Kutner says. “A cornerstone of quality palliative care is the availability of research evidence to support clinical decision making and to ensure best care for patients.” One especially interesting area is drug “de-prescribing.” For example, “When is it appropriate to continue or discontinue use of certain drugs when a patient has multiple chronic conditions—what’s safe?” There are myriad other opportunities to develop a more rigorous research base, Kutner says, such as measuring symptoms and symptom clusters; symptom intervention; family and informal caregiving; the impact of poverty and societal beliefs and approaches to the quality of life. Kutner and a team of researchers are exploring informal caregivers’ and patients’ experiences not only of cancer but other complex illnesses such as advanced lung disease and heart failure. patients and their family members. “It’s very hard to transition from constant support as an in-patient to almost no support when you’re released.” Kutner envisions an extra layer of patient support—ideally, within a few days after release. Kutner, Youngwerth and Purcell, whose extensive medical training was preceded by an MBA, have developed a business plan for the outpatient palliative care clinic. “My job is to provide all patients with supportive oncology services, including palliative care,” Purcell says, “but many people think palliative care is hospice care, so I prefer to call it symptom management. Who doesn’t want their symptoms managed?” His business background has in some ways informed Purcell’s philosophy about caring for patients. “In healthcare, we have an equation,” he says: “Quality over cost equals value. We need to better understand health systems, such as the cost of tests, when we need to make so many decisions. When I order a test, there’s no information to tell me its cost. And many studies have shown that the cost of delivering healthcare services doesn’t mean better quality of care. “Having access to such information would provide one element of the patient-centered approach so critical to ensuring that quality of life is as important as length of life,” he says. For Barb and Bob Cassou, “quality of life” prevailed. Her husband’s goal was to see his daughter graduate from high school, and he did. Since the end of her husband’s life, Barb has applied the knowledge and support from the palliative care team to understanding the needs of her 90-year-old father, who is nearing the end of his life. “What Dr. Youngwerth and her team taught us has helped me convey to my mother and siblings the importance of maintaining my Dad’s quality of life.” “Of course there’s grieving,” Barb says, “but the reason I’ve been able to recover as quickly as I have is because the palliative care team helped set realistic expectations for Bob and our family. They taught me to be the best caregiver I could be, and taught our family to make the most out of every day no matter what that day brought us.” 17 C3: WINTER 2013 S U P P O R T E R F CUS C OURT E SY OF SANDRA SAFFE R An Instant Click LOVE, LABOR AN D TRAN S PLANT FALLS I NTO PLACE FOR D ONOR S MORTON AN D SAN DRA SAFFE R BY TAY L O R B A K E M EY E R Today, love stories can seem reserved for romantic comedies or sappy daytime dramas. That is, until you meet Morton and Sandra Saffer. Their story is one for the movies—even after Mort, a West Point graduate, was diagnosed with non-Hodgkin’s lymphoma in 1997, Sandra says their story was straight out of An Officer and a Gentleman. During groundbreaking treatments at the University of Colorado Cancer Center, Mort became one of the oldest recipients of a bone marrow transplant at the time and through it all, Sandy stood by his side. Mort and Sandy’s love story began long before the diagnosis. After West Point, Mort flew for the United States Army Air Corps. The couple met on a blind date in 1972 and was inseparable after that night. “We spent the evening looking for places to go so that the date would not end,” says Sandy. “There was an immediate click.” Together they built a plastic manufacturing company that is still thriving today and lovingly raised three children—a son, Joseph, and two daughters, Jeryl and Lori. Twenty-five years into their marriage, at age 69, Mort was diagnosed with non-Hodgkin’s lymphoma. Non-Hodgkin’s lymphoma starts in the lymphocyte cells—a type of white blood cell that helps combat infections from viruses, fungi and bacteria. Symptoms of the cancer may include swollen lymph nodes, pain in the armpits or groin, unexplained weight loss, fever, excessive night sweats, and fatigue that will not subside. The National Cancer Institute estimates that nearly 70,000 men and women will be diagnosed with the disease and approximately 20,000 people will lose their lives to it in 2013. Patients like Mort are often given many treatment options, including chemotherapy, immunotherapy, radiation therapy and stem cell transplants. Mort’s oncologists recommended that he opt for chemotherapy and a stem cell transplant when his disease was diagnosed as recurrent. The question was whether Mort—almost 70— was eligible for a transplant. Not only was Mort older than