Seeking families with young children for study on child mental health

A pair of mental health researchers at Upstate are studying new ways to classify mental health disorders in children and looking to change the way psychiatric disorders are understood and diagnosed in the future.

Stephen Faraone, PhD, and Stephen Glatt, PhD, are analyzing genetic variation and basic cognitive abilities within families. Their goal is to  provide a better basis for a new diagnostic system that is less subjective than what is currently used.

If you are the biological parent of a child between the ages of 6 and 12 years, you may be eligible to participate in their study, which is funded by the National Institute of Mental Health.

The research team is recruiting about 700 families (2,800 individuals) and looking at a broad spectrum of childhood behaviors, including children who are developing typically with no mental health concerns, as well as those who may have mental health concerns or behavioral problems. Parents and their children will complete a series of questionnaires and computer-based tasks and provide a blood sample for genetic analysis.

The study procedure takes up to 3 hours for the family, and each participant is financially compensated. To enroll or learn more, contact research assistant Pat Forken at 315-464-5619.

Hear an interview about this research

 

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What to expect at your first visit

The main entrance to the Upstate Cancer Center.

The first appointment at the Upstate Cancer Center is usually a consultation that lasts at least 1½ hours and involves the oncologist and other members of the treatment team who will discuss options and recommendations with the patient. Oncologists will have reviewed radiology and laboratory results and other information from referring physicians prior to the patient’s arrival.

Before arriving:

  • Do some research on the type of cancer you have. Find resources at upstate.edu/cancer under the “cancer types” tab.
  • Write down specific questions.

    Atrium of the Cancer Center.

    Atrium of the Cancer Center.

  • Learn about your physician at upstate.edu/hospital/providers
  • Let the appointment scheduling staff know if translation services or interpretation for the hearing impaired are needed.

What to bring:

  • Completed medical history form, located at upstate.edu/cancer under “your first visit.”
  • Referring physician’s name, address and phone number.
  • List of prescription medications, over-the-counter medicines and supplements.
  • List of questions.
  • Family member or friend who can help listen and take notes.
  • Health insurance cards, plus your employer’s name, address and phone number if you are covered under an employer’s insurance program. Also, living will or advance directives, if you have them.
  • Parking ticket for validation.

For questions, please call 464-HOPE (4673).

This article appears in the summer 2015 issue of Cancer Care magazine.

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DNA details may reveal where cancer begins

Wenyi Feng, PhD, is an assistant professor of biochemistry and molecular biology. (PHOTO BY WILLIAM MUELLER)

Wenyi Feng, PhD, is an assistant professor of biochemistry and molecular biology. (PHOTO BY WILLIAM MUELLER)

Nearly everyone has spots along their chromosomes that are considered “fragile,” where gaps or constrictions leave the chromosome vulnerable to breaking.

These areas are frequently affected in cancer, so they are of interest to cancer researchers including Wenyi Feng, PhD, an assistant professor of biochemistry and molecular biology at Upstate.

HiRes

Feng and her colleagues use budding yeast to map chromosome breaks and determine how and where they occur in human DNA. They believe fragile sites are the result of collisions between drug-induced unstable DNA replication and untimely gene transcription. They say this phenomenon could affect important genes, such as tumor suppressors, and that could allow cancer to develop.

“While anti-cancer drugs are effective in preventing tumor cells from replicating, they can also alter gene expression simultaneously as they inhibit DNA replication, a phenomenon that has not been investigated widely,” said Feng.

Her study was published in March in the journal Genome Research with co-authors Elizabeth A. Hoffman, Andrew McCulley, Brian Haarer, PhD, and Remigiusz Arnak, PhD.

In this study, the Upstate scientists showed how to improve the sensitivity and resolution of mapping chromosome breaks using a technique called Break-seq. They hope to use the techniques to identify new cancer-associated genes.

This article appears in the summer 2015 issue of Cancer Care magazine

 

 

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He collected $5,000 one nickel at a time

The average person might not look forward to returning bottles and cans for the nickel deposit. But Laurence Segal, of DeWitt, has made that task part of a personal crusade to fight breast cancer.

