Message from the Executive Director

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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

 

Expansion, upgrades at UF Health Proton Therapy Institute announced

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By Theresa Edwards Makrush

The UF Health Proton Therapy Institute is expanding its facility to increase the number of cancer patients and the types of cancer it is able to treat. The estimated $39 million project will include system upgrades that will improve treatment efficiency and technology. 

The centerpiece of the multiphase project is the addition of a compact, single-room treatment system. The 10,000-square-foot expansion includes both an accelerator, used to speed up the protons, and a treatment gantry equipped with pencil beam scanning – an advanced delivery technique. Currently, the 98,000-square-foot facility has four treatment rooms – three equipped with rotating gantries and one fixed beam room – all powered by one proton accelerator called a cyclotron. When the addition is completed, the facility will have two accelerators, five treatment rooms – four gantries and one fixed beam room – and will increase patient capacity by approximately 25 percent.

“When the project is completed, UF Health Proton Therapy Institute will have one of the most versatile proton therapy systems in the world,” said executive director Stuart L. Klein, MHA. “Each delivery technique – double scattering, uniform scanning and pencil beam scanning – will enable physicians to use the optimal treatment delivery customized for each patient.”

The first phase of the project is underway and includes upgrades to the original system, which will be completed by June 2016. Funded in part by a $5.8 million budget allocation by the Florida Legislature, the first phase includes adding rolling floors under the treatment tables in two of the gantries, a new imaging system and a new treatment planning system. These updates will enhance efficiency, patient and staff safety, and treatment accuracy. 

Phase two will encompass the expansion construction and installation of the single-room proton therapy system. Bids for the proton therapy system equipment, construction management and architectural design for the expansion have been issued and vendor selection is expected to take place in January 2016. The project is being managed by the University of Florida Planning, Design & Construction Department.

Phase three involves retrofitting one treatment gantry with a dedicated pencil beam scanning nozzle. Pencil beam scanning is an advanced form of proton therapy delivery using a thin beam of protons. Similar to the way one uses a pencil to color in a shape with back and forth strokes, pencil beam scanning uses back and forth strokes calibrated to the exact shape, size and depth of the treatment area. Pencil beam scanning will offer clinical advantages for treating certain kinds of cancer.

Patient Spotlight: Beth Semikin

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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.

Meet Molly Dworkin, Director of Development

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By Theresa Edwards Makrush

We are pleased to introduce Molly Dworkin, director of development at UF Health Proton Therapy Institute. She hit the ground running last fall just in time for our annual Play Golf. Fight Cancer.® Classic and she has kept the momentum going. Responsible for securing philanthropic gifts and donations to further the clinical and research programs at the institute, Molly is building relationships with proton “alumni,” proton friends and others in the community. Among her recent initiatives are an annual fund appeal and a campaign to raise funds to renovate the pediatric recovery and infusion room. 

“I am so energized by the positive spirit of the patients and caregivers as well as the physicians and staff,” said Molly. “Knowing that the good we do today will benefit future patients is a tremendous motivation. I look forward to helping secure that future.”

The Pediatric Recovery and Infusion Room Renovation Campaign will transform the area to reflect the exceptional level of care we provide. The proposed renovations will incorporate soothing colors and child-friendly elements, a more dynamic layout and visual attractions such as LED lighting, video screens and other technology, providing optimal comfort and privacy for our youngest patients and their families.

If you are interested in supporting this cause or other aspects of clinical care or research, please contact Molly at (904) 588-1519 or mdworkin@floridaproton.org.

At the Proton Centre

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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.

Santa Joe delivers donation

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Joe McGee was inspired to be a Santa by the children at UF Health Proton Therapy Institute and the memory of his late brother who was the “original” Santa in his family. As a proton alum, he has generously made a special visit each December since 2014 to hear the children’s Christmas wishes and deliver presents. As a professional Santa in the Atlanta area, he sets aside the proceeds from his appearances and returns in January to deliver a donation to the UFPTI for the Children Fund. We thank him for his gift of time, talent and treasure. You can book him for a Santa appearance in the Atlanta area by contacting him at www.facebook.com/santajoemcgee or email at santajoemcgee@gmail.com.

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.  We will make every effort to remove your name from the list. 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.