Weekly Web Review – Week 8

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment is helping people fight their disease all over the world.



Support Dawn’s cancer fighting campaign

Dawn Bailey was diagnosed with stage 3 breast cancer last year. She is only 43 and has no family history of breast cancer. She needs to raise money to pay for PT treatment.

“At first, it was discouraging,” Dawn said. Until she learned that with modern treatment, it is not exactly a death sentence. She had a mastectomy, and the tumor her doctors removed was about the size of a lemon. Then she went through chemotherapy and let her kids and husband shave her head. “So much was out of my control,” she said. “I wanted to control it.” Her kids had a good time giving her different haircuts.

Her hair is about an inch long now, and it’s time for her radiation treatments. Her doctor at the Seattle Cancer Care Alliance recommended that she try proton therapy, which more precisely targets the cancer cells. “With the traditional radiation,” Dawn said, “the area they have to radiate is over my heart.” That can cause scarring in the heart and lead to problems in the long run.

But proton therapy is expensive, and Dawn’s treatment will cost about $50,000. One of her childhood friends decided to take matters into her own hands and started a GoFundMe campaign. The first day it raised $8,000. ” So far, it’s at more than $10,800. They have until Feb. 26 to raise the rest of the $50,000. If they do not make their goal, all the money will be returned to the donors.  The campaign can be found at gofundme.com/DawnProton.


Source : http://www.nwnews.com/index.php/local/news-features/10973-whs-alum-gets-support-for-cancer-fighting-campaign


Life account : battling more than cancer

Dwight VonFeldt is a 66-year-old olfactory neuroblastoma cancer survivor from Oklahoma City. Here is the story of his battle against cancer and the insurance system.

« My journey with cancer began two years ago. I went in for surgery on a deviated septum but my doctor told me he had to remove a polyp from my nose to test it for cancer. It came back malignant. My doctor recommended to treat the surrounding area to ensure all cancerous cells were destroyed with proton therapy, which could significantly decrease the risk of harm to healthy organs and tissues nearby like my eyes and brain. Due to the rarity of my cancer, my doctor had to petition my insurance company to cover the treatment with letters and research reporting the benefits for my specific cancer. Thankfully my treatment was eventually approved by my insurance. I’m able to live a relatively normal life. However, more and more Oklahomans are experiencing insurance coverage denial for proton therapy radiation, even though it is the best treatment option for their specific cancer and recommended by their doctor. I cannot imagine being a cancer patient whose recommended treatment was denied coverage. Please join us in the battle against inadequate cancer treatment coverage and help make a positive change in the lives of many Oklahomans who deserve to focus on fighting their cancer, not their insurance company. »


Source : http://journalrecord.com/2015/02/13/vonfeldt-battling-more-than-cancer-opinion/


Fundraising efforts for boy with cancer

Two-year-old Hayden Daufeldt from Iowa was diagnosed in November with pineblastoma, a malignant tumor of the pineal gland in the brain, after being sick with what doctors thought was a cold or a viral infection.

His parents Cory and Kendra Daufeldt say he is keeping in good spirits. While doctors are confident his surgery successfully removed 95% of his rare form of cancer, Hayden still needs chemotherapy in Iowa City and may undergo proton therapy in Houston, Texas.

“It’s a treatment we’re still looking into,” Cory said. “The University of Iowa doesn’t do it yet. It’s safer for small children with brain tumors.” But time off work and travel costs add up. Two separate groups of friends have set their sights on making the financial ramifications of Hayden’s condition a little easier to bear. They call themselves Hayden’s Heros and have so far raised more than $2,400. “It’s all overwhelming and unexpected,” Cory said.


Source : http://muscatinejournal.com/news/local/community-continues-fundraising-efforts-for-boy-with-cancer/article_93e4bb9c-72ff-5916-9d81-f05771e0647f.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 is helping youngsters fight against their deadly disease all over the world.


Little Star award for brave Adele


A brave toddler from Evesham, UK has been honored with a Cancer Research UK Little Star award after she received life-saving treatment in America.

Adele Cooper has been chosen for the prestigious honor to mark her inspirational battle with an aggressive form of cancer. The 3-year-old was diagnosed with rhabdomyosarcoma in June 2012 after doctors discovered a lump the size of a grapefruit growing in her abdomen. Her mom said: “She had been off her food so I knew something was wrong but it didn’t cross my mind that it could be cancer. When they told us, it was like the whole world stopped.”

Adele then underwent six months of chemotherapy to shrink the tumor, and a six hour operation to remove what remained. But it was so widespread that doctors sent Adele to Florida for specialist proton beam therapy treatment.

She received the trophy, which has been backed by stars such as Wayne Rooney and Emeli Sandé, along with a gift card and a certificate signed by celebrities. Adele’s family, who have pledged to keep fund-raising for Cancer Research UK, are now hoping her story will inspire others to nominate children diagnosed with the disease. The award is open to all under 18s who have cancer or have been treated in the last five years and nominations can be made by visiting www.cruk.org/littlestar online.


