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.

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.

I 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

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

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.

2. 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