Executive Director Message

StuartKlein.pngMay is brain tumor awareness month, and the UF Health Proton Therapy Institute is a regional resource with radiation oncologists who specialize in treating brain tumors and other central nervous system tumors. Our pediatric program is well-known worldwide for excellence in treating rare tumors such as craniopharyngioma and ependymoma. Of the pediatric patients we have treated, 65% have had a brain tumor. What makes proton therapy optimal for treating brain tumors? In children, we can reduce the amount of collateral radiation to healthy, growing brain tissue and other critical structures such as the eyes, ears and pituitary gland. This means less risk of cognitive, visual or hearing impairment, and hormone deficiency. These same benefits are seen in adult brain tumor patients as well. And because more targeted radiation doses are given, better tumor control may be achieved. This is the two-fold benefit of proton therapy, excellent tumor control and excellent quality of life outcomes for patients.

 

Stuart L. Klein

Executive Director

Jacksonville Feels Like Home to Family from Australia

australia

By Theresa Edwards Makrush

When Kalpana Nagraj and Prasanna Venkatesh learned that tumor remnants in their 10-year-old son Arjun’s brain showed signs of growing after 16 months of remission following surgery they were surprised. Arjun was not experiencing any symptoms said his father Prasanna. The change, however, was visible on the imaging scan done as part of regular monitoring of his condition. His doctors in Sydney, Australia, recommended radiation therapy.

Kalpana, Arjun’s mother, said at the time of his initial diagnosis in August 2017, he had recently passed a rigorous academic exam and was placed in one of the top schools for gifted and talented students. Through their discussions with the radiation oncologist in Sydney and their independent research, they were aware of the potential treatment-related risks to cognitive function. “We didn’t want the effects of radiation to affect his future prospects given he is a very bright child,” she said 

Arjun’s parents with strong support from their local radiation oncologist, endocrinologist and general practitioner began researching options, including a Facebook page for parents whose children have been diagnosed and treated for craniopharyngioma – a tumor so rare it is estimated to affect two people in a million. There they got in touch with a family from Australia who had a child treated with proton therapy at the UF Health Proton Therapy Institute. Encouraged by what they learned, they reached out to the experts at the Institute as they wanted Arjun to reach his maximum future potential.

They also looked into other proton therapy centers around the world, there are none in Australia, and were therefore confident in choosing the UF Health Proton Therapy Institute for Arjun’s treatment. “When you look at the medical research about craniopharyngioma, Dr. Danny is one of the world’s best. They are the leader in the field, and UF Proton has had the most success in treating children with craniopharyngioma,” said Prasanna.

They were connected with Amy Sapp, RN, BSN, director of pediatric nursing, and Daniel J. Indelicato, MD, director of the University of Florida pediatric radiotherapy program and associate professor of radiation oncology. “We had interaction with Amy and Dr. Danny before we got here. They sent the information to our doctor to quickly make a decision, and enabled us to process the Medical Treatment Overseas Program, or MTOP, paperwork. Their responsiveness was fantastic,” said Kalpana and Prasanna.

Within two weeks of approval by the MTOP, the family, including six-year-old daughter Avika, made the journey to Jacksonville arriving on March 11. Heather Oakley, LCSW, OSW-C, director of social services and pediatric oncology social worker, helped arrange housing and transportation making the experience easy. “They organized for us to get picked up at the airport. They took us directly to Walmart to shop. We had everything in hand,” Kalpana said. She was delighted to learn about the loan closet at the Institute where she found everything from a tea kettle to an X-box complete with games to entertain the children. “You don’t have to feel like you need to bring everything from home,” said Kalpana.

Prasanna said that because of the support network at the Institute, families should not be afraid of being out of their comfort zone if they need to travel for treatment, especially when you want to give your child the best treatment possible. “If the fear is you have to go to the other side of the world, it’s not daunting because the support network is here.” Kalpana added, “We actually felt like we were at home.”

