WEEKLY WEB REVIEW – WEEK 8

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is improving quality of life during and after cancer treatment. 

STUDENT WITH INOPERABLE CANCER GETS ALL-CLEAR

Sam Williams, a 23-year-old student from the UK who was diagnosed with an inoperable tumor, has been given the all-clear after just 7 weeks of proton therapy.

Back in 2015, Sam was given the devastating news she had stage 3 nasopharyngeal cancer after it had been missed 3 times by GPs who said the lump on the right side of her neck would go down if left. Tests finally detected cancerous cells in the swollen lymph node in Sam’s neck, which meant the actual tumor could have been anywhere. An MRI scan showed a rare type of head & neck cancer in the upper part of her throat, behind her nose. Because of its position, it could not be operated on, and Sam needed chemotherapy and radiation therapy. But as specialists listed the side effects of radiotherapy, Sam felt horrified and went away to research the alternatives. That’s how she found proton therapy and started a Crowdfunding campaign with her family to raise the £57,000 for treatment at the Proton Therapy Center in Prague, Czech Republic. “At the start of August, I left the UK having had 2 weeks of chemotherapy and got on a plane to Prague, knowing I had proton beam and more chemotherapy in front of me,” she said. “I got mouth sores and a scratchy throat and I felt a bit rubbish, but other than that the side effects were minimal.” Her tumor disappeared completely after 7 and half weeks of treatment. Today, she still faces 4 years before she is fully discharged and has regular scans, but says she is living life to the full, embarking on a once-in-a-lifetime 3-month trip around Asia with her best friend. She is also calling for proton therapy to be made more widely available for UK patients.

Source: http://www.mirror.co.uk/news/uk-news/student-inoperable-cancer-tumour-gets-9887595

RUNNING DURING PROTON THERAPY

It was into a 32-mile run in the Western North Carolina mountains that 69-year-old Doug Blackford realized he had just completed his 32nd proton therapy treatment for prostate cancer.

A quick look at the list of side effects for radiation therapy (including incontinence, abdominal cramping, diarrhea and fatigue) quickly reveals why an extreme run more than three-quarters into a cancer treatment regimen is not to be recommended. Doug himself was surprised he felt well enough to complete what has become an annual tradition with a few friends and his son.  Blackford, 69, launched his career as an ultra-marathoner in his 50s, initially to support his teenage son who had started cross-country training. “I really didn’t expect to be doing this much after this many treatments,” he said. “I kind of expected it was going to be a lot harder, but it hasn’t been.” Many patients choose proton therapy to avoid the long-term side effects of surgery, brachytherapy or conventional radiation, and many patients report feeling good during treatment as well, prompting the term “radiation vacation”. During his treatment, Doug maintained his regular running schedule while staying in Knoxville for treatment, and the fact that he ran 32 miles following the same number of treatments was simply coincidence. The thought occurred to him during the run. He shared the observation with his friends. And he just kept running.

Source: http://provisionproton.com/blog/2017/02/16/he-just-keeps-running/

 

AWARENESS FOR HPV CANCER PREVENTION

Peg Herlocher, a Michigan resident who was diagnosed with HPV-related metastatic squamous carcinoma last Christmas, is aiming to advocate for HPV cancer prevention.

Peg was diagnosed after she visited a physician for exhaustion and weight loss. Her doctor quickly discovered a lump on her neck, and a biopsy revealed that her cancer was metastatic, meaning its primary site was elsewhere in her body. After doing extensive research on treatment facilities, Peg’s kept coming across MD Anderson in Houston, Texas, which offers proton therapy with concurrent chemotherapy. “I just started my third week of chemotherapy using a biologic therapy which helps preserve my auditory nerve,” she said. “MD Anderson is the top facility in the country for helping combat this type of cancer and they are able to specifically develop a program for each patient based upon their needs. For me, preserving my hearing was huge.” Peg’s prognosis is good as her cancer is related to HPV (human papillomavirus infection). It’s her hope while going through her own journey to bring advocacy and awareness of this all too prevalent cancer. “The numbers of HPV-related cancer is on the rise and will continue unless we have our children vaccinated,” she said. “These cancers are completely preventable. Unfortunately, if our children are not vaccinated by an early age, it will be too late as most will be exposed to the virus by the early 20s. We should be doing more to protect them.” Peg said she was fortunate enough to qualify for proton therapy: “my chances are much better of preserving swallowing, taste, speech and so forth.” Her treatment is scheduled to end in March or early April.

Source: http://www.petoskeynews.com/featured-pnr/in-good-hands-petoskey-woman-fights-cancer-creates-awarness/article_34bbbab4-f21e-546c-b0aa-58fac02b6981.html

 

WEEKLY WEB REVIEW – WEEK 7

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping patients from all over the world and is becoming available in new countries. 