Laurence Segal shows receipts from the bottles and cans he has redeemed to help cancer research. (PHOT OBY SUSAN KAHN)

Laurence Segal shows receipts from the bottles and cans he has redeemed to help cancer research. (PHOTO BY SUSAN KAHN)

Aided at various times by his friends, family and girlfriend, as well as by people at Destiny USA, RealtyUSA, the New York State Fair, the Syracuse Chiefs and Wegmans, Segal redeemed 100,000 bottles and cans, enabling him to write a check in January for $5,000 to the Carol M. Baldwin Breast Cancer Research Fund of CNY.

Wouldn’t it be easier for him just to ask for cash donations?

“People don’t really miss a can or a bottle,” Segal said. “If it’s cash, they might say no. If it’s an empty can or bottle, they say, “Sure.” Those 5 cents add up quickly. If you had a million people give one can, that’s $50,000 you raised.”

Segal, 37, is on his way to collecting his next 100,000 returnables, so he can write another check to the Baldwin fund, which sends all the money it raises locally to support research at Upstate Medical University.

Cancer is highly personal for Segal, whose mother, grandmother and great aunt, as well as his girlfriend’s mother, were all affected by breast cancer, as was a former male co-worker. In addition, a close friend, who often helped him on his collections, is currently battling a highly aggressive form of leukemia. Segal wants people to get screened for cancer and for research to be funded.

Beth Baldwin, executive director of the fund that bears her mother’s name, praised Segal for the way he honors the cancer struggles of his mother. Laurie Segal, 60, was ostracized in 1987 when she had what was considered a radical operation, removing both breasts because of her increased risk of developing breast cancer.

Segal’s family and friends have gotten used to helping him fill his car with bags of bottles and cans and heading to Wegmans to return them. And he has gotten good at working a return machine with each hand simultaneously.

“I’m just one volunteer. I always tell people: Give a penny. Give a nickel. Give a dime. Just do it.  Five cents is huge,” Segal said.

This article appears in the summer 2015 issue of Cancer Care magazine.

 

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Tribute to an inspirational woman serves others with breast cancer

When Jeanelle Crowell Cross, known to all as “Jel,” learned she had aggressive breast cancer, she immediately decided two things: 1. cancer would not define her, and 2. something good would come from her diagnosis.

The 31-year old teacher, who taught special education at Roxboro Road Elementary School in Mattydale, kept up with her full-time position and postgraduate classes despite the diagnosis of stage 4 ductal carcinoma that had spread to her lymph nodes and liver.

Jeanelle "Jel" Crowell Cross

Jeanelle “Jel” Crowell Cross

“She would not let cancer define who she was or keep her from living a full and meaningful life,” said Jackie Gaffield, Jeanelle’s mother, who recalls her daughter as an energetic teacher who inspired her students and as a creative young woman with a keen fashion sense who loved to bake and share treats with friends and family. She pursued those interests during 18 months of chemotherapy, surgery, and radiation treatment.

In the years following her daughter’s death in September 2012, many tributes have followed, including a playground, a golf tournament, scholarships and a research grant named in her memory. Gaffield also made a gift to the Upstate Cancer Center in honor of her daughter, grateful for the care she received from Sheila Lemke, MD, and the treatment team. This gift helped, in part, to pay for an infusion station where patients receiving chemotherapy treatments can look over the healing garden.

Family and friends also wanted to extend support to other young women who are being treated for breast cancer and drew their inspiration from Jel’s interests and zest for life. Through the Upstate Foundation, the “AnJel Fund” extends personal services such as makeovers, spa services, gym memberships, house cleaning, and family entertainment packages to patients age 40 and under. “These offer an emotional lift when it is needed most,” said Gaffield. “We sometimes forget that these brave young women (and men) need pampering so that they feel beautiful and strong.”

