Cancer Care magazine, Summer 2019

care CANCER

for anyone touched by cancer

Blue light helps detect bladder cancer Scientists seek to outsmart cancer A psychiatrist shares 12 coping strategies Help for a sore mouth

Childhood patient, adult survivor Brought to you by the

Summer 2019

yOUr g Ui dE

Are you up to date on cancer screenings?

E

arly detection is one of the best defenses against the impact of cancer. Your personal risk for various cancers determines what screenings are recommended.

Bring to the attention of your n physician any new lumps or growths,

All ages

unusual bleeding, changes in moles or skin, unexpected weight loss, cough or change in bowel or bladder habits.

Human papillomavirus (HPV) vaccine n series protects both boys and girls

Starting at age 11

against cervical, vaginal, vulvar, anal, penile and throat cancers.

Colon cancer screenings for women Colon cancer screening for women and n and n men men at higher-than-average risk. continues through at least age 75, after which a medical professional Breast cancer screenings for women at can help decide whether screening is n higher-than-average risk.* appropriate.

Cervical cancer testing for women, Breast cancer screening mammograms n including an HPV test every five years n for women continue through at least or a Pap test every three years.**

Age 40-49

Prostate cancer testing for men at n higher-than-average risk.

Colon cancer screening for women n and men. A medical professional can

Age 50-plus

Over age 65

age 75. Those at higher-than-average risk may need additional tests.

Cervical cancer testing is no longer n needed if regular screenings have

provided normal results. But women with a history of serious cervical pre-cancer should continue testing for 20 years after that diagnosis.

n help choose the appropriate test and frequency.

Prostate cancer testing for men who Breast cancer screenings for women at n expect to live at least 10 more years, n higher-than-average risk.* Breast cancer screening mammograms and whose doctors explain the risks n for women, done annually or every two Cervical cancer testing for women, and benefits of screening. years for those at average risk. Those n starting at age 21 with a Pap test every at higher-than-average risk may need Lung cancer screenings for women three years.** additional tests.* n and men, up to age 75, who are heavy smokers or who quit smoking within Cervical cancer testing for women, Age 30-39 the last 15 years. n including an HPV test every five Breast cancer screenings for women at years or a Pap test every three years.** n higher-than-average risk.* Prostate cancer testing for men, For help scheduling an Cervical cancer testing for women, n depending on how they and their n including an HPV test every five appointment for screenings for doctors feel about the uncertainties, Age 20-29

HPV vaccine series, if not already completed.

CC

years or a Pap test every three years.**

* Report any breast changes to your health care provider.

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**Testing may not be required after hysterectomy if removal of uterus and cervix was done for reasons unrelated to cervical cancer.

C A N C E R C A R E l summer 2019 l upstate.edu/cancer

risks and potential benefits of screening.

Lung cancer screening for women and n men, starting at age 55, who are heavy smokers or who quit smoking within the last 15 years.

breast, cervical, colorectal, lung or prostate cancer, or for help assessing your individual risk, contact the Upstate Cancer Center at 315-464-HOPE (4673).

care CANCER

The Upstate Cancer Center is part of Upstate Medical University in Syracuse, N.Y., one of 64 institutions that make up the State University of New York, the largest comprehensive university system in the United States.

Upstate Medical University is an academic medical center with four colleges, a robust biomedical research enterprise and an extensive clinical health care system that includes Upstate University Hospital’s downtown and Community campuses, the Upstate Golisano Children’s Hospital and many outpatient facilities throughout Central New York — in addition to the Upstate Cancer Center. It is located at 750 E. Adams St., Syracuse, NY 13210.

Summer 2019

in tHiS iSSUE CAring FOr PAtiEntS

Living witH CAnCEr

He lost a leg to cancer; now he climbs mountains, skis and runs obstacle courses

page 4

What survivorship means

page 7

What you need to know about kidney cancer

page 18

Help for a sore mouth

page 19

On tHE COvEr

Dan Kosick: athlete, social worker, parent and childhood cancer survivor, during a regular workout.

See story, page 4.

Bladder tumors show up better in blue light

page 10

A psychiatrist shares his 12 coping strategies page 20

PHOTO BY ROBERT MESCAVAGE

A 15-year survivor of stage IV cancer page 11 CAnCEr CArE

EXECUTIVE EDITOR Leah Caldwell Assistant Vice President, Marketing & University Communications

Meet DIANA

MAking A diFFErEnCE

back cover

MANAGING EDITOR WRITERS

Amber Smith 315-464-4822 or smithamb@upstate.edu

DESIGNER

Jim Howe Susan Keeter Emily Kulkus Amber Smith

SHAring ExPErtiSE

Susan Keeter

UPStAtE CAnCEr CEntEr DIRECTOR (INTERIM)

Jeffrey Bogart, MD

DEPUTY DIRECTOR (INTERIM) Gennady Bratslavsky, MD ASSOCIATE DIRECTOR FOR CLINICAL RESEARCH Stephen Graziano, MD

ASSOCIATE DIRECTOR FOR BASIC AND TRANSLATIONAL RESEARCH Leszek Kotula, MD, PhD

ASSOCIATE DIRECTOR FOR COMMUNITY OUTREACH Leslie J. Kohman, MD ASSOCIATE ADMINISTRATOR Richard J. Kilburg, MBA The Upstate Cancer Center provides the quarterly magazine Cancer Care for anyone touched by cancer. Send subscription requests and suggestions to magazine@upstate.edu and request additional copies by calling 315-4644836. Cancer Care offices are located at 250 Harrison St., Syracuse, NY 13202.

