Seek Spring 2011

Karen Mack, R.N., and patient Hap Peterson are important members of the clinical trials team. Page 10.

Meeting at the

CROSSROADS Clinical trials bring science and treatment together

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Looking Beyond Cancer’s Limits SPRING 2011 Editor Susan Van Dusen Art Director Mikel Holloway Photographer Johnpaul Jones

Seek is published quarterly for the Winthrop P. Rockefeller Cancer Institute by the Office of Communications & Marketing at the University of Arkansas for Medical Sciences, 4301 W. Markham St. #890, Little Rock, AR 72205-7199; phone (501) 686-5686; Fax (501) 686-6020.

Chancellor, University of Arkansas for Medical Sciences Dan Rahn, M.D. Director, Winthrop P. Rockefeller Cancer Institute Peter D. Emanuel, M.D. Associate Director of Administration, Winthrop P. Rockefeller Cancer Institute Shirley Gray

WINTHROP P. ROCKEFELLER CANCER INSTITUTE

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WELCOME TO THIS ISSUE OF SEEK! We know that many of you are avid readers of our Cancer Institute publication. However, we also know that we don’t reach everyone who might like to receive Seek. If you know of someone who should be added to our mailing list, please contact us so that we may reach all those interested.

This issue of Seek focuses on clinical trials, otherwise known as clinical protocols. Clearly, many cancer survivors, including high-profile advocates such as Lance Armstrong, likely would not be alive today were it not for the direction that clinical protocols gave us in deciding which chemotherapy drugs are most effective and in what sequence, mixture or combination they should be given.

In order to determine the best treatment method, we have to treat similar cancer patients in two groups: one group is treated with the standard method and the other group is treated with the new method. This helps our researchers and physicians decide, head-to-head, which method is most effective.

Yet, while the vast majority of children with cancer are entered onto a protocol by their parents, only about 4 percent of adults with cancer in the United States ever go on a clinical protocol. There are many reasons for this, but we must continue to spread the word that patients are always needed to assist in clinical protocols, advancing research and improving treatment for those who will follow them.

Our research focus in this issue features Dr. Mayumi Nakagawa. Her research received funding from the National Cancer Institute last summer, and she now is the second Winthrop P. Rockefeller Cancer Institute researcher working on a cancer vaccine.

Dr. Nakagawa’s research focuses on a therapeutic cervical cancer vaccine, as opposed to the preventive HPV vaccine already in the marketplace. Her vaccine is intended for women who already have cervical cancer or are already infected with the HPV virus. You may have previously read about our own Dr. Tom Kieber-Emmons, who has dedicated many years to developing a therapeutic breast cancer vaccine.

More and more patients are using blogs and other forms of social media to share their stories. Two Cancer Institute bloggers are Stacy Sells, a inflammatory breast cancer survivor, and Vern Darley, husband of Deb Darley, a multiple myeloma survivor. We share their inspiring stories and how opening up their personal lives to both friends and strangers has helped in their healing process.

Best wishes for a beautiful and healthy spring!

Peter D. Emanuel, M.D. Director, Winthrop P. Rockefeller Cancer Institute Looking Beyond Cancer’s Limits

contents SPRING 2011

features PRIMARY COLORS

The Cancer Institute’s art collection is designed to inspire and uplift.

VACCINE DREAM

4

An HPV vaccine for those already infected is one step closer to reality.

MEDICAL PIONEERS

Clinical trials are the pathway from innovative research to new treatment.

COPING ONE KEYSTROKE AT A TIME

Cancer patients find comfort in sharing their stories online.

FAST BREAK, STRONG REBOUND

A sports injury led Donald Bodenner, M.D., Ph.D., down the career path.

4 8 10 16 22

8 in every issue Profile ................................................................. 20 Uterine cancer survivor puts her trust in the Cancer Institute.

Medicine Bag....................................................... 14 Rasco Symposium Matthew D. Katz, M.D. Zhou Named Winthrop Rockefeller Chair Day at the Races Nanotechnology

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Spotlight.............................................................. 24 “Transformation” Dedication Cooks Tour

Cancer Screening Outreach Day

Cover photo by Johnpaul Jones

“It was luck of the draw that I was fortunate enough to be born a Rockefeller. But with that comes the additional obligation, or I should say opportunity, to do some good.”

Winthrop P. Rockefeller 1948-2006

Winthrop P. Rockefeller Cancer Institute

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PRIMARY

COLORS

BY BY SUSAN VANVAN DUSEN SUSAN DUSEN

GROWING UP IN A FAMILY OF 10 CHILDREN, artistic expression wasn’t the first thing on Vicki Kovaleski’s mind.

“With so many kids in the house, our family was very work oriented and duty bound,” she said. “Nobody was really sitting around asking, ‘I wonder how Vicki feels about this or that.’”

In fact, Kovaleski said that she didn’t even realize she had a talent for art until she was a 30-something mother of three.

A Michigan native, Kovaleski was living in Indianapolis about 20 years ago when her husband, a rheumatologist, was recruited to work in Arkansas. At the time, she had a career in respiratory therapy, but said that arriving in Arkansas opened her eyes to a new possibility.

“I was blown away by Arkansas’ beauty and decided to try creating art,” she said. The budding artist enrolled in the University of Arkansas at Little Rock (UALR) where she learned everything from pottery to painting, before graduating with an art degree in 1990.

But the medium that really struck a chord was watercolor, not just for its aesthetics but also its practicality.

“I had three small boys at the time, and watercolor was the easiest thing to pick up and clean,” she said.

