Weekly Web Review – Week 13

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment is freeing more and more patients from their deadly disease and giving hope to families from all over the world.

 

Five-year-old boy free of cancer

5-year-old Ashya King, who was at the center of an international manhunt after his parents removed him from a UK hospital without doctors’ consent, has been given the all clear from cancer.

Ashya’s parents claim his life was saved in a “miracle” recovery because he was given treatment in the Czech Republic that was not available for him in Britain on the NHS. They describe the news as incredible. « If we had left Ashya with the NHS in Britain, he would not be with us today. He was too weak and would not have survived, », her mom said. The boy was finally allowed to undergo a 30-session treatment at the Proton Therapy Centre (PTC) in Prague for brain cancer after a long legal battle fought by his parents. His father said Ashya’s condition now justifies their actions. A High Court judge approved the move to take Ashya to Prague for proton therapy, which the PTC said is more effective than the radiotherapy that he was being offered on the NHS to treat his medulloblastoma. Ashya is now feeling better after 30 proton therapy sessions and is now heading back to his family holiday home in Spain. The NHS is building two proton beam centers, one in London and one in Manchester, which are expected to open in 2018.

 

Source : http://www.independent.co.uk/news/uk/home-news/ashya-king-boy-5-free-of-cancer-after-proton-therapy-after-family-flees-uk-for-treatment-10126847.html

 

Two months in America to treat rare cancer

Corey Spence, a 14-year-old girl from Riddrie, UK has made her family proud since she was diagnosed last July with a rare and aggressive form of muscle cancer called rhadbomyosarcoma.

Corey, who lives with her grandma, went to the doctor when she found a lump on the side of her head. « I went to the doctor and they couldn’t remove it. That’s when I found out it was cancer. It had spread to my lymph nodes. » She was given gruelling treatment immediately, and went through a 14-hour operation to remove the tumor. It involved taking skin from her back to cover the area on her head where the tumor was. She will undergo more work in the future. Then the teen left to go to Oklahoma for two months on New Year’s Day to receive proton therapy, not yet available in the UK. Today, Corey is back from America. She said: « They haven’t given me the all clear  yet. I’ll be getting an MRI scan soon. I’ve finished all  my treatment. I’m honestly just relieved to think I don’t need to do any more chemo. I just want to focus on getting better now. » Her grandma said: « I’ve really been inspired by Corey’s journey, the whole family has. There’s times when she’s been really down but she’s picked herself up. It’s been a long hard struggle, it really has. »

 

Source : http://www.eveningtimes.co.uk/news/family-pay-tribute-to-riddrie-teenager-fighting-rare-form-of-muscle-201340n.120986772

 

First PT center in Seattle celebrating its second year

Seattle Cancer Care Alliance Proton Therapy, a ProCure Center that provides cancer patients with advanced treatment that minimizes radiation to healthy tissue, is celebrating its 2nd anniversary.

SCCA Proton Therapy unites top physician experts in cancer from UW Medicine and Seattle Children’s Hospital. Since opening, the center has helped care for nearly 450 patients and created approximately 80 jobs in the Pacific Northwest. Located on UW Medicine’s Northwest Hospital & Medical Center campus, SCCA Proton Therapy is the only proton therapy center within 1,000 miles of Seattle. To commemorate the center’s anniversary, patients, survivors, physicians, and local community leaders have gathered on Thursday, March 26, for an open house including a tour of the facility’s cyclotron, the core piece of equipment used to create protons. One of the patients helped by SCCA Proton Therapy is Robin Baird, who was first diagnosed with stage-two breast cancer in 2001. After successfully treating her tumor with surgery, chemo and X–ray radiation, she thought her journey with cancer was complete. However in 2003, 2005, 2007, and 2011 the cancer returned. Robin found refuge at SCCA Proton Therapy. “The center is a sanctuary,” Robin recalls. “Everyone on staff is an incredible person, and I was really happy there.” Robin is doing well today and has become a patient advocate since leaving the center.

