Executive Director Message

StuartKlein.pngAs an academic health institution, we develop and use treatments informed by clinical research. Our clinical research program tracks the outcomes data of thousands of patients treated with proton therapy. In fact, 98 percent of patients treated here participate in an outcomes registry study and 25 percent of patients are enrolled in clinical trials. The national average of participation in a clinical trial is three percent. We use this high-quality data to document the effectiveness of proton therapy and to develop additional cutting-edge clinical trials for future patients. 

This month, several of our physicians will present new research at the Particle Therapy Co-Operative Group’s (PTCOG) annual meeting in Japan, the largest international gathering of scientists, physicists and radiation oncologists who study and use protons. Presentations at PTCOG are often the first step to publishing research in medical journals. Ultimately, the goal of our clinical research is to realize the full potential of proton therapy to improve cancer patients’ lives.

Survivor Spotlight: Brandon Bell

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.

Brain Tumor Treatment and Proton Therapy Clinical Trials

Rotondo_Ronny_Dr._0.jpgTreating brain tumors and central nervous system (CNS) tumors has been an integral part of the UF Health Proton Therapy Institute since day one. Two-thirds of the children we treat have brain tumors, most commonly craniopharyngiomas and ependymomas. Hundreds of adults and children have benefited from targeted proton therapy that effectively treats the tumor and reduces the risk of side effects. Ronny Rotondo, MD, CM, FRCPC, leads the brain tumor and CNS program, with expertise in pediatric and adult malignancies and base-of-skull tumors. Following is a Q&A with Dr. Rotondo about brain tumors and proton therapy.

Q: May is brain tumor awareness month. What should people know about this type of cancer?

A: There are many kinds of brain tumors. Tumors that arise in the brain can be malignant or benign. Sometimes tumors in the brain are caused by a cancer that has spread from another part of the body. The type of cancer determines the type of treatment which can include surgery, radiation and chemotherapy, often in combination.

Q: What are the symptoms of a brain tumor? How do you know when you should see a doctor?

A:   The signs and symptoms of a brain tumor vary greatly and depend on the brain tumor’s size, location and rate of growth. General signs and symptoms caused by brain tumors may include:

  • New onset or change in pattern of headaches, or headaches that gradually become more frequent and more severe
  • Unexplained nausea or vomiting, vision problems, hearing loss
  • Numbness, weakness, difficulty with balance, speech
  • Confusion/personality changes
  • Seizures, especially in someone who doesn’t have a history of seizures

Make an appointment with your doctor if you have persistent signs and symptoms that concern you.

Q: What role does proton therapy have in treating brain tumors?

A: The benefit of proton therapy is it can deliver high dose radiation to the tumor site while minimizing or even avoiding depositing radiation in other parts of the brain. The higher the dose of radiation, the better chance we have of controlling the tumor. By minimizing radiation to healthy brain tissue, we can reduce the loss of memory function and cognitive function. By minimizing or avoiding damage to critical structures near the brain, we can preserve vision, hearing and hormone function.

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Q:  And for children who have brain tumors, preserving healthy brain tissue can mean a lifetime of benefit.

A: That’s right. Proton therapy’s benefit is seen in both adults and children. We safely treat children who are as young as 18 months old. We can give children an excellent chance of survival and a good quality of life. Studies show that even small amounts of radiation exposure can have a negative impact on a developing child’s IQ. Because proton therapy deposits less radiation in healthy brain tissue than conventional X-ray radiation, we can have a better chance of preserving the child’s IQ.  

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Q: What would a patient experience while having proton therapy for a brain tumor?

A: Brain tumor patients are usually treated over a 5 ½ - 6 ½ week period. Prior to treatment starting, we take CT scans to accurately identify the treatment area. Custom devices are made for each patient, including immobilization masks and body molds. These enable us to position the patient in the exact same spot each day of treatment. Once the patient is in position, the proton beam is delivered for about one minute, during which the patient remains completely still. Overall treatment time is about 35-45 minutes (one hour door-to-door).

Q: Are there side effects?

A: Most patients tolerate treatment very well with minimal side effects. Some side effects may occur including fatigue, nausea/vomiting, headache, hair loss, skin irritation.  

Q: What is the success rate of proton therapy in treating brain tumors? 

A:  Success rates vary significantly depending on the type of brain tumor, spanning from benign or low-grade tumors with excellent long-term survival and more aggressive, high-grade tumors such as a glioblastoma multiforme (GBM) for which outcomes remain poor. 

Q: Is there more that can be done with protons for brain tumors?

A: We have ongoing research to explore opportunities to intensify treatment in some cases which may lead to improved outcomes. We are currently participating in a multi-institutional clinical trial funded by the National Cancer Institute for GBM tumors, the most common primary brain tumors. This study compares a higher radiation dose using proton radiation to the standard radiation dose using IMRT. Both groups will receive the standard chemotherapy, Temodar. The study will allow the researchers to better understand whether this higher dose technique is better, the same or worse than the standard approach. This study is geared towards newly diagnosed GBM. Recurrent tumors and patients who have received prior chemotherapy or radiation therapy for GBM are not eligible. Given patients on this trial must begin treatment within five weeks of surgery, prompt referral after surgery is essential, ideally within two weeks. For further information about this study, please call toll-free 877-686-6009.

Clinical Trials: Moving Proton Therapy Forward

Patient & Mendenhall2_1.jpgSince 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

Honoring Our Nurses

We are fortunate to have so many exceptional nurses at UF Health Proton Therapy Institute. Their dedication to patients and the advancement of proton therapy research is beyond compare. With gratitude, we honor these amazing professionals during National Nurses Week (May 6-12).

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A Special Thank You

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.

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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.