Kovaleski opened a graphic design business and began traveling to teach and study in places including France, Italy and Mexico. Then, in 1999, things changed.

Based on a gut feeling that something was wrong, she visited her doctor where a mammogram revealed breast cancer. With her youngest son still in high school, Kovaleski was faced with the challenges of a mastectomy u 4

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A BREAST CANCER SURVIVOR JOINS 29 FELLOW ARKANSAS ARTISTS TO FORM THE CANCER INSTITUTE’S ART COLLECTION.

Artist Vicki Kovaleski’s “Sisterhood” collection is a reflection of her experience with breast cancer.

and chemo. But she also was images of women in hats were blessed with an unexpected intended “to be about the power surprise: a circle of friends who of women helping women,” became not only her support she said. system but also her artistic

With her cancer diagnosis inspiration. now 12 years

The group behind her, of women We looked for pieces Kovaleski rallied to continues that were colorful and to use that Kovaleski’s aid, offering experience as spiritually uplifting.” whatever inspiration support she for her might need. Knowing that she paintings, three of which are might not always feel like having on display at the Winthrop P. visitors, the group placed a Rockefeller Cancer Institute. cooler on her back porch and

regularly filled it with meals for Forming a Collection her family.

Prior to the opening of the

“There were people Cancer Institute’s 12-story supporting me that I never knew expansion tower in August cared so much. To have that 2010, a call was put out for happen really lifted me up,” original art by Arkansas artists. she said.

With a total of 215 submissions,

It also inspired her to create a committee of artists from the a series of five paintings called University of Arkansas system the “Sisterhood” series that she selected 46 pieces representing sold as note cards to benefit the work of 30 artists to breast cancer programs. The display in the institute. Some

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of the works include multiple pieces designed to be displayed together.

In addition, the Cancer Institute commissioned two sculptures by Little Rock artist Michael Warrick (see sidebar) and an original stained glass window by Arkansan David Soos.

The committee was led

by Henri Linton, a member of the faculty at the University of Arkansas at Pine Bluff (UAPB) since 1969 and chair of its Art Department since 1980. Fellow committee members included Aj Smith and Brad Cushman of UALR and UAMS interior designer Claire Denham.

“When we were selecting the art, we looked for pieces that were colorful and spiritually uplifting,” Linton said. “We wanted the art to give the patients something to reflect on and also to lift them up.”

The final collection ranges from acrylic paintings and

LEGACY OF HOPE

The legacy of longtime Arkansas legislator Jerry Bookout was celebrated in March with the dedication of a statue at the Winthrop P. Rockefeller Cancer Institute.

Titled “Transformation,” the bronze statue was created by Michael Warrick, artist and professor at the University of Arkansas at Little Rock (UALR). Warrick also created the institute’s Seed of Hope sculpture at which patients celebrate their remission or final day of active treatment.

“Sen. Bookout was a longtime proponent of better health for all Arkansans. We are honored to dedicate this statue to his memory and hope that it will serve as an inspiration to our patients for many years to come,” said Cancer Institute Director Peter Emanuel, M.D.

Bookout, who died of lymphoma in 2006, spent 34 years as a state representative and 6

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senator, serving on legislative committees that dealt with health and education issues.

The sculpture, which is located on the fourth floor, depicts a woman with arms outstretched standing on a rocky outcropping. Seven butterflies are poised on her shoulders, arms and feet.

“Although the woman is on a rocky place, you can see in her pose and by the look on her face that she has found contentment. She represents that turning point in our lives when we release our fears to God and find peace, even in the challenging times,” Warrick said.

Bookout’s son, Sen. Paul Bookout, joined every member of the Legislature in sponsoring the 2007 bill that ultimately provided $36 million in matching funds to pay for the 300,000-squarefoot Cancer Institute expansion, which opened in August 2010.

Looking Beyond Cancer’s Limits

photography to sculptures and fabric. Pieces can be viewed in the lobby, clinic waiting rooms, administrative office area and other public areas in the new tower.

Several pieces were strategically placed in the Cancer Blood Draw waiting room, as the committee felt that patients waiting for blood work could especially benefit from the calming effect that viewing art can provide.

“The complete collection is beautiful and representative of the talent in our state, whether the artist was born here, lives here now or was educated here,” Linton said.

Not only did Kovaleski feel compelled to have her work displayed at the institute, she also was inspired to create an original piece of art reflecting her personal experience with cancer.

“The Cancer Institute is a beautiful building that

makes you feel like you’re being embraced. When I was undergoing chemo elsewhere, it felt like I was going to an oppressive place. This building is the opposite of that. It is full of light and feels uplifting,” she said.

Choosing Your Path

Kovaleski contacted the art committee about the possibility of creating a large watercolor painting based on a smaller piece that inspired her.

“We saw the quality of her work and were happy to let her create a painting especially for our building,” Denham said.

Kovaleski’s watercolor titled “A Step in Time” (pictured at right) hangs in the Women’s Cancer Clinics and features a woman in a hat stepping through a doorway. The

The Bookout family, along with Gov. Mike Beebe and other Arkansas legislators, attended the dedication ceremony.

“The Arkansas Legislature’s ongoing commitment has made it possible for us to provide hope through the power to research to thousands of Arkansans. We are grateful to them and the Bookout family for their commitment to the health of our state,” Emanuel said.

For photos of the Bookout Center dedication ceremony, see Page 24.

View the Cancer Institute’s complete art collection at www.cancer.uams.edu/art.

Winthrop P. Rockefeller Cancer Institute

imagery of a door’s threshold is especially significant to Kovaleski.

