Brandon Bell was 12 years old in 2010 when he was diagnosed with a brain tumor. At the time, his mother Sarah was studying to be a radiation therapist and knew about the benefits of proton therapy. She chose to have Brandon treated with proton therapy at UF Health Proton Therapy Institute in Jacksonville, even though it meant being away from their home in Scotland. “I wanted him to have the best outcome and the best chance to survive and for the tumor to be destroyed,” Sarah said. Now, nearly seven years later, Brandon has no sign of cancer and studies electrical engineering in a Glasgow college. He considers Jacksonville his second home and his family says he’s even picked up a bit of an American accent.

See more of Brandon’s story here.

Since day one, UF Health Proton Therapy Institute has had an active clinical research program. As a result, the Institute has published more than 130 research articles in medical journals, documenting proton therapy techniques, some that have become the standard of care, and patient outcomes. With more proton therapy centers opening across the country, not only do more patients have access to the treatment, but also the Institute has more opportunities to collaborate on research.

Collaborative group clinical trials offer advantages for patients and researchers, said Amanda Durrance Prince, RN, BSN, CCRP, Assistant Director of Research Programs & Services. For patients it means access to cutting-edge treatment. For researchers it means advancing what is known about proton therapy at a more rapid pace. “Investigators have a larger pool of eligible patients and so clinical trials can enroll faster. Once enrollment is complete, researchers can analyze results, report their findings and move on to a new clinical trial that will answer the next question,” said Prince. 

But what is a clinical trial? Simply put, it is a scientific way to get answers to a specific question about an existing treatment. Some of the questions being asked in proton therapy clinical trials are: Can we reduce the number of treatments needed for effective treatment? Can we intensify treatment for better tumor control? Can we do less damage to normal healthy tissue? Can we improve upon other forms of radiation therapy?

The first joint clinical trial the Institute conducted was in 2009 with St. Jude Children’s Research Hospital, before it had its own proton therapy capability. Since then, the Institute has participated in multiple clinical trials with the renowned pediatric hospital and with other institutions such as MD Anderson and Mayo Clinic.  

Another type of collaborative research is cooperative group trials. There are several large national groups, such as the Radiation Therapy Oncology Group/NRG Oncology and the Children’s Oncology Group, that are funded by the National Cancer Institute. Its members are hundreds of clinical and laboratory investigators who combine their expertise in research. The Institute participates in several of these clinical trials, including the currently open-to-enrollment trial for patients with glioblastoma, an aggressive and the most common primary brain tumor, and another trial open for lung cancer patients.

More recently, proton therapy centers have started their own cooperative groups. The Institute currently participates in the Proton Collaborative Group and leads several studies. For example, Dr. Bradford Hoppe is the Principal Investigator for a proton therapy dose escalation lung cancer study.

So how does all of this benefit patients? It means that they will have the best possible treatment with the latest techniques for the best possible outcome. “At an academic center the standard of care won’t stay standard for long,” said Prince. “The investigators are always trying to come forward, move the treatment forward. Many researchers will look at the problem from different angles at the same time, it’s always moving forward.”

For a list of all open clinical trials, click here.

By Theresa Edwards Makrush

Thank you to all of our friends who helped to make the renovation of our Pediatric Recovery Room possible. The renovation is complete and we are thrilled with our new space. From all of us here at Proton, thank you so very much for your support.

Carlotta Cooley was diagnosed in 2008 with esthesioneuroblastoma, a rare cancerous tumor that occurs in the sinuses. Her surgeon told her that proton therapy was the only way to have radiation that would give her the best chance for cure and save her vision. She said the warmth and caring of the UF Health Proton Therapy Institute staff and other patients helped put her at ease and able to cope during treatment. Hear more of Carlotta’s story in this video.

African-American men are at higher risk for developing prostate cancer and they are more likely to die of prostate cancer than white men.

Some studies indicate that African-American men have worse quality of life and worse cure rates following treatment than white men. Questions about the efficacy and potential side effects of currently available therapies force men to make difficult choices about treatment when diagnosed with prostate cancer.

Proton radiation for prostate cancer treatment offers an alternative, innovative method of radiation treatment intended to lower the risk of prostate cancer treatments and side effects. A study by the University of Florida Health Proton Therapy Institute¹ concludes that African-American and white patients had similarly excellent results following proton therapy for prostate cancer. There was no difference detected between the two groups in their cure rates or in their sexual, urinary or bowel function following proton therapy.

In a large-scale study published in 2016,² researchers reported that 99 percent, 94 percent and 74 percent of men treated with proton therapy for low-, intermediate-, and high-risk prostate cancer, respectively, had no signs of cancer recurrence after five years of follow-up. Less than one percent in the cohort experienced serious gastrointestinal side effects and approximately three percent experienced serious urologic side effects.

Visit from Bahamian Consulate

(from l-r) Former Florida State Senator Tony Hill and Bahamian Deputy Consul General Sandra Carey dropped by recently for a tour led by Patient Services Director Bradlee Robbert.

While cure rates are a big factor when considering cancer treatment options, another big part of the conversation today is quality of life during and after treatment. With proton therapy, patients can expect excellent cure rates and little to no impact on their quality of life. For prostate cancer patients our five-year outcomes meet or exceed other treatment options for cure rates and quality of life. For breast cancer, lung cancer and lymphoma patients, early evidence suggests a reduced risk of damage to surrounding healthy tissue. While proton therapy is not the “magic bullet” cure for every cancer, it is certainly making it possible for many patients to beat cancer and to live life to the fullest.

Stuart L. Klein

Executive Director

By Theresa Edwards Makrush

Beth Klein had worked for decades at GE Health Care and became a GE Officer, in the area of medical imaging devices, including nuclear medicine and positron emission tomography, or PET, where machines use radioactive tracers to detect disease. “I became passionate about oncology and wanted to get closer to making a difference in people’s lives, which eventually led me to IBA and proton therapy,” said Klein.

Today she is president of IBA Proton Therapy, Inc., based in Reston, Va., with responsibility for IBA’s North American operations, and has been with the company for nine years. “I am blessed to be in a hi-tech, hi-touch business where we are working together with our customers and their patients to grow the market so that we can help even more cancer patients have a better quality of life during and post treatment,” said Klein.

IBA has installed proton therapy systems in more than half of all operating facilities worldwide. More than 50,000 patients have been treated on IBA systems; that’s more than all competitive systems combined. The UF Health Proton Therapy Institute was the first clinical system installed in the United States by IBA, after the prototype at Massachusetts General Hospital. The close working relationship that IBA has with the Institute has propelled the field of proton therapy forward. IBA engineers are on-site 24 hours, every day of the week, to ensure that the system is available and operating at maximum performance for patient treatment.

Last year, when Klein’s symptoms of hearing loss and acute tinnitus were linked to an acoustic neuroma, a rare benign tumor of the nerve sheath that lies along the acoustic nerve, she knew proton therapy could be the best possible treatment. In consultation with her doctors, she ruled out surgery, conventional radiation, or doing nothing because of the potential for unpleasant or serious side effects, both short and long term. Klein also wanted to make sure she could fully enjoy her future retirement years and not worry about the risk of secondary cancers down the road.

She turned to the physicians she knew and trusted at UF Health Proton Therapy Institute. “I chose UFHPTI because it offers an exceptional combination of clinical expertise and outstanding patient care,” she said. “After having gone through treatment, I am convinced that patient care is an important differentiator in outcomes. It is difficult to measure, but I believe that peace of mind and a caring, respectful, supportive environment plays a key role in healing.”

The following is excerpted from an email interview in which Klein describes more about her unique perspective as a proton therapy “insider” and now as a proton therapy patient.

Q&A with Beth Klein, president, IBA Proton Therapy North America

Q: What has your experience of proton therapy been like?

A: I have loved my time here. The entire team has been nothing short of extraordinary. Everyone on the UFHPTI team cares about you as the patient, from the parking lot attendant and receptionists to the executive team operating the center. The physician, therapist and nursing teams are ROCK STARS! They are smart, caring and fun to be with. It sounds hard to believe but I actually looked forward to my daily treatment because of them! I watched them with other patients, especially the children being treated, and was amazed at how skilled they are at what they do. As an aside, the Jacksonville area has been a pleasant surprise. You can't beat the weather and there is a lot of diversity in things to do.

Q: How is treatment impacting your everyday activities?

A: One of my main reasons for choosing proton therapy is that the side effects during treatment are minimal compared to other treatments. I continued to work full time while being treated. I also was able to exercise every day and played tennis three times a week.

Q: What advice would you give to someone who has just been diagnosed with cancer or to someone who is considering having proton therapy?

A: As a patient, it is important to do extensive research on your options before you decide what course is right for you. Don’t assume that your physician is aware of all of the options -- many times they refer you to what they know or have access to versus what they should know or perhaps don’t have access to. Proton therapy is not recommended for every cancer but studies indicate that 20-30% of patients who need radiation therapy could benefit from proton therapy. It’s important to ask the question, and if you are not comfortable with the answer, I would call the intake center at UFHPTI and ask them. They will connect you with a physician who has the experience and access to both conventional radiation therapy and proton therapy — so they are not biased. They will help you make an objective decision weighing the benefits and downsides to different approaches.

Q: What do you wish you had known before your treatment?

A: I wish that I would have known how easy it was going to be to go through treatment — it would have lowered my anxiety in the weeks before treatment. Even though I knew about the technology, I didn't have an appreciation for patient anxiety until I was a patient. Fortunately, the UFHPTI team was there to ease me through it. My anxiety was gone after the first treatment.

Q: Are there things you have learned as a patient that you’ll use in your work? Any suggestions for improvement you will give to others at your company?

A: Absolutely. As someone who works for IBA, the company that develops this technology, I wanted to use my treatment as an opportunity to learn how proton therapy centers operate from the inside out. As the world leader in proton therapy, we do a lot of things right, starting first and foremost with ensuring that the system is up and running most of the time so that every patient can be treated with minimal disruption to the schedule. I want to recognize the outstanding efforts of IBA’s service operations team at Jacksonville for all that they do behind the scenes to keep our system running reliably. They work 24X7 to ensure that our technology is optimized and available for patient treatment.

From a technology standpoint, IBA’s system is the most precise in the industry so I took comfort in knowing that our proton therapy system was treating the area that needed to be treated and not healthy tissue. That said, there are ways that we can make the system more user friendly for the therapists — making their jobs easier and improving operational efficiencies. From a patient perspective, I would like our development team to look for ways to reduce the noises a patient hears during treatment and perhaps find ways to make the table more comfortable. Fabric softener in the sheets does not cut it!

Q: What is on the horizon for IBA and proton therapy? What do you see for the future of proton therapy?

A: Our mission at IBA is to make proton therapy accessible to every cancer patient who can benefit from it. As I mentioned earlier, approximately 20-30% of all cancer patients who require radiation treatment could benefit from proton therapy. Today that actual number treated with proton therapy is less than 1%, so we have a long way to go to increase the awareness of the medical and patient community about the significant benefit of this powerful technology over other treatment alternatives. To move the needle on that measure, we are partnered with expert clinicians, such as the team here at UFHPTI, to research, expand and publish the studies which demonstrate those benefits. We are also looking for ways to engage the patient community, who are wonderful advocates for our technology, in getting the message out. I hope that every patient will become a proton therapy ambassador going forward and spread the word about this treatment option within their community.

As for the future, I am happy to share that the team at UFHPTI is currently partnered with IBA on upgrading their technology to include the latest state-of-the-art imaging and treatment modes. They will continue to be one of the most advanced proton therapy centers in the world.

By Theresa Edwards Makrush

Blue skies above and gently curving ribbons of blues and greens on the walls and floor welcome our youngest patients in the newly renovated recovery room. It is a serene, private oasis designed to calm the senses as families and the medical team tend to their children who are waking from anesthesia.

At the same time the environment welcomes imaginative play as children arrive and settle in for their daily proton therapy. A nook filled with toys and games allows patients, siblings and parents to relax and have fun together.

