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

Executive Director Message

StuartKlein.pngThere are now 32 operating proton therapy centers in the U.S. and more on the way. While this means a greater number of cancer patients may have a facility nearby, it also means patients need to look deeper at the quality of the centers offering proton therapy before deciding where to be treated. Just because the equipment is in the building doesn’t necessarily guarantee the center has the expertise and experience needed to provide high-quality proton therapy. The training and skill of the physicians and the entire clinical team can mean the difference in a patient’s outcome including quality of life following treatment. The UF Health Proton Therapy Institute has the most experienced proton therapy physicians and staff in the Southeast U.S. and is nationally accredited by the American College of Radiology. To read more about us and what sets us apart, I invite you to visit our website.

 

Stuart L. Klein

Executive Director

Positive Proton Moment: Firefighters Gather to Celebrate One of Their Own

By Theresa Edwards Makrush

When patients complete their course of proton therapy at the UF Health Proton Therapy Institute, they ring Aud’s Chime in The Players Lobby. Often their friends and family are there to help celebrate the moment along with fellow patients and caregivers. Applause, hugs, and smiles always accompany the sound of the chime.

A recent “graduate,” as patients who complete treatment are called, had an extraordinary group assembled for his chime-ringing day. Brian Kernohan, a lieutenant with 15 years of experience at the Jacksonville Fire and Rescue Department, was surrounded by an estimated 100 fellow firefighters and first responders. News crews from three local TV stations were there to capture the remarkable scene. (See news stories at news4jax, actionnewsjax and firstcoastnews.)

The outpouring of support was overwhelming, said Brian’s wife Katie. “I don’t know of any other company that is this supportive. We are grateful and overjoyed,” she said. “We love everyone here. They are such an encouragement.”

Brian said that two weeks before Thanksgiving he was suffering from intense head pain and went to the emergency room at a local hospital. After receiving the results of an MRI less than 24 hours later, the 36-year-old was told he needed surgery to remove a rare medulloblastoma brain tumor that is more typical in children under the age of 10. Following a successful surgery, Brian had 30 proton therapy sessions to target radiation in the area where the tumor was removed as part of a treatment plan that may also include chemotherapy.

According to Brian, having a positive attitude has helped him cope with treatment, along with the support of his family members and coworkers he thinks of as family. “My brothers really stepped up today,” he said as he looked out at the smiling faces lining the spiral staircase from top to bottom.

Christina Mershell Joins Staff As Business Development Coordinator

By Theresa Edwards Makrush

Alumni Robert Davis

The UF Health Proton Therapy Institute is pleased to announce the addition of Christina Mershell as its business development coordinator. In this newly created role, she will help promote awareness, build referral relationships and increase public interactions between the community and the Institute.

“We are excited to have Christina on board,” said Brad Robbert, director of operations. “Her dedication to building awareness of proton therapy and relationships with the medical community will further our mission to give cancer patients the best chance for cure with fewer side effects.”

Christina previously worked as the patient support administrator for the Texas Center for Proton Therapy in Irving, Texas, and was part of the team that launched the facility. While there, she established the patient intake and administrative services departments, then started the patient support program and conducted community outreach. Her previous experience includes work at the Ronald McDonald House in Jacksonville and more than five years at the UF Health Proton Therapy Institute on the administrative team.

Christina was inspired at an early age to choose an occupation in cancer care. “When I was in 7th grade, I did a project on pediatric cancers and resources available to children and their families,” she said. “I visited a Ronald McDonald House as a part of that project and knew then that I wanted to work with cancer patients.”

To reach Christina with potential community outreach or speaking opportunities, email her at CLMershell@floridaproton.org, or call (904) 831-4034.

Two New UF Studies Investigated the Use of Proton Therapy Among Patients With Locally-advanced, Non-small Cell Lung Cancer

By Bradford S. Hoppe, MD

Alumni Robert Davis

The standard-of-care treatment for patients with locally-advanced, non-small cell lung cancer, or Stage 3 NSCLC, is concurrent chemotherapy and radiation therapy, including proton therapy, as a potentially less-toxic, yet effective, treatment option. Clinical trials for Stage 3 NSCLC are open at the UF Health Proton Therapy Institute examining 1) hypofractionated (an accelerated course of proton treatments delivered over 3 weeks instead of 7 weeks) proton therapy with chemotherapy and; 2) proton therapy versus X-ray radiation. Unfortunately, these clinical trials have been difficult to accrue patients. Two new studies published by UF explored these issues surrounding the accrual.

In the first study, the researchers demonstrated the main barrier for enrolling patients into clinical trials was patient ineligibility, due to several medical issues making them “unfavorable,” including previous lung cancer surgery, poor lung function, weight loss, prior cancers, and other medical comorbidities. Additionally, it was shown that patients getting proton therapy for Stage 3 NSCLC at UF are older than typical Stage 3 NSCLC patients. This finding is likely due to older patients having Medicare, which covers proton therapy for lung cancer, while many private payers are not covering treatment cost—even on clinical trials.