Nurse Lori Brzeczkowski is a breast cancer patient navigator at the Upstate Cancer Center who coordinates the fund. “The AnJel Fund is a thoughtful legacy which can provide comfort at a difficult time for young breast cancer patients,” she said. “The fund is an expression of the gratitude and fulfills Jeanelle’s wish to have a positive impact on others who share her diagnosis.”

Young women interested in accessing personal services can contact Brzeczkowski by calling 315-464-3509,. Donations to the AnJel Fund may be made at www.upstatefoundation.org/AnJel.

This article appears in the summer 2015 issue of Cancer Care magazine.

 

 

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Tips for understanding melanoma

Melanoma is one of the most aggressive forms of skin cancer and the leading cause of death from skin disease, killing an estimated 10,000 people in the United States each year.Melanoma, Mole, Skin Cancer

Melanomas often resemble moles; some develop from moles.

If melanoma is recognized and treated early, it is almost always curable, but if it is not, the cancer can advance and spread to other parts of the body, where it becomes hard to treat and can be fatal.

Here are some things to keep in mind about melanoma from Scott Albert, MD, a surgical oncologist at Upstate Medical University.

Keep track of changes to your skin, he said, mentioning the “ABCDE” guidelines commonly used to check for warning signs of possible melanoma:

  • A (asymmetry): One half of a mole or birthmark does not match the other.
  • B (border): The edges of a mole are irregular, ragged or blurred.
  • C (color): The color is not the same all over.
  • D (diameter): The spot is larger than ¼ inch across – about the width of a standard pencil eraser.
  • E (evolving): The mole is changing in size, shape or color.

Some melanomas do not fit these guidelines, but it’s important to tell your doctor about any skin changes, growths that look different from your other moles, and spots that itch or bleed, he said.

Among melanoma’s risk factors:

  • Having fair skin, although dark-skinned people can also get melanoma.
  • A family history of melanoma.
  • Exposure to ultraviolet (UV) light, such as sunlight or tanning lights.

“Fair-skinned patients are predisposed to sunburns,” Albert said, “and sunburns, especially blistering sunburns, put you at increased risk,” even years later.

“Evidence is becoming stronger that tanning beds do have a negative influence on people and increases their risk of skin cancer,” Albert said, but the melanoma might occur 10 or 20 years later, and it can be hard for people to see the cause-and-effect relationship.

Hear Albert’s radio interview about melanoma. This article appears in the summer 2015 issue of Cancer Care magazine.

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Missing gene tied to lethal prostate cancer

Leszek Kotula, MD, PhD, associate professor of urology and molecular biology, in his Upstate laboratory. (PHOTO BY WILLIAM MUELLER)

Leszek Kotula, MD, PhD, associate professor of urology and molecular biology, in his Upstate laboratory. (PHOTO BY WILLIAM MUELLER)

Men diagnosed with prostate cancer who lack a particular gene called WAVE-1 may have better survival odds if they are treated early.

That’s according to research from scientists at Upstate Medical and Harvard universities, who worked together to link the absence of a WAVE-1 gene to a lethal form of prostate cancer. Their research – based on analysis of public databases – was published in March in the journal Oncotarget.

“We observed that prostate cancer tumors contain a frequent deletion of the WAVE-1 gene. What’s important, though, is that this WAVE-1 gene deletion occurs in metastatic and lethal cancer, thus suggesting that the WAVE-1 gene loss may represent an aggressive subtype of prostate cancer which is more challenging to treat and more likely to progress,” said study co-author Leszek Kotula, MD, PhD, associate professor of urology and biochemistry and molecular biology at Upstate.

“It is possible that patients who have tumors characterized by the deletion of the WAVE-1 gene may benefit from earlier intervention, such as surgery or radiation therapy,” he said.

The researchers found that alterations in the WAVE-1 gene were associated with a shorter period of remission in patients who were treated for prostate cancer. They also discovered that almost a quarter of the prostate cancers reviewed in the database lacked the WAVE-1 gene.

WAVE gene complexes are involved in cell motility and migration, cellular adhesion and cell-to-cell communications, numerous processes that can play a role in tumor progression and the spread of cancer.