“The soft lighting and soothing color palette and design has transformed the space that was formerly sterile and clinical into a tranquil area that is child friendly, welcoming and calming,” said Amy Sapp, director of pediatric nursing. “The space has a positive impact on both the medical and psychosocial well-being of the children and their families by decreasing anxiety and stress related to the various medical procedures encountered on a daily basis as well as providing an area for play and distraction.”

The $250,000 renovation was made possible through the generous support of many donors. “Thanks to all who contributed in large and small ways through the UFHPTI For the Children Fund. And thanks to our volunteers, many who are alumni patients, who have championed this fundraising effort,” said Stuart Klein, executive director.

The pediatric program has many ongoing needs in order to maintain the exceptional level of care that has made it one of the largest pediatric proton therapy programs in the world. To make a donation to the pediatric program, click here. Or contact Molly Dworkin, director of development, mdworkin@floridaproton.org. 

A married couple from Sarasota, Florida, was the first to have proton therapy at the same time. Now, eight years later, they are both cancer free. To see more of their remarkable story, watch below:

UF Health Proton Therapy Institute radiation therapists are highly skilled medical professionals who are board certified and take continuing education classes to maintain state and national licensure. One of the many requirements to obtain the designation of a radiation therapist is they must become Basic Life Support (BLS) certified. BLS certification prepares an individual to administer CPR or other life-sustaining interventions in case a patient or coworker is nonresponsive. Recently, 15 of the Institute’s radiation therapists advanced their skills and added another layer of protection for pediatric patients by completing a 16-hour course in Pediatric Advanced Life Support (PALS).

“We’re one of the largest pediatric proton centers in the world. Parents can rest assured that everyone who has direct contact with their child has advanced training,” said Trevor Fleming, director of technical services and manager of the radiation therapists. “Less than one percent of therapists in the U.S. are PALS certified.”

PALS certification is beneficial because there are differences in the way life support is administered to children versus adults. Having the knowledge and skills to intervene quickly in the event of an emergency can make a big impact in the patient’s outcome. “Understanding how to rapidly react in a moment of time could mean the difference for someone’s child,” said Fleming. “We feel we have added another layer of protection for our pediatric patients, strengthening an already incredible team of professionals here. It’s one more confidence-builder for parents whose children require our unique technology.”

Physicians and nurses are with patients as the first line of defense, and now, PALS-certified radiation therapists are an added safety net. “This is different than other proton centers. It’s one more step we’ve made to better the level of care here,” said Fleming.

By staff

UF Health Proton Therapy Institute has a new teaching tool designed especially for children who need proton therapy, an advanced type of radiation treatment for cancer. Proton U is a customized app designed to aid children before proton therapy begins by familiarizing them with what to expect during treatment.

Children are often anxious and fearful of the unknown when it comes to their medical treatment. Studies show that we can reduce anxiety and teach coping skills to children through medical play, hands-on learning and pre-treatment tours. The app is a unique way to combine children’s natural curiosity and technology to improve the medical treatment experience. 

“We have had tremendous success with our child life program over the last six years, reducing the number of children between ages 5-7 who need daily sedation for treatment by 40 percent,” said Danny Indelicato, MD, Director of Pediatric Radiotherapy, UF Health Proton Therapy Institute, and Associate Professor, UF Department of Radiation Oncology. “Thanks to Kim Todd, Child Life Specialist, and the collaboration of Flagler College and the UF Department of Biomedical Engineering, we think the app will help us further reduce the number of children needing sedation. It will also serve as an educational introduction to proton therapy for all our young children, something they can download and review even before they travel to Jacksonville. We have also created Spanish and Norwegian language versions.”

Kim had the idea to develop an app for the iPad that patients could use with her during sessions and on their own at home. She contacted her alma mater, Flagler College, to ask for help, and they agreed to take on the project as a community service. More than 30 Flagler College students designed the graphic art for the interactive game/storybook written by Kim. Students volunteered to be the recorded voices of Jefferson, the Proton U mascot, and various medical team characters introduced throughout the game.

A UF Health Proton Therapy Institute patient with Microsoft contacts connected Kim with a programmer who initiated the app’s development, and a UF engineering faculty member Stephen Arce, PhD, programmed Proton U with music and animation features that brought the app to life. “I have been programming software and games for several years in my spare time, and this is a great opportunity to help do something bigger,” said Arce. “Making apps for kids to introduce and educate them about therapy is one part of the role software can play in medicine in the future. As devices get ‘smarter,’ we will see more emphasis on interactive software to help patients learn/participate and give physicians better information. There is also an opportunity for big data sciences as we collect and analyze statistics about patient care and move toward a quality-based healthcare system.”

The app design was recognized by the Florida Campus Compact Awards, winning second place in the statewide 2015 Campus Community Partnership category. The Florida Campus Compact is a network of about 60 colleges and universities in Florida who are committed to community service that enhances students’ education, workforce readiness and civic mindedness. The app design made the shortlist for an international recognition by the Interaction Design Association in its “Empowering” category for “helping people to do things they otherwise couldn’t do.”

By staff

We’ve had a lot of “firsts” in our first decade. Here are a few worth noting that took place in January:

January 2007 – Began treating cancers of the central nervous system, brain and chordomas.

• Performed the 1000^th proton therapy treatment less than six months after opening
• Opened the second gantry treatment room

January 2012 – Published an article in the journal Cancer that reported excellent quality of life for men 60 years old and younger treated with protons for prostate cancer. Erectile Function, Incontinence, and Other Quality of Life Outcomes Following Proton Therapy for Prostate Cancer in Men 60 Years Old and Younger

January 2012 – Published an article in the International Journal of Radiation Oncology Biology Physics reporting that patients treated with protons for prostate cancer had excellent tumor control and minimal side effects.

Mendenhall NP, Li Z, Hoppe BS, Marcus RB Jr, Mendenhall WM, Nichols RC, Morris CG, Williams CR, Costa J, Henderson R. Early outcomes from three prospective trials of image-guided proton therapy for prostate cancer. Int J Radiat Oncol Biol Phys. 2012 Jan 1;82(1):213-21. Epub 2010 Nov 17. PubMed PMID: 21093164.

January 2013 – Dedicated Aud’s Chime

January 2016 – Announced expansion and upgrade plans

By staff

The 26.2 with DONNA: The National Marathon to Finish Breast Cancer has become a staple of the annual events calendar in Jacksonville for runners and spectators alike. Held each February in Jacksonville Beach since 2008, the marathon is dedicated to raise funds and awareness for breast cancer treatment and research.

Part of the marathon weekend is a health and fitness event, the DONNA Expo, at the Prime Osborn Convention Center, 1000 Water St., Jacksonville. The free expo is February 10 and 11 and includes breast cancer health information booths, fitness and running attire vendors, food and nutrition displays and more. UF Health Proton Therapy Institute will have a booth to distribute information about proton therapy for breast cancer. It is a great opportunity to spread the word about proton therapy and to support the cause to finish breast cancer.

By Theresa Edwards Makrush

People from all walks of life find a home away from home at Third & Main, a short-term patient housing complex in Jacksonville’s historic Springfield community. Fully equipped with every modern convenience, the 35-unit complex is within two miles of the UF Health Proton Therapy Institute, an easy commute to daily treatment. Residents are almost all proton therapy patients and quickly become neighbors who look out for each other, socialize together and often become lifelong friends after their six- to eight-week stay.

The reason Third & Main quickly feels like home, residents say, is because of the property manager Melissa Burhans. “She’s got a really dynamic personality. The way she treats people, she’s interested in their lives. She has a passion for helping people,” said Scott Drosos of The Villages, Fla., who stayed at the apartments while he was having proton therapy for prostate cancer.

In fact, helping people and creating a comfortable, welcoming place for them, Melissa says, is the best part of her job. “That’s the most important part of my job is the personal connections,” she said. “If it means coming in a little early or staying late to do paperwork I don’t mind. As long as I have time to sit and have morning coffee and pastries with people and get to know them and introduce them to other people who have the same interests, that’s what’s most important.”

If it feels to patients like Third & Main is part of the Institute, that’s intentional. Melissa said she takes her cue from watching Bradlee Robbert, patient services director at the Institute, and the way he interacts with people in the lobby and during the Wednesday patient luncheons at the Institute. “Even though we’re separate organizations, we partner with the Institute so that the experience meshes,” she said.

According to Judy Taylor Holland, community outreach coordinator at the Institute, Melissa has matched the experience successfully. “Melissa is far more than a property manager. Her devotion to our patients and their comfort is demonstrated in the many small and large deeds she takes on for our patients,” Judy said. “She has accompanied many who have needed a trip to the grocery store for supplies in helping to set up their new home. Melissa is known to offer extra activities for patients and their families like game nights, art walks and special dinners. Most recently, she cooked Thanksgiving dinner for 40 residents of Third & Main, knowing that they would be away from home, family and friends during the holiday. Christmas will be a repeat with her adding toys for the children collected through her efforts with the community and Toys for Tots.”

Judy went on to say, “Wednesday patient lunches always include a patient testimonial about the Third & Main experience. By the time these individuals leave our Institute, Melissa has found a place in their hearts that will last for a very long time.”

There are many patients who consider Melissa their friend and stay in touch with her, including Scott Drosos. He has invited Melissa and many of the other friends he made while at the Institute to attend his wedding next April. “I was single, going through cancer alone. If it wasn’t for Melissa I would never have gotten as involved as I did and met so many people and made so many friends. That’s what made the difference for me.”

By Judy Taylor Holland, co-chair

Bright and early on Monday morning, November 14, 162 eager golfers teed off on both the Slammer & Squire and King & Bear courses located within the World Golf Village, St. Augustine, Fla. This 12th year for the golf tournament is thankfully a wrap although it was not without a major interruption. 

On Friday, October 7th, the weekend of the planned tournament date, Jacksonville was in the  pathway of Hurricane Matthew. Luckily we were spared a direct hit, and while some flooding and wind damage occurred along the coast, our facility made it through just fine. This was the first time in the history of the tournament that weather was a critical factor and we might not be able to execute the tournament as planned. How could we complete 2016, the year we would celebrate the 10-year anniversary of the Institute, without the much-anticipated golf tournament?

After some intense debate and conversations with our sponsors, the 12th Annual Play Golf. Fight Cancer.^® Classic was rescheduled. Unlike the previous year where a dinner preceded golf on the night before, it would be a one-day event of golf, silent auction and recognition of our 10-year anniversary.

During the awards reception following play, Robert Nelson, a proton alum, shared his experience as a prostate cancer survivor. Jeff Prosser, 1010XL sports radio and a graduate of the University of Florida, generously volunteered his time to become our master of ceremonies for the afternoon. There was plenty of food and fun stories of the morning on the greens. Obviously, it was pretty exciting to shoot a golf ball with an air cannon 280 – 320 yards for an opportunity to win a free vacation trip for closest to the pin.

The Play Golf. Fight Cancer. Classic was created over a decade ago specifically to fund the continuous research that is being conducted by the medical staff. Happily, the 2016 tournament turned out to be a banner year with net earnings of over $200,000 dedicated to our clinical research program.

We would like to thank and recognize our anniversary sponsors, Dot Decimal, IBA and the Shepherd Agency. Not only have they contributed to this enjoyable event, they have also helped us become the world-leading proton center we are today. Thanks also to the many other supporting and dedicated sponsors and a hard-working and talented golf committee: Stuart Klein, Dr. Nancy Mendenhall, Melissa Burhans, Molly Dworkin, Jenna Bryan Hobkirk, Bradlee Robbert, Nancy Seely (co-chair), Jason Smith, Melissa Spearman, Ashley Williams, Buzzy Northen and Laura Press.