The second study by the UF researchers looked at the outcomes of 90 consecutive patients treated with proton therapy at the UF Health Proton Therapy Institute.

The two-year Stage 3 NSCLC patient outcomes, published last month in Acta Oncologica, [1] suggest that favorable- and unfavorable-risk patients responded similarly to proton therapy. Patients were categorized as favorable-risk, people who had no other health issues, or unfavorable-risk, people who had one or more of the following risk factors:

  • age ≥ 80
  • stage IV cancer
  • weight loss >10% in 3 months
  • performance status ≥2
  • FEV1 <1.0 or oxygen dependency
  • prior lung cancer
  • prior lung surgery
  • prior 2nd cancer in the past 3 years
  • prior chest irradiation

After two years, the overall survival was 52% and 45% for favorable- and unfavorable-risk patients, respectively. Overall survival measures the percentage of people in the study who are still alive. “Most patients treated with proton therapy for Stage 3 NSCLC have unfavorable risk factors. These patients had similar outcomes to favorable-risk patients,” said researchers. “Enrollment in future clinical trials may improve if eligibility is less restrictive.”

In fact, these study results have led to a re-evaluation of clinical trials eligibility requirements and broadened them for patients with Stage 3 NSCLC.

 

[1] He J. Zhu, Romaine C. Nichols, Randal H. Henderson, Christopher G. Morris, Stella Flampouri, Dat C. Pham, Christopher L. Klassen, Vandana Seeram, James D. Cury, Lisa Jones, Lisa McGee & Bradford S. Hoppe (2019) Impact of unfavorable factors on outcomes among inoperable stage II-IV Nonsmall cell lung cancer patients treated with proton therapy, Acta Oncologica, DOI: 10.1080/0284186X.2018.1546060

Gifts That Keep On Giving

By Theresa Edwards Makrush

Alumni Robert Davis

Each December, The Players Championship Lobby at the UF Health Proton Therapy Institute is transformed into the North Pole to help children who are on treatment, and their families, experience the joy of the holiday season. And thanks to the generosity of two very special patient alumni and their families, the celebration is even more meaningful.

Hundreds of the gifts distributed to pediatric patients and their siblings during the party were donated by The Believe Foundation. The charity started out in 2014 when seven-year-old Carolina Parson who was on treatment for a brain tumor, and her sister Nicole opened up their piggy banks to buy presents for other children who were on treatment or in the hospital during the holidays. Their brother Michael and their parents Kris and Tabitha chipped in along with family, friends and others in the community. That year, and every year since, they have raised thousands of dollars and donated presents. In addition, The Believe Foundation has over the years delivered Mothers’ Day gift baskets to mothers of children who are on treatment, helped a girl who was on treatment during her birthday have a memorable encounter with a “princess,” and donated countless Band-Aids, grocery gift cards, iTunes gift cards, high chairs and other items that are needed by the pediatric program. They raise awareness of childhood cancer, collect donations and provide support to families. Some of their fundraisers include the Ride Down Childhood Cancer Rodeo, a car show and The Believe Foundation Invitational 5K.

The gifts at the “Polar Express” Party, as the annual celebration is called, are distributed to each child and their siblings by Santa Joe McGee. He started as a professional Santa Claus following his own treatment for cancer at the Institute. Inspired by the children he saw who were dealing with cancer and by his late brother who was the “original” Santa in the family, Santa Joe has been a welcome addition to the party since 2013. His wife Dawn has joined the fun, and now appears as Mrs. Claus. Not only do Joe and Dawn give their time, they also use his other professional Santa appearances to raise funds for the pediatric program. This year Joe and Dawn donated more than $16,500.

“The tremendous impact made by the Parson family through The Believe Foundation and Joe McGee through his Santa appearances cannot be overstated,” said Stuart Klein, executive director of the UF Health Proton Therapy Institute. “We are tremendously grateful for their generosity to help improve the proton therapy experience for our pediatric patients. And we are profoundly humbled to be part of Carolina’s and Joe’s cancer journey.”

Want to see what it’s like at the party? Take a look at this news clip from WJXT-TV 4’s River City Live.

Executive Director Message

 

StuartKlein.png"I was taught that the way of progress was neither swift nor easy." - Marie Curie

These words from one of the greatest scientists in history are worth remembering in our fast-paced, convenience-seeking world. They bring to mind the progress we’ve made in the field of radiation oncology and particle therapy. The advances in cancer treatment and cure cannot seem to come fast enough, but new treatments, technology, and discoveries are being made. Our own research is collecting more and more data on patient outcomes three, five and even 10 years or more after treatment. We believe that in time, as more studies are completed and published, we will discover the full potential of proton therapy to make progress in the fight against cancer.

 

Stuart L. Klein

Executive Director

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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.