“It is clear that disruption of the WAVE complex is associated with human cancers, including prostate cancer,” said Harvard’s Adam G. Sowalsky, PhD, an instructor in medicine. He said further investigation is needed, but “because lethal prostate cancers show this disruption, we may be able to identify mechanisms that lead to the tumor cell acquiring resistance to advanced therapies.”

The study was paid for by the National Institutes of Health and the Department of Defense. Gennady Bratslavsky, MD, and MD/PhD student Rebecca Sager from Upstate were also involved in the work.

Kotula’s previous research implicated a gene called ABI-1 as a tumor suppressor in prostate cancer. The Oncotarget study built on that, setting out to find other genes that cooperate with ABI-1 in the progression of prostate cancer. They found WAVE-1.

Now, Kotula’s lab is replicating the WAVE-1 gene deletion in mice. Such work can aid in the development of drugs or new treatments to suppress tumors or provide more precision in the treatment of these aggressive cancers.

About prostate cancer

After skin cancer, prostate cancer is the most common cancer among men. About one man in seven will be diagnosed with prostate cancer during his lifetime. Most will not die from the disease, even though prostate cancer is the second leading cause of cancer death – behind lung cancer – for men.

 This article appears in the summer 2015 issue of Cancer Care magazine.

 

 

 

 

 

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Why physical therapy may be part of cancer care

Cassi Terpening, DPT, in the therapy gym at Upstate's Institute for Human Performance. Some appointments may be held at the Upstate Cancer Center. (PHOTO BY WILLIAM MUELLER)

Cassi Terpening, DPT, in the therapy gym at Upstate’s Institute for Human Performance. Some appointments may be held at the Upstate Cancer Center. (PHOTO BY WILLIAM MUELLER)

Cancer and its treatments can leave patients feeling nauseated, tired and out of condition, but research shows that exercise during treatment can help them feel better and function better.

“The goal of physical therapy is to assist the patient with cancer to maintain their quality of life by managing the physical effects of the disease and/or its treatment,” said physical therapist Cassi Terpening, DPT. She and the other physical therapists first perform a thorough evaluation and then create a plan of care based on the patient’s impairments and goals. Every program is highly individualized, and changes can be made from session to session if needed. The therapists are sensitive to how the patient is feeling. “If they’re feeling very ill, we take it very easy,” Terpening said. They also consult with other members of the patient’s care team, which may include doctors, nurses, nurse practitioners, physician assistants, nutritionists and respiratory therapists.

Services can be provided when patients are diagnosed, during treatment or once they enter survivorship. The course of treatment also varies. Some patients may be seen one time, and others may benefit from weekly sessions.

Patients can meet with physical therapists at the Upstate Cancer Center for evaluations and treatments. A fully equipped therapy gym is located across campus at the Institute for Human Performance, and at outpatient sites in Manlius, East Syracuse and Syracuse. Therapy may include strengthening or balance exercise using free weights, resistance equipment or Pilates equipment.

“Research involving cancer patients is showing that too much rest is not good, and physical activity is important,” Terpening said, citing a recent study from the Netherlands. “Moderate exercise, as tolerated, is very helpful.” If a patient is deconditioned, “we start very slow, and slowly try to build up,” she said. If fatigue is a problem, conserving energy throughout the day, such as sitting down while cooking, is important so that some energy is available to exercise.

Walking is one activity that is safe for almost everyone, and it can be a comfortable way to increase the activity level for people who view exercise as daunting, she said.

“The patient and I both decide when to end the treatment. When they are moving better, pain is managed and fatigue is better managed, they can continue independently” she said. “At discharge I always tell people, if there are any changes, questions, concerns in the future that they are welcome to return.”

Hear Terpening’s radio interview about physical therapy for cancer patients. This article appears in the summer 2015 issue of Cancer Care magazine.