By BeckyLynn Schroeder

As a registered nurse, Peter Lowry knew his symptoms meant something was wrong with his liver.  He never expected to hear that the liver problem was actually caused by a tumor in his pancreas blocking the biliary duct. Peter first underwent surgery, but because of the location of the tumor it could not be removed entirely. His surgeon gave him months to live. But Peter sought a second opinion, which led him to a clinical trial conducted by Dr. R. Charles Nichols, Jr., associate professor of radiation oncology at the UF Health Proton Therapy Institute. Peter became one of the first pancreatic cancer patients at the Institute to have an aggressive treatment combination of proton therapy and chemotherapy. Peter’s pancreatic cancer was already at a stage three and classified as “incurable,” however he was able to tolerate the amount of radiation needed to kill the cancer cells because of the targeted precision of the proton beam that spared healthy surrounding tissues. Today, Peter is living without any detectable cancer, has celebrated one more year of life and looks forward to many more.

Hear more of Peter’s story in this video.

By BeckyLynn Schroeder

Cancer Free. That is the hope of many people that walk through our doors every day. Thanks to the support of many, the UF Health Proton Therapy Institute continues to advance cancer treatment and research that changes lives for the better.

November 15 is recognized as National Philanthropy Day® and we’d like to celebrate by thanking the many cancer survivors, family, friends and others who support our mission to offer cancer patients the best chance of cure with the least chance of side effects.

Every philanthropic act – big or small – has an enormous impact on the program and spirit at the UF Health Proton Therapy Institute. Some of our young alumni have been busy “paying it forward,” giving to others in response to kindness shown to them, to spread the hope of a cancer-free future:

Rebecca Duff came to the UF Health Proton Therapy Institute from Scotland. She was diagnosed with an ependymoma brain tumor at 20 years old. Prior to her diagnosis, Rebecca and some friends formed a group and began organizing fundraising activities for a friend receiving cancer treatments. When Rebecca found out about her brain tumor, the group was keen to continue the fundraising efforts to give back.

“I wanted to do something to give back to the UF Health Proton Therapy Institute because it was a fantastic place that made me feel safe and welcome while undergoing treatment,” Rebecca recalls.

Exploring her adventurous side, Rebecca and her friends had been raising money through various activities, including skydiving, to give back. They also created and sold wrist bands and held a coffee event. Earlier this year, Rebecca handed over a big check for £650 (or approximately $805 US dollars) representing the money she had raised to help others like her receive cancer treatment.

Rebecca and her group of friends are continuing their passion to help people who are going through similar experiences and will continue to hold fundraising events, including a masquerade ball and ladies’ night event.

Jake Teitelbaum was diagnosed with refractory Hodgkin’s lymphoma at 21. He battled through rounds of chemotherapy and a stem cell transplant then, shortly after his 22^nd birthday, Jake underwent proton therapy. Throughout treatment, Jake met other people dealing with cancer that did not have as many resources as he did. While a chronic illness takes a toll on a person’s body, Jake believes it shouldn’t also have a debilitating impact economically. He came up with an idea – a sock business called Resilience – that will help fund cancer treatment expenses for people in need. A portion of the proceeds goes directly to a specific financially-strapped patient Jake has partnered with. Resilience was officially launched in September of this year and has already raised more than $800 for Resilience’s first recipient, a 14-year-old boy who has non-Hodgkin’s lymphoma. Jake says that he is excited to launch another custom sock design and will announce the second recipient this month. As Resilience grows, Jake also plans to branch out and help people with other illnesses in addition to cancer.

As Jake says, “The Resilience project is about fighting to become stronger. Stronger in body. Stronger in mind. Stronger in spirit. It’s about embracing terrible circumstances to learn and grow as a person. It’s about sending support, love, and of course, awesome socks, to someone who needs it.”

Nia Taylor-Jones, a 13-year-old from Wales in the United Kingdom, stopped by for a visit the week before Halloween to deliver sacks brimming with candy. She and her family were vacationing in Orlando and on their last day made a special trip to Jacksonville to deliver the treats along with a plaque of appreciation. She remembered the fun Halloween activities for children while she was on treatment for an orbital tumor in 2012. Now, four years later, she wanted to give something back and show her appreciation for all the UF Health Proton Therapy Institute has meant to her.

Nia, her grandmother Lynette Goddard, and her uncle James Taylor-Goddard presented a plaque to Daniel Indelicato, MD, associate professor of radiation oncology at UF Health Proton Therapy Institute and director of the pediatric program, Amy Sapp, RN, director of pediatric nursing, and Kimberly Ely, child life specialist. The plaque reads: “Nia Taylor-Jones & her family would like to dedicate this with love & affection to our friends at the Jacksonville Proton Therapy Institute for making a difficult time so easy to deal with.”

To learn more about how to support the UF Health Proton Therapy Institute, please visit: www.floridaproton.org/news/give-support.

By BeckyLynn Schroeder

Exceptional health care is the result of a team of dedicated and knowledgeable professionals working together toward a common goal. In our case it is the goal of a cancer-free future with minimal chance of side effects.

In honor of National Radiologic Technology Week® (Nov. 6-12), we would like to recognize and thank all of the radiologic technologists at the UF Health Proton Therapy Institute for their dedication and passion, making this hope a reality for our patients and  alumni. The designated week raises awareness of the important role medical imaging and radiation therapists have in patient treatment and care. They are the ones responsible for operating the equipment, for preparing and positioning patients for each treatment and scan, and for helping patients feel at ease during the procedures.

Throughout the week, UF Health Proton Therapy Institute physicians and staff show their appreciation through a variety of ways to help the therapists know how important they are to the Institute and to the profession.

The UF Health Proton Therapy Institute is proud to honor and recognize the incredible work each staff member makes in the lives of our patients and alumni.

In spite of Hurricane Matthew grazing the Jacksonville coast Friday, Oct. 7, we endured. Many patients and staff evacuated their homes and dozens of adults and children sheltered at our facility. Thankfully, the storm was far enough offshore to keep the strongest winds from reaching us. Flooding was not an issue at the Institute, but areas at the beach, including St. Augustine, experienced storm surge. We were back to business-as-usual on Monday, Oct. 10. Several patients completed their course of treatment that day and rang the chime. To all who went above and beyond the call of duty to ensure our patients’ needs were met with as little disruption as possible, thank you.

By Theresa Edwards Makrush

Pediatric cancer patients have been a top priority at the UF Health Proton Therapy Institute since the very beginning. In fact, one of the first people hired in 2006 was the Director of Pediatric Nursing Amy Sapp, a nurse who has dedicated her career to caring for the most vulnerable children. She has helped thousands of people in her career – from babies born prematurely to children at the end of life – and as the primary pediatric nurse at the Institute she has cared for more than 800 children with cancer.

One of the most significant milestones reached in the first decade of the Institute is growing the pediatric proton therapy program into the largest worldwide. On average, 25 children are treated daily. Amy credits the phenomenal nursing staff, physicians, radiation therapists, social workers and all the staff for this success. Daniel J. Indelicato, M.D., Director of the Pediatric Program, credits Amy. “I do not know anyone who works harder than Amy. Her effort and hard work are the primary reason for the success of the UF program,” he said. “She is the irreplaceable glue that holds our program together.”

Dr. Danny describes her as an inspiring leader who is smart, organized, professional and devoted to her patients. “I would say for the past 10 years, Amy has never taken an hour off work. By that I mean, even during the weekend, vacation, or evening, she will take responsibility for critical issues that arise. She does this because she cares immensely about her patients.”

As the pediatric program grew and eventually became the primary proton therapy provider to patients from the United Kingdom, Amy realized quickly that changes were needed to handle the highly complex cases. She streamlined the patient intake process, placing the pediatric nurse as the first and main point of contact for families. Parents rely on the nurse to manage all aspects of the referral, approvals, medical records and care. Amy acknowledged it is more work for the nurses, but it is worth it for the benefit to families. “I didn’t want parents to have that burden. It makes coming for treatment easier for families because they already have a relationship with their nurse case manager,” she said. “What would you want if it were you?”

Dr. Danny agrees that Amy’s leadership in merging the intake and nursing roles has been a game-changer for the pediatric program and one of many of her contributions to the success of the program. Putting patients first is fundamental. “Her most important overall contribution is represented in the meaningful connections she makes with our patients and families,” he said. 

The relationships with patients and families are the best part of the job, said Amy. She finds it especially rewarding when patients come back for not a follow up visit but just to visit. The patients also form lasting friendships with each other and many stay in touch, take vacations together and spend holidays together. Amy said, “Playing a small part in that is rewarding.”

Mark your calendar to attend the next in our series of health fairs. Join us November 17, 2016, from noon to 4 p.m. at the DoubleTree by Hilton hotel on the Jacksonville Riverfront. Admission is free and includes food, games and prizes, massages, health screenings and information on living a healthy lifestyle.

“Sometimes men have to wear gowns,” says chief meteorologist Tim Deegan of First Coast News in a new promotion called Men Wear Gowns, Too. Early detection is an important part of success in treating and curing many kinds of illness. It’s a reminder to men to take an active role in their health by having regular preventive screenings for prostate cancer and other health conditions.

We are partnering with First Coast News to get the word out that health screenings are not just a concern for women, it’s important for men, too. Dr. Nancy Mendenhall, UF Health Proton Therapy Institute medical director, was interviewed about men’s health and prostate cancer screenings. She said men need to take responsibility for their health and actively seek the best treatment options for their diagnosis.

Dr. Mendenhall went on to explain that prostate cancer when caught early has the best chance for cure. With proton therapy, the five-year prostate cancer patient outcomes are excellent according to a UF Health Proton Therapy Institute study published earlier this year. When looking at the five-year results of more than 1,300 men, the cancer-free rates are 99 percent for low-risk, 94 percent for intermediate-risk and 74 percent for high-risk prostate cancer.

Look for Dr. Mendenhall’s interview on First Coast Living, broadcast on WTLV NBC 12/WJXX ABC 25, Friday, Sept. 16 or online at firstcoastnews.com.

It has been a wonderful decade full of growth, happiness and life-changing health care for the UF Health Proton Therapy Institute. To keep the excitement and festivities going, our patients have been hard at work creating another art gallery exhibit to mark the occasion. The focus of the exhibit – words. Something as simple as a kind word can make a positive imprint on someone’s life forever. Words have power and patients are using them to inspire, support and demonstrate joy for our anniversary celebration. The new exhibit, "Words of Celebration," is now up for viewing.

We’d love to hear what words of celebration you have to inspire, support and celebrate. Share your word with us on our Facebook (@FloridaProton) or Twitter page (@UFProtonTherapy).

Join the fellowship and fun of the 12th Annual Play Golf. Fight Cancer.^® Classic. UF Health Proton Therapy Institute’s primary fundraising event is Oct. 9-10, 2016, at The World Golf Village, St. Augustine, Fla. There’s still time to register to play and to sponsor the annual tournament and festivities that provide crucial support for research efforts at the UF Health Proton Therapy Institute.

The event kicks off with a dinner and silent auction on Sunday, Oct. 9. For all who register as a player, you automatically have a ticket to the dinner. However, tickets to attend just the dinner and silent auction are also available for those who do not wish to play golf.

The golf tournament will be played Monday, Oct. 10, on both of the official courses of the World Golf Hall of Fame. The King & Bear is a course that has the distinction of being the only design collaboration between namesakes Arnold “The King” Palmer and Jack “The Bear” Nicklaus. The Slammer & Squire is a championship resort course designed by Bobby Weed with consultants Sam “The Slammer” Snead and Gene “The Squire” Sarazen.

Your support ensures the continued growth of our clinical research program, gathering the data that is necessary to advance the understanding of proton therapy. A special thanks to our anniversary sponsors IBA, .decimal and Shepherd.

Please join us in support of proton therapy research and register today at www.playgolffightcancer.org.

Or to donate or support the cause in some other way, if you are not available for the event, please contact the UF Health Proton Therapy Institute:

• Phone: (904) 588-1401
• Email: playgolffightcancer@floridaproton.org

Our anniversary slogan – “10 Years. One Mission. Cancer Free.” – is a motto we live and breathe every day at the UF Health Proton Therapy Institute. It represents the power of protons and the hope that is felt throughout the halls.