“Entering the passageway of cancer makes everything different. The light and dark pathways on the painting represent the journey, some days are good and others are bad. It’s how you treat the light and dark days that matters most,” she said.

The “Transformation” sculpture by Michael Warrick was dedicated in honor of the late Arkansas Sen. Jerry Bookout.

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A POTENTIAL HPV VACCINE FOR THOSE ALREADY INFECTED MAY BECOME A REALITY.

BY NATE HINKEL

Mayumi Nakagawa, M.D., Ph.D., recently received a $3.3 million grant from the National Institutes of Health for her

HPV research.

FOR 50 TO 80 PERCENT of sexually active women who have already acquired an HPV infection, there is no therapeutic vaccine available to alleviate any potentially serious future health risks.

But if Mayumi Nakagawa, M.D., Ph.D., gets her way, such a vaccine is inching closer to one day becoming a reality.

“I think it is possible to do this, and we’re getting much closer to making it happen,” said Nakagawa, associate professor of pathology in the UAMS College of Medicine. “The ultimate goal would be the prevention of cervical cancer in those who are most likely to develop it.”

411 on HPV

HPV (human papillomavirus) is passed through sexual contact. In about 90 percent of its overall cases the virus clears itself from the body naturally.

It’s the remaining 10 percent of those cases where the virus persists that is the focus of Nakagawa’s research. “It’s within that group where the vaccine we’re developing is aimed,” she said.

“Those that have precancerous cervical lesions are at most risk for developing cervical cancer.”

According to the American Cancer Society, about 12,200 new cases of invasive cervical cancer were diagnosed in 2010 and about 4,210 women died from it. Worldwide, it’s the second-most common cancer among women, with more than 470,000 new cases found each year.

Most vaccines are typically administered to healthy individuals to prevent a disease or infection, such as the existing prophylactic HPV vaccine. But now there is a growing trend to use vaccines aimed at alleviating the potential suffering of those already with a disease or infection, such as the one Nakagawa is developing for HPV.

“That’s what makes this so exciting,” Nakagawa said. “I feel that we are very close.”

Years in the Making

Nakagawa was recruited to UAMS in 2004 by Thomas Horn, M.D., a former professor and chair of the UAMS Department of Dermatology, who was looking for an immunologist to help him with Winthrop P. Rockefeller Cancer Institute

research he was conducting regarding common warts caused by HPV.

That initial research found that Candida, which is a naturally occurring yeast in the body, by itself had an anti-HPV effect. Horn and Nakagawa showed there was an effective response to HPV when treated with Candida, though exactly how that happens is still being investigated.

“So it was those initial studies on common warts that led us to Candida, which is a big part of what we’re doing now,” she said. “The vaccine we developed consists of synthetically made peptides of the E6 protein of HPV, since we’ve shown that to be a big factor in women who naturally clear HPV infections.”

Stemming from its previous success, I feel that we Candida will be used are very close.” as a novel adjuvant to the vaccine. An adjuvant is an agent administered with a vaccine to enhance the immune response.

Last fall, Nakagawa received a $3.3 million federal grant from the National Institutes of Health Research Project Grant Program to conduct a phase 1 clinical trial for the HPV therapeutic vaccine she’s developed. Still in the planning stages, a start date has not yet been determined for the clinical trial.

The trial will focus on women with the highgrade lesions that often lead to cervical cancer.

By monitoring those precancerous lesions in women over a period of time, Nakagawa says the effectiveness of the vaccine can be determined.

William Greenfield, M.D., associate professor of obstetrics and gynecology, will be involved in recruiting the subjects, although the recruitment process has not yet begun. A pap smear of about 175 women suspected to have these high-risk lesions should yield about 60 biopsy-confirmed women who will be vaccinated.

“That should tell us just how effective this vaccine will be,” Nakagawa said. “It’s amazing to trace all of this back to one of the reasons I was initially recruited to UAMS. It’s very exciting to think we can have a positive impact on cervical cancer.”

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Medical PIONEERS CLINICAL TRIAL PARTICIPATION PUSHES MEDICINE TO NEW TREATMENTS.

BY JON PARHAM

Research nurse Karen Mack, R.N., works closely with participants in clinical trials at the Cancer Institute, including Harold “Hap” Peterson.

HAROLD “HAP” PETERSON did not hesitate in agreeing to participate in a clinical trial of a drug to treat his cancer.

“I was thankful for the opportunity and happy to do it,” said the retired airline pilot from Hot Springs Village. “I wanted to take advantage of anything they could try.”

Peterson had a lot of experience with physicians and cancer treatments since his 2006 diagnosis of Stage 4 metastatic melanoma.

He was told that he should get his affairs in order and that he probably had three to six months to live.

He began chemotherapy treatments, which were somewhat effective at slowing the cancer for almost two years. During this time, however, tumors popped up in his small intestine, his back and his brain. And he dealt with those, too.

He had surgery to remove 30 inches of his tumor-laden small intestine. He had two successful Gamma Knife procedures at UAMS to zap tumors in his brain with precise, highly focused radiation.

Then his oncologist, Laura Hutchins, M.D., a professor and director of the Division of Hematology/Oncology in the UAMS College of Medicine, told him his current treatment just was not working on the latest tumors and that she’d like to try something different. He did not hesitate to enter a clinical trial of a drug to treat the tumors. Two years later, his tumors have shrunk and he said he has experienced no side effects.

Five years after being told he might have just six months to live, he remains on the trial, with treatments every three months. “I feel absolutely fantastic. I feel like a 24 year old, playing golf and traveling and doing whatever I want,” he said.