5 research projects aim to outsmart breast cancer

page 12

We are your neighbors

page 22

Call 315-464-HOPE (4673) for referrals to the Upstate Cancer Center. upstate.edu/cancer l summer 2019 l C A N C E R C A R E

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Everyday hero W

Childhood cancer survivor Dan Kosick climbs mountains, skis, runs obstacle courses

BY JIM HOWE

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CAri ng FOr PAti EntS

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an Kosick leads an active life. The Endicott resident is a social worker at a local middle school,

Facing page: Dan Kosick at Synergy Athletics fitness center, where he trains and works out.

a longtime youth lacrosse coach and a fitness

enthusiast who typically swims three days a week, runs three days a week and fits in an obstacle course and strength training, often working out both before and after work.

Concerning his rigorous routine, he says, “I feel it’s a part of who I am.”

He might include additional training for events like half-marathons or a climb up a volcano in the Andes, all while keeping an infectiously positive attitude.

He accomplishes this, as well as adaptive skiing and mountain climbing, after having his right leg amputated above the knee at the age 15 due to a rare form of cancer.

Now 42, with a prosthetic leg for everyday use and another for running, he recalls that he often noticed something felt funny in one leg when he was a boy.

“I remember falling off my bike and getting a zinging sensation up my leg, like an extra funny bone,” he said. When he was a young teen, the increasing pain led to tests that found a hard-to-diagnose tumor on a nerve in his right leg.

Called a triton tumor, it appeared benign at first, but a year later it had become increasingly painful and partially cancerous. Doctors at Memorial Sloan Kettering Cancer Center in New York City recommended his leg be amputated above the knee and that he undergo six months of chemotherapy to prevent the cancer from spreading.

He was 15 when his leg was amputated. His chemo was coordinated through Upstate.

“The day I had my amputation, I remember getting wheeled away and thinking, ‘This is it. I’m going to lose my leg,’” he said. At that time, he adds, his chief concerns were whether he would be able to play sports, get a girlfriend and drive a car afterward. He was able to do all three, and his high-school girlfriend is now his wife, with whom he has two daughters.

getting back in the game Kosick, who had always enjoyed playing sports, decided he would get back into sports after surgery. His parents supported his efforts and never showed any negativity, he said. “They always said, ‘Go ahead and try.’ As a father now, I can’t imagine going through that.”

“Originally, I went back to swimming, because I knew it was a great way to get back in shape. We had a small swim team, and I knew those guys. But my abilities started to come out, and I realized I had the potential to be an athlete again.”

He had played lacrosse as a goalie before the amputation, which was the best position to return to afterward, since he would not have to run around the field as much. His high school team was ranked at the state level in lacrosse in his senior year. He also took up adaptive skiing at Greek Peak Mountain Resort in Cortland County and planned to make the U.S. Paralympic ski team for the 2002 games in Salt Lake City.

This is the prosthetic Kosick uses for running.

PHOTOS BY ROBERT MESCAVAGE

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Kosick speaks with nurse Christopher White, part of the Survivor Wellness Program team, during an annual visit to the Upstate Cancer Center.

PHOTO BY DEBBIE REXINE

Everyday hero

continued from page 5

“I did it sooner and competed in 1998 in Nagano, Japan,” he said.

He repeated his performance in 2002. The International Paralympic Games, for athletes with a range of disabilities, are held in the Olympic Games venues right after each Olympics.

Last year, he climbed Mount Cotopaxi, a volcano in Ecuador, with a group of 10 amputees in a trek that included crossing a glacier with an ice ax, leaping over crevasses and reaching the nearly 20,000-foot summit in time to watch the sunrise.

“It was scarier coming down,” he said, noting the climb included fully abled guides and raised money for the Range of Motion Project, a nonprofit group dedicated to providing artificial limbs and braces for those without access to these devices.

He is featured in one of the dramatic “I Train So I Can” videos for the Merrell footwear company that shows him running, working out and talking about his goals. He has also taken part in more than 25 Tough Mudders and other militarystyle obstacle-course endurance events.

dealing with an artificial leg “With a prosthetic leg, you have to learn to be comfortable with being uncomfortable,” Kosick notes. In his case, this includes having a sore tail bone and chafed skin that toughens over time, from where the artificial leg meets his body.

This is the prosthetic Kosick wears for everyday use.

PHOTO BY ROBERT MESCAVAGE

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He takes the leg off for showering, sleeping, swimming and skiing.

He skis with outriggers, a device that looks like a ski pole with a mini-ski at the end.

Continued on page 7

CAring FOr PAtiEntS

Everyday hero continued from page 6

A lifelong relationship Monitoring and checkups go on for a lifetime

BY JIM HOWE

One of his physical therapists, also an amputee, helped to connect him with a maker of prosthetic legs who specializes in limbs for athletes. So, when he runs, he uses a high-tech prosthetic leg, which is light and has a shock-absorbing design and a bit of a bounce to it. His everyday leg features a microprocessor that runs on a lithium battery and can read the force he is exerting, then adjust itself as needed.

A cancer survivor role model As for his long-ago cancer, he sometimes wonders whether it might come back, or create a new health problem, especially when his annual trip for a survivorship checkup looms, but so far, so good.

He has had various injuries related to his heavy-duty physical activities, including a broken arm and back pain.

Some people say to him, “Why don’t you stop?”

“I know I’m healthier, even with all these lingering things,” he replies.

“If at my age I don’t use it, I lose it.”