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Newly approved drug boosts pediatric cancer survival rates

Jack is being treated with a newly approved medication that has shown to boost survival rates by 50 percent. This medication — Unituxin — was available to Upstate pediatric patients during the clinical trial phase. (PHOTO COURTESY OF THE BRICKMAN-DONNELLY FAMILY)

When Jessica Brickman of Camillus put her baby, Jack, to sleep that Friday last fall, the 9-month-old was just as jolly and happy as always. The little guy awoke with black circles around his eyes, clearly not feeling well, and throwing up.

Emergency pediatricians at the Upstate Golisano Children’s Hospital explored whether Jack had fallen or been injured. A computerized tomography scan revealed tumors on his skull, and one of the doctors prepared Brickman and Jack’s father, Robert Donnelly, for the news they would hear later that day.

Jack had an advanced form of neuroblastoma, the most common cancer in infancy, which affects about 700 babies in the United States each year. Pediatric oncologists at Upstate cared for 15 children with the diagnosis between January 2010 and February 2015.

Jack’s tumors were classified as high risk, unusual for an infant under 18 months of age. It would require aggressive treatment in order to improve his chance for a cure. Babies with low-risk tumors have high cure rates.

Pediatric oncologist Irene Cherrick, MD (PHOTO BY CINDY BELL)

Treatment started the next day for Jack. He was hospitalized for 10 days, receiving the first of six rounds of chemotherapy. He went home on his big sister, Alyssa’s, second birthday. After additional chemotherapy, Jack had stem cells removed and frozen to be returned to his body later. He underwent surgery to remove his tumors. Then his parents took him to Philadelphia for three weeks for specialized radiation therapy before returning to Upstate for the stem cell transplant. Beginning the week of Memorial Day, Jack started immunotherapy.

The boy, now 18 months old, receives a continuous infusion of a drug called Unituxin, which will help his body’s immune system find and destroy any remaining cancer cells. The infusion lasts from 10 to 20 hours over four consecutive days, and it’s painful. But Unituxin has become part of the standard treatment for neuroblastoma since researchers showed that children with high-risk tumors who received the drug had survival rates of 66 percent, compared with rates of 46 percent among babies who did not.

As soon as researchers realized how effective the drug was, the international trial involving 1,200 children was halted, and all of the children received Unituxin.

“Unituxin basically increased the cure rate by 50 percent. That’s huge,” said Upstate’s Irene Cherrick, MD, one of the pediatric oncologists who celebrated the approval of the drug in March. It’s only the third drug approved by the FDA specifically for the treatment of cancer in children. The medication has been available to patients at Upstate Golisano Children’s Hospital through the clinical trial.

As revolutionary as the drug is, it does not replace the treatment regimen for neuroblastoma – and it does not cure everyone.

Jack’s parents remain hopeful. “If it works the way it’s supposed to,” Brickman said, “it will make him better in the long run.”

This article appears in the summer 2015 issue of Cancer Care magazine.

 

 

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How to choose the right sunscreen

Ramsay Farah, MD

Ramsay Farah, MD

You can buy sunscreens with SPFs higher than 30, but you don’t need a higher sun protection factor to protect your skin from the sun and ultraviolet radiation, according to Ramsay Farah, MD, the division chief of dermatology at Upstate.

He offers this advice for reducing your risk of skin cancer as well as sunburn:

  • Apply sunscreen a half hour before you go out in the sun.
  • Reapply sunscreen frequently — every two to three hours when you’re in the direct sun.
  • Make sure the label says the sunscreen shields against both UVA and UVB rays. Sunscreens are traditionally weaker at getting UVA radiation.
  • There’s no such thing as a truly waterproof sunscreen, so after you get out of the water, you need to reapply your sunscreen.
  • Sunscreens are essentially the same for children and adults, although some are marketed for kids. For children younger than 6 months of age, however, it’s probably better to dress them in protective clothing than to use sunscreen.
  • Zinc oxide and titanium dioxide are good sunscreen ingredients because they physically block the sun’s rays and are inert, so they don’t react with anything in your body. Modern formulations avoid giving you a pasty look.

Hear Farah’s radio interview about sunscreens. This article appears in the summer 2015 issue of Cancer Care magazine.

Set of suntan cream

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