Source : http://www.eveshamobserver.co.uk/2015/01/30/news-Brave-Adele-picks-up-her-Little-Star-award-126014.html


Superheroes needed to help boy beat cancer

A grandmother is calling on superheroes to help send her grandson to America for life-saving treatment.

Little James Baron from the UK, 4, was diagnosed with rhabdomyosarcoma in November last year. It is a rare form of an aggressive tumor which affects his optic nerve and has spread to his bone. James has already undergone seven chemotherapy sessions but experts believe he is likely to need proton beam therapy, not yet available in the UK.

Fewer than 60 children are diagnosed with rhabdomyosarcoma in the UK each year. Most are younger than 10. The soft tissue sarcomas develop from muscle or fibrous tissue and can grow in any part of the body. With James, it has developed behind his eye, in his optic nerve, and the first signs his family noticed were a bulge in his eye.

James’ grandmother has started fundraising, and will be holding a superheroes-themed disco in the family village this weekend. “Doctors believe he might be a candidate for proton beam therapy, but it isn’t going to be available in the UK for at least another 18 months. We are doing all we can just now to raise funds so they can travel to America for the treatment”, she said. If you wish to donate, please visit https://www.giveforward.com/fundraiser/wz67.


Source : http://www.eastlothiancourier.com/news/aroundthecounty/articles/2015/01/30/522999-superheroes-to-help-boy-beat-rare-cancer/



16-year-old wins $1,000 in her fight against cancer

Serena Lommasson and her mom spent the end of 2014 and beginning of 2015 away from home so she could undergo a 30-day proton therapy treatment in Philadelphia to fight her brain cancer.

Serena was first diagnosed one month before she turned 2 years old. She had surgery almost immediately and had her first round of chemotherapy when she turned 3, for a whole year. Then she had another year of chemo at 5 years old and went through numerous surgeries to remove fluid buildup in her brain and create a shunt. Then, in a six-month period in 2009, she had 15 surgeries to replace the shunt. “That was almost scarier than anything else I’ve had to deal with”, her mother said. At a certain point, Serena’s remaining treatment options were limited, and doctors said she would need proton therapy to specifically target the tumor in her adolescent brain.

A family friend who has known Serena since she was born and the strain of cancer on the Lommassons, nominated Serena and her mom for a giveaway contest organized by the Burke & Herbert bank, called Dreams Do Come True. In December, the bank announced that they had won and would receive $1,000.

While Serena and her mom were in Philadelphia, they tried to make the most of the trip, taking in the Liberty Bell, museums and movies. “We did whatever we could to make it an adventure,” said her mom. “That’s what life is.” The next step for Serena is now an MRI to see how effective the radiation was.


Source : http://www.connectionnewspapers.com/news/2015/jan/29/sixteen-year-old-south-county-student-battles-brai/

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 adding years to life and improving quality of life all over the world, at any age.

Help take 3-year-old Pippa for life-saving treatment in the US

Emily Robinson from Southport, UK, is urging people to support a fundraising drive to take Pippa Belle Cole, her 3-year-old niece for urgent treatment in the US. Pippa has been fighting a cancerous brain tumor and has recently undergone brain surgery.

Emily said: “I feel so passionately about promoting this campaign as without the help of others giving donations, Pippa will not survive. She is an inspirational little girl who has gone through more in her three years than most of us will have to go through in a lifetime.”

Pippa was diagnosed with a grade 3 ependymoma in July 2013, when she was only 18 months. Since then, she has undergone several operations, including 10 hours of brain surgery, and completed a 13 month intensive chemotherapy course which she started in August 2013. She underwent many effects from the chemotherapy : she lost all her hair, a lot of weight and her hearing has been permanently affected.

Unfortunately only three months after finishing treatment, MRI results showed that the tumor was back already. She had surgery again, and after four weeks of recovery, her parents now want to fly her to the US for Proton Beam Therapy treatment.

Pippa’s parents are looking to raise more than £10,000 to make the trip possible. They said: “Without this treatment Pippa will not survive. Because of the position of the tumor normal radiotherapy would cause considerable damage to Pippa’s brain.”


Source : http://www.southportvisiter.co.uk/news/southport-news/please-help-take-three-year-8559371


93-year-old cancer survivor thanks to PT

Harold Rabin from Chicago lives a happy and active life at 93 years old. He didn’t know he would be around to tell this story 24 years ago when he became the tenth person in the world to receive proton treatment for prostate cancer.

Today, Harold is cancer free and living a life that, without the miracle of science, wouldn’t have seemed possible. “At the time I was diagnosed with prostate cancer, proton therapy had just been developed as a treatment for cancer,” recalls Harold.