With his exercise routine, positive attitude and inspirational talks to support groups in the Binghamton area, he is often asked whether he feels like a role model to others.

“I hear that a lot, and it’s taken a while to embrace that, but I have, and I like to respond that it motivates me knowing that I’m inspiring to others,” he said.

“A lot of people cut themselves short, and I think if other people were in my shoes, especially at 15, they would continue on and do the things that they love to do and not just quit. But you don’t know it until you’re there. I don’t think I’m superhuman in any way, but it’s nice to hear.” CC

Survivors of childhood cancer have access to the Upstate Survivor Wellness Program team, which will track their health for the rest of their lives. Team members, seated from left, are Jody Sima, MD, program director; Tanesha Keene, scheduler; and nurse practitioner Brooke Fraser. Standing from left are nurse Robin Monteleone, program manager; Melanie Comito, MD, chief of pediatric hematology/oncology; and clinical social worker Stephanie Barry.

PHOTO BY ROBERT MESCAVAGE

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diagnosis of cancer can focus the patient’s attention on short-term concerns, such as getting through a round of tests and treatment while

coping with daily life.

It isn’t until much later that patients enter into a long-term stage of cancer care: survivorship.

Survivorship involves what can be a lifelong relationship between people who get cancer and the specialists who will monitor their health and progress.

“There are a lot of definitions of survivors. We say someone is a survivor from the moment of diagnosis, no matter how long you survive,” says Jody Sima, MD, the pediatric oncologist, or childhood cancer specialist, who directs the Survivor Wellness Program at the Upstate Cancer Center. In years past, childhood cancer survivors were monitored under the KNOT program, which stood for Kids No longer On Treatment.

Sima sees more than 200 cancer survivors annually, in addition to her regular work dealing with young patients currently getting treatment.

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A lifelong relationship Survivors typically get a physical and blood tests, in addition to a talk with Sima on how they are doing. Further tests might be ordered for patients who need long-term monitoring regarding the possible effects of certain drugs or radiation. Sima will send the results to the patient’s primary doctor and help the patients to understand their particular health issues and to take possession of their care as they move from parent supervision into adulthood.

Patients are encouraged to call with questions or concerns, and Robin Monteleone, a nurse who is program

continued from page 7

coordinator for survivorship, will see that they get the information they need.

Survivorship involves a lot of “amped-up primary care,” Sima says.

Her biggest intervention in most cases is a push to get regular exercise, which is linked to better outcomes.

Some past treatments for childhood cancer were harsh and can cause health problems later in life. Those patients might be monitored for things like fertility, blood pressure or heart problems. Different generations of survivors are watched for conditions related to treatments that were current when they

were children. “It might take years to see long-term effects,” Sima says.

Because survivorship includes adults, Sima will be dealing with issues that don’t usually crop up with her pediatric patients, such as sexuality.

She has undergone training in survivorship and regularly deals with adults who had cancer as children. Survivors who first get cancer in adulthood are generally monitored by the providers of adult cancer care.

“The goal is to help them live their lives, to know where they are, and to be a resource that knows the patient and the treatments,” she says. CC

‘Hope for all survivors’ The Upstate Cancer Center’s Jody Sima, MD, who oversees survivors of childhood cancer, describes survivorship as a journey, with a wide range of how people experience the disease, its treatment and its aftermath. She offers these thoughts on surviving cancer:

l “Some of my survivors grow despite it. Some grow because of it. And others really suffer. It depends on physical functioning, or if there are long-term effects like chronic pain. It helps to have a job or to do volunteer work or other things that are meaningful in the world.”

l “In survivorship, a lot of it is dealing with the bad effects of treatment, what can go wrong, so sometimes it’s easy to lose sight of what can go right, and it’s nice to have an opportunity to celebrate the good.”

l (Regarding her patient Dan Kosick, featured in this issue) “It was a very hard experience to go through as a young teen, a lot to bounce back from. He’s such a lovely guy in a bright spot.

His whole life is about giving back: social worker, coach, on the board of Make-A-Wish … it’s what you hope for all your survivors.”

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Jody Sima, MD, director of the Upstate survivor wellness program.

PHOTO BY ROBERT MESCAVAGE

EXPERTS FOR KIDS

CARING FOR KIDS IS AT THE HEART OF WHAT WE DO BEST. STEVEN BLATT, MD, DIRECTOR OF THE UPSTATE PEDIATRIC AND ADOLESCENT CENTER, TEACHES TWO PATIENTS HOW TO GET A BETTER LISTEN.

Upstate Golisano Children’s Hospital opened in 2009, with the mission to provide safe, effective, innovative and familycentered care for children in the Central New York region. Today we serve children and families across 17 counties and treat more than 100,000 patients per year.

As the region’s only Level 1 trauma and burn center, Upstate offers a complete range of health care services for children from birth to 19 years of age. Our commitment to providing quality care and exceptional patient and family experience is evident in our culture and in the smiles of our patients.

Our doctors, nurses, child life experts and other staff are proud to care for your family and will continue to do so for many more birthdays to come.

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Shining a (blue) light on bladder cancer

BY AMBER SMITH

Joseph Jacob, MD, demonstrates Blue Light Cystoscopy. Bladder cancer is the fourth most common cancer in American men, but it’s less common in women. The most common symptom is blood in the urine, which is never normal.

PHOTO BY SUSAN KAHN

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ladder cancers typically appear in multiple spots

in the bladder, and they tend to recur.

So, patients undergo repeated cystoscopies, procedures in which doctors peer into their bladders with cameras in search of cancerous cells.

