Steven Fitzgerald: Patient One in Proteus®ONE

Steven Fitzgerald is optimistic. He’s feeling pretty great and pretty lucky, so far. As of December 5, he’s halfway through a course of proton therapy, delivered with pencil beam scanning at the UF Health Proton Therapy Institute in Jacksonville to put an end to a stubborn brain tumor.

His craniopharyngioma was first diagnosed in 2014 and treated with surgery near his home in New York. At that time, his physician said there was a chance the tumor could grow back. Steven researched treatment options and learned that the UF Health Proton Therapy Institute in Jacksonville, Florida, has excellent success rates treating this type of tumor. Taking matters into his own hands, he moved to Ocala, Florida, in October 2015 with his wife and newborn daughter to be near the Institute should the tumor recur. His parents moved to Palm Coast, Florida, to be nearby, too.

In August, Steven began experiencing symptoms, including vision loss. He immediately went into surgery at UF Health Shands Hospital in Gainesville, Florida, to remove the tumor that was pressing on his optic nerve. After a short recovery period, he started proton therapy in Jacksonville in November, commuting from his parents’ home for daily treatment. On the weekends he goes home to Ocala to see his wife and now 4-year-old daughter.

On December 9th, Steven was the first patient to be treated in the Institute’s new gantry – a Proteus®ONE single-room proton therapy system installed in a 10,000-sq.-ft. expansion of the facility. He is scheduled to complete his course of proton therapy on December 26 with a high degree of confidence and hope that the tumor never returns.

The Lastinger Family Foundation Creates Endowment for Pediatric Care

An exceptional gift from The Lastinger Family Foundation of St. Augustine, FL, has created the Lastinger Family Foundation Endowment for Pediatric Care at UF Health Proton Therapy Institute. 

The fund will provide support for the care of pediatric patients and their families at the Institute. Support generated by this endowment will help our pediatric patients and their families in many ways, but in particular, through the UF Health Proton Therapy Institute’s Pediatric and Child Life Program.

Mr. Allen and Mrs. Delores Lastinger, Officers of the Lastinger Family Foundation, were motivated to make a gift to help our youngest patients when they observed members of our pediatric team working with children and their families. Our staff is challenged daily to help pediatric patients and their families cope with treatment and the multitude of circumstances that a diagnosis of cancer can create. Our team knows that battling cancer at a young age extends to the entire family, and that families who have a child undergoing treatment may have economic challenges, logistical issues, difficulties with scheduling tutoring, and may even have to consider relocating for several weeks in order to secure the best treatment possible. We strive to provide support for our families that allows both the patient and their family to focus on treatment.

Private philanthropy is vital to the services provided by UF Health Proton Therapy Institute, especially services that create special moments and memories for patients and families. “This very generous gift from the Lastinger Family Foundation will truly advance and support our work with our pediatric patients,” says Executive Director Stuart Klein. “We are incredibly grateful to Allen, Delores, and the Lastinger Family Foundation for their endorsement of our program.”

IJPT Indexed in PubMed

The official journal of the Particle Therapy Co-Operative Group (PTCOG), the International Journal of Particle Therapy, is now indexed in PubMed Central, beginning with the Winter 2016 Carbon Ion Special Issue. Launched in 2014, the journal’s mission is to provide a preferred venue for disseminating the most up-to-date research in proton, light-ion and heavy charged-particle therapy.

PTCOG is the non-profit, worldwide organization of scientists and professionals interested in proton, light-ion and heavy charged-particle radiotherapy. The mission of PTCOG is to promote science, technology and practical clinical application of particle therapy through continuing education, international conferences and scientific meetings, with the ultimate goal of improving treatment of cancer to the highest possible standards in radiation therapy.

PubMed Central is a free full-text archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health’s National Library of Medicine (NIH/NLM).

“We are extremely proud of IJPT’s achievements thus far,” said Nancy Mendenhall, MD, FASTRO, editor-in-chief of the IJPT. “In particular, our acceptance by the National Library of Medicine – which utilizes a meticulous selection process examining our scientific and editorial quality and impact – reflects our important role in the overall advancement of particle therapy research.”