‘Medical Pioneers’

Clinical trials, also called clinical studies, are the rigorously controlled tests of a new drug or medical treatment. Not only are the tests designed to determine if a drug is effective, Hutchins said, but often the trials are intended to find out what

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type of patient will benefit most or what dosage is best. The trials may test a new way to detect cancer early or to prevent cancer in people who are at risk.

“Clinical trials are the way we’ve found new treatments,” Hutchins said. “Every standard treatment we use today was once the subject of a clinical trial.”

In her career, Hutchins has been involved in clinical trials that have resulted in experimental treatments becoming standard. A trial of an antibody known as trastuzumab led to a breakthrough in breast cancer treatment, leading to the drug known today as Herceptin®, she said.

A clinical trial is actually the final stage of a long and careful research process where the scientist has examined a new drug or technique and is ready to find how it reacts in a real patient.

There are about 150 clinical trials of different types being conducted at the Cancer Institute.

Some trials are being led by UAMS researchers; in other cases the Cancer Institute is a participant in a multi-center trial.

UAMS clinical trials make the newest treatments available to patients in Arkansas, preventing a drive out of state. In some cases, outof-state patients come to UAMS to participate in a clinical trial not available in their area.

But not every patient is as agreeable to clinical trial participation as Hap Peterson.

Only a fraction of the more than 18 million adults with cancer in the United States participate in clinical trials. The participation rate is even worse in the elderly, low income, and racial or ethnic minorities.

There are many reasons for the lack of participation, Hutchins said, including that a patient may not meet criteria for a clinical trial.

Some are concerned that treatment in the clinical trial will not be as effective as standard treatment.

Others think they will merely be a human “guinea pig.”

“That’s not it at all,” said Karen Mack, R.N., a clinical research nurse in the Cancer Institute.

“Those who participate in clinical trials are medical pioneers. In every treatment, somebody was the first.”

Looking Beyond Cancer’s Limits

insurance coverage for the trial. Health insurance companies do not always cover all costs for care

Part of the thorough nature of a clinical trial in a clinical trial, and how much is covered will starts when a physician thinks a patient might be vary depending on the trial. The National Cancer a good candidate for participation. The physician Institute points to Medicare policy explicitly will usually talk with the patient about the trial covering routine care costs for trials and hopes when discussing treatment options. other insurers will follow suit.

However, if a doctor fails to mention the

Once enrolled in a trial, the patient will get possibility of a clinical trial, patients shouldn’t a visit from a research nurse anytime they come hesitate to ask about trials that might be available for treatment, closely monitoring the participant’s to them, Hutchins said. health. The nurse communicates with the patient’s

The physician will explain the treatment physician about how far along the patient is in the being studied and what will happen during the study and coordinates the diagnostic trial, answering any questions. If tests and scans that document how the patient expresses interest in participation in the trial, then Mack Every standard the treatment is working.

“In some cases, the study will or the institute’s other research treatment we use follow the patient’s condition for the nurse will visit with the patient with more specific information today was once rest of their life, even after the trial about the trial, such as the the subject of a concludes,” Mack said. treatment schedule. clinical trial.”

Mack said one question that Another Piece in the Puzzle often comes up is about use of a

Every three months placebo — an inactive substance or Peterson comes to UAMS for his treatment that looks the same and is administered chemotherapy treatment and a checkup. The the same way as an active drug or treatment being scans, blood work and other tests chart his tested. In studies where there is no standard condition as well as his continued response to the treatment, a placebo is sometimes used to clinical trial drug. compare against a new treatment.

Peterson said he felt informed throughout the

“In trials involving patients who have cancer, trial, from the time Hutchins first broached the placebos are rarely used,” Mack said. But if a topic with him. placebo is being used, the patient will be told of

“I had complete confidence they were doing the possibility during this consent process. the very best they could,” he said.

This process, called informed consent,

He said he would strongly encourage any is intended to provide the patient with all of patient to participate in a trial. “They are always the information they need to make a decision researching what’s next and will keep refining on participation. Patients receive complete treatment based on these studies.” documentation of the procedure as well.

Hutchins said a clinical trial gives researchers

The federal Food and Drug Administration more information for treating cancer, adding has strict guidelines for the consent process, another piece of the puzzle. Even trials that do Mack said, to ensure the patient has complete not lead to the expected result could open up an information about the trial and ensure avenue for future study. patient safety.

“As someone in academic medicine,

“I’m not there to twist arms,” Mack said. “We I want to try new things,” she said. “Instead of don’t do any study process until we have a signed telling a patient we don’t have anything that will consent form.” work, we can say ‘here’s something

Another common question concerns that might help.”

Informed Consent

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Daohong Zhou, M.D., with UAMS Chancellor Dan Rahn, M.D., and College of Pharmacy Dean Stephanie Gardner.

Zhou Honored with Chair c New Urolsotgi Oncologi m Joins Tea

.

Matthew D a Katz , M.D., fellowship- logic trained uropecializing in oncologis t s and robotic c laparoscopi joined U AMS. surger y, has Society of r A two-yea colog y accredited 's Urologic Onrained urologis t, Katz fellowship-training includes new - advanced t in laparoscopic robotic y approaches s ted removal of kidne ic- assi robot

tumors and ladder b d

e t s i ass removal .

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A gift from the Winthrop Rockefeller Foundation will allow a UAMS scientist to advance his research in the area of radiation therapy. Daohong Zhou, M.D., was invested Jan. 18 as the inaugural recipient of the Winthrop Rockefeller Endowed Chair for Leukemia and Lymphoma Research at UAMS.

The chair was established with a gift from the foundation.