Arjun has not had any acute side effects while having proton therapy. His neurological evaluation indicates that he is in the top percentile for his age with no loss of cognitive function, his parents said. He has Skyped with his teacher in Australia to keep up with his studies, and is preparing for a national level exam in May. Kalpana said he’s taking good care of himself, making sure to eat healthy foods and to exercise – his favorite is swimming the freestyle stroke and the backstroke – doing everything he can to get well. She said, “He’s an old soul in a young body. He’s a very motivated child with a fighting spirit, and UF Proton and their wonderful, amazing team have ensured Arjun receives the best.”

The family enjoyed participating in the many activities hosted by the social services team at the Institute, including Family Fun Night, support groups and outings to shows and theme parks. Jennifer Duncanson, MS, CCLS, child life specialist, was excellent and supportive and helped organize all tickets. Staying active and connected helped the family keep a sense of normalcy said Prasanna.

Kalpana said the art table in the lobby staffed daily by artist-in-residence Pamela Gardener was especially beneficial. Arjun said, “Everyone is very friendly. Pam entertains me and makes me happy every time I come here.” Kalpana and Avika also enjoyed the art table, and Kalpana said talking with Pam and doing the projects helped her to not be anxious or stressed.

“If you want to feel like you’re at home and get the best holistic treatment for the whole family, come to UF Proton,” said Kalpana.

australia

australia

 

Nurses Who Specialize in Proton Therapy and So Much More

nurses

By Theresa Edwards Makrush

The depth of experience and specialization at the UF Health Proton Therapy Institute in every department is a distinction that sets us apart from other proton therapy centers and radiation oncology practices in the region. In recognition of National Nurses Week (May 6-12), we highlight the expertise of our adult nursing team, which is led by Gail Sarto, RN, BSN, director of adult nursing.

According to Gail, all of our nurses are both clinical – meaning they provide the day-to-day care of patients receiving treatment – and do research – meaning they conduct follow-up with patients on clinical trials. Each nurse works as a team member with the physician and has a specialty in the anatomical site that is being treated. There are multiple bilingual nurses, and we have five languages represented on the team besides English.

With over 400 years of combined experience, the adult nursing team is comprised of 20 full-time nurses and medical assistants, five part-time nurses and medical assistants and one administrative assistant. Their ranks include five oncology certified nurses, two nurses who have master’s degrees in nursing and one nurse who is working toward a doctoral degree in nursing research.

Our nurses apply their specialized knowledge and skill with compassion. Patient care is tailored to the individual, and the nurse case manager helps patients manage symptoms or treatment-related concerns during and after treatment.

Excellent nurses have a unique capacity to care and to take action to help others. Both on the job and on their own time, our nurses exemplify compassion, professionalism and leadership.

Adult Nursing Team Interesting Facts

Our nurses have a wide range of experiences and interests. The following list illustrates some of their exceptional accomplishments.

A member of the team:

  • Has been a combat airborne medic and received the Meritorious Service Medal
  • Is a board member on the local American Cancer Society
  • Was a supervisor of a phlebotomy lab
  • Worked in Africa in the Peace Corp
  • Was the assistant nurse manager of the Shands ER
  • Was a manager of a turtle farm
  • Is a member of the National Disaster Response Team
  • Was a Wildland Firefighter
  • Was an owner of a long-term assisted living center
  • Was a member of the United Nations refugee Relief program
  • Was a labor and delivery nurse for over 10 years
  • Has yoga certification working with patients with a cancer diagnosis

Many team members:

  • Were medical assistants or certified nursing assistants before they became nurses
  • Have Intensive Care experience and one had a specialty in Neurology

Clinical Research Documents the Benefits of Proton Therapy

UF Health Proton Therapy Institute clinical research program

By Theresa Edwards Makrush

Over the past 12 years, the volume of published research about proton therapy has grown significantly, thanks in part to the clinical research program at the UF Health Proton Therapy Institute. Our UF Physicians lead research on proton therapy for cancers of the breast, central nervous system, head and neck, lung, pancreas, and prostate as well as lymphoma, chordoma and sarcoma. Since August 2006, we have opened 65 clinical trials. Of those, 36 have been completed and more than 174 articles have been published in peer-reviewed medical journals.