From our first patient in August 2006 to the patients going through treatments today, thousands of lives have been impacted by proton therapy. As we look back on the accomplishments of proton therapy and how the UF Health Proton Therapy Institute has been at the forefront of a revolution in radiation oncology, none of it would have been possible without all of you.

I want to personally say thank you to our superb staff – for providing expert treatment in a way that takes the whole person into account. Thank you to the various research teams – for your commitment to the advancement of proton therapy. And a big and special thank you to our patients, alumni and caregivers, whom we have come to regard as an extension of our family – for your unwavering support throughout the past 10 years.

I encourage you to visit www.floridaproton.org to learn more about important milestones, research and other advancements in proton therapy over the past 10 years at the UF Health Proton Therapy Institute.

Here’s to another 10 years and more,

Stuart L. Klein

First patient treated enjoying life after the cure

By BeckyLynn Schroeder

The past 10 years have been eventful for 64-year-old Ben Smith. He and his wife, Lisa, have raised two children, restored a 36-foot sailboat, spent months sailing around the Bahamas and are planning other trips around the world. Enjoying life has always been a priority for Smith, even after he was diagnosed with prostate cancer in 2005.

Smith, a now-retired aerospace engineer, did his own research on prostate cancer treatment after his urologist had suggested a radical and potentially life-altering treatment. His search led him to the UF Health Proton Therapy Institute, then still under construction, and he would become the first person treated at the facility. For background on Smith’s diagnosis and treatment, read a previous article, “Moving on from prostate cancer.” 

“You have to be your own advocate. Many doctors recommend the treatment they know best – but that might not mean it’s the right path for you to take. Of course, the end game is to get rid of cancer. But when you come out on the other side, you also want to have a decent quality of life.”

“When I was first diagnosed, I was scared. I was a young man, had teenage kids, a beautiful wife and I felt like I had just received a death sentence. But, it’s not. It’s a curable disease and proton therapy allows many people to keep living and not be straddled with devices and diapers,” said Smith.

Smith recalls that he had no reservations about waiting a year for the UF Health Proton Therapy Institute to open for treatment as he felt it was his only viable option. When he arrived at the treatment facility the first day it was open in August 2006, to him it felt like they had built the facility just for him.

“You don’t just have a doctor and a therapist, there’s also a team of physicists, computer programmers, software engineers, hardware engineers and company representatives all looking at you and your little walnut-sized prostate, in my case. I always felt that I was well taken care of and the staff was so dedicated and simply unbelievable from day one,” Smith notes about his initial impressions of the UF Health Proton Therapy Institute. “I went through 29 treatments and never felt like I was over radiated and I never got burned. I also did not and do not suffer to this day from impotency and incontinence – common side-effects from more conventional, radical forms of prostate cancer treatment.”

“My doctor had said to me that I can’t say that I’m ‘cured’ from cancer for at least five years after treatment. Well, it’s 10 years later and I’m proud to say that I’m cured. I’ve beaten prostate cancer and, thanks to proton therapy and the UF Health Proton Therapy Institute, I’ve been able to maintain a fairly active lifestyle and just live a regular life.”

Smith and his wife are currently visiting their adult children in the western U.S. and will be spending a few months in New Zealand. They have closed the book on cancer and are enjoying life to the fullest.

Join the fellowship and fun of the 12th Annual Play Golf. Fight Cancer.® Classic , UF Health Proton Therapy Institute’s primary fundraising event, is Oct. 9-10, 2016, at The World Golf Village, St. Augustine, Fla. There’s still time to register, volunteer and/or sponsor the annual tournament and festivities that provide crucial support for research efforts at the UF Health Proton Therapy Institute.

The event kicks off with a dinner and silent auction on Sunday, Oct. 9. For all who register as a player, you automatically have a ticket to the dinner. However, tickets to attend just the dinner and silent auction are also available for those who do not wish to play golf.

The golf tournament will be played Monday, Oct. 10, on both of the official courses of the World Golf Hall of Fame. The King & Bear is a course that has the distinction of being the only design collaboration between namesakes Arnold “The King” Palmer and Jack “The Bear” Nicklaus. The Slammer & Squire is a championship resort course designed by Bobby Weed with consultants Sam “The Slammer” Snead and Gene “The Squire” Sarazen.

The annual fundraiser has raised more than $1 million that has directly impacted lives through the groundbreaking research being conducted daily at the UF Health Proton Therapy Institute. Over the past decade, in pursuit of the most accurate, effective practices and treatment, the Institute has conducted more than two dozen clinical trials and numerous peer-reviewed studies, including a 5-year study on prostate cancer outcomes. To date, more than 6,400 patients from 50 states and 30 countries have received proton therapy at the UF Health Proton Therapy Institute and we currently have 21 active clinical studies. Importantly, approximately 98 percent of our patients participate in a registry study to track outcomes following treatment and 31 percent of patients are enrolled in clinical trials, while the national average of clinical trial participation is 3 percent.

Your support ensures the continued growth of our clinical research program, gathering the data that is necessary to advance the understanding of proton therapy.

Please join us in support of proton therapy research and register today at www.playgolffightcancer.org. To donate or support the cause in some other way, if you are not available for the event, please contact the UF Health Proton Therapy Institute. Phone: (904) 588-1401 Email: playgolffightcancer@floridaproton.org. 

When: Saturday, August 27

Where: The Jacksonville Landing

Lung cancer is the number one cancer killer in America, and unfortunately, it's on the rise in women. On Saturday, August 27, at 8 a.m. at the Landing, the UF Health Proton Therapy Institute is participating in the third annual LUNG FORCE Run/Walk 5K. The Run/Walk raises awareness of lung cancer and other lung diseases. To show our unity in the battle of lung cancer, we invite you to participate for free. In addition, each participant will receive a UF Health Proton Therapy Institute t-shirt to wear the day of the race.

There’s still time to register. Signing up is simple and free for all patients, alumni, families, friends and staff. Follow the steps below: 

1. Log onto www.lungforce.org/runwalk
2. Type the zip code, 32206, in the city search.  Your computer will automatically go to a new page
3. Click on LUNG FORCE Run/Walk – Jacksonville, FL-Jacksonville Landing
4. Click the “Register” icon
5. Click “Join Team”
6. In the “Team Name” box, type UF Proton and search for a team
7. Click “Join” to join Team UF Proton
8. Continue to follow the steps
   1. Repeat process for all new participants
9. Use the code UFPROTON for free registration for all participants
10. Please feel free to make a donation to LUNG FORCE
11. After you complete your registration, email Brad Robbert brobbert@floridaproton.org with the name and shirt size for everyone you registered.  

Apprehension. Fear. Uncertainty. These are common feelings for patients and their families, whether they live nearby or are far from home. Easing anxiety can improve patients’ and caregivers’ ability to cope with treatment. It is why we have intentionally created opportunities for people to participate in healthy activities that relieve stress such as art projects, yoga and social gatherings. I invite you to read in this issue about one patient’s experience overcoming fear and also about a research study that analyzes the experience of pediatric patients and their families from the United Kingdom.

Sincerely,

Stuart L. Klein

As part of the 10-year anniversary of UF Health Proton Therapy Institute, we’re throwing three health fairs to celebrate your continued health and the advancement of proton therapy. Each event will include fun games and prizes, massages, information on living a healthy lifestyle from a number of community resources and UF Health representatives, and how and why clinical research plays an important role at UF Health Proton Therapy Institute. Each event will have opportunities to raise support for these research efforts.

All alumni, family and friends are invited to attend. The first health fair will take place Thursday, September 15, from 12 – 4 p.m. at the DoubleTree by Hilton hotel on the Jacksonville Riverfront.

Other health fairs are scheduled for November 17, 2016, and January 26, 2017.

By BeckyLynn Schroeder

Traveling to a different town, state or even country to receive treatment for their child’s cancer is a difficult experience for any parent. Extra pressure is on parents who must navigate unknown waters in an unfamiliar place often without their support system at home. Recently, published research shows that while traveling to receive proton beam therapy is not without difficulties, the programs and resources available in the United States are clearly helpful in facilitating the adjustment and turn what could be a negative experience into a positive one.

The article “The ‘radiation vacation’: Parents’ experiences of traveling to have their children’s brain tumors treated with proton beam therapy” discusses insights from research on the experiences of parents from the United Kingdom whose children have had brain tumors treated with proton therapy in the United States. Data analyzed from participating parents, many of whom brought their children to the UF Health Proton Therapy Institute, suggests that the time during proton therapy appears more positive than the periods before or after it. These findings are remarkable and contrary to previous research that suggests the time during cancer treatment is psychologically hardest for parents.

The findings expressed in this article reflect testimonies from parents with children being treated at UF Health Proton Therapy Institute and validate the investment we make in our pediatric social services program. We know that pediatric tumors and cancer impact the whole family, which is why we are focused on providing holistic family-centered care. The UF Health Proton Therapy Institute employs a full-time Child Life Specialist who focuses on the well-being of each child throughout treatment. Behind-the-scenes pretreatment tours, age-appropriate videos, activities and interactive iPad applications help children feel more comfortable before their treatment and eliminate surprises and anxiety from both the patient and the parents. Ongoing psychological assessment and supportive counseling is provided by our dedicated pediatric social worker in addition to school advocacy, and a vibrant adolescent and young adult program.

Aside from professional support, the article also found that social interaction and distractions with other families are an important part of finding benefits during treatment. With 90 percent of the children treated at UF Health Proton Therapy Institute coming from outside of Jacksonville, including a large number from other countries, providing resources, organizing outings, family dinners and programming for pediatric patients and their families is a large part of the focus our team provides alongside cutting-edge cancer treatment. 

Over the past 10 years, the UF Health Proton Therapy Institute has treated more pediatric patients than any other proton center in the world. Our goal for the next 10 years and beyond is to continue to provide the highest standard of care across every spectrum and to help all that come through our doors have the best possible experience throughout treatment and beyond.

We are very fortunate that 12 years ago, before we were even open, a benefactor stepped forward to establish the Play Golf. Fight Cancer.^® Classic, a golf tournament to raise money for our clinical research program. We rely on the proceeds from this charitable event to supplement our research budget. Here is an example of why funding research is so important.

Recently we published a study on breast cancer that initially only had funding for 12 patients, but needed to expand to 18 to allow an even number of left-sided and right-sided breast cancer patients to enroll in the study. We reallocated funds from our operating budget to make it possible to expand the study. This research led to the discovery of critical evidence that proton therapy spares all patients’ hearts and lungs from large doses of radiation. If it were not for the additional funds, this important discovery may have been delayed, or worse, may have never happened.

I hope you will consider supporting our research program this year through sponsoring or participating in the 12th annual Play Golf. Fight Cancer.^® Classic.

Sincerely,

Stuart L. Klein

A recreational tennis player since his thirties, proton alum (2009) Howard Rugaber didn’t expect that at age 66 he would be a national champion. But, to his surprise, he and his doubles teammates rose through the ranks to win the National USTA 8.0 championships held in Surprise, Ariz., in April.

“I was asked to be on the team in June of last year,” said Howard who lives in St. Simons Island, Ga., where he owns and operates a landscaping company. “A friend of mine who I play tennis with from Columbus, Ga., was putting together a team to beat the other GA teams in the state tournament. When he asked me, I said, ‘I don’t play much doubles, but I’ll be happy to be on the team.’ I learned a lot on the way.”

The way ended up being a state tournament win in Savannah, Ga., that led to a regional tournament win in Dothan, Ala., ending in the national title win in Arizona.

Howard said the team practiced hard between tournaments to be ready for the competitions. Judging by their athletic achievement, you would never know that some of the players had previously had knee replacements, hip replacements, and proton therapy for prostate cancer.

When Howard was diagnosed with prostate cancer, he talked to friends and a fellow tennis player about it and they told him about their success in beating the disease with proton therapy at UF Health Proton Therapy Institute. As a University of Florida alum, it was an easy decision for him to have proton therapy in Jacksonville. 