 

Source : http://www.newswise.com/articles/region-s-first-proton-therapy-center-celebrates-second-year-in-seattle

 

Weekly Web Review – Week 12

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment is helping to take care of more and more children with life-threatening diseases and giving hope to many families from around the world.

 

Brave 9-year-old facing new cancer fight

 

Brave Alex Novakovic, a 9-year-old boy who received life saving cancer treatment, is facing a second fight against the disease as doctors found new tumors on his lungs and skull.

In 2013, Alex Novakovic flew to Boston for proton beam therapy to treat a deadly tumor in his brain. Now, the youngster faces a fresh battle after cancer was found in his lungs and skull. Alex’s uncle said : “Alex hurt his chest while he was playing with his sister and we took him to the doctors. An MRI showed spots of cancer. They were quite surprised because it was totally clear at the facility where he had the proton treatment.

Alex will now have a two-week break before starting a second round of chemotherapy. In that time, samples of the tumors have been sent for laboratory testing, to find out what treatment will work best. “He tolerates chemotherapy very well. It is a bit of a jaunt to go to the hospital and back for the treatment, but he is determined to spend time with his sister.”

 

Source : http://www.thametoday.co.uk/news/local-news/brave-alex-novakovic-9-facing-new-cancer-fight-after-doctors-find-disease-on-his-lungs-and-skull-1-6639145

 

Destiny travels to Jacksonville for cancer treatment

Destiny Dye, an eight-year-old girl from Dundee, UK is suffering from Ewing’s sarcoma bone cancer, which affects only 30 people in the UK. She is heading to Florida for specialist proton beam therapy.

Destiny has had to undergo nine surgical procedures since last May as well as intensive chemotherapy to fight the cancer growing in her skull. In December, a cancerous tumor was removed from Destiny’s head and she returned home in time for Christmas.But doctors now feel specialist proton beam therapy, which is not available in the UK, may be necessary to beat the disase. The treatment can cost up to £100,000 per patient

The NHS is paying for her treatment and accommodation but fund-raisers have donated money for the family’s living costs while in the United States.

Destiny’s Cancer Journey Facebook page revealed the family departed for Jacksonville on Monday morning. It said: “Would like to say a massive thanks to everyone for all your support and continued support. You have all been amazing and kept us strong.”

 

Source : http://www.thecourier.co.uk/news/local/dundee/dundee-girl-destiny-travels-to-jacksonville-for-cancer-treatment-1.851709

 

 

End of treatment for brave brain tumor sufferer

Lauren Uncles, a 12-year-old girl who was diagnosed with a brain tumor during a routine eye test is now more than half way through treatment which could cure her for life.

Lauren from Barton, UK has been receiving proton beam therapy in the US since the end of January after she was diagnosed with a benign tumor. She had been complaining to be unable to see the board at school and it was only when her mum took her for an optician’s appointment it was revealed there was a tumor pressing on her optic nerve. She had surgery to remove the tumor, but some of it remained and caused fluid to gather on her brain. Her doctor decided proton therapy would be the best course of action for her treatment.

She has just eight sessions remaining of the daily treatment. Lauren’s mom said “The treatment is daily and lasts for about 25 to 30 minutes. She also has a weekly MRI and, so far, each one has the results that we like to hear. There’s no fluid on her brain; she’s also not had any of the side effects so far.” She also said there was plenty for families to get involved with at the proton center where Lauren was being treated, and they were all ‘coping well’.

 

Source : http://www.burtonmail.co.uk/Treatment-end-brave-brain-tumour-sufferer-Lauren/story-26162110-detail/story.html

Moving on from prostate cancer

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 efficacy. But then, they would talk all about the possible side effects like impotence and incontinence — except for proton beam therapy.”

At the time, there were only a handful of clinical centers offering 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 staff of the soon-to-open University of Florida Proton Therapy Institute (now the University of Florida Health Proton Therapy Institute) 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 UF Health Proton Therapy Institute 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 is Part 2 of Ben’s story. Part 1 is here  http://www.proton-therapy-today.com/ufptis-first-patient-one-year-later-2/

Weekly Web Review – Week 11

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment is improving life and giving hope for a better future to many patients all around the world.