Since its founding, IJPT has received manuscripts from nearly 300 prominent radiation oncologists, physicists, and dosimetrists from 200 institutions around the world. IJPT is a quarterly, open access journal that does not charge any article submission or processing fees. Articles are also digitally archived by Scopus, Portico, J-Gate, EBSCOhost, Google Scholar, and the Directory of Open Access Journals.

Visit https://www.ptcog.ch/ for more information on the Particle Therapy Co-Operative Group. Visit https://theijpt.org/ to view all issues of IJPT and for more information on the journal.

Executive Director Message

StuartKlein.pngThank you to everyone who has called or emailed your elected representatives in Congress to speak up for proton therapy. While we will not know the outcome for several weeks, we know that we are doing everything possible to fight for patient access to proton therapy.

We are nearing completion of our expansion project, and expect to begin treating patients in our new treatment room in early December. It is equipped with the latest pencil beam scanning and will be the second room we bring online with this technology. Once the new room is operational, our plans are to retrofit our blue gantry room with pencil beam scanning beginning early next year, eventually making this form of treatment available in three treatment rooms. When our expansion and upgrade project is complete, we will have a total of five treatment rooms: four gantries and one fixed beam. These additions and improvements will enhance patient care and lead to high quality outcomes for more patients.

 

Stuart L. Klein

Executive Director

After Proton Therapy for Prostate Cancer, What’s Next?

What do men who treated their prostate cancer with proton therapy do once they return home? They party.

In the fall of 2013, less than two years after finishing his proton therapy in Jacksonville, a South Carolina UF Health Proton Therapy Institute alumnus realized he knew of several other proton alumni who lived within a short drive of his home. So he and his wife decided to host a small local get-together. To be exact, they invited ten other local couples to their home for some proton-themed fun, food, adult beverages, and camaraderie.

The host was Ron Nelson, author of the book PROTONS versus Prostate Cancer: EXPOSED, over fifty articles for The After Proton Blog, and a frequent speaker at the Institute’s prostate cancer clinics. Recalling the 2013 proton party, Ron said, “It felt like a little taste of what we all appreciated so much while being treated in Jacksonville. Nothing quite compares with that feeling or the unique connection we developed with each other, having walked the same path.”

Ron continued, “The party was actually a completely uncharacteristic thing for me to do. I’ve never been a party person, rarely went to them and certainly never hosted one. I’m still not exactly sure why, but it somehow seemed like the thing to do. So we did.”

Each year since then Ron and Lucy have continued what has become a tradition of hosting a local annual get-together for prostate cancer survivors treated with proton therapy. The mission is to provide a local venue for proton alumni to meet, reunite, and celebrate their good fortune together. “We rekindle our connection,” said Ron. “Even a strong bond needs nurturing.”

Ron calls this annual event “Empty, Drink, & Be Merry,” an inside reference that only prostate cancer patients will understand and appreciate. And he is steadfast that it’s strictly a party—not a fundraiser, support group, or educational forum. Ron and Lucy provide food and beverages, and each year Ron devises a proton-themed game with “fabulous prizes donated by the Institute,” where most of the men were treated. The coveted grand prize is a well-guarded secret, and always a big hit.

Ron and Lucy make a concerted effort to be inclusive. Although most of their guests were treated here at the Institute, a few were treated elsewhere. And while almost all the men are prostate cancer survivors, guests have occasionally included survivors of other cancers treated with proton therapy. The guest list has even included men yet to be treated, possibly still undecided about how to proceed, and interested in hearing more about proton therapy from those who know.

“It’s been an amazing ride. Year after year, word has spread, and our guest list has grown beyond anything Lucy or I ever imagined. This year, for our seventh annual Empty, Drink, & Be Merry celebration there were over sixty of us! Lucy and I are honored that so many survivors have come to our home,” said Ron.

And Ron’s little proton party is no longer strictly local. “Some drive several hours within South Carolina, and we’ve even had guests from North Carolina, Georgia, and Florida who stay overnight in a hotel just so they can celebrate with this group of amazing people,” said Ron. “UF Proton deserves a lot of credit for instilling such patient unity, and we celebrate them as well as our good fortune in discovering proton therapy.”