SOPHIE TO HELP SHAPE PIONEERING TREATMENT

Sophie Vohra, a 25-year-old PHD student from York whose life was saved by groundbreaking cancer treatment in America, is helping shape a new service offering the same treatment in the UK.

When she was 23, Sophie started suffering increasingly from bad pains and numbness down her right leg. Her GP referred her to the Christie NHS Foundation Trust in Manchester, and after many tests she was diagnosed with a rare form of cancer at the bottom of her spine called Ewing’s sarcoma. After 14 cycles of chemotherapy, Sophie’s doctor put her forward for proton therapy in America, as her tumor was inoperable. In April 2015, she travelled to a specialist proton therapy center in Florida and had two months of intensive treatment there combining PT with chemotherapy 5 days a week. “I have received all the best opportunities to try and beat this horrible disease. I couldn’t be more grateful to The Christie for helping make it possible. I am now disease free and able to get on with my life and complete my PHD,” she said. Following her successful treatment, she was asked to help shape the future of patient care at the new proton therapy center at The Christie, which will be the first of only two centers to open in the UK and is expected to open in Autumn 2018. Sophie has joined a panel of former Christie patients who have received proton therapy in the US, and who will share their experiences and ideas to help shape plans for the treatment and care offered at the new center in Manchester. Sophie said: “I’m thrilled that I can use my experience to help future patients at the new PT center. I know it will be life-changing for future patients like me.”

Source: http://www.yorkpress.co.uk/news/15073047.Sophie_to_help_shape_pioneering_treatment/

 

GIVING CANCER BOY A LAST CHANCE

Leo Keefe, a 4-year-old who has been battling a rare form of brain cancer for the last 17 months, could soon fly to the US for proton therapy treatment after a fundraising appeal achieved its £150,000 target.

Leo is suffering from a rare type of brain tumor called SPNET. SPNET are usually found in the cerebrum, the largest part of the brain that governs speech and emotion, and are rapidly growing and considered highly malignant, which is why Leo’s mom has been told proton therapy is her son’s last chance. The brave little boy is now awaiting surgery at the hospital in Liverpool, where surgeons are supposed to remove two brain tumors, but will not operate on a nodule below the tumors because of its “critical location” and the risk of causing meningitis. If the operation is successful, the family could travel to the US within two weeks, where the hard-to-reach nodule would be targeted by proton beams. “If any of the tumors grow or the suspicious one grows during PT, then it is totally game over. It is very rare for children to survive a relapsed SPNET tumor but it has been done. After PT if anything grew the surgeons would not operate again and he would be put on palliative care. It is very hard to stay positive but there is no other option,” his mom said. The NHS currently pays for some children from the UK to go abroad for treatment, but Leo does not qualify as he lives in Spain and not in the UK. Fortunately, his mom discovered that the £150,000 fundraising target had been reached, and said she was “in shock” after an anonymous donor contributed tens of thousands of pounds to her son’s cause. Friends and family had raised more than £80,000 through their crowd-funding social media campaign before the anonymous contributor stepped in.

Source: http://www.bbc.co.uk/news/world-europe-isle-of-man-38910793

 

UK NEIGHBORS IN AMERICA FOR CANCER TREATMENT

Two cancer patients who travelled to America for treatment discovered they were actually neighbors from Bolton, UK. Kath Quinn, 68, and Michael Saunders, 71, met for the first time in Jacksonville, Florida, where they were getting proton therapy.

During their time at the hospital, Kath and Michael realized they lived just yards away from each other, and were both patients at The Christie in Manchester, where their doctors recommended them for proton therapy, which is not yet available in the UK. Kath, a mother-of-four, was diagnosed with a hard-to-reach tumor in a passage behind her nose. NHS England agreed to fund the PT treatment and in January, 2016 she and her husband Tony flew to Florida where she underwent 39 treatments over several weeks. She said: “I never wanted to go to America, but the treatment I had there was superb. We met another patient from Manchester while we were there, Michael, and it turned out he lives round the corner from us in Bolton. We have kept in touch after returning home.” Michael, a widower with two daughters, was diagnosed with a skull-based tumor on top of his pituitary gland. He spent 11 weeks in America with his youngest daughter Kerry and underwent 41 treatments. He said: “I met other patients from England there including Kath from Bolton and we had a little UK group. We’d go for meals together and so forth. If the proton therapy had been in Manchester, so close to home, it would have made things a great deal easier for me and my daughters.” Currently the NHS sends people needing PT to the US or Switzerland but from August, 2018 The Christie will be treating patients in Manchester.