 

Toddler fighting rare form of cancer

18-month-old Isla-Grace from Leeds, UK is taking her fight with a rare form of cancer.

She was diagnosed with Ewing’s Sarcoma in September, after her parents noticed a swelling on the side of her neck. 

 

This type of cancer is rather rare and impacts less than 30 people in the UK every year.

Since her diagnosis, Isla-Grace has been fighting the disease and has gone through numerous doses of chemotherapy. She is now facing an operation in March before heading to Oklahoma in America to have proton beam therapy.

Treatment and travel has been funded by the NHS but the family has been fundraising to support their living costs and rent a home during their 12-week trip. They have been fundraising to help support the treatment and have been overwhelmed with the amount of help their daughter received so far:  “It’s just been absolutely amazing. We’re completely overwhelmed with the support, it’s a massive weight off our shoulders.”

 

Source : http://www.heart.co.uk/yorkshire/news/local/leeds-family-raise-money-cancer-treatment-america/

 

Green light for cutting-edge cancer treatment

The UK Government’s approval to provide £250m to build two proton beam therapy centers marks the first time life-saving treatment will be available on the NHS.

Last week, the Health Secretary gave the go-ahead to £250 million plans to build two proton therapy centers in London and Manchester. Children battling cancer will benefit from cutting-edge proton beam therapy on the NHS for the first time.

The key benefit of proton beam therapy is that it can treat hard to reach cancers without causing damage to surrounding healthy tissues. The benefit of proton beam therapy thus lies in its ability to eradicate the cancer cells while leaving the healthy surrounding tissues unaffected.

The two centers are set to open in 2018 at University College London Hospital and the Christie NHS Foundation Trust in Manchester. Patients in the UK who currently need the treatment are sent abroad to specialist centers in the US. Some have their treatment funded as part of NHS England’s overseas programme, while others raise the money to fund their own therapy.

 

Source : http://www.dailymail.co.uk/health/article-2989748/Green-light-cutting-edge-cancer-treatment-Government-approval-250m-proton-beam-therapy-centres-marks-time-life-saving-treatment-available-NHS.html

 

Battling more than cancer after diagnosis

Discover the story of David Denney, who was once diagnosed with brain cancer but is now leading a normal life thank to proton therapy.

« On New Year’s Eve 2011, I had a seizure and began 2012 in a hospital bed with an uncertain future. The cause was a brain tumor the size of my fist. I needed surgery, chemotherapy and radiotherapy. I quickly learned that proton therapy was the best treatment for me because it would go straight to the tumor and spare the healthy tissue around it.

Unfortunately, my insurance company decided to rescind coverage for proton therapy even though it was the recommended treatment from my surgeon and oncologist. I had wonderful advocates who fought for my health and due to their exhaustive efforts, the decision was successfully appealed, allowing me to receive proton therapy as planned.

Throughout my two-month treatment I had minimal side effects and was able to live a relatively normal life. It has been almost three years since I completed treatment. Every three months I have an MRI to monitor the area that was treated, but I have returned to my daily routine and am able to spend time with my family without worry. I know that if I had not been covered for proton therapy by my insurance company, but instead had to undergo traditional radiation therapy, there would have been an increased potential for a secondary tumor and additional damage to my brain tissue. With proton therapy, I was able to keep my vision and vital brain tissues. »

 

Source : http://www.tulsaworld.com/opinion/readersforum/david-denney-patients-battle-more-than-cancer-after-diagnosis/article_48bd8176-c259-5cd1-8d7d-fe136db9439f.html

 

 

 

Weekly Web Review – Week 10

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment is saving lives around the world and giving hope to young people facing their disease.  