What does all this prove? “It’s simple,” says Ron. “Proton people are happy people who like to party together!” That sums it up nicely.

Contact Ron at Ron@ProtonsExposed.com to request an invitation to the 2020 Empty, Drink, & Be Merry celebration and become part of this annual fall gathering of proton / prostate cancer survivors.

 

Boy from Norway Returns for Victory Lap

Dr. Indelicato and Theodor Lonrusten Midttun
Dr. Indelicato and Theodor Lonrusten Midttun

Theodor Lonrusten Midttun of Norway was just 3 years old when he was diagnosed with a brain tumor. Five years later, he received the “all clear,” and with his parents and sisters returned to the UF Health Proton Therapy Institute in Jacksonville to celebrate.

His father Teddy said, “we promised each other 5 years ago, if everything went good, to go back to Florida and do all the good things we experienced, without the cancer clouds and worries hanging over us.”

Happily, they received good news in August and made the journey back in September. Theodor’s parents said Jacksonville made a huge impact on the family during the time they were here for proton therapy. His father Teddy credits the “American spirit, humanity and professional attitude” that gave them hope and strength to get through the hard times. “People care in a way that was not too touchy, but was encouraging. It felt like everyone wanted the best for Theodor,” he said.

Today, 8-year-old Theodor loves gymnastics, and when he’s in Florida, loves the ocean – especially when playing in the waves with his sisters Bertine, 10, and Mathilda, 5. His parents, Heidi and Teddy, say Theodor enjoys the simple things in life and has a kind heart, ready to lend a helping hand to his classmates and anyone in need.

The Midttun Family and Dr. Indelicato
The Midttun Family and Dr. Indelicato

 

Patient Art Gallery Named in Honor of Karen L Cranford

Dr. Mendenhall and Karen L Cranford
Dr. Mendenhall and Karen L Cranford

“Associating our art gallery with Karen L Cranford’s* name is an absolutely perfect connection,” said Bradlee Robbert, Director of Operations at the UF Health Proton Therapy Institute. “By all reports, she was quite a spitfire who loved color and things that sparkled. This gallery has both.”

It has been over five years since Karen and her mother travelled from North Carolina to seek treatment for Karen at the Institute. It’s a trip that was made all the more stressful because Karen’s father had recently succumbed to an unexpected cardiac event.

But, as would be expected, Karen and her mother found peacefulness and an exceptionally caring staff at the Institute. Some of that came through the art gallery and artists-in-residence who worked with patients, transforming nervous moments into pleasant exchanges and a sense of serenity. For both mother and daughter, it meant comfort in times that usually would have been filled with anxiety.

Seeing how important it was to Karen, her mother, Mrs. Cranford, made a contribution so that other adults — as well as children — could benefit from art therapy through the art gallery and the Child Life program through the Children’s Fund.

In addition, Mrs. Cranford’s gift will support the Karen L Cranford Endowment for Head and Neck Cancer Research that provides support in perpetuity for research at the Institute. “We are grateful for Mrs. Cranford’s generous gift in the loving memory of her daughter Karen, a remarkable woman,” said Nancy P. Mendenhall, MD, medical director of the UF Health Proton Therapy Institute.

For information about the Karen L Cranford Art Gallery or the Endowment, please contact Kathy Murray at kmurray@floridaproton.org or 904-588-1519.


*Please note: Karen L Cranford did not put a period (.) after the initial L in her name.

 

Supporters Gather to Play Golf. Fight Cancer.®

Almost 98% of the patients treated at the UF Health Proton Therapy Institute are treated on research protocols so it stands to reason that our annual fundraising golf tournament — Play Golf. Fight Cancer.® — would dedicate funds raised to research. This year’s 15th Anniversary Tournament, held October 21st at World Golf Village, is no exception.

Stuart Klein, Executive Director of UF Health Proton Therapy Institute, told attendees “Your support of the proton research fund gives us the ability to perform research that is changing the way cancer treatment is handled in the United States and around the world.”