It will allow Zhou to further his research, which focuses on making radiation therapy for cancer safer, less toxic and more effective, as well as developing safer, non-toxic medical countermeasures for use in radiological and nuclear

emergencies.

Zhou and his team of researchers joined the

UAMS College of

Pharmacy Department

of Pharmaceutical

Sciences in March 2010.

He serves as professor

and deputy director in the department’s Division of Radiation Health.

Looking Beyond Cancer’s Limits

Day at the Races

A special guest had a supporting role at the Cancer Institute’s Day at the Races March 17 at Oaklawn Park in Hot Springs. Professional jockey turned actor Otto Thorwarth joined board members and guests for the annual luncheon and afternoon of horse racing benefiting the Cancer Institute. A Hot Springs native, Thorwarth played jockey Ron Turcotte in the feature film “Secretariat.”

About 150 people attended the event, which raised more than $11,000 for the Cancer Institute.

Honorary chairs for the event were Betty and Leon Millsap. Hosts were Elaine Gartenberg, Beryl Cumberworth, Betty Millsap and Bernard Cluck.

ADVANCED

LEARNING

About 220 health care professionals gathered March 11-12 at the Cancer Institute for the 14th Annual Rasco Symposium on Colorectal Cancer & GI Malignancies. Issam Makhoul, M.D., associate professor of medicine in the UAMS College of Medicine Division of Hematology and Oncology, was course director.

The Rasco Symposium brings together experts from UAMS and other institutions to offer the most up-to-date information in epidemiology and risk assessment, preventive strategies for colorectal cancer, and management of patients of who have advanced disease from both surgical and medical perspectives.

Day at the Races’ spe cial guest Otto Thorwa rth (center), jockey and actor, is join ed by Kent Westbrook, M.D., and his wife, Jonnie.

Nano-Discoveries

A UAMS researcher and his team have discovered that by manipulating and fine-tuning the specific color of gold nanoparticles, cancer diagnosis can become more specific, and therapy more efficient.

The discovery by Vladimir Zharov, Ph.D., director of the Phillips Classic Laser and Nanomedicine Laboratory at UAMS, and his team is published in the March 2011 issue of Nature Photonics, a journal featuring research in all areas of light generation, manipulation and detection.

The finding builds on Zharov’s previous discoveries involving the use of cancer-detecting

Winthrop P. Rockefeller Cancer Institute

gold and magnetic nanoparticles, including the ability to inject them into the bloodstream to target, capture and eventually kill circulating tumor cells with the use of specialized laser-activated nanobubbles surrounding nanoparticles.

Recently, Zharov and a member of his team, Ekaterina Galanzha, M.D., Ph.D., along with Alex Biris, Ph.D., of the University of Arkansas at Little Rock, received three joint nanomedicine-related grants from the U.S. Department of Defense to explore similar approaches for the diagnosis and treatment of breast cancer.

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One Keystroke Coping

at a Time

PATIENTS, FAMILIES AND STRANGERS EXPERIENCING CANCER FIND HEALING IN CYBERSPACE. BY NATE HINKEL

IT’S A NATURAL REACTION for some, when up against a mountain of distress, to crawl into a cave and deal with a setback privately.

But for many, especially cancer patients, sharing the deepest of emotions during the height of adversity is a vital part of the healing process. And with the high-tech gadgets available at our fingertips in this day and age, people are sharing as openly and as easily as ever before.

“There was a moment when I realized that, ‘Hey, I’m a writer, so who better to tell my story than me, right?’” said Stacy Sells, a patient at the Winthrop P. Rockefeller Cancer Institute and longtime public relations professional at one of the state’s largest advertising firms. “I wanted to be the author of my own story and I wanted to tell it in a way that showed anybody who happened to come across it what I was 16

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going through, warts and all.”

Sells, an inflammatory breast cancer survivor, keeps a web log, an Internet-based journal she has maintained from diagnosis to present day, which finds her free of cancer and still blogging.

While Sells comes from a writing background and the decision to blog about her fight against cancer was quite natural, blogging about his wife, Deb’s, battle with multiple myeloma has given the author within Vern Darley a chance to blossom.

“My natural disposition is to keep things quite close to the vest,” said Darley, an operations manager with a publishing firm in Peachtree City, Ga. “But you know what? If there’s ever a time to confront emotion and find a way to communicate openly, watching the love of your life get taken to the brink of death is it.” u Looking Beyond Cancer’s Limits

Vern Darley shares his wife, Deb’s, experience with multiple myeloma on a blog titled “It’s All About the Blood.”

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Off and Running

Up, Up and Away

Thanks friends! And thanks for tolerating a renewed desire on my part to live and speak truth openly and with transparency. I suspect it makes some of us, including me, at times queasy and may even seem overdone. Perhaps it is my way of coping with an area that many men have trouble with: the emotional side of life. Ladies, can I hear a hearty amen? — Vern Darley’s “It’s All About the Blood” blog

Following his wife’s diagnosis, Darley’s decision to begin blogging was an easy one.

“People can’t handle hospitals, funerals and bad news all that comfortably,” he said. “Deb was a high school math teacher, we are actively involved in church and we have relatives and family all over the world. Rather than answer questions and phone calls all day, we decided we were going to be as open and honest as possible and give it to people in real time.”

Darley works five minutes from the couple’s home, so he’s able to maintain his dedication to being Deb’s full-time caregiver. He built a sunroom addition to their home, which serves as “myeloma headquarters,” he joked, and is where a lot of his inspiration is found.