“It’s a new technology that solves a pretty big problem that we’ve had for years,” he explains.

Jacob says Blue Light Cystoscopy can catch aggressive cancers before they invade the muscle of the bladder. It can also catch small cancers, reducing the recurrence rate and helping patients avoid repeated surgical procedures. CC

He injects a medication into the bladder before the cystoscopy; it’s a contrast solution that is taken up by rapidly growing cells, such as bladder cancer cells.

Jacob examines the bladder with regular white light. Then he turns on the blue

to reach Upstate’s department of urology, visit upstate.edu/ urology or call 315-464-1500.

A new tool, available at Upstate, is helping to locate cancerous cells that previously may have gone unnoticed, says Upstate urologist Joseph Jacob, MD.

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light. Subtle cancer cells are suddenly revealed as bright pink targets. “It picks up these cancers that we weren’t picking up before.”

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She’s beating the odds anks to her ‘tenderhearted’ oncologist

BY SUSAN KEETER

Stephen Graziano, MD, with his patient Kathi Tamer at the 25th anniversary celebration of the Upstate Cancer Center at Oneida. Tamer, who lives in Utica, sees Graziano at the Oneida office every six months.

PHOTO BY RICHARD WHELSKY

n an August day, Kathi Tamer and her

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cousins were making Lebanese string cheese.

The process involves kneading hot cheese curd

into braids and rolling them in caraway seeds. While they cooked, they talked about oncologist Stephen Graziano, MD, whom Tamer calls “hanoon,” an Arabic word for tenderhearted.

A 15-year survivor of stage IV non-Hodgkin lymphoma, Tamer, 65, is grateful for every day with family and thankful to Graziano for her health.

In 2004, Tamer had pressure in her chest and a cough but assumed she was having an asthma flare-up. Symptoms worsened, and Tamer thought she had a bad flu. Her otolaryngologist ordered a chest X-ray that showed enlarged spots in Tamer’s lungs.

“You need to see Dr. Kohman now,” Tamer’s family doctor told her.

Surgeon Leslie Kohman, MD, ordered additional tests and gathered a multidisciplinary team that included Graziano and an Upstate pulmonologist.

They determined that the 60-plus tumors in Tamer’s lungs were not lung cancer, but cancer of the lymph nodes that had spread to her lungs.

Treatment was three intravenous chemotherapy medications every three weeks for a year.

It was rough. During her first treatment, Tamer had a seizure — caused by a reaction to the then-new chemo drug Rituxan. Graziano slowed the administration of the drug, which stopped the bad reaction, but meant that Tamer’s treatments lasted eight-to-10 hours. She suffered from nausea and lymphedema (swelling) in

her right leg. Chemotherapy caused her hair to fall out, and she still has bald spots. For years, what began as a cold could put Tamer in the hospital for a month.

How did she cope with the lengthy treatment and slow recovery?

“You embrace the battle, you accept help,” Tamer explains, “and you add humor.”

She grins when she remembers the man who installed her chest port, a device for receiving chemo. He called her “Mama,” and they laughed that their families were like the one in the movie, “My Big Fat Greek Wedding.”

Tamer remembers the toy horse that her cousin gave her. “You’ve got cancer but you’re strong like a workhorse,” her cousin chided her. “We’re the Clydesdale Club.”

Tamer drew strength from “Kathi’s Angels,” co-workers who took her to treatments and helped with chores.

Today, Tamer feels truly healthy and remembers a special day 14 years ago.

Graziano teared up when he told her that the chemotherapy worked and her cancer was in remission. “Like I said,” she smiles. “He’s hanoon.” CC upstate.edu/cancer l summer 2019 l C A N C E R C A R E

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Quests to outsmart cancer

Alaji Bah, PhD, is searching for ways to keep cancersuppressing genes “turned on”— research that may lead to new medications.

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PHOTO BY WILLIAM MUELLER

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SHAring ExPErtiSE

BY AMBER SMITH

f the 268,600 women who will be diagnosed with breast cancer in America

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this year, 90 percent will live for at least another five years. Breast cancer is survivable, especially when it’s caught early, but it remains the most common

cancer in women, not counting skin cancers. The National Cancer Institute reports that 7 percent of all cancer deaths are from breast cancer.

Researchers are coming at the disease from multiple directions. They are designing new ways to target tumor cells, new methods of halting its spread, new approaches to drug resistance. With money from the Carol M. Baldwin Breast Cancer Research Fund, scientists at Upstate are on a quest to outsmart breast cancer. Here’s a look at five projects underway.

1.

Putting the brakes on cancer Using both chemistry and biology, Alaji Bah, PhD, is on a quest to improve breast cancer targets. He is searching for ways to keep cancer-suppressing genes “turned on” — research that may lead to new medications.

Now for the chemistry class: Remember what happens if you put sugar in water? The sugar molecule dissolves, and the two substances mix and become inseparable. They bind, like a married couple.

A biology-class refresher: Genes are sequences of nucleotides encoded within DNA. That same DNA is in every cell of our bodies, wrapping tightly around clusters of proteins. As they mature in our bodies, cells go through developmental changes to become skin cells, brain cells or other cells. Depending on how the cell develops, certain genes are turned on or off.

What happens if you put oil and water together?

They don’t mix. Chemists call this “phase separation.”

Phase separation is like two random strangers standing near one another.

Bah’s laboratory is targeting one of the mechanisms by which genes are turned on or off: DNA methylation.

When it is heavily present, tumor suppressor genes turn off and lose their ability to suppress cancer. They are the body’s cancer-braking system.