“I was very fortunate. I was kind of a poster child for all the treatments. I had no negatives associated with it,” Howard said. Even with a three-hour round-trip commute to receive daily treatment he maintained his regular schedule. “I worked every day, and I played tennis almost every day. I didn’t really get tired like some people do who get radiation.”

More than six years post-treatment, Howard and his wife Trish, whom he met while in college at UF, enjoy spending long weekends in the Jacksonville area at the beaches in Ponte Vedra and playing tennis with friends.

For an overview of the research program, how it works and why it matters, we invite you to watch this online video.

By Theresa Edwards Makrush

At just 20 months old, Noah Edgar of Colchester, England, is a happy, curious, busy toddler playing at the beach. Passersby may think he is in Jacksonville, Florida, with his family for vacation. They would be surprised to discover Noah is here for cancer treatment.

Last December, Noah had an eye infection. His parents Gemma and Rob took him to the doctor. After the infection was healed his doctor detected a tumor in the retina. 

Retinoblastoma is an uncommon pediatric cancer of the eye. It begins in the retina, ocular tissue that lines the back of the eye, senses light and sends images to the brain. In the United States, retinoblastoma accounts for about 3 percent of cancers in children younger than 15 years – about 4 cases per million. Retinoblastoma is sometimes caused by an inherited gene mutation; when it occurs in both eyes, it is always the result of a gene mutation. It most often occurs before the age of two, with 95 percent of retinoblastoma diagnosed before the age of five. The tumor may affect one eye (about 75 percent of cases), or both eyes (25 percent of cases). The prognosis for retinoblastoma is good if the tumor is identified early. More than 90 percent of retinoblastomas that do not spread beyond the eye will be cured.

In Noah’s case, the tumor had become so large that it had detached his retina causing him to lose sight in the affected eye. It was decided his best chance for cure was to remove his eye surgically and follow it up with proton therapy and chemotherapy.

This news was a jolt to the family. “It’s the worst thing as a parent to hear that your child has cancer,” said Noah’s dad Rob. But the Edgars said they are confident in Noah’s prognosis after having surgery by the top specialists in England and now proton therapy at UF Health Proton Therapy Institute.

Proton therapy will deliver targeted radiation to the area where the tumor was removed in order to reduce the chance for recurrence. Because proton therapy does not penetrate beyond the treatment area, there is little chance of unnecessary radiation exposure to Noah’s remaining eye or brain allowing him to retain his sight and IQ.

Rob said that people should be aware of symptoms of retinoblastoma. If one of your child’s eyes look unusual in a flash photograph, it could indicate a tumor is present in the eye that is not reflecting light. The earlier a tumor is detected, the better. He recommends taking your child to an optician on a regular basis to have their eyes checked.

While they are in Florida, the Edgars are making the most of every day. It’s an attitude the couple chose when Gemma was treated for a brain tumor just months after Noah was born. “It’s hard, but we both have a positive outlook,” she said. Rob added, “Yes. There have been dark days and sad days. But we want to live for every day. Our other son Dylan is four years old and we try to carry on as normal.”

Most days after Noah’s proton therapy session, the family plays at the beach or the pool. One weekend they went to an amusement park in Orlando and to the Silver Springs State Park in Ocala, Florida. They have plans to visit Savannah, Georgia. “We try to have fun whenever we’re not in hospital,” said Gemma.

The Men’s Garden Club of Jacksonville is putting its green thumb to work for the good of patients having radiation treatment for cancer. Several aloe vera plants are nestled in the tropical garden located in the main lobby below the staircase for patients to take home with them. Check with your medical team to see if this natural balm is right for you. Then help yourself to an aloe plant.

The sap of the aloe plant is easy to use. Simply snap off a leaf and squeeze to extract the gel-like fluid onto the affected skin. The most common benefit is a cooling or soothing sensation that eases discomfort from minor burns.

Here are some tips for tending your aloe plant:

Unless you live in an area with a very mild climate, it's best to leave your aloe plant in the pot and place it near a window that gets a lot of sun. Aloe vera is a succulent, and as such, stores a large quantity of water within its leaves and root system.

During the winter months, the plant will become somewhat dormant, and utilize very little moisture. During this period watering should be minimal. Allow the soil to become completely dry before giving the plant a cup or two of water, just enough to moisten the soil.

During the summer months, the soil should be completely soaked, but then be allowed to dry again before re-watering. Aloes have a shallow, spreading root system so when it is time to repot choose a wide planter, rather than a deep one. Use a planter with a drainage hole, or provide a 1-2 inch layer of gravel in the bottom of the pot to ensure adequate drainage. Use a good commercial potting mix with extra perlite, granite grit, or coarse sand added. You may also use a packaged 'cacti mix' soil.

Aloe vera plants are propagated by removing the offsets which are produced around the base of mature plants, when they are a couple inches tall (or larger).

Retrieved from: http://www.thegardenhelper.com/aloe~vera.html

Australian teen packs positive attitude in dealing with osteosarcoma

By Theresa Edwards Makrush

A positive attitude has taken 14-year-old Sophia Gall far. Even through a tough year of cancer diagnosis and treatment, Sophia continues smiling and is determined to find the good in a bad situation.

Her desire to make others aware of proton therapy and encourage other cancer patients, especially teens, prompted her to start a YouTube channel. She has posted several videos since the first week of January 2016 that describe her medical journey.

 “A lot of people go through stuff like this. And people don’t know what to expect and I want to show others about it,” she said following one of her last proton therapy sessions for osteosarcoma. “When you’re dealing with cancer, it doesn’t just stop you. You still get good things that happen.”

Because of the location of the tumor in her pelvis, Sophia was not a candidate for surgery. Her treatment option was a combination of chemotherapy and radiation therapy.

Sophia’s dad began researching radiation therapy options and discovered the benefits of proton therapy. Unfortunately, it is not available in Australia where the family lives, so he sent Sophia’s records to six proton therapy centers around world to get their opinion on whether they would accept her for treatment and estimates for the cost of treatment. Sophia’s radiation oncologists recommended that he include UF Health Proton Therapy Institute and Dr. Daniel J. Indelicato in the review. The physicians were comfortable with Dr. Danny and the program at the Institute – the treatment and the facility.

At the same time, he wrote to the Health Minister and other elected officials to petition support of expediting review of Sophia’s case by the health agency that could approve funding for proton therapy abroad. Time was critical since the window to begin radiation following chemo was limited.

According to her parents Linda Fleming (Gall) and Mark Gall, their daughter spent seven months in hospital for 22 rounds of chemotherapy that took a significant toll. Prior to her illness, Sophia was physically active, playing soccer and swimming competitively. She was involved in the theatre arts dancing and acting. The chemotherapy left her very weak and she either walked with support or was transported by wheelchair. She was on a feeding tube for six months and bedridden for four months. Her weight dropped to 87 pounds, which for her height of 5’10” was quite low.

Things started to turn for the better in early October after Sophia began a new steroid medication to control the persistent nausea and her pain medication was better managed. She started gaining weight, regaining her strength and feeling more like her usual self. Even more reason for optimism, scans confirmed that the tumor was responding to the chemo.

She flew from her home in Australia on January 18 to the United States for proton therapy in Jacksonville, Fla., at UF Health Proton Therapy Institute.

“If someone with cancer was coming here, I would tell them don’t worry about anything,” said Sophia. “Everyone is so amazing. You make friends for life. It’s almost like when you come here, everyone has been through the same thing. People get it.”

Her mom Linda added “There’s just no stress. You don’t have to worry about anything.”

While in Jacksonville, Sophia enjoyed shopping at the St. Augustine Premium Outlets, the St. Johns Town Center, the Avenues Mall and the shops in San Marco, which was within walking distance of the apartment they rented. Sophia remarked that she enjoyed being outdoors and even walked to her appointments at Nemours Children’s Specialty Care.

Ten weeks after arriving in Jacksonville, Sophia headed back home on March 27, looking forward to seeing her brother, friends and school. She is especially anticipating the eight-week school trip to Chiang Mai, Thailand, that they have been planning since she was five years old. Her mom Linda said, “The school principal told us even if he had to carry Sophia on his back, Sophia would go.” Indeed, Sophia’s positive attitude is taking her far.

By Theresa Edwards Makrush

The University of Florida Health Proton Therapy Institute has announced vendor selections for its $39 million expansion and upgrades. The project is being managed by the University of Florida Planning, Design & Construction Division.

UF Health Proton Therapy Institute has signed an agreement with IBA (Ion Beam Applications S.A.) to install the proton therapy equipment manufacturer’s compact Proteus®One system. The single-room treatment system is the centerpiece of the multiphase project announced earlier this year. IBA will also install advanced treatment technologies to the existing proton therapy system.

The construction manager selected for the 10,000-square-foot expansion is Gilbane Building Company. The company’s Jacksonville office will oversee the project. Gilbane has extensive experience in building hospitals and health care facilities, including multiple proton therapy facilities in the United States.

The architectural firm chosen to design the expansion is Walker Architects, Inc. Based in Gainesville, Florida, recent projects include the renovation and expansion of the University of Florida’s J. Wayne Reitz Union.

By Theresa Edwards Makrush

Every day in the UF Health Proton Therapy Institute main lobby, patients and their caregivers wield brushes, pencils, crayons, and knitting needles to paint, draw, color, knit, and sew their way to their daily proton therapy appointment. They are gently and expertly guided through art exploration by Pamela Gardener and Barbara Fryefield who are each professional artists.

Earlier this year, the artists-in-residence organized the patients in a group effort to create an art exhibit for display in the room where weekly patient luncheons are held. The theme of the exhibit is water. As noted on an exhibit description, water is everywhere in Jacksonville, and bodies of water can change color and appearance depending on the time of day, angle of light, or effects from other elements. “Our artists were asked to look at the water as they travel in and around Jacksonville. Here is what they saw.”

The water exhibit patient-created artwork is being sold to raise funds for art supplies. For more information, contact Development Director Molly Dworkin, mdworkin@floridaproton.org; 904-588-1519.

Teen proton alum Lauren Foster and her family returned to Jacksonville to reconnect and offer encouragement

By Theresa Edwards Makrush

A sweet smile lit up 14-year-old proton alum Lauren Foster's face as she talked about her plans for the future. "Going through treatment made me want to go into nursing. Knowing that you're helping somebody get better makes you feel quite happy," she said softly.

Her parents' smiles beamed brightly as they added, "She's taking all the subjects that will hopefully get her into university to do nursing," said mom Emma Allsop. While dad Steve Foster remarked, "Lauren choosing this path is unusual since she does not like the sight of blood, has a fear of needles and doesn't like to see medical procedures even on TV. Her choice shows just how determined she is and has the strength of direction for nursing."

It's the same strength and determination Lauren has displayed during the last four years as she has dealt with treatment for a rare tumor called rhabdomyosarcoma, a type of tumor that occurs in soft tissue. Because of her age and the location of the tumor on the muscle at the back of her palate, she was not a candidate for surgery, and her physicians in the United Kingdom recommended her for proton therapy combined with chemotherapy.

On March 17, four years to the day when they first landed in America for Lauren's proton therapy, Lauren, her parents and her sister, Holly, returned to UF Health Proton Therapy Institute for a follow-up visit with Dr. Danny Indelicato. "We really looked forward to thanking the staff for what they've done for Lauren," said her dad Steve. Lauren added, "I'm looking forward to experiencing everything in America being well."

It was a much different experience than when they were here originally. The fear of the unknown, never having been in the United States before, and being away from their support system of friends and family for cancer treatment was overwhelming at first. 
“The culture of things. Knowing more about the way of life would have set our minds more at ease,” said Emma. After getting over the uncertainty of driving on the right side of the road, adjusting to the way Americans eat and discovering how friendly all the people were, the family began to settle in. 