Source: http://www.theboltonnews.co.uk/news/15074431.Cancer_patients_in_America_discover_they_are_Bolton_neighbours/

WEEKLY WEB REVIEW – WEEK 6

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is arousing surges of generosity to help young patients from all over the world in their fight against cancer.

6-YEAR-OLD DIAGNOSED WITH RARE CANCER

Eve Batten, a 6-year-old girl from the UK diagnosed with rare cancer after her parents thought she was squinting because of regular iPad use, needs help to get proton therapy treatment in America.

Eve was diagnosed after her parents noticed that her eyes had started to cross over and took her to the ophthalmologist. They thought their daughter had damaged her eyesight from spending too much time looking at her iPad screen, but it was actually a very rare brain tumor pushing on her opting nerves. Doctors found it difficult to make the myoepithelial carcinoma diagnosis, as cases are so uncommon: the condition typically affects salivary glands and has caused brain cancer to only seven other children worldwide. After getting the tumor removed, Eve suffered another crushing blow when doctors informed the family that it was cancerous. Her devastated mom said: “It was horrendous, absolutely horrendous – we never expected she had a brain tumour and just thought she would be getting glasses to correct her squint.” She immediately started 12 weeks of chemotherapy and bravely returned to school just months after her major operation. Her proud mom said: “Eve is just an amazing person – she has not questioned anything and has just got on with it. She has a scar on her head from ear to ear which makes being bald even worse, but she is still a cheeky little monkey.” Eve now needs radiation therapy to complete her treatment, and her family hope that they’ll be able to fundraise enough for her to receive proton beam therapy in America. So far, the family has raised £8,000 of their £150,000 target, and are urging the public to donate to their JustGiving page.

Source: https://www.thesun.co.uk/living/2840513/girl-six-diagnosed-with-rare-cancer-after-parents-thought-she-was-squinting-because-of-regular-ipad-use/

 

RAISING MONEY FOR ALEX’S JOURNEY

Three civil nuclear constabulary (CNC) officers cycled from Cumbria to Newcastle in a day to raise money for Alexander Goodwin, a 9-year-old boy with Ewing sarcoma, a very rare type of bone cancer which affects fewer than 30 children a year.

Alex was diagnosed with Ewing sarcoma in his right thigh, a rare bone cancer that only affects children. His dad Jeff, a former CNC sergeant, has been fundraising to raise £120,000 to take advantage of the latest treatments for Alex’s type of cancer, including proton beam therapy and other treatments which may not be available to his son on the NHS. Insp Matt Fowler, Sgt Tim Cook and Sgt Tom Davies completed the 112-mile cycle ride in under 8 hours to help raise money. “Alex is currently in America having the first stage of his treatment, however the fundraising efforts continue and even though we have completed our cycle, we are still raising funds to support this amazing cause and you can still donate via our Just Giving page”, Mat Fowler said. “Having never cycled this far before in my life, there were moments of doubt leading up to the day but that all changed when Alex left us a video message. It gave us the encouragement and inspiration we needed and brought home exactly why we were riding. So far, we have raised over £1,460 for Alexander’s Journey. We would all like to say a big thank you to everyone who has donated to the cause and to all those colleagues who helped us with the bike ride. News of Alex’s progress and details of the incredible fundraising efforts from across the country are available on his website.

Source: https://www.gov.uk/government/news/cnc-officers-go-coast-to-coast-for-alex

 

LEO WAITING FOR VITAL CANCER THERAPY

Supporters of little Leo Bermejo, who is battling a rare type of brain cancer, are planning to bombard Twitter in the hope of persuading more people, including celebrities, to donate to his fighting fund.

This week, Leo’s family, who live in Vera Playa, Spain, will travel with Leo to Merseyside’s famous Alder Hey Children’s Hospital in England. There, surgeons will remove the last of the aggressive tumors in Leo’s brain. But he must then recover sufficiently to be taken to the US and a treatment center in Oklahoma that uses proton therapy to target his tumors. Surgeons believe proton therapy will give Leo the best chance of recovery and allow him to recover some of the functions he’s lost to the cancer. Leo’s parents need to raise €176,000 to take him to the US for the treatment that may save his life. So far, boy band 911, comedian Keith Lemon and the Jeremy Kyle Show are just some of those to retweet the youngster’s posts. Leo’s parents believe that if enough people donate just €5 they will hit their target, especially on February 4, which is World Cancer Day. To donate to Leo’s gofundme page go to www.gofundme.com/leothelion3

Source: https://www.euroweeklynews.com/3.0.15/news/on-euro-weekly-news/costa-de-almeria/143208-leo-battles-on-as-funds-rise-for-vital-therapy

 

WEEKLY WEB REVIEW – WEEK 5

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is offering better quality of life than traditional treatments, and more options to patients battling cancer.