Many anti-cancer drugs prevent the global DNA methylation of genes, including tumor suppressors. Because of the lack of specificity of these drugs, other vital genes are also affected, resulting in unwanted side effects. The Bah lab focuses on five proteins that interpret DNA methylation to turn off the tumor suppressor genes.

The proteins Bah studies appear to phase-separate like oil and water. “We believe that these proteins are not binding but phase-separating with the methylated DNA,” he says.

“Some scientists think they are binding, but that’s not what our data is showing.”

If his idea is proven, Bah says it could lead to new, better anti-cancer medications.

When chemotherapy drugs stop working, it is called chemoresistance. It is a major hurdle in the management of breast cancer. Identifying the genes involved in drug resistance, such as the work being done in the Bah lab, is a crucial step toward developing a way to overcome it.

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Quests to outsmart cancer

continued from page 13

Ying Huang, MD, PhD, is studying a protein that makes breast cancer resistant to chemotherapy.

PHOTO BY RICHARD WHELSKY

2. Tackling drug resistance in breast cancer Research in the Upstate pharmacology laboratory of Ying Huang, MD, PhD, has led to the identification of a protein called RBEL1A that appears to play an important role in breast cancer cell survival and drug resistance. Excessive levels of this protein are found in a majority of human breast cancers. Huang’s team has found that when breast cancer cells have higher levels of this protein, they become more resistant to certain anti-cancer drugs.

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Her team has also identified several small molecules that can be used to lower the levels of this protein.

When levels of RBEL1A are lowered, Ying explains, cancer cell resistance should drop, and response to anti-cancer drugs should increase.

Studies in her laboratory are underway to see if these molecules can be combined with chemotherapy drugs to overcome chemoresistance, which is when the drugs stop working.

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3. Potentially slowing the spread of cancer Cells in the body are physically supported by a “scaffolding” called the extracellular matrix.

Known as the ECM, this support structure is made of up of collagen and other fibrous proteins. Cancer develops when normal cells transform into tumor cells. When this occurs, fibroblasts — the cells that create the support structure — also activate. If they create a rigid and dense structure, cancer cells can use the fibers as “tracks” to more easily escape and spread through the body. A less dense structure, though, can make it more difficult for the cancer cells to migrate.

proliferation and metastasis. He believes Hic5 plays a role in certain aggressive breast cancers.

To test this idea, Turner has teamed with Upstate breast surgeon Lisa Lai, MD. Some of Lai’s patients are contributing to the research effort by donating tissue from their surgeries.

Kyle Alpha, a student working toward a medical degree and a doctoral degree, splits his time between Lai’s operating room and Turner’s laboratory. He’s the one who has isolated CAFs from a dozen or so tissue samples from patients in the past year.

Lisa Lai, MD

“We have just begun our analyses, but we have noticed that, similar to our animal studies,there are indeed differences in the levels of Hic5 in the CAFs from patient to patient,” Turner says. Their ongoing work will compare Hic5’s impact in aggressive breast cancers to that in slowergrowing cancers and potentially identify Hic5 as a new therapeutic target for slowing cancer’s spread.

PHOTO BY ROBERT MESCAVAGE

Cell and developmental biologist Christopher Turner, PhD, focuses his work on a protein called Hic5 found in these cancer-associated fibroblasts, or CAFs. The Hic5 protein promotes a rigid and dense matrix.

In laboratory research in mice, he has shown a connection between the protein levels and tumor cell invasion,

Continued on page 16

Christopher Turner, PhD, examines cancerous breast tissue donated by patients of Lisa Lai, MD, to study how the tissue environment serves as a host for cancer.

PHOTO BY WILLIAM MUELLER

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Quests to outsmart cancer

continued from page 15

Christine King, PhD, is working to deactivate a molecule that allows breast cancer cells to grow and invade.

PHOTO BY RICHARD WHELSKY

4. Halting cancer spread via a new target?

Microbiologist Christine King, PhD, is investigating a key molecule called STAT3 that allows breast cancer cells to grow, move and invade other cells. It’s active in more than half of all breast tumors. But it’s a molecule we need in order to survive, so getting rid of it entirely is not an option.

Her goal is to find a way for STAT3 to peacefully exist, without its ability to impact breast cancer cells. She has to find a way to keep the molecule from being activated.

Medications designed to inhibit STAT3 have not shown success.

So, King is working backward, unraveling a chain reaction and searching for a new target. She has discovered that another molecule influences STAT3. It’s called TRIM28.

When TRIM28 binds with STAT3, STAT3 behaves.

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But if TRIM28 is phosphorylated, or altered, by an enzyme called MK2, TRIM28 cannot bind to STAT3, and the whole deal falls apart.

Scientists in King’s lab suspect that Trim28 is present in breast tissue, but they are trying to determine its phosphorylation state. That’s part of the work that is paid for by the Baldwin grant.

King envisions her work leading to a new target: MK2.

If she can keep that enzyme away from TRIM28, then TRIM28 can bind to STAT3, and STAT3 would not be able to allow breast cancer cells to grow and spread and invade other cells.

“If this turns out to be true in breast cancer, then we have a new target,” King says, “a highly specific target.”

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5. Paralyzing a protein that helps cancer cells A protein called Hsp90 is a chaperone that looks after other proteins, making sure they work properly. However, cancer cells hijack the Hsp90 protein, so they too can survive and grow.

which would make the medications more potent.