“The main purpose of the research is to document in a scientifically credible way the benefits of proton therapy,” said Nancy P. Mendenhall, MD, medical director and University of Florida professor of radiation oncology. “We think these benefits are going to be present in every single application: pediatrics, brain tumors, head and neck cancer, breast cancer, prostate cancer, lung cancer, pancreatic cancer.”  

One clinical trial that opened in 2006 and is ongoing is the Outcome Tracking Project, or OTP. Nearly all adult patients – 97% – have elected to participate and a majority of pediatric patients – 76%. This registry is an important source of data since it collects information from patients and from their medical records regarding their disease, treatment and side effects to see what effect the radiation has on them and their disease.

Much of the work in analyzing the data collected by nurse case managers and reported by patients is supported by the 11 staff members in the Research Services department. Led by Robin Cacchio, RN, CCRP, the team has a combined 40 years of proton therapy experience. They include four who are registered nurses, or RNs, and five who are certified clinical research professionals, or CCRPs.

>> Click here to learn more about clinical research at the UF Health Proton Therapy Institute.

Students Make Donation in Support of Classmate

donations

By Theresa Edwards Makrush

Last October, nine-year-old Hartley Georges had proton therapy for a rare brain tumor, medulloblastoma. The third grader at Orange Park Elementary School in Orange Park, Florida, kept up her studies with the help of her teacher Jennifer Allen, and kept up her spirits with the help of her schoolmates and the social services team at the UF Health Proton Therapy Institute. Hartley’s mother Michelle Georges said her teacher knew how much joy the art table brought to the entire family and organized the school’s student council holiday donation drive to collect art supplies for the Institute.

With a list from Pamela Gardener, artist-in-residence at the Institute, the entire school from Kindergarten through 6th grade chipped in to gather up enough art supplies to fill many large boxes to the brim with everything from acrylic paint to yarn. They also collected toys for the child life program and dropped them off to child life specialist Jennifer Duncanson, MS, CCLS. Michelle said the art program and the child life program helped the patients and their families connect with each other, relax, and feel more comfortable. “Pam was wonderful. We loved seeing her on Monday, Tuesday and Wednesday,” she said. “A smiling, familiar face and someone popping in and checking in each day was the joy that Jennifer Duncanson brought.”

The gift of art supplies and toys will help reduce anxiety and inspire creativity for patients and family members. “We are overwhelmed by the generosity of the Orange Park Elementary School and the people who made it happen,” said Pamela.

donations

donations

 

Executive Director Message

StuartKlein.pngI like to think of UF Health Proton Therapy Institute employees as family members, and there are many of our family members who are behind the scenes helping to make the Institute run smoothly. Last week we unfortunately lost one of our most highly valued family members. Jeff Rexford was a truly extraordinary man who led our team of on-site engineers, overseeing the maintenance of the proton equipment. Jeff served in this role as IBA’s site-manager since 2006. Thanks to his exceptional leadership, our proton therapy equipment was rarely out of service and was maintained to the highest standard. Jeff was recognized by our board of trustees in 2015 as the first recipient of the UF Health Proton Therapy Institute Excellence Award. His dedication was unquestionable. His expertise was undeniable. I am privileged and honored to have known Jeff as a friend, and I truly admire his many contributions to the Institute’s past and future success.

 

Stuart L. Klein

Executive Director

Caregiving: A Spouse Reflects on “Being Present” During Cancer Treatment

By Barb Hart

Hart

On November 15, 2018, my husband was diagnosed with esophageal cancer. I, of course, went online and this is one of the first sentences I saw: “Esophageal cancer is the sixth most common cause of cancer deaths worldwide.” It was not a good day.