This blog was created to keep friends and family up to date on my battle with Inflammatory Breast Cancer. Diagnosed in February 2010, I now join the ranks of 12 million Americans who are also cancer survivors. Maybe my story will help others know they are not alone. There is hope. — Stacy Sells’

This cancer thing is evil. So many around us suffer from it. Families are greatly affected and changed by it. …We are fearfully and wonderfully made. Our bodies are so complex. Only our maker and designer's touch can heal and whether or not he uses medicine or a direct miracle, or chooses not to heal at all is his prerogative. — Vern Darley

Darley solo-piloted his first airplane when he was 16 years old. A retired U.S. Air Force and commercial pilot, he was putting the finishing touches on “Gracie,” a four-seat singleengine plane he custom built, at the time of Deb’s diagnosis. The couple flies the plane from Georgia to the North Little Rock Municipal Airport for Deb’s treatment at the UAMS Myeloma Institute for Research and Therapy.

“During all the time we’d spend in Arkansas for treatments, I’d be writing and taking pictures and blogging throughout it all,” said Darley, who uses a laptop, an iPad or even his iPhone for updates. “She was not fully aware of all of the things I was documenting. So now that she’s doing well, it’s been fun for her to go back through and read it … almost like a journal of her experience.”

Without a doubt, all of this has been unfamiliar territory for me — a place that has been a bit scary at times. Some days I even sat on my rock and cried for help.

But … others have taught me that it’s okay to admit the presence of fear and learn how to confront and wrestle it. — Stacy Sells

Though you will find some deeply emotional and profound accounts on Sells’ blog, for the most part she’s tried to find ways to uncover the positives and the quirky amongst the tribulations.

That’s not always easy to do when you’ve been through four months of chemotherapy, three surgeries and five weeks of radiation treatment.

“If I could find some humor or even something ridiculous to laugh about, I could maintain a constructive mindset about the disease and the treatment, maybe even help another with

“Never Lose Spirit” blog

The day Sells was diagnosed with inflammatory breast cancer, a well-intentioned family member let a personal e-mail fly that included details surrounding the sensitive situation. As well connected to the community as Sells is, the e-mail quickly went viral and the cat was uncontrollably out of the bag.

“The following days my telephone almost blew up from well-meaning friends, family members and co-workers,” Sells said. “That’s all fine and good, but I quickly realized I needed a better way to communicate through this. It was out there, so let’s just put it all out there and try to be honest, sometimes humorous, and also share some tough cancer moments too. It helped keep friends and loved ones in the loop, and helped me to manage my time on the phone too.”

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Looking Beyond Cancer’s Limits

cancer get through a tough day,” she said.

“So much about this terrible disease is your attitude, and I chose to be open about it and try to find gems of hope hidden in my experiences.”

Regardless of their creative styles or reasons for blogging, both have found the comfort and healing power of sharing openly with family, friends … and complete strangers.

Stacy Sells’ “Never Lose Spirit” blog can be found at www.neverlosespirit. blogspot.com Vern Darley’s “It’s All About the Blood” blog can be found at www.debdarley.blogspot.com

Winthrop P. Rockefeller Cancer Institute

Somewhere Out There, Someone’s Reading

Putting the most personal of information during a fight for life out into the public is one thing, wondering who’s actually taking it all in is quite another.

One benefit of a blog is the ability to track comments and webpage views. In Vern Darley’s case, he averages nearly 3,300 visitors a month on his blog chronicling his wife’s experience with multiple myeloma. In part, he attributes this to printed business cards with the blog’s address he passed out to well wishers.

Stacy Sells says she averages about 440 hits a day on the blog she writes about her diagnosis with inflammatory breast cancer. A national website that supports women bloggers named her “Never Lose Spirit” blog one of the top 10 cancer blogs in the country.

But the success of their blogs isn’t what drives Sells or Darley. Both say the support they receive from friends and family is the key. But thanks to cyberspace, there’s also the great unknown factor of touching lives they never imagined.

Sells said she was recently at a check-up appointment at the Cancer Institute when a stranger approached her and said, “Your name’s Stacy, right?”

“Turns out she was diagnosed four months after I was and someone referred her to the blog,” Sells said. “She said she used it as her cheat sheet and thanked me for it. That makes it all worth it right there.”

Darley said he’s also been contacted, internationally even, about some of the posts on his blog.

“Someone told me they had no idea how best to handle the scheduling and timing of medication and that he used the system I previously blogged about to help him get organized,” Darley said. “You never know who’s out there reading, and that’s definitely a motivating factor to keep going.” seek

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The Right Choice

WHEN DIAGNOSED WITH A RARE CANCER, LEA ELLEN WITT FOUND THE RESEARCH-DRIVEN CARE SHE NEEDED CLOSE TO HOME. BY DAVID ROBINSON

The cancer diagnosis came from out of nowhere for Lea Ellen Witt and her husband, James Lee, of Dardanelle.

Lea Ellen had battled the symptoms of uterine fibroids (noncancerous tumors of the uterus) for a couple of years. At the time she was under the care of a gynecologist in the Washington, D.C. area, where James Lee, the former Federal Emergency Management Agency (FEMA) director, has an emergency management consulting business.

Following her doctor’s recommendation in July 2009, Lea Ellen decided to have a hysterectomy, but she chose to have the surgery closer to home. Prior to surgery, her new 20

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gynecologist in Little Rock performed a biopsy of her fibroid tumors, which came back negative for cancer. It wasn’t until she had the hysterectomy that the cancer was discovered. She had stage 3 leiomyosarcoma, a rare cancer that begins in the smooth muscle cells of the uterine wall, and it had spread to other female organs.

“The stage of the cancer was a shock; I was devastated,” Lea Ellen said. “I guess it was hidden in among the fibroids — sneaky little things.”