While Hsp90 inhibitors hold promise, none will be a solution for every type of tumor, in every patient. So Mollapour wants to find a way to identify those tumors that respond better to the Hsp90 inhibitors. He’s looking for what scientists call a biomarker.

Several Hsp90 drugs are being tested in clinical trials. They are designed to selectively accumulate in tumor cells and paralyze Hsp90 so that it can no longer protect the tumor cells.

“If you target the chaperone, you target the cancer cells,” describes Mehdi Mollapour, PhD, a professor of urology, biochemistry and molecular biology, and vice chair for translational research in the Department of Urology.

One of his projects focuses on FNIPs, which assist Hsp90 in chaperone duties. Mollapour knows that when FNIPs are “downregulated,” tumor cells are less sensitive to Hsp90 inhibitors. When they are “upregulated,” the inhibitors more readily bind to Hsp90 in tumor cells.

Mollapour and his research team study tissues from breast tumors and compare them with adjacent healthy breast tissues. He believes that chemical modifications of Hsp90 protein make them more attractive to the Hsp90 inhibitors,

“Our findings suggest that FNIPs expression can potentially serve as a predictive indictor of tumor response to Hsp90 inhibitors,” he describes in an article in the journal Nature Communications. CC

Mehdi Mollapour, PhD, is looking at ways to make anti-cancer medications more powerful. He’s seated next to a 3-D print PHOTO BY SUSAN KAHN of the cancer chaperone, Hsp90 protein. upstate.edu/cancer l summer 2019 l C A N C E R C A R E

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Living witH CAnC Er

Tackling kidney cancer Medical imaging helps catch this symptom-free cancer earlier Upstate urologist Oleg Shapiro, MD, explains Doctors traditionally saw kidney cancer in people in their 60s and older, but the increased use of medical imaging has led to a rise in the incidence of kidney cancers that are discovered incidentally. These are typically small tumors, found in younger people. Kidney cancer is among the 10 most common cancers in both men and women.

Symptoms “Most people with kidney cancer feel absolutely nothing, even if the tumor is very large,” says Shapiro. The more advanced types of kidney cancer may produce blood in the urine or lower back pain on one side, along with fatigue, loss of appetite, weight loss, fever and anemia.

tumors Kidney cancer can develop within the organ or anywhere outside of it.

The majority of the small tumors that are found incidentally are low- to intermediate-grade and do not grow quickly. The larger tumors tend to be the more aggressive.

If kidney cancer spreads, it’s most likely to appear in the nearby lymph nodes or lungs, but Shapiro has also seen it spread to the liver, bone and brain.

diagnosis Someone who is found to have a mass on a kidney may undergo a special CT scan that is taken after an injection of dye. Shapiro explains that up to 80 percent of the masses that react to the dye turn out to be cancerous. Some doctors may verify with a 18

C A N C E R C A R E l summer 2019 l upstate.edu/cancer

biopsy. Others make immediate plans for treatment.

treatment “Surgery is the mainstay of therapy for kidney cancer,” he says, “but it depends on the size of the tumor, the age of the patient and the medical comorbidities — if someone is diabetic, or obese, or if they have heart disease.”

In some cases, the tumor may be frozen, using cryoablation, or burned, using radiofrequency ablation.

“We don’t need to operate on every single patient,” Shapiro points out.

“A lot of patients can be observed.

They can actually be watched safely with serial CT scans and not have any problems from their disease, ever.”

not an effective treatment, either.

However, several types of immunotherapy — designed to boost the body’s own immune system to recognize and destroy cancer cells — are available for patients with advanced kidney cancers. Shapiro says patients at Upstate also have access to a variety of clinical trials of immunotherapies in development.

Follow-up Shapiro says some insurance companies suggest patients only need follow-up care for five years after treatment for kidney cancer. “I follow patients forever,” he says. “The reason is, I have seen people redevelop kidney cancer somewhere else 10, 15 or even 20 years down the road.” CC

Surgery Depending on the size, location and type of tumor, the entire kidney may have to be removed.

But ideally, surgeons can do what’s known as a “partial nephrectomy,” removing only the tumor and leaving healthy kidney tissue behind. “It has nothing to do with cancer. It has to do with other things, such as diabetes and heart disease. The more normal kidney tissue one has, the better off they are in the long term,” Shapiro explains.

Most surgeries are done laparoscopically, using a small incision and robotic assistance, and patients are back to normal activities within a week.

Additional care Kidneys are not sensitive to chemotherapy. Radiation therapy is

Oleg Shapiro, MD

Living witH C AnCEr

Help for a sore mouth

BY AMBER SMITH

ancer treatment can harm the fast-growing cells

RECIPE

Fruit and Cream

ingredients

C

Almond or vanilla extract to taste

treatment ends. Here are some strategies from the

Preparation

National Cancer Institute to help manage this problem:

Blend ingredients in a blender and chill well before serving.

1 cup whole milk

in the lining of your mouth and lips. You may

1 cup vanilla ice cream or frozen yogurt

develop little cuts or ulcers in your mouth, or

1 cup canned fruit (peaches, apricots, pears) in heavy syrup with juice

tender gums, which will most likely feel better once

nutritional information • Choose foods that are easy to chew, such as milkshakes, scrambled eggs, cottage cheese, creamy peanut butter, mashed potatoes or liquid meal replacements.

This yields two 1½-cup servings.

• Cook foods until they are soft and tender.

If made with ice cream:

Per serving

• Cut foods into smaller pieces or puree foods using a blender or food processor.

• 302 calories

• Drink with a straw. This can help push the drinks beyond the painful parts of your mouth.