Stew is fortunate. His cancer was caught early before he had any symptoms. Also, while we live on a boat and have sailed all over the Caribbean and across the Atlantic, we are currently living in St. Augustine and have very dear (and very smart) friends who work in medicine in Jacksonville. Consequently, we knew about the UF Health Proton Therapy Institute and were quickly referred to Dr. Michael Rutenberg, who has experience treating esophageal cancer and who is simply a wonderful person. (One of many wonderful people who work at Florida Proton.) With referrals to an oncologist and to a surgeon, we were off on this adventure.

On December 26, Stew had the first of 28 proton therapy treatments. In addition, every Friday we visited another facility where Stew had chemo. As I write this, we are waiting for tests prior to (we hope) surgery. It won’t be fun, but all of his physicians have been encouraging and we have reason to be hopeful.

What makes Florida Proton different? There’s a level of caring that goes beyond what happens in the treatment or exam rooms. There is an expectation that every single person at Florida Proton is pulling for both the patient and the caregiver and it slowly dawned on me that every single patient and caregiver we met felt they were all receiving special treatment, and we were. We were noticed. We may be part of a club that no one wants to join, but at Florida Proton that club is a team with a common goal.

The main lobby, the chimes, the art table, the puzzles, the Wednesday lunches, plus the attitude of the entire team at Florida Proton combine to provide a safe space for the patients and their caregivers to gather and chat and get to know each other. That interaction with other patients and caregivers is comforting and healing. It gives some of us a chance to help and others a chance to let go. Frankly, I had expected to take my laptop and get work done, but that’s not what happened. First, they don’t give out the Wi-Fi password at all and that’s a good thing. I didn’t need to write, or email, or text, or do research. I needed to be present for Stew, our fellow travelers, and myself.

I believe he was the only person undergoing treatment for esophageal cancer at that time and I know I caught a few pitying looks from other caregivers when they learned why we were there. That was difficult for me until I looked around and saw others who were more seriously ill than Stew, and still others who had traveled from other countries with a sick child. We are fortunate. In some way, we were all fortunate. Our team of two was supported by everyone who works at Florida Proton and by many of the other patients and caregivers. I hope we gave something back to them, as well.

Esophageal Cancer and Proton Therapy

By Theresa Edwards Makrush
Edited by Michael Rutenberg, MD, PhD, UF assistant professor of radiation oncology

Rutenberg

The esophagus, part of the digestive or gastrointestinal system, carries food and liquids from the mouth to the stomach. According to the National Cancer Institute and the American Cancer Society, most signs and symptoms of esophageal cancer occur when the disease is at a later stage and the cancer is more difficult to treat. Difficult or painful swallowing or worsening reflux symptoms are the most common symptoms of esophageal cancer symptoms, though they are also common symptoms of other benign diseases. Tests such as CT or PET scans, blood tests, endoscopy and biopsy are used to confirm and stage an esophageal cancer diagnosis.

Treatments often include chemotherapy, radiotherapy, and surgery. For many esophageal cancers, combined therapy (e.g., chemoradiation and surgery or chemotherapy and radiation) provides the best treatment. Proton therapy is an advanced form of radiotherapy that can deliver targeted radiation to the treatment area and minimize harm to surrounding healthy tissue. Because the esophagus is located adjacent to critical organs like the lungs and the heart, proton radiotherapy is ideally suited to deliver curative radiation to the cancer while reducing the dose to the heart and lungs.

Treatment planning studies and early patient outcomes reported by academic proton centers show very promising results with proton therapy in combination with chemotherapy. Among the advantages include reduced treatment related complications including reduced inflammation of the lungs (pneumonitis) and reduced damage to the heart. Reducing the impact of curative treatment on normal, healthy lungs and heart tissue may significantly improve the quality of life and long-term survival of esophageal cancer patients.