 

Back home after 10 weeks of PT in the US

                                                                                                                                                                                                                                                                                                             In September, 16-year-old Kayti Spargo from Melton was diagnosed with rhabdomyosarcoma, a cancer that affects only 60 children in the UK each year.

Now, she has just returned from her 10 weeks of proton beam treatment in the USA.

Kayti admits the first time she wore the made-to-measure face mask enabling her to undergo specialist cancer treatment targeting a rare tumor behind her nose, she was terrified. “I’m claustrophobic and when they put it on they clamp it at the back and there are no eye holes,” she recalled. The therapy’s pinpoint beam targets cancers without damaging vital organs which, in Kayti’s case included her brain, eyes and ears.

The daily half hour sessions at the University of Florida Proton Therapy Institute, in Jacksonville were supplemented by chemotherapy sessions every three weeks, draining her body but never her spirit.

A small army of family, friends and colleagues helped her dad decorate their home ready for her return. “Getting back home and seeing the house done up so nicely, knowing that all those people gave up their time to help me and my family was overwhelming, really,” she said.

Kayti, who has already had one teen fantasy novel published on Amazon and is part way through a second, is also planning to write a book on her experiences to help other teenage cancer sufferers. “I want to write a teenagers’ guide to cancer, about the treatment and feelings you go through.”

 

Source : http://www.leicestermercury.co.uk/Brave-Kayti-home-10-weeks-specialist-cancer/story-26105446-detail/story.html

 

 

 

 

 

 

Brave Scarlett heads Stateside for urgent treatment

Scarlett McCracken, a brave young girl who needs urgent treatment to save her eyesight has flown to America last Thursday to start potentially life-changing therapy in Oklahoma.

Scarlett was diagnosed with a brain tumor just over four years ago, and had to undergo a life-saving operation. Despite the initial success of the procedure, she was left with some active cells that have been pushing on her optic nerve and causing her to lose her sight.

It has now deteriorated so badly that the NHS decided to pay to send her to the USA for treatment.

This trip follows a month of intensive fund-raising in order to pay for Scarlett, her mom and grand-mother to stay in the USA while the 10-year-old undergoes proton beam therapy.

The £90,000 treatment, which is not available in this country, is being paid for by the NHS, but the family were left needing around £14,000 to cover their costs while they are in Oklahoma. “It has come round really quickly – it’s amazing news,” her mom said.

Currently, Scarlett’s procedure is not available in the UK, but the NHS is building two proton beam centers, one in London and one in Manchester, which are expected to open in 2018.

 

http://www.lep.co.uk/news/health/local/brave-scarlett-heads-stateside-for-urgent-treatment-1-7137177

 

 

Art auction for Greta Loewen

Little Greta Loewen was diagnosed with a rare form of bone cancer known as Ewing’s Sarcoma just before Christmas. An art auction on Saturday, March 7 in Abbotsford, Canada will raise money for the five-year-old and her family.

Greta has been undergoing treatment and chemotherapy at BC Children’s Hospital and her self-employed parents wanted to make sure they spend every moment with their little girl. They own a local art shop in Abbotsford, and as they are taking time off work to help take care of their daughter, their income are deeply affected. Greta’s cancer is so rare that she needs specific treatments in the U.S. and will soon be headed to Boston for a form of proton therapy not available in Canada.

Fortunately, through the difficult times, their community is banding together to help. There is also a YouCaring.com fundraising page online. An art auction on Saturday, March 7 in Abbotsford will also raise money for Greta and her family. The event starts at 7 p.m. at The Phoenix Lounge, 33780 King Rd.

 

Source : http://www.bclocalnews.com/community/294408551.html

Weekly Web Review – Week 9

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment is giving hope to young people and raising awareness and generosity all around the world.

 

 

 

2-year-old jetting to America for treatment

 

 

February 25th, 2015 – Today, two-year-old Freya Bevan has jetted off with her family to America to get life-saving proton therapy cancer treatment. People are still being urged to fundraise.