The cancer is highly aggressive, and historically the survival rate beyond five years among women with leiomyosarcoma is only 10 to 15 percent.

Looking Beyond Cancer’s Limits

profile

Before committing her treatment to UAMS, the Witts sought the second opinion of doctors at Memorial Sloan-Kettering Cancer Center in New York City, which is well known for its uterine cancer research and treatment.

The treatment plan proposed for Lea Ellen in New York turned out to be the same as that already planned at the Cancer Institute.

“I was confident with the care I would receive at UAMS, and it was much closer to home,” she said.

Lea Ellen’s treatment regimen was based on the very latest research, which included results of a promising nationwide clinical study in which a third, relatively new drug is added to the chemotherapy regimen.

“Mrs. Witt wasn’t part of that study, but we gave her the same drugs based on its promising results,” Stone said.

Lea Ellen said she approached her treatments with a “one-day-at-a-time” attitude. “I didn’t really focus on what might be or the ‘what if’ of my life,” she said, “because you can’t look back.”

Lea Ellen is now cancer free and glad she chose UAMS. She said she couldn’t imagine receiving better care anywhere else — from doctors or nurses.

“Dr. Westbrook and Dr. Stone did a wonderful job of keeping me informed; they made me comfortable,” she said. “It was the combination of UAMS and its incredible team of professionals, together with my unwavering faith and the powerful prayer support of loving family and friends that helped me through.”

Before her cancer,

The Witts followed the Lea Ellen said she was advice of Lea Ellen’s longtime aware that UAMS had a rheumatologist, Stephen Holt, Lea Ellen’s treatment M.D., and contacted UAMS, reputation, but her regimen was based on good where cancer surgeon and experience makes her want co-founder of the Winthrop P. the very latest research. to help spread the word.

Rockefeller Cancer Institute “The people in Kent Westbrook, M.D., led her Arkansas need to realize cancer team. Pamela JB Stone, M.D., a fellowshipwhat we have in Little Rock,” she said. “They don’t trained gynecologic-oncologist, oversaw Lea Ellen’s need to go to other places.

The doctors at UAMS treatment. have all the knowledge and access to all of the

“I got my diagnosis on a Friday, and Dr. studies that have been performed either there Westbrook was very good to call on Saturday to or at other large cancer centers. I just can’t say say that he had gotten my team together,” Lea enough about UAMS.” Ellen said.

Winthrop P. Rockefeller Cancer Institute

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FAST BREAK

STRONG REBOUND A SPORTS INJURY HELPED DETERMINE DONALD BODENNER’S CAREER PATH.

BY DAVID ROBINSON

PLAYING BASKETBALL at his Duluth,

Working with the head and neck cancer team Minn., high school 38 years ago, Donald Bodenner led by James Y. Suen, M.D., and UAMS radiologists was undercut by another player and fell against a and pathologists, Bodenner established the state’s wall, breaking his wrist. only one-stop Thyroid Center. It’s exciting, he

What followed led the future thyroid said, considering that a typical thyroid cancer specialist on a path toward a patient would otherwise have to prestigious career in medical make six or seven clinic visits for scholarship and patient care.

Despite the trauma, primary care, imaging, biopsy and

Bodenner, 55, still has before surgery.

Bodenner was intrigued consultation only limited motion in his “A lot of patients in Arkansas by his medical care. are coming from 100 miles right wrist. Doctors didn’t see the break resulting from his away, so to save them six or injury on X-rays for more than seven trips is a great benefit to a year and a half. When the mistake was realized, them,” said Bodenner, who serves as director of he underwent a series of surgeries and bone grafts. the Thyroid Center, chief of endocrine oncology He was then in a cast for another 18 months, and an associate professor in the Department of forcing the right-hander to become ambidextrous.

Geriatrics in the UAMS College of Medicine.

Despite the trauma, Bodenner was intrigued

He also is excited about the latest treatments by his medical care. of thyroid cancer that are available in Arkansas

“On the one hand I thought it was a really only as part of clinical trials at UAMS. stimulating field, and on the other hand I thought

Fortunately for the vast majority of thyroid I could become an even better doctor than those cancer patients, the standard treatment usually who treated me,” he said. stops the cancer in its tracks. The treatment

Bodenner graduated from Harvard University involves removing the cancerous tissue and using in Boston and received his medical degree and radioactive iodine, which acts like a “smart bomb,” a doctorate in chemistry at the University of Bodenner said, to attack the cancerous thyroid.

Minnesota (UM) in Minneapolis. He became

But for patients whose thyroid cancer has chief resident of internal medicine at UM, and spread, there is hope, he said. New drugs emerged it was during his third year of residency that he about two years ago, and in Arkansas they are developed a passion for endocrinology. available only for patients enrolled in clinical trials

“The thyroid is a complicated organ,” he said. at UAMS. “It can be overactive; it can be underactive; it can

The drugs interrupt the processes within cells have nodules; the parathyroids can be involved. that essentially turn on cancer genes. They are And trying to sort all of that out is a lot of fun.” remarkably well tolerated; patients don’t lose their

After his residency, Bodenner completed hair, don’t get sick, and the drugs are taken orally. an endocrinology fellowship at the National

“The results look very promising,” Bodenner Institutes of Health (NIH) and stayed an extra said. “It’s a very exciting time in the treatment of year as a senior staff fellow. He then studied thyroid cancer.” thyroid diseases at the University of Rochester in New York.