most bone marrow transplant patients, he had also suffered a heart attack the previous year. With a blood-borne cancer, the goal is to give the patient a new blood system, but the procedure requires resilience. Doctors didn’t know if Mort’s body could withstand a transplant. Mort’s persistence eventually convinced doctors it was worth a try. At the old University of Colorado Hospital, Mort became one of the oldest men to receive a stem cell transplant, as well as the first man to go through the treatment after suffering a heart attack a year prior. JOHN PECHACEK Morton and Sandy Saffer “It was very difficult and traumatic watching him go through the stages,” Saffer says. “He was in isolation for two weeks for the transplant.” After isolation Mort spent 10 days in the outpatient wing and was then allowed to return home. The experimental treatment was a huge success and Mort’s cancer never returned. Doctors don’t like to use the “cure” word, but this is about as close as one can get. In 2007, a decade after Mort’s treatment, on the couple’s 35th wedding anniversary, Mort passed away. He was almost 80. Mort, the gentleman that he was, had one more surprise after his passing. “He had previously ordered flowers which I received after his passing,” explains Saffer. “I knew he was thinking of me!” Since Mort’s passing, the Saffer family has generously donated funds for an endowed chair for lymphoma research at the CU Cancer Center. “This chair will allow us to recruit a world class specialist in lymphoma for either or both research and patient care,” says Dan Theodorescu, MD, PhD, director of CU Cancer Center. “Generosity such as that demonstrated by Sandy and her family is critically important if we are to build a top 10 cancer center in Colorado.” Saffer says, “I am so impressed with the work the Cancer Center is doing. I know Mort would have been very pleased with everything.” Dan Theodorescu, MD, PhD, gives Sandy Saffer a tour of the Anschutz Medical Campus, a huge difference from the old University of Colorado Health Sciences Campus where her husband was treated. 18 WWW.COLORADOCANCERCENTER.ORG C O M M U N I T Y N E W S SUPPORT CU CANCER CENTER ON COLORADO GIVES DAY On December 10, Coloradans will come together again to raise millions of dollars for nonprofits in 24 hours. Help us fund groundbreaking research with a gift that day. When you give to the CU Cancer Center Fund on Colorado Gives Day, the value of your donation is increased by a partial match from the FirstBank Incentive Fund. ColoradoGives.org also covers all the processing fees, so 100 percent of your donation will go to CU Cancer Center. Even if you are unable to give on Colorado Gives Day, please consider a year-end taxdeductible contribution. Help us fund important projects like the ones featured in C3! To give on Colorado Gives Day or any other day of your choosing, visit www.cucancercenter fund.org or contact Karen Kennedy, executive director of development, at 303-724-7826 or email@example.com. LEMONADE FOR LIFE At 9 years old most children don’t think about cancer. Shana Saint-Phard, however, is not like most children her age. The third-grader has been raising money for breast cancer research by selling lemonade in her homemade stand. “I knew there were a lot of people dying from breast cancer so I wanted to find a way to help them,” says Shana, the youngest daughter of former shot-put Olympian Deborah Saint-Phard. “Plus I think that my friends might carry it in their bodies so I want to make sure that they don’t get it.” She came up with the idea for a lemonade stand when she heard “lemons for life” on the television. This summer she sold lemonade and cookies for 25 cents each with help from her sister Schuyler. “My stand is on the playground next to my house because lots of kids go there,” she says. “Some people give me extra money when I tell them that it is for breast cancer; they tell me to keep the change!” Shana raised $50 during her last lemonade stand. “We were out there for almost three hours,” she explains. “It was burning hot but I wanted to do it.” Not only does Shana raise money from her lemonade stand, she also puts almost all of her chore allowance towards the cause. “I try to get her to put some money in the bank, but that is hard to do,” says her mother, Deb, who directs the University of Colorado Women’s Sports Medicine program at the University of Colorado Hospital. One hundred percent of the funds Shana raises goes directly to Virginia Borges, MD, MMSC, director of CU Cancer Center Young Women’s Breast Cancer Translational Program. “We have great admiration for Shana and her mom,” says Borges. “We feel very blessed that a third-grader has the passion she does and UPCOMING EVENTS • November 21 – January 2: Subaru Share the Love Campaign • December 6: Ways to Live Forever film release • March 6, 2014: Dress in Blue • April 9, 2014: Cocktails for a Cure For more details about these events, visit http://events.coloradocancercenter.org. it is clear that she wants to change the world, especially in breast cancer.” Shana recently visited Borges’ laboratory where she was greeted with a party. “There was a cake and a