 Initial fears about the medical facilities and treatment were relieved once they arrived. At Wolfson Children’s Hospital they were pleasantly surprised to have a private room. This allowed the family to stay with Lauren in comfort as she had procedures to implant fiducial markers to aid in positioning for daily proton therapy and a port for her chemotherapy. At the Institute, the family went on an orientation tour prior to Lauren’s first treatment. She was able to see, touch and feel what it was like to lie on the treatment table, allowing her to overcome her anxiety and have her treatment without daily anesthesia. 

Lauren said that proton therapy was not painful. “You don’t feel anything. It’s not as scary as you think it is” she said. “After you’ve done it once, you can do it again,” Lauren said.

They also wanted to encourage others who are facing a similar journey. “No one wants this to happen to their child. But that’s the good that can come out of it. You can share and pass along your experience to help others,” said Steve. Emma agreed. “We would love to have met up with people who were two or three years out. So many questions you want to ask and some you don’t want to ask the doctors,” she said. 

The family was pleasantly surprised by the friendliness of everyone, even people who were complete strangers. Steve told the story of how the entire staff of the hotel where they stayed during the nine-and-a-half-week treatment became like family. As an example, every morning they had breakfast in the hotel dining room and the staff noticed how much the youngest member of the family, Holly, loved to make her own waffles every day. At the end of their stay, the staff presented the gift of an industrial waffle maker to the family. Later as the family prepared to leave for the airport, the entire hotel staff gathered in the lobby to wish them well, cheering and applauding.

An act of kindness in the middle of a big-box store remains a vivid memory for Steve. While Lauren was being treated, she was quite sick and it was a struggle to do many outside activities. One day the family was shopping for some necessities and Lauren became fatigued. Steve found a seat in the middle of the store for Lauren to rest. A woman who was shopping noticed Lauren and asked about her condition. After learning from Steve what was happening, the woman asked if she could say a prayer for Lauren. “I said yes thinking that she would go home and say a prayer later. But she got down on her knee in the store and held Lauren’s hand and said a prayer right there. People just continued shopping and walked by without a second thought.” The fact that the woman cared enough to stop and show her concern was surprising enough. Even more surprising was that people didn’t stop and stare and make a spectacle of what was happening. 

They are making new memories on their return trip. Reconnecting with the people and places in Jacksonville they remember fondly and charting new territory as they visit Orlando and the many theme parks. And each family member will get their favorite taste of America while they’re here: Olive Garden for Emma, Chick-fil-a for Steve and Holly and Denny’s for Lauren.

Today, Lauren is cancer-free. She fills her days with school, sports like gymnastics, trampoline, and badminton, and watching her favorite TV shows The Big Bang Theory and Charmed, which she and her family came to know and love while in America.

March 30 is National Doctors Day, a day set aside to show our appreciation for the dedication, professionalism and compassion physicians commit to healing patients. The radiation oncologists at UF Health Proton Therapy Institute exemplify all that is best about the medical profession. Their leadership in advancing the field of radiation oncology through proton therapy is improving the health outcomes of thousands of cancer patients today and in the future.

A simple way to show appreciation is to tell others about your experience with your physician. You may wish to share your experience with a review on our Facebook page or Google Plus page or take a brief nine-question survey on healthgrades.com. Click on the physician's name below to launch the survey:

Julie A. Bradley, MD

Curtis M. Bryant, MD, MPH

Roi Dagan, MD, MS

Randal H. Henderson, MD, MBA

Bradford S. Hoppe, MD, MPH

Daniel J. Indelicato, MD

Nancy Price Mendenhall, MD

William Mendenhall, MD

R. Charles Nichols, Jr., MD

Ronny Rotondo, MD, CM, FRCPC

Michael Rutenburg, MD, PhD

Something we invite all of our patients and their caregivers to do is reach out for support. Aside from the medical care patients receive at our facility, we offer many ways for them to meet other patients and their caregivers in organized meetings and informal get-togethers. Often it is the spontaneous connections that patients make with one another in the lobby, at the Wednesday luncheon, or at their temporary housing complex, for example, that can have an enormous positive influence. Whatever your personal style may be, we hope that you will not hesitate to ask for support throughout your medical journey.

Sincerely,

Stuart L. Klein

Executive Director

We are pleased to welcome to our staff adult oncology social worker Stephanie Saman. Her role is to work with adult patients and families and encourage them to become involved in our community of mutual concern and support. She develops and facilitates support groups for all adult patients as well as provides individual counseling where she emphasizes the importance of human relationships. 

As part of the care team, she consults and collaborates with physicians, nurses and others to ensure the psychosocial needs of patients are met.

Ms. Saman empowers patients and their families to function optimally throughout the treatment process by assisting them in accessing the health care system and community resources available. She engages the community to cultivate enhanced support and resources for adult patients. 

Ms. Saman has a Masters in Social Work from Florida State University and is a member of the National Association of Social Workers and the Association of Oncology Social Work.

- compiled by Theresa Edwards Makrush

We are embarking on an exciting period in our history. This year we will mark the 10th anniversary of the first treatment delivered to a patient. We will publish updated results of our proton therapy clinical trials. And we will begin construction of a new treatment room, expanding our treatment capacity and upgrading our technology. These milestones represent our commitment to treating and curing cancer in a way that preserves an excellent quality of life for our “alumni.” I am excited to share this news with you and encourage you to spread the word by forwarding this message to a friend. Wishing you all the best in 2016 and beyond.

Sincerely,

Stuart Klein

By Theresa Edwards Makrush

Encouragement from her family and friends led Beth Semikin to begin a blog about her experience dealing with a rare and complicated diagnosis of sarcoma. They thought her sense of humor was worth sharing with others. “I think if you can see the funny side of things, it helps to cope,” said Beth whose blog is cheekily named Tumour Has It. It has caught the attention of many cancer patients and news organizations including The Daily Mirror and ActionNews Jax.

She discovered writing about her cancer gave her a way to overcome the fear. “It was something I could do to normalize it,” said Beth in a recent interview as she prepared for her first of nine proton therapy treatments following weeks of conventional radiation at UF Health Proton Therapy Institute. 

Beth, who is a 22-year-old physics student at Imperial College in London, said she sees the blog as a way to raise awareness about sarcoma. “There’s a lot of misdiagnosis. Symptoms are overlooked and there’s not much awareness in the general public and the medical community about it,” she said. Her own symptoms began in December 2014 as a tingling sensation in her leg that over a few-week period became very painful. “If you have unexplained symptoms, nerve pain, a lot of trouble walking, it [sarcoma] could be something to consider,” she said.

She describes her time in Jacksonville as a “radiation vacation.”

“It’s gone really quickly. No real symptoms from the radiation. I feel here there’s such a feeling of safety, like I’m cocooned,” said Beth. Being with doctors she trusts and radiation therapists who have become friends eases the initial fear and uncertainty of travelling to the U.S. for treatment.

A friend of hers at home in the U.K. has started a fund to raise money for Sarcoma U.K., a nonprofit organization that provides information and support for sarcoma patients and their families and funds research. So far they have raised nearly £5,000 for the organization through the Beth Semikin Sarcoma Initiative.

You can subscribe to Beth’s blog at http://tumourhasit.co.uk/, and follow her on Facebook.com/TumourHasIt and Twitter @TumourHasIt.

A poem by Ruth Munglani

Editor’s note: At a recent Wednesday patient luncheon, 22-year-old Ruth Munglani shared a poem she wrote to commemorate her proton graduation day. She had spent several months in Jacksonville having proton therapy for Ewing sarcoma and has returned to her home in the U.K. We thank Ruth for the opportunity to publish her work.

When lying asleep in the depths of my chemo,

The doctor popped into my room.

She beamed at me and patted my shoulder,

‘You’ll be going to America soon.’

‘America? Why would I go there?’ I replied,

I looked at her with dismay.

My friends, my family, my whole life was here,

All I wanted to do was stay.

The doctor explained to my chemo-addled brain

About protons and all of that.

To be honest, I wasn’t really listening to her,

I got distracted by the fact

That America was so very far away;

Across an entire ocean.

And that I would have to spend a few months there

Getting some form of radiation.

The day for the flight dawned bright and early,

I woke up filled with dread.

More treatment abroad was not appealing,

I pulled the blankets over my head.

The first few days were stressful for my mum;

She cried on the I-95.

The speed limit, it appeared; merely a suggestion,

We were glad to get home alive.

But the protons really have been fine.

I hop up on the bed and relax,

Listen to the chatter and the music,

What would make it perfect: some snacks.

We have enjoyed our down time too,

Lots of trips to the beach and the sea.

One thing though I am looking forward to:

A good old English cup of tea.

I’ve made some really good friends since I’ve been here;

People who smile and care,

Who stop and ask ‘How’s your day going?’

A sense of community is shared.

There have been many memorable moments,

Expressions like ‘Happy Friday’ and ‘Y’all’,

But mostly I’ll remember the kindness of everyone

And the little things, however small.

And now at last it is ending.

I find myself sad to go home.

It has felt like a holiday being here,

Full of friends, never alone.

So thank you to all who have made it

A truly wonderful experience for us.

Treatment has never been so positive.

I think you’ve got it sussed.

People, especially those who go above and beyond the expected, make the UF Health Proton Therapy Institute a special place. In this month’s newsletter, you will read about exceptional actions by remarkable individuals who put others before themselves and make the world a better place.

On behalf of all of us here at the institute, best wishes to you and your loved ones for a happy holiday season.

Sincerely,

Stuart Klein

You can help our friend, Jacksonville Jaguars player Zane Beadles, win the Walter Payton Man of the Year award. All you have to do is use the hashtag #BeadlesWPMOYChallenge in your social media posts now through December 31. The NFL player with the most hashtag mentions will win a donation to fund his charitable activities.

Zane is a generous philanthropist who has taken a special interest in helping the children being treated at UF Health Proton Therapy Institute and their families. He has a charitable organization, the Zane Beadles Parade Foundation, that focuses on supporting the journey of young people going through life-changing medical experiences.

Fun and Fellowship

Over the past few years he has hosted multiple family fun night activities including the most recent holiday party on December 10. Children and parents were treated to “breakfast for dinner” with pancakes, bacon and other delicious goodies on the menu. Then everyone was invited to decorate a gingerbread house using icing, candy and their imaginations. Zane along with his teammate AJ Caan and members of the Jaguars cheerleading squad The Roar visited with the children, signed autographs and posed for photos. 

For 11-year-old Max Adams, a patient from the United Kingdom and Jaguars fan, it was a thrill to meet the players. He started following the Jaguars when they played in London and attended the game there this season. He has also watched a few games at Everbank Field while he’s here on treatment.

Max said that the holiday party was a great way for all the pediatric families, especially those far from home, to get together for fun and fellowship. 

JAXUSA Partnership, the economic development arm of the JAX Chamber, during its quarterly luncheon on December 16 presented a 2015 International Award to UF Health Proton Therapy Institute. 

Each year since 2007 JAXUSA honors companies and individuals that contribute to Northeast Florida’s international growth. “As international barriers continue to be broken it is important to position Northeast Florida as a prime place to expand or relocate international business,” said Jerry Mallot, JAXUSA President. “These awards help us recognize those companies and individuals who have already seen why this region is an outstanding location for their business operations.”

A selection committee comprised of the JAXUSA President, International Senior Director, JAXPORT’s Chief Commercial Officer and a representative from the international and/or logistics community review eligible nominees and determine the award winners. Past winners include Novabone (2007), COACH (2011), Stellar (2007 & 2014) and Jaguars President Mark Lamping (2013). The selection of UF Health Proton Therapy Institute marks the first time a health care provider has received the International Award.

“We are honored to receive this recognition,” said Stuart Klein, UF Health Proton Therapy Institute Executive Director. “Proton therapy is often the only treatment option for many kinds of tumors, especially those located in or near critical organs like the brain, heart or lungs. Our ability to provide treatment to patients from around the globe is possible thanks to our expert professional medical team and to our community partners.”