• 7 grams of protein

• Use a very small spoon, like a baby spoon. This will help you take smaller bites, which may be easier to chew.

If made with frozen yogurt:

• Eat cold or room-temperature food. Your mouth may hurt more if food is too hot.

• 9 grams of protein

• Suck on ice chips. Ice may help numb and soothe your mouth.

• Avoid certain foods and drinks that may irritate, including citrus fruits and juices, tomatoes and ketchup, salty foods, sharp crunchy foods, raw vegetables and drinks containing alcohol.

• 268 calories

SOURCE: THE NATIONAL CANCER INSTITUTE, PART OF THE NATIONAL INSTITUTES OF HEALTH.

• Do not use items that can hurt or burn, such as mouthwash containing alcohol, toothpicks, cigarettes or other tobacco products.

• Ask your doctor about medicine for pain. He or she may suggest lozenges or sprays that numb your mouth while eating.

• Rinse your mouth three or four times a day. Mix 1/4 teaspoon baking soda and 1/8 teaspoon salt with 1 cup warm water. Rinse with plain water after using this mixture. CC upstate.edu/cancer l summer 2019 l C A N C E R C A R E

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Living witH CAnC Er

A difficult diagnosis A psychiatrist with cancer shares his coping strategies

BY AMBER SMITH

F

irst of all, being a psychiatrist himself hasn’t been that helpful with his diagnosis.

“I’m a human being first, and I experience emotions after a life-altering diagnosis just like anybody else,” Adam Stern, MD, explains. “Often, I know what I would tell a patient, how I would direct them to deal with certain feelings or thoughts or emotions, and yet I still have trouble doing that myself, in any kind of effective way.”

Stern is an assistant professor of psychiatry at Harvard Medical School. He graduated from Upstate Medical University in 2010. He was diagnosed with kidney cancer in January 2018 and has written extensively about his experience, in medical journals and newspapers.

“Sometimes I feel totally at peace with the diagnosis, and other times I am overwhelmed with sadness, fear or anger,” he writes on a blog. “There are three activities that seem most helpful for me personally: spending time with my wife and 1-year-old son, going for walks with music in my ears, and writing.”

Stern had his kidney removed soon after his diagnosis. Almost a year later, he had tumors related to his kidney cancer removed from his lungs. In the year since his diagnosis, he writes in The New York Times, “I’ve lived more fully than ever before in my life, holding my wife and son tighter.”

Stern does not recommend Googling disease survival curves — the statistical graphs showing the percentage of people who survive over time. Even so, as many people do after a diagnosis, he immediately searched for his survival odds: a

20

C A N C E R C A R E l summer 2019 l upstate.edu/cancer

Adam Stern, MD, as a medical student at Upstate Medical University. Follow him on Twitter @AdamPhilipStern

53 percent chance he would still be alive in five years. He wrote an essay about that.

“In the case of surviving cancer, the path can be construed as binary: to die or not, or it can remain forever in the realm of living with a chronic illness with the threat of death lurking all the time.” Stern continues, “This is hard to accept. Human beings are complex, discerning creatures, but we’re just not built to live contentedly with the uncertainties of an unclear prognosis.” continued on page 21

Livi ng wi tH C AnCEr

12 ways Dr. Stern copes with kidney cancer 1.

2.

3.

4.

5.

Family time Walks with music Writing Doodling Imagining a long life

6.

7.

8.

Being mindful in the moment Psychotherapy Hanging out with children in his family who don’t know he’s sick

9.

10.

11.

12.

Rethinking his time Gratitude journal Pursuing a lofty dream Accepting that death is part of life

These are things that have helped Stern, but he points out that we all cope in different ways. What’s important is to find what works for you.

A difficult diagnosis

continued from page 20

Survival curves can be depressing, if you see yourself in the middle. Or, you can see yourself on the tail end of the curve and imagine a long life, he says. “It’s much more healthy to do the latter.”

At the end of each day, Stern thinks back on what went well, what he appreciated. He keeps a journal.

Stern says it’s human nature that people want to hear only positives regarding his prognosis.

“That’s a way you can actually feel better about how your life is going and appreciate the things that are going well in your life, even when things are tough.”

“Society as a whole would do well to move toward a more accepting place with regard to death and dying.” He says a good place to start is with the book written by a Harvard colleague, Atul Gawande, MD: Being Mortal: What Matters in the End. Staying busy with his work or engrossed in recreational activities with his family quells Stern’s anxiety about the future.

Some moments even allow him to forget his cancer. “I’m actually able to be mindful of what I’m doing and be in the moment with those activities,” he explains. “Those are the best moments of my day.

“What I do with the rest of the day — which can sometimes be overwhelmed with fear and anxiety — is a challenge. That’s where psychotherapy comes in.”

Stern’s therapist offers “a place where I can bring in those things. It doesn’t help me escape from fears or anxiety, but rather it’s a place where I find acceptance in those thoughts and fears, and a place where I discover ways of coping.”

Children in his life also provide acceptance.

His toddler son, and 4- to 7-year-old nieces and nephews, are the only people within Stern’s orbit who don’t know he’s sick. “They are really such a gift to me,” he says.

“It’s such an amazing opportunity to interact with someone where the interaction is completely genuine from their end. They have no idea what’s going on in terms of my illness. So for my son, I’m just Dad — and that’s a real pleasure.”

Before his diagnosis, Stern was a “people pleaser” who agreed to almost any task that was asked of him. “I now only say yes to things that actually will align with this vision of who I want to be and how I want to spend the time that I have.

