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

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.