Since opening in 2006, the UF Health Proton Therapy Institute has treated more than 6,000 cancer patients, who are from the local community, 49 states and 30 countries. The Institute has agreements in place with Norway, Quebec and the United Kingdom to treat cancer patients who need proton therapy. Additional international patient growth is expected from China following a proton therapy symposium in June 2015 hosted jointly with the leading radiation oncology association in China. Over the last five years, the pediatric proton program has grown to the largest in the world with more than 25 children on treatment each day. Since opening, the facility has treated more than 1,000 children.

UF Health Proton Therapy Institute is a 501 (c) 3 not-for-profit, academic health facility. The facility is active in the economic development and medical tourism efforts in the City of Jacksonville. It hosts educational tours of the facility for small groups including medical professionals, business groups, government officials, international visitors and others. Facility tours are open to patients, caregivers and the general public twice weekly. It supports nonprofits such as the Ronald McDonald House, the American Cancer Society, Wolfson Children's Hospital, the American Lung Association, the Free to Breathe Association, and the 26.2 with Donna. Employees and patients often participate in community runs and events such as the Riverside Arts 5K, the Gate River Run, the Corporate Run, and more.

This year UF Health Proton Therapy Institute was named one of four Florida Cancer Centers of Excellence – the first year of the state-designated award – and it earned the American College of Radiology accreditation seal – one of three proton therapy facilities in the country with this distinction.

At this time of year, we set aside time to give thanks for the people who make a difference in our lives. It could be a family member, friend, loved one or someone in our community such as a military veteran, first responder or teacher. We are surrounded by people, seen and unseen, who impact our lives in a positive way every day.

This month we acknowledge our radiation therapists during National Radiologic Technology Week (November 8 - 14). This team of highly skilled professionals delivers exceptional care to patients every day. They expertly operate the proton therapy, IMRT, SBRT, MRI and CT equipment for safe and accurate patient treatment. Their commitment to excellence is recognized in the industry and serves as a model for other proton therapy centers. We are fortunate to have such an experienced team of people trained in proton therapy. For more than seven years, we have been able to treat the maximum number of patients possible because our radiation therapists alternate working two shifts. They're among the first to arrive at 6 a.m. and the last to leave at 11 p.m., or sometimes later. We thank our radiation therapists for their dedicated and compassionate care.

On behalf of everyone at UF Health Proton Therapy Institute, I wish you and your family a very Happy Thanksgiving.

Sincerely,

Stuart L. Klein

By Theresa Edwards Makrush

During November, advocacy groups turn our attention to two of the deadliest cancers in the U.S. - lung cancer and pancreatic cancer. Symptoms can be mistaken for other more benign illnesses before lung cancer is diagnosed at a more advanced stage. Pancreas cancer is even more challenging since symptoms typically do not occur until the cancer has spread to other organs.

Treatments are usually a combination of surgery, chemotherapy and radiation. Radiation is often used following surgery to destroy any remaining cancer cells. It is sometimes used before surgery to shrink the size of the tumor. For inoperable (unresectable) tumors, radiation is used with curative, or in some cases palliative, intent.

Facts and Stats
Lung cancer is the second most common cancer in American men and women, accounting for 13 percent of all new cancer diagnoses each year and is the leading cause of cancer death.¹ Pancreatic cancer in comparison is less common, accounting for three percent of all new cancer diagnoses each year, yet it is the third most common cause of cancer death in the U.S.²

Early evidence for proton therapy in treating lung and pancreatic cancers suggests that patients can expect similar cure rates to conventional treatment methods, but will experience fewer treatment-related complications. Unlike X-rays, proton beams can be conformed to the size and shape of the treatment area to minimize or avoid damage to surrounding sensitive organs. For lung cancer patients this means a reduced risk of developing treatment-related pneumonia, pain with swallowing, and cardiac disease.³ For pancreatic cancer patients it means a reduced risk of developing treatment-related serious bowel or stomach issues.⁴

Lung cancer treated with protons     

Both small cell lung cancer and non-small cell lung cancer (NSCLC) are the subject of clinical research at UF Health Proton Therapy Institute. Recent published articles in the International Journal of Radiation Oncology Biology Physics, Clinical Lung Cancer and Acta Oncologica reported on early outcomes of patients following proton therapy for stage II & III NSCLC and limited-stage small cell lung cancer. The researchers concluded that the combination of proton therapy and chemotherapy can provide patients with an aggressive treatment that is less toxic than conventional X-ray radiation.^{5, 6, 7}

Clinical trials open for enrollment to eligible lung cancer patients include one for a shorter treatment approach for stage II & III non-small cell lung cancer and another for a shorter treatment approach for stage I non-small cell lung cancer.

For more information about proton therapy and lung cancer, visit our cancers treated page.

Pancreatic cancer treated with protons

One of the important areas of treatment, clinical trials and study at UF Health Proton Therapy Institute is pancreatic cancer. The goal is to improve patient outcomes for a disease that is often challenging to treat successfully. An article published in the International Journal of Particle Therapy reported early outcomes following proton therapy for patients with pancreatic cancer who were not eligible for surgical removal of the disease due to the position of the tumor. ⁸

Patients were treated with both chemotherapy and proton therapy. Significantly, the study reports that patients were able to tolerate the treatment well with no severe gastrointestinal side effects during treatment and in the two years following. This suggests that there is an opportunity to safely intensify the treatment, which may lead to improved survival rates. Two clinical trials are currently open to enroll eligible pancreatic cancer patients: postoperative proton therapy in surgically removed (resected) pancreatic cancers; and preoperative proton therapy in pancreatic cancers that can be partially removed (borderline or marginally resectable).

For more information about proton therapy and pancreatic cancer, visit our cancers treated page.

References

1. Seer Stat Fact Sheets: Lung and Bronchus Cancer. http://seer.cancer.gov/statfacts/html/lungb.html. Retrieved Nov. 11, 2015.

2. Seer Stat Fact Sheets: Pancreas Cancer. http://seer.cancer.gov/statfacts/html/pancreas.html. Retrieved Nov. 11, 2015.

3. Image-Guided Proton Therapy for Lung Cancer and Thymoma. http://www.floridaproton.org/sites/default/files/docs/LungCancerFactSheet.pdf Retrieved Nov. 11, 2015.

4. Proton Therapy for Pancreatic Cancer. http://www.floridaproton.org/cancers-treated/pancreatic-cancer. Retrieved Nov. 11, 2015

5. Hoppe BS, Flampouri S, Henderson RH, Pham D, Bajwa AA, D’Agostino H, Huh SN, Li Z, Mendenhall NP, Nichols RC. Proton therapy with concurrent chemotherapy for non-small-cell lung cancer; technique and early results. Clin Lung Cancer. 2012 Sep; 13(5):352-8.

6. Colaco RJ, Huh S, Nichols RC, Morris CG, D’Agostino H, Flampouri S, Li Z, Pham DC, Bajwa AA, Hoppe BS. Dosimetric rationale and early experience at UFPTI of thoracic proton therapy and chemotherapy in limited-stage small cell lung cancer. Acta Oncologica. 2013 Feb; 52(3): 506-13.

7. Hoppe BS, Henderson RH, Pham D, Cury J, Bajwa AA, Morris CG, D’Agostino H, Flampouri S, Huh S, Li Z, McCook B, Nichols RC. A phase II trial of concurrent chemotherapy and proton therapy for stage 3 non-small cell lung cancer: Results and reflections following early closure of a single institution study. Int J Radiation Oncol Biol Phys. Article in press Nov. 8, 2015.

8. Sachsman S, Nichols RC, Morris CG, Zaiden R, Johnson EA, Awad Z, Bose D, Ho MW, Huh SN, Li Z, Kelly P, Hoppe BS. Proton therapy and concomitant capecitabine for non-metastatic unresectable pancreatic adenocarcinoma. International Journal of Particle Therapy. Winter 2014;1(3):692-701. http://www.theijpt.org/doi/abs/10.14338/IJPT.14-00006.1

Jacksonville Jaguars offensive lineman Zane Beadles is tackling more than opponents on the football field. Through his charitable foundation, The Zane Beadles Parade Foundation (ZBPF), he is also tackling a community project to bring fun, excitement and joy to our pediatric patients and their families.

Now through December 5, Zane is hosting a holiday gift drive at nine Jacksonville area drop-off locations.

"The UF Proton children are such an incredible, tenacious group," said Zane. "I'd love for the community to celebrate the Season of Giving by donating wish list items that these kids can enjoy year-round."

People in the community are encouraged to choose an item from the "UF Health Proton Therapy Institute Wish List" and bring it to one of the following locations:

• Engine 15 Brewing Co.
  • 1500 Beach Blvd., Jacksonville, FL 32250
• Mellow Mushroom (four locations)
  • 1018 3rd St. N., Jacksonville Beach, FL 32250
  • 3611 St. Johns Ave., Jacksonville, FL 32205
  • 9734 Deer Lake Ct., #1, Jacksonville, FL 32246
  • 1800 Town Center Blvd., Fleming Island, FL 32003
• Reputation Ink
  • 1303 N. Main St., Suite 108, Jacksonville, FL 32206
• Sports Mania
  • 1246 3rd St. S., Jacksonville Beach, FL 32250
• Woody’s Bar-B-Q (two locations)
  • 1638 University Blvd S., Jacksonville, FL 32216
  • 8540 Argyle Forest Blvd, Jacksonville, FL 32244

Items on the "Wish List" include:

• All ages
  • Zane Beadles Snuggle Pad: The Zane's Parade Snuggle Pad is a plush toy elephant that doubles as a functional fold-out tray. Every donation of a Snuggle Pad is matched one-for-one by Zane's Parade, so your purchase means two children will benefit. To order, visit the ZBPF Shop at zanesparade.org
  • Bubbles, I Spy books, light-up spin toys, iPad Minis
• Infant
  • Musical toys and light-up toys
• Toddler
  • LEGO Duplo blocks, musical toys, light-up toys, See 'n Say, Playskool Busy Poppin' Pals toys
• School age
  • Sticky Mosaics toys, coloring books, LEGO friends sets, Hot Wheels, Fuzzy Velvet posters, playing cards and puzzles (50-100 pieces)
• Teen
  • Individual arts and crafts kits, Fuzzy Velvet posters, picture frames, LEGO BIONICLE kits, playing cards, UNO, Phase 10, electronics, DVDs (Rated G, PG, or PG-13), games for Xbox, Kinect (games must be rated E, E10+ or Teen and non-violent)

About the Zane Beadles Parade Foundation

The Zane Beadles Parade Foundation (ZBPF) supports the journey of young people going through life-changing medical experiences. Founded in 2013, ZBPF is a 501(c)(3) nonprofit organization that gives the gift of fun, excitement, and joy to young patients and their families. Scientific studies and personal experiences prove that having positive, meaningful experiences significantly improves patients' quality of life, lowers their stress levels, and improves their overall recovery during treatments for serious medical conditions.

To learn more about the Zane Beadles Parade Foundation, please visit zanesparade.org.

By Theresa Edwards Makrush

On March 27, 2012, nine months after her wedding day, Kelly Jones got an unexpected and unwelcome phone call from her doctor. She was diagnosed with an aggressive form of breast cancer.

“We should have been planning our first anniversary celebration. Instead we were figuring out how I was going to beat this cancer,” said Kelly during a speech she made at the Oct. 11 dinner and silent auction that was part of the 11th Annual Play Golf. Fight Cancer.^® Classic.

She and her husband Darin and her physician decided that she would have a mastectomy followed by six rounds of chemotherapy and six weeks of radiation.

At the very beginning of her treatment, she decided that she wanted to keep her life as normal as possible, which included working as a middle school assistant principal in Alachua County Public Schools, visiting with friends and staying active with her family.

One evening in July, she was invited by her parents Gail and Eric Brill to go with friends to Steinhatchee, Fla., a Gulf coast community famous for its abundance of scallops and only an hour-and-a-half drive from her home in Gainesville. Among the group was Dr. Nancy Mendenhall, UF Health Proton Therapy Institute medical director. Kelly’s breast cancer treatment came up in conversation, and when Dr. Mendenhall learned that Kelly’s cancer was in the left breast, she took Kelly aside.