  1. Prayongrat A, Xu C, Li H, Lin SH. Clinical outcomes of intensity modulated proton therapy and concurrent chemotherapy in esophageal carcinoma: a single institutional experience. Advances in Radiation Oncology. 2017;2(3):301-307.
  1. Xi M, Xu C, Liao Z, Chang JY. Comparative Outcomes After Definitive Chemoradiotherapy Using Proton Beam Therapy Versus Intensity Modulated Radiation Therapy for Esophageal Cancer: A Retrospective, Single-Institutional Analysis. International Journal of Radiation Oncology Biology Physics. 2017;99(3):667-676

 

A Hollywood Ending for Five-Year-Old U.K. Patient

Lila

By Theresa Edwards Makrush

“The Force” was with five-year-old Lila Everest as she rang Aud’s Chime March 21 signifying her successful mission to complete 30 proton therapy sessions for a brain tumor. Lila’s mom Karen Steel arranged for Star Wars reenactors to be there on Lila’s chime-ringing day. Karen met the Squad 7 members of the 501st Legion at a February screening of the classic film Star Wars: A New Hope with the music score performed live by the Jacksonville Symphony Orchestra. Karen thought it would be the perfect way to help her daughter celebrate because Lila is a Star Wars fan.

According to Lila’s dad Tim Everest, her love for the Star Wars franchise began when she first watched The Empire Strikes Back. Since then, she has adored each of the movies and has become a huge fan. While in Florida, the family visited Disney World three times, the highlight each time being the Star Wars area of Disney’s Hollywood Studios. Tim recounted how Lila was delighted to interact with the characters, including a light saber battle with the villain Kylo Ren, whom she defeated, as well as one-on-one time with robot BB-8 and her favorite Chewbacca. 

With the help of child life specialist Jennifer Duncanson and the radiation therapists, Lila was able to do her treatment without daily general anesthesia. To help her cope, Lila’s parents would tell her Star Wars jokes and trivia to share with the radiation therapists who in turn would share other Star Wars facts. Even the mask used to help her head stay in position during treatment was painted with the face of the famed robot character R2-D2. “Everyone’s been so kind, the therapists especially,” said Karen. “Even though some days are quite dark.”

The family made a donation to the artists-in-medicine program in the name of the reenactors group as a thank you. Tim said the arts table was a welcome diversion for Lila, especially on days she didn’t want to go to treatment.

Lila will celebrate her sixth birthday at the end of March at her home in Brighton in the United Kingdom.

The Everest family with Star Wars characters

Lila with Kilo Ren and Chewbacca

 

Here Comes the Sun

The Artists-in-Medicine duo Barbara Fryefield Holmes and Pamela Gardener led patients in an exploration of the sun – its energy, warmth, and uplifting joy. The resulting artworks are currently on display in the patient luncheon room. Methods used to create the expressions of sunshine include wax resistance, acrylic painting, mono-printing and collage.

A few selections from the exhibit are shown below.

sun art

sun art

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About This Newsletter

The Precision Newsletter is an electronic-only publication that is distributed by email. Each issue is sent monthly to patients, alumni patients and friends of the University of Florida Health Proton Therapy Institute. As the official newsletter of the Institute, the content is compiled and prepared by our communications representative and approved by the editor Stuart Klein, executive director of UF Health Proton Therapy Institute. Special bulletin newsletters may occasionally be prepared when timely topics and new developments in proton therapy occur. If you would like to send a Letter to the Editor, please click here.

 

Keep In Touch

It is easy to stay in touch with us online at floridaproton.org . Look at the top right corner of the homepage for Facebook , Twitter and YouTube icons, click and join us in the social media conversation. Also on the right side of the homepage there is a button for VTOC Patient Portal . Click here to open your secure account, view your records, complete clinical trial questionnaires and communicate with your nurse case manager.

 

Knowing how you are feeling during and after treatment is essential to providing you the best care possible and contributes to the care of future patients.