Since opening in 2006, the Institute has treated more than 8,500 patients from across the U.S. and from many other countries. Among the patients already benefiting from proton therapy are those with prostate cancer, pediatric malignancies, sarcomas, Hodgkin’s lymphoma, lung cancer, pancreatic cancer, head, neck and brain tumors as well as breast cancer and eye tumors.

The event had impressive support from IBA, .Decimal and Shepherd along with important backing from a variety of other sponsors.

Winning teams for this year’s tournament were:

1st Place: – Jeff Goolsby, Jeremy McDonald, Madison Swartz, Brad Robbert

1st place winners

2nd Place – Joey Bachelor, Sung Li, Dave Spradlin, Trevor Fleming

2nd place winners

3rd Place: Jeff Toadvine, Ben Hankinson, Tom Hankinson, Steve Amos

3rd Place winners

 

Our heartfelt thanks to all who participated whether as a sponsor or player or both. We’re glad you joined us to Play Golf. Fight Cancer.®

 

A Relaxing Option to Help Relieve Joint Pain - Yoga Therapy

“It takes away my pain,” said Rozina Behrooz, coordinator of Residency and Fellowship programs for the UF Health Proton Therapy Institute. “I go every Monday evening. It’s rare for me to miss a class because it helps me so much. Why would I want to miss it?”

There are three classes on Mondays, one for patients and two for staff, taught by Marcy Knight. Ms. Knight has a special certification in yoga for radiation oncology patients so she is especially “in tune” to our Institute patients. The help she gives patients is nothing short of miraculous some say.

“For me, it’s about relaxation and being pain-free,” said Rozina. “On Monday at the end of work I’m usually pretty tense. But I go to yoga and relax. I feel the benefits immediately. My joint pain goes away!”

Rozina tells a story about leaving work and walking to her car one evening after yoga class. Part way to her car she realized that her joints that are usually painful weren’t hurting at all. She’s sure it’s because she took her regular yoga class before leaving the Institute.

Rozina recommends yoga to other staff members and suggests it to Residents and Fellows regularly. She points out the benefits of relaxing, flexibility, less pain especially joint pain, and immediate benefits. If others say they would come but they don’t have a mat, Rozina points out that the program has extra mats they can use. Or if getting down on the floor is an issue, chair yoga is an option. The person does yoga exercises while seated in a chair and gets the benefits of regular yoga.

For anyone interested, yoga classes are free to participants. Classes are held in the Research Room. Wear loose, comfortable clothing and shoes. Bring a mat if you have one. If you don’t, we’ll find one for you. Classes are at the following times:

  • Patients at 3 PM
  • Staff at 4 PM
  • Staff at 5 PM

If you have questions about yoga or any other activity for patients, their families or staff, please call Brad Robbert, Director of Operations, at 904-588-1251.

Ambassador Program

It’s not uncommon for patients who have completed their treatment program and are satisfied with their experience to say, I want to give back. What can I do to help others who have been diagnosed with cancer and are looking for information? It was with this patient initiative that the UF Health Proton Therapy Institute began our Ambassador program approximately 10 years ago.

Currently, we have close to 500 alumni patients who provide their name and contact information so prospective patients can contact them directly and ask questions. These teams of former patients are not medical professionals offering medical information but are able to share why they chose proton therapy versus other treatment options, why they chose the UF Health Proton Therapy Institute and also share their experience with the level of care received at the Institute. Once a patient signs a release allowing us to share their name, it is included with our packet of materials sent out to inquiring individuals upon their request.

We would like to expand our Ambassador program to include spouses and caregivers. While cancer always impacts the whole family, prostate cancer is considered to be a couple’s disease. The wives who spend multiple weeks in Jacksonville at our Institute alongside their husbands going through treatment become experts in their own right when it comes to what it’s like to be the caregiver and support for their loved one.

If you are a spouse interested in helping other spouses and caregivers as they travel though this journey, please contact Lisa Ward, 904-588-1412 or lward@floridaproton.org, who can answer your questions and help you get started.

We are extremely grateful for our Ambassadors who eagerly volunteer to speak with prospective patients honestly and from the heart. We know this program has helped hundreds who are working their way through the multitude of decisions they will need to make following the diagnosis of cancer.

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About This Newsletter

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

 

Keep In Touch

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

 

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