At the time, the Institute had started a clinical trial using proton therapy to treat cancer in the left breast, and Dr. Mendenhall encouraged Kelly to consider it. Based on previous research comparing treatment plans of protons, IMRT and conventional X-rays, there was evidence that proton therapy could target the treatment area in the chest and minimize damage to the heart and lungs. This advantage appealed to Kelly, who was already at risk of damage to her heart due to chemotherapy.

Incidentally, much of the research done at the Institute is possible through philanthropic donations and funds raised during the annual Play Golf. Fight Cancer.^® Classic. For years, Kelly’s mother Gail Brill had volunteered at the tournament, never knowing that one day her own daughter would benefit from the program.

Shortly after the Steinhatchee scalloping trip, Kelly had a consultation with Dr. Roi Dagan at the UF Health Proton Therapy Institute in Jacksonville. He evaluated her as a good candidate for proton therapy and eligible for the clinical trial. As they discussed the daily treatment that would take place over six weeks, Kelly insisted that Dr. Dagan make sure that she would be completed in time to go on her annual “girls’ weekend” cruise in the Caribbean. He assured her this would happen.

Three years later, Kelly has no sign of cancer. She and her family and friends are grateful that Kelly had access to proton therapy, and they do what they can to support the Institute and spread the word to others who may benefit from the treatment. They recently volunteered to be in the Institute’s just-released TV commercial featuring Kelly ringing Aud’s Chime in the main lobby. Kelly was interviewed by The Gainesville Sun for an article in the newspaper’s breast cancer awareness special section. And she shared her story with the audience at the Play Golf. Fight Cancer.^® dinner. There Kelly thanked her husband Darin for his tremendous support. She thanked Dr. Mendenhall for taking time out of her vacation three years ago to tell Kelly about proton therapy. She thanked the tournament’s past and current donors for making clinical research possible at the Institute. And she thanked Dr. Dagan for his expert care, and of course, for making sure she boarded the ship on time.

>> Click here to learn more about Proton therapy for Breast Cancer.

By Theresa Edwards Makrush

The 11th Annual Play Golf. Fight Cancer^.® Classic presented by IBA and .decimal was held on the First Coast for the first time. It was previously held in the Orlando area, and in its first 10 years raised more than one million dollars to support cancer research at UF Health Proton Therapy Institute in Jacksonville. The event took place Oct. 11 and 12 at the World Golf Village in St. Augustine, Fla., with a dinner and auction in the World Golf Hall of Fame & Museum and a tournament on the location’s two championship courses – the King & Bear and the Slammer & Squire. To see photos of the event, click here.

Dinner & Auction – Sunday, Oct. 11
This year the event included a dinner and auction the evening before the tournament, making it possible for supporters who do not play golf to participate. Approximately 200 guests gathered in the World Golf Hall of Fame & Museum to enjoy an evening of golf history and chances to bid on and win auction items. Dr. Tony Parker, the museum’s official historian, related stories of his time working at the famed St. Andrews course in Scotland and the celebrities he met including actors Michael Douglas and Jack Nicholson and professional golfers like Jack Nicklaus. Proton therapy patient and breast cancer survivor Kelly Jones shared her story. And celebrity Chef Robert Tulko led a live auction of five premium items including a week stay in a beautiful North Carolina cabin and a dinner for six prepared by Chef Robert.

Golf Tournament – Monday, Oct. 12
More than 200 golfers teed off at the two courses at the World Golf Village. Honorary Chair Shannon Miller greeted players during the tournament and at the awards reception shared her experience winning 1996 Olympic gold in gymnastics and later fighting and surviving cancer. World Golf Hall of Fame member Hubert Green, a cancer survivor, played in the tournament as did Josh Scobee, NFL kicker and former Jacksonville Jaguars player. Other special guests included Jaguars’ mascot Jaxson de Ville, Nease High School’s Navy JROTC Color Guard and vocalist Virginia Beverly who participated in the opening ceremonies at both courses and Naval Air Station Jacksonville sailors who tended the U.S. flag at the 18th hole on both courses. On-course activities included chances to win a car by making a hole-in-one, a contest for closest to the pin and a contest for longest drive. Trophies were awarded for the best-scoring teams in each of three skill levels at each course.

A group of 25 physicians from Bulgaria visited Jacksonville, Fla., last month to tour the world-class medical facilities here. After meeting with city leaders, they saw UF Health Jacksonville’s patient simulation lab and trauma one unit, followed by a tour of the UF Health Proton Therapy Institute. Patient Services Director Bradlee Robbert, with the help of an interpreter, explained the benefits of proton therapy in treating many types of cancer, and showed the group one of the gantry treatment rooms.

Ron Nelson is a man on a mission. He was treated for prostate cancer in 2011 at the UF Health Proton Therapy Institute and since then, he has written a book about his experience, Protons Versus Prostate Cancer: Exposed, created a blog about proton therapy, prostate cancer and other musings, The After Proton Blog, and frequently talks with both men and women about prostate cancer and proton therapy. And that’s just the tip of the iceberg. To see what else Ron is up to watch his short video.

While he doesn’t give medical advice, he’s a retired information technology professional, he does offer his candid, first-person, and often humorous perspective on proton therapy and prostate cancer. This month he is one of the featured speakers at the UF Health Proton Therapy Institute prostate follow-up clinic.

If you’re not able to make it to the talk, check out Ron’s most recent blog article with his characteristic wry and thought-provoking commentary on the timely topic of prostate cancer awareness month. There is no charge to subscribe to The After Proton Blog, and Ron would love for you to contact him at Ron@ProtonsExposed.com.

The American College of Radiology (ACR) has awarded a three-year term of accreditation in radiation oncology to the University of Florida Health Proton Therapy Institute. It is awarded to facilities that meet or exceed national standards in radiation oncology. Of the 17 proton therapy centers in the U.S., UF Health Proton Therapy Institute is one of three proton therapy facilities to have earned the ACR seal of accreditation, representing the highest level of quality and patient safety.

The accreditation means that personnel are qualified through education and certification to administer radiation therapy. Furthermore, it means the equipment is appropriate for delivering radiation therapy and meets or exceeds national standards for safety and quality assurance.

“Our goal is to deliver safe, effective cancer treatment to patients using proton therapy,” said Nancy P. Mendenhall, M.D., medical director of the UF Health Proton Therapy Institute and associate chair and professor of radiation oncology at UF. “Being part of an academic health center and a Florida Cancer Center of Excellence, we opened our doors for an objective and rigorous peer review by ACR. We are honored to have earned this distinction, and I commend our staff for their commitment to excellence.”

UF Health Proton Therapy Institute was recognized earlier this year among the first four Florida Cancer Centers of Excellence designated by the Florida Department of Health. The designation means that treatment centers demonstrate excellence in patient-centered coordinated cancer care.

The ACR is the nation’s oldest and most widely accepted radiation oncology accrediting body, with over 600 accredited sites, and 27 years of accreditation experience. The ACR seal of accreditation is awarded only to facilities meeting specific Practice Guidelines and Technical Standards developed by ACR after a peer-review evaluation by board-certified radiation oncologists and medical physicists who are experts in the field. Patient care and treatment, patient safety, personnel qualifications, adequacy of facility equipment, quality control procedures, and quality assurance programs are assessed. The findings are reported to the ACR Committee on Radiation Oncology Accreditation, which subsequently provides the practice with a comprehensive report they can use for continuous practice improvement.

The ACR is a national professional organization serving more than 36,000 diagnostic/interventional radiologists, radiation oncologists, nuclear medicine physicians, and medical physicists with programs focusing on the practice of medical imaging and radiation oncology and the delivery of comprehensive health care services.

Team Florida Proton participated in the 2nd Annual LungForce Walk in August to benefit the American Lung Association (ALA) and its effort to raise awareness of lung cancer as the leading cause of cancer death in women. Funds raised at the walk benefit the research and early detection programs sponsored by the ALA.

By Carol Estocko

After Ben Smith was “fired” by his urologist 10 years ago for declining to undergo a radical prostatectomy to treat his prostate cancer, Smith fired up his computer and got to work.

“I started doing Internet research and looking at every available therapy at the time, even cryotherapy,” the 62-year-old Cocoa Beach, Florida, resident says. “All of the treatments had pretty good e ffi cacy. But then, they would talk all about the possible side e ff ects like impotence and incontinence — except for proton beam therapy.”

At the time, there were only a handful of clinical centers o ff ering proton therapy in the United States, including ones in Boston, Massachusetts, and Loma Linda, California. “I did a little more homework and found that the University of Florida was actually building one in Jacksonville, which is two hours from my home,” says Smith. He reached out to the sta ff of the soon-to-open University of Florida Proton Therapy Institute (UFPTI) and said he wanted to be the first patient.

“I waited for it to open,” says Smith, who received his first proton beam treatment at UFPTI on August 14, 2006.

“I was the first person in that machine when they turned it on,” he recalls. “I had 39 treatments, and the equipment worked every time. I might have been delayed while they tweaked something, but I never had a treatment get cancelled. This is complicated machinery — a particle accelerator, magnets. It’s crazy how huge, powerful and complex these systems are. And they got it up and running 39 days in a row.”

Smith, a retired aerospace engineer, thinks that many doctors still view proton therapy as an experimental procedure — if they have even heard about it at all.

“I think one has to be one’s own advocate,” he says. “I don’t think doctors want to harm you. But the urologist wants to operate. The radiation oncologist wants to radiate. Another person wants to do seed implants (brachytherapy). They want to do what they know. And a lot of people go with whatever the doctor says.”

Smith and his wife Lisa are in the process of restoring a 36-foot sailboat, which they plan to live on for the foreseeable future. They will travel, then determine where they want to settle down. “We are enjoying our lives,” he says.

“For me, proton beam was a treatment I was privileged and blessed to have, but it’s just something that I did, and I’m glad I did it. If I see an article on it, I’ll read it. But it’s not something that I need to make a major part of my life.”

This article originally appeared March 20, 2015, in Proton Therapy Today. Used with permission.

The 11th Annual Play Golf. Fight Cancer.® Classic , UF Health Proton Therapy Institute’s primary fundraising event, is Oct. 11-12, 2015, at The World Golf Village, St. Augustine, Fla. The event is being presented by IBA and .decimal with additional support from Shepherd and has something for everyone.

A dinner and silent auction is planned for Sunday, Oct. 11, in the World Golf Hall of Fame & Museum. For all who register as a player, you automatically have a ticket to the dinner. However, tickets to attend the dinner and silent auction are also available for those who do not wish to play golf.

Aside from a great dinner, you will enjoy entertainment such as:

• A live auction called by local celebrity Chef Robert Tulko.

• Bid on auction items such as

• A one-week stay at a North Carolina cabin
• A luxury boat excursion for 6 people
• Dinner for 6 prepared by Chef Robert Tulko
• Passes to the 2016 The PLAYERS tournament
• A laptop computer

• A look inside the World Golf Hall of Fame & Museum honoring the greatest players and contributors to the game of golf.

• Try out the new Golfzon golf simulator for a virtual experience playing on a choice of 150 worldwide courses

The tournament will be played Monday, Oct. 12, on both of the o ffi cial courses of the World Golf Hall of Fame. The King & Bear is a course that has the distinction of being the only design collaboration between namesakes Arnold “The King” Palmer and Jack “The Bear” Nicklaus. The Slammer & Squire is a championship resort course designed by Bobby Weed with consultants Sam “The Slammer” Snead and Gene “The Squire” Sarazen.

Golfers will have the chance to win prizes along the way and to meet and greet 7-time Olympic medalist Shannon Miller. She is the honorary chair of this year’s tournament and is the keynote speaker at the awards ceremony following tournament play.

Please join us in support of proton therapy research and register today at www.playgolffightcancer.org website. To donate or support the cause in some other way, if you are not available for the event, contact tournament chair Michael McPhillips at mcpforegolf@gmail.com (904) 910-7098 or Judy Taylor Holland jholland@floridaproton.org (904) 588-1401.