SCHOOLGIRL BATTLING BRAIN TUMOR SINCE A BABY

Amber Whiston, a brave 7-year-old schoolgirl from Sheffield, UK who has been battling a brain tumor since she was a baby, will fly to the US for proton therapy thanks to generous donations topping nearly £8,000 in one week.

Amber was diagnosed when she was only 7 months old, after her parents noticed something wasn’t right in her left eye. Through this long battle, they have experienced highs and lows, but sadly in December 2016, they were told Amber’s tumor had grown considerably and several cysts had developed causing further problems. On top of hundreds of chemotherapy sessions she has already undergone since she was a baby, Amber had to spend 9 hours on the operating table 3 weeks ago so surgeons could relieve the pressure on her brain. The next step is now specialist proton radiotherapy in the US. Despite her illness, Amber attends Mundella Primary School in Norton Lees while fitting in all the hospital treatments. “I’ve never known anyone so tough, she’s an inspiration,” her mom Lara said. “She’s got an attendance record of about 65% which is incredible.” The NHS have paid for the treatment and accommodation for Amber’s parents but the money raised will mean Amber’s younger brother will be able to join them along with living costs, so that the family can stay together. Lara admitted that setting up the fundraising page was a difficult thing to do, but in just 8 days, friends family, and even complete strangers pitched in. “The fundraising page has left me completely speechless. There’s so much bad things going on in the world and this experience has really restored my faith in humanity,” Lara said.

Source: http://www.thestar.co.uk/news/sheffield-schoolgirl-who-has-battled-brain-tumour-since-a-baby-sets-to-fly-to-us-for-treatment-1-8370142

 

LONDON MAN FIRST TO RECEIVE PT AT CINCINNATI

Troy Witt, a 65-year-old man from London who underwent proton treatment after being diagnosed with a brain tumor just 10 months ago, is one of the first patients treated at the newly established proton therapy clinic in Cincinnati, USA.

It all began last spring when Troy noticed some things out of the ordinary. “My eyes were watering a lot so I thought I’d go to the eye doctor and see if I needed glasses or if something was wrong,” he said. After a few tests, doctors found an orange-sized mass behind his eyes. Troy underwent surgery to remove the tumor, but he still needed radiotherapy to destroy the remaining cancerous cells. Due to the positioning of the tumor, however, the radiation usually offered for cancer patients was precarious. It was then that Troy was referred to the University of Cincinnati Children’s Hospital where he learned about proton therapy, the newest cancer treatment available. “I had daily treatments for 7 weeks,” he said. “I stayed with my daughter in northern Kentucky. They said the side effects would be skin irritation and a 50% chance of losing my eyesight or memory. The only side effect I had was some sores in my nose.” Troy has had no memory loss and was watched closely afterwards for seizures or strokes, none of which he has experienced. Now back at home, Troy is looking forward to enjoying his “country boy” lifestyle: riding on his tractor, planting a garden this spring, playing with his dog and spending time with Brenda, his wife of 50 years.

Source: http://www.thetimestribune.com/news/london-man-first-to-receive-proton-treatment/article_cfcb92da-eaa6-11e6-a753-57562c6c0f96.html

 

PROTON THERAPY FOR BETTER QUALITY OF LIFE
Joe Tuftnell, a 72-year-old retiree from the UK who was diagnosed with prostate cancer 4 years ago, chose traditional treatment for revolutionary proton beam therapy to avoid ruining his quality of life and sexual health. 

When Joe, father of two and grandfather of three, was diagnosed with prostate cancer 4 years ago, he wasn’t afraid of the potentially life-threatening discovery. However, he was concerned about losing his independence, with warnings that he could live with incontinence and erectile dysfunction after undergoing treatment. “I’m fiercely independent,” Joe said. “I didn’t want to have to suffer from incontinence or erectile problems, and I didn’t want to have to compromise the intimacy I share with my wife. And I was just incredibly lucky. I was actually visiting Prague at the time. I’d gone into a bar to get some lunch. I was on my own, looking at a newspaper, and I saw an article about the Proton Therapy Center. It was the first I’d heard about it.” Joe eventually underwent treatment in June 2013 – choosing to pay around £20,000 for private proton therapy at the Proton Therapy Center in Prague, Czech Republic. “Now, after proton beam therapy, nothing has changed. I am the same after as before. I don’t have any problems with incontinence or sex. My quality of life is as good as ever.” While the NHS can pay for the therapy to be carried out abroad, Joe says that many patients are simply not aware that it even exists. Therefore, he is now aiming to raise awareness for the therapy, which is not routinely carried out in the UK.

Source: https://www.thesun.co.uk/living/2408338/cancer-patient-gives-up-traditional-treatment-for-revolutionary-proton-beam-therapy-to-avoid-ruining-his-quality-of-life/