little sign that said ‘we support you Shana’ with all of their signatures,” Shana says. “It made me feel like I was very important.” The visit to the lab inspired Shana in more ways than one: She is considering going into cancer research when she grows up. Shana plans to continue her lemonade stands to fight breast cancer and is always thinking of new ways to raise money. She encourages others to never give up on their passions. “Don’t let anybody get in your way,” she says. “Even if the popular kids think that it is stupid, you need to say ‘no it’s not, I’m doing this for a good cause’ and go on with it.” K IM CHRISCADEN DENVER UNDY 5000 DONATES $38K TO COLORECTAL SCREENING PROGRAM In June approximately 1,000 runners participated in the fifth annual Denver Undy 5000 5K run/walk, of which 90 were members of the CU Cancer Center team led by Christopher Lieu, MD. “It was great to have a very large team filled with patients, family members, friends, providers and researchers participating to support colorectal cancer screening, awareness and research,” says Lieu. The Colon Cancer Alliance, which works to knock colon cancer out of the top three cancer killers, hosted the event with a percentage of the money raised benefiting the Colorado Colorectal Screening Program (CCSP), a program that provides uninsured Coloradans colonoscopies at no cost through CU Cancer Center and community gastroenterologists. This year CCSP received nearly $38,000. C OURT E SY OF BE T H MANT H E Y 19 C3: WINTER 2013 UNIVERSITY OF COLORADO DENVER WI NTER 2013 www.coloradocancercenter.org 13001 EAST 17TH PLACE, MSF434 AURORA, CO 80045-0511 R ET U R N S E RV I C E R E Q U E ST E D Non-profit organization U.S. POSTAGE PAID Denver, CO Permit No. 831 C3: Collaborating to Conquer Cancer Published twice a year by University of Colorado Denver for friends, members and the community of the University of Colorado Cancer Center. (No research money has been used for this publication.) Editor: Kim Chriscaden | 303-724-0114 | Kimberly.Chriscaden@ucdenver.edu Contributing Writers: Garth Sundem, Erika Matich, Mary Lemma, Taylor Bakemeyer Photos: Glenn Asakawa, Patrick Campbell, Casey Cass, Kim Chriscaden The CU Cancer Center Consortium Members UNIVERSITIES Colorado State University University of Colorado Boulder University of Colorado Denver INSTI TUTIONS University of Colorado Hospital Children’s Hospital Colorado National Jewish Health Denver Health Medical Center Denver Veterans Affairs Medical Center Kaiser Permanente Institute for Health Research Visit us on the web: www.coloradocancercenter.org The CU Cancer Center is dedicated to equal opportunity and access in all aspects of employment and patient care. T H E M E S S A G E A Cancer Center is more than a building W hen most people think of a cancer center they picture a building. In this building are rooms and beds and patients and doctors and nurses and all sorts of equipment that beeps and drips and takes pictures. Sure, the University of Colorado Cancer Center has that building. Actually we have many—University of Colorado Hospital was recently ranked #23 for cancer care among more than 9,000 hospitals profiled by U.S. News & World Report; Children’s Hospital Colorado was #9 among children’s hospitals on this list; and University of Colorado Health provides care and cutting-edge clinical trials at facilities from Colorado Springs through Denver and Fort Collins and into Wyoming. But the University of Colorado Cancer Center is more than these buildings. We are what goes into these buildings. Think of our hospitals as the hubs of bike wheels with spokes radiating out from the center. Each spoke pulls in the care we’re able to deliver. One spoke reaches CU-Boulder, where CU Cancer Center investigators who work at the university are discovering the basic biology and chemistry of cancer cells. Another spoke reaches out to Colorado State University where veterinarians at the Flint Animal Cancer Center are delivering innovative and compassionate cancer care to animals, which influences our understanding of the disease in humans. “Think of our hospitals as the hubs of bike wheels with spokes radiating out from the center. Each spoke pulls in the care we’re able to deliver.” Still more spokes radiate out to laboratories on the Anschutz Medical Campus. And others lead to offices and clinics at a host of other institutions across the state where CU Cancer Center investigators are researching new treatments and training the next generation of doctors to deliver this innovative care. That’s why we’re the only National Cancer Institute-designated cancer center in Colorado, and why we’re NCI-designated as comprehensive and also as a consortium. Rather than a building or even many buildings, the University of Colorado Cancer Center is made up of people. We are made up of experts at many institutions in the state who collaborate with researchers across the U.S. and beyond. The care we deliver at the buildings most people picture is the sum of all this expertise working together to make cancer a manageable disease. FROM THE DIRECTOR DAN THEODORESCU, MD, PhD 20 WWW.COLORADOCANCERCENTER.ORG FSC logo