Along the way he married Ann Riggs, M.D., a Donald Bodenner, M.D., Ph.D., has been geriatrician, and started a family. They both joined recognized among his peers and the public UAMS 13 years ago, and their two daughters are with awards for his teaching, research and now attending Arkansas colleges. patient care, and he has contributed to

When he arrived in Little Rock, his goal numerous publications, including the was to create a clinic where, in a single day, an American Journal of Medicine. interdisciplinary team of physicians and surgeons could diagnose and evaluate patients who might need surgery for thyroid tumors.

Winthrop P. Rockefeller Cancer Institute

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courtesy of Arkansas Governor’s Office

Bookout Center Dedication

Loretta Bookout, widow of Sen. Jerry Bookout, watches the ceremony with Gov. Mike Beebe

Who: Family members of

the late Arkansas Sen. Jerry Bookout; Gov. Mike Beebe; former Arkansas Sen. Bob Johnson; and UAMS officials

What: Dedication of the

Bookout Translational Research Center

When: March 25, 2011 Where: Winthrop P.

Rockefeller Cancer Institute

JohnPaul Jones

Why: Bookout, a longtime

The family of Sen. Jerry Bookout stands with the sculpture dedicated in his honor.

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Chadley Uekman

courtesy of Arkansas Governor’s Office

The “Transformation” sculpture is unveiled by Peter Emanuel, M.D.; Gov. Mike Beebe; artist Michael Warrick; and former Sen. Bob Johnson.

Arkansas legislator and health care proponent, was honored with a sculpture dedicated to his memory. Titled “Transformation,” the sculpture is located in the Bookout Translational Research Center on the fourth floor of the Cancer Institute. Bookout was treated at UAMS for lymphoma and died in 2006.

Sen. Paul Bookout participates in a Seed of Hope token toss in memory of his father.

Looking Beyond Cancer’s Limits

spotlight

Cancer Screening Outreach Day Who: Members of the Cancer

Institute Envoys and St. Mark’s Baptist Church

What: For the second year, the

When: April 9, 2011 Where: Little Rock

Chadley Uekman

Envoys advocacy group joined with St. Mark’s to distribute cancer prevention and screening information to households in Little Rock.

Cancer Institute Envoys, members of St. Mark Baptist Church and members of the Arkansas Baptist College football team

neighborhoods located from 12th Street to 28th Street

Why: The second annual

Chadley Uekman

outreach day was designed to make community members aware of the importance of cancer screenings.

St. Mark’s outreach pastor Glenn E. Hersey, Sheila Jones and Envoys president Hatim Smouni

Winthrop P. Rockefeller Cancer Institute

Chadley Uekman

Chadley Uekman

Rodney and Jocelyn Mathenia with Jocelyn, Roxana, Anthony and Mario Hernandez

Hatim Smouni, Cory Leigh Taylor, Cara Tharp and Chance Tharp

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Cooks Tour Patrons’ Cocktail Buffet Who: Distinguished Honoree

Award recipient Peter Emanuel, M.D.; hosts Tracy and Pete Yuan and Lana and Dan Rahn, M.D.; event chairs Courtney Tulbert and Amelia Lewis; and Cancer Institute supporters. Glazer’s Distributors of Arkansas provided beverages.

What: The Patrons’ Cocktail Distinguished Honoree Peter Emanuel, M.D., with his wife, Carla (far right), and children Abby, Jenny and Ben

Buffet kicked off the 20th annual Cooks Tour weekend, an annual event benefiting cancer patients in Arkansas.

When: April 15, 2011 Where: The home of Tracy and Pete Yuan

Why: Cooks Tour is the Cancer

Hosts Tracy Yuan; Pete Yuan; UAMS Chancellor Dan Rahn, M.D.; and Lana Rahn

Jonnie Westbrook and Bonnie Fincher

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Institute Auxiliary’s longestrunning fundraiser and supports cancer research, patient care and education. It includes two events: the Patrons’ Cocktail Buffet and a tour of homes in Little Rock’s Chenal Valley.

Tiffany Robinson

Cooks Tour chair Courtney Tulbert, co-chair Amelia Lewis and Cancer Institute Auxiliary president Maria Furcron Looking Beyond Cancer’s Limits

spotlight

Kathi Jones and Jan Burford

Susie Roberts and Phyllis Stewart

Issam Makhoul, M.D.; Sohelia Korourian, M.D.; and Reza Hakkak, Ph.D.

Mauricio Moreno, M.D., and Patricia Moreno

Cloud Keyes, Stuart Cobb, Kenan Keyes and Nancy Keyes

Winthrop P. Rockefeller Cancer Institute

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NONPROFIT ORGANIZATION U.S. POSTAGE

WINTHROP P. ROCKEFELLER CANCER INSTITUTE

PAID

LITTLE ROCK, AR PERMIT NO. 1973

4301 W. Markham St., #623 Little Rock, AR 72205

Four Corners

BOARD MEMBERS BRING EXPERTISE FROM ACROSS ARKANSAS AND BEYOND. Pat Cooper

Bella Vista Cancer Institute Foundation board member. past president

Sean Rommel

Texarkana Co-founder, Wyly-Rommel Law Firm Cancer Institute Foundation board member

“

My grandmother is a breast cancer survivor who was treated at the Cancer Institute. Her triumph really puts into perspective what the great doctors, researchers, staff and volunteers are trying to do: create hope and make survival more of a reality.”

“

In 1999, [then-chancellor] Dr. Harry Ward asked if I would agree to serve on the board, telling me of the hopes for the continued growth of the Cancer Institute. So many men and women have made huge contributions to build what is now the Cancer Institute into a source of pride for Arkansas. It was such a joy to be a part of the early days.”