That applies across the board to all aspects of my life,” he says.

“I’ve learned to live every day as well as I can, with as much meaning and purpose as I can. And I don’t think people should wait until they are diagnosed with cancer or another life-threatening condition before they start to live their lives this way.”

Doodling helped him process his feelings.

They were just simple drawings, kind of like Gary Larson’s The Far Side, that poked fun at doctors or therapists. Stern soon realized he had a collection of cartoons.

So, he produced a cartoon book called Shrunk, MD, that sells for $12.99 on amazon.com. Book sales so far have raised more than $6,000 for KC Cure, an organization that pays for kidney cancer research.

“If you’re on the fence about pursuing some random dream of yours, just go for it,” he advises. Stern had been unsure about whether to put forth the effort for a cartoon book, “but it’s something I’m so happy that I did.

“The worst case scenario is that it doesn’t work out. The best case scenario is that you do something that you’re happy with, that you can remember and be proud of.” CC

He took up the practice of actively pursuing gratitude. upstate.edu/cancer l summer 2019 l C A N C E R C A R E

21

MAking A di FFErEnC E

We are your neighbors Money raised for pediatric cancer helps kids here in Central New York

BY EMILY KULKUS

One of the organizations that helped Archie Kulkus (in the foreground with his mother, Emily) and his family during his cancer treatment was Paige’s Butterfly Run, which has raised more than $3 million to help kids and their families in Central New York. His family and friends participate in the annual run as members of “Archie’s Orange Army.”

Emily Kulkus works in public and media relations at Upstate.

PHOTO BY SUSAN KEETER

verywhere we go, Archie makes a new friend.

E

He’s quick to smile and always chatty — not to

mention pretty darn cute. So lately, lots of people stop to talk to us. Mostly him.

They tell me how cute he is. Then they talk with him and they tell me how smart, engaging and sweet he is. And every single time I think... if they only knew.

22

And then yesterday we were out running errands, and I was wearing my 2019 C A N C E R C A R E l summer 2019 l upstate.edu/cancer

Mountain Goat Run shirt. The woman behind the counter asked me if I’d run this year.

“Yes, I did the relay,” I said.

She said, “Oh, my husband does it every year. He’s the one bouncing the basketball.”

Of course I know him; he’s a local celebrity. continued on page 23

MAking A diFFErEnCE

Neighbors continued from page 22

She went on to say that he does it to raise money for leukemia and other pediatric cancers.

FIRST IN NEW YORK. ONE OF 13 IN U.S.

I tousled Archie's hair — the hair that she and several others in the store had just admired — and said, “Well this guy right here is a cancer survivor. So please tell your husband thank you from both of us.”

The air left the room. There were audible gasps.

Sometimes I forget that “kids” and “cancer” are not things people are used to hearing. Sure, they see it on TV sometimes, but that’s someone else’s child — someone else’s problem.

I want people to see and know that pediatric cancer happens right here, too. We are your neighbors.

Archie is a beautiful, shining example of an amazing outcome.

He was 7 months old when he was diagnosed with Wilms’ tumor, a type of kidney cancer. He endured a nearly 12-hour surgery to remove the tumor and one of his kidneys and spent nearly a week in the pediatric intensive care unit at the Upstate Golisano Children’s Hospital. Over the course of eight months, Archie had eight radiation treatments, 15 chemotherapy treatments and many other tests and hospital visits to track his health.

In late March 2017, Archie received a clean bill of health, and his ongoing cancer treatment ended. Doctors will keep close tabs on him for the rest of his life. Survival rates for Wilms’ tumor are extremely high, and his future looks bright.

Upstate University Hospital and its Community Campus Orthopedics program is New York state’s first DNV-certified Center of Excellence for hip and knee replacement — and only one of 13 in the nation with this distinction. The program excelled in a number of areas, including the quality of orthopedic surgery, surgical outcomes and post-surgical follow-up.

Community Campus Orthopedics — a collaboration between talented and experienced physicians from both Upstate Orthopedics and Syracuse Orthopedic Specialists — now features Swift Knee, allowing patients the option of outpatient knee-replacement surgery.

MORE INFORMATION CALL: 315.464.8668 OR VISIT UPSTATE.EDU/COMMUNITYORTHO

I don’t mind the gasps. Or the tears.

I never want “kids” and “cancer” to be normal. But we have a long way to go before it’s a phrase we don’t recognize. CC

to donate to pediatric oncology research and patient programs at Upstate, contact the Upstate Foundation at 315-464-4416, upstatefoundation.org or Paige’s Butterfly run at pbrun.org

LOCATED AT 4900 BROAD ROAD, SYRACUSE, NY

ASK FOR THE EXPERTS. ASK FOR UPSTATE. upstate.edu/cancer l summer 2019 l C A N C E R C A R E

23

Non Profit Org. US Postage

PAID 750 East Adams Street l Syracuse, NY 13210

UPClose

Meet DIANA

This is the device that helps the pharmacy team in the Upstate Cancer Center mix chemotherapy medications for individual patients. The product name “DIANA” is a tribute to the ICU Medical founder and CEO’s wife, Diana Kostyra Lopez, MD, whose life was cut short in 2006 by breast cancer. ICU Medical is based in San Clemente, California. Upstate senior pharmacist Andrew Burgdorf, PharmD, explains that 25 to 30 percent of chemotherapy agents given at Upstate are mixed with DIANA’s assistance.

19.224 0819 39.55mELsk

PHOTO BY RICHARD WHELSKY

Permit No 110 Syracuse, NY