Freya was diagnosed with a primitive neuroectodermal tumor last year, and has since undergone numerous operations and sessions of chemotherapy. Her family had hoped she would get NHS funding for proton therapy in America, but following a nine-week wait, they found out last week it would not happen. Now, the Kids n Cancer charity has offered the little girl a lifeline. Since starting fundraising late last year, the Freya Bevan Fund has raised more than £110,000, with £30,000 of that being raised via the gofundme page set up last week. “We are absolutely over the moon, we can’t believe it,” said Freya’s mom. She said she promised to keep everyone who had fundraised up to date. The little girl is set to be treated by Dr Andrew Chang at the ProCure Proton Therapy Center in Oklahoma. When she arrives, she will have to have further scans, with the treatment due to begin a week later.

But despite the charity confirming that they are set to underwrite support the family and underwrite any shortfall in the costs of obtaining treatment in America, fundraisers are still being urged to help the two-year-old. “If it was funded by the health service, if something was to occur, then the hospital would underwrite that cost. But a bed for intensive therapy is anywhere between five to ten thousand a night,” said Mike Hyman, founder of Kids n Cancer.

To donate, visit www.gofundme.com/FreyaBevan_Fund

 

Source : http://www.southwales-eveningpost.co.uk/Freya-Bevan-family-jetting-America-treatment/story-26070217-detail/story.html#ixzz3SlKhPcjt

 

 

 

Young battler meets her hero

The last few years have been a whirlwind for Deni Atkinson, since she was diagnosed with a rare brain tumor in 2013 and later underwent proton therapy in the US in an attempt to stop the growth.

Not only did the therapy stop the growth of Deni’s tumour, it also reduced it by about a third, stunning the Atkinson family and providing relief for what was initially a very scary reality.

By her own account, things have “settled down” now for Deni, who is still getting used to the effects of the therapy more than a year after it was done, and is currently in her final year of high school.

Before settling into school this year, however, Deni and her family were treated to a special trip, thanks to the Make-A-Wish Foundation. Deni, dad Craig, mum Carmen and her two sisters were flown to Melbourne last month for the Australian Open where Deni was lucky enough to meet her idol Roger Federer. “It was really awesome,” she said. “Make-A-Wish just did such an amazing job.”

Deni’s April trip will take her away from her schooling at an important time, but the dedicated youngster, who wants to eventually work in the medical profession, said she was determined to make it work with a supportive school, and teachers, behind her. Despite the tough challenges, Deni said a lot of opportunities had opened up for her and she added she was positive about the future.

 

Source : https://au.news.yahoo.com/thewest/regional/south-west/a/26369054/young-battler-meets-her-hero/

 

Kayti is due home after specialist treatment in the US

A teenager suffering from a rare form of cancer is looking forward to returning home after spending 10 weeks undergoing specialist proton therapy treatment in America.

Kayti Spargo, of Melton, UK was diagnosed with rhabdomyosarcoma in September. She was sent to Jacksonville, Florida, to undergo her proton beam therapy treatment. As Kayti’s tumor is located behind her nose, proton therapy was the best treatment modality to pinpoint the cancer without damaging vital organs and decrease risk to her brain, eyes and ears.

The proton treatment caused a severe rash, making her ears, throat and mouth painful, forcing her to use a feeding tube, but the youngster stunned medical staff by refusing painkillers.

Next week, the youngster and her mom, who has been with her throughout her stay, will fly home. Her dad said : “Kayti can’t wait to get home. The treatment has definitely been taking her toll on her, she’s very homesick and very down. But she’s had the treatment she needed and we now have to wait six weeks before she can have a scan which will tell us how successful it’s been”.

Fund raising events have so far generated more than £4,000 to pay for a dream holiday for Keyti in either Italy or Sweden. Her dad added: “We’re really grateful for all the money that people have raised for Kayti. We’re really looking forward to having her back home now.”

 

Source : http://www.leicestermercury.co.uk/Kayti-home-Melton-specialist-treatment-fight-rare/story-26069005-detail/story.html#ixzz3SnT0HvnV