Harold was then living not too far from Loma Linda University Medical Center, which, just a few years prior, had established the first hospital-based proton treatment facility in the world. Every day Harold would drive himself to and from treatment. He recalls feeling no pain or discomfort, and never experienced fatigue as each afternoon following his treatment, he had enough energy to play a twice-weekly round of golf or meet friends and family to socialize.

Since Harold’s treatment 24 years ago, the technology surrounding proton therapy has continued to be refined, and countless scientific studies have proven it to be an effective and often preferred treatment for many types of tumors including pediatric, head, neck, chest, breast and prostate.

Today Harold lives a full and active life and continues to drive himself to his many social activities like going to dinner, theater and movies with friends. He volunteers by sharing his experiences with prostate cancer patients.


Source : http://www.businesswire.com/news/home/20150202006161/en/Ninety-Three-Year-Old-Cancer-Survivor-Harold-Rabin’s-Life-Active#.VNCZV4ZPfCQ


Little Scarlett off to America for PT to save her sight

Scarlett McCracken is only 10 years old but has already endured a lifetime of heartache.

Just over 4 years ago, she was diagnosed with a brain tumor and underwent lifesaving surgery. Now, the tumor has come back and is threatening her sight.

Her family hoped and prayed the operation would be an end to her traumatic childhood. But active cells left from the operation have been pushing on Scarlett’s optic nerve. As her eyesight has deteriorated acutely, she must now travel to America for Proton Beam Therapy to stop her from going blind.

Scarlett and her mom will be travelling the 4,250 miles to Jacksonville, Florida, or the 4,500 miles to Oklahoma City, Oklahoma, in the next two months to receive treatment. It is likely they will be there for eight weeks.

The NHS has funded the £90,000 operation and travel to America but the family need to raise funds to ensure that Scarlett and her mother can afford to stay out there. Scarlett’s mom said: “We are such a close-knit family and, like any other parents, your children are your world and it’s heartbreaking when you cannot do anything for them.

If you would like to donate to Scarlett’s fund, visit gofundme.com/kvzi90.


Source : http://m.lep.co.uk/news/local/brave-scarlett-off-to-america-for-proton-beam-therapy-to-save-her-sight-1-7082921


Protons prove to be only hope for New York woman fighting late-effect cancer from photon radiation

2015 is a new year for Mary Lanuti. A new year to appreciate the blessings of good health, once again.

For 13 years, Mary had lived cancer free, tending to the home and family she loves.

But an occasional side effect of the conventional radiation used to successfully treat Mary’s rectal cancer back in 2000 finally caught up to her. And Mary was shocked to find she had cancer once again.

“They said it was a radiation-induced sarcoma,” Mary recalls. “They told me it was very, very rare. I said, ‘Why me?’ I couldn’t believe it. But then I figured, I’d beat it once. I’d beat it again.”

And this time, a different kind of radiation — proton beam radiation — would help her do so.

In October 2009, Mary experienced a sudden onset of intense pain running the length of her right leg. “It got to be so bad, I could hardly walk,” Mary says.

A local neurologist administered two injections to the lumbar region of her back and the pain generally subsided. And for the next 18 months, Mary lived at her Endwell, New York, home relatively pain free.

When the leg pain returned, it was even more intense than she had remembered. Mary opted for another lumbar injection. And that required an MRI be taken. The image highlighted a solid tumor on the sacrum, the triangular bone at the base of Mary’s spine.

Her neurologist and oncologist determined it was a cancerous and suggested she seek a second opinion.

In February 2013, Mary traveled three and a half hours by medivan to New York City for an assessment by doctors at Memorial Sloan Kettering Cancer Center. They quickly confirmed the diagnosis of her hometown doctors.

“Being a sarcoma, the tumor, I understood to believe, was the worst possible cancer you can get,” Mary says. “My husband was by my side from day one. My sisters and my kids, they were there for me, too.”

She endured six three-day chemotherapy treatments with minimal side effects. The first treatment was conducted at Memorial Sloan Kettering. The remaining treatments were given much closer to home, at Our Lady of Lourdes Memorial Hospital in Binghamton, New York. “It would run its course 12 hours a day with all the chemicals they had to give me,” she says. Doctors also worked to help manage Mary’s pain through much of 2013.

“They were still trying to figure out what to do with that mass,” says Mary. “My orthopedic surgeon at Sloan said he could operate, but wouldn’t know until he did if he might have to cut my sciatic nerve — which would mean no feeling from my knee down — or amputate my leg.”

Mary wasn’t enthused by those prospects, even if they were worst-case. Eventually, Mary’s surgeon withdrew his recommendation. The surgery, he determined, would do more harm than good.

“Three weeks later, I got a call from the radiologist at Sloan,” Mary says. “He said traditional radiation was out completely because that’s what caused this cancer. He said protons were the best chance of recovering completely.”

Mary and her husband moved into a short-stay apartment in Somerset, New Jersey. The week after Christmas 2013, she began five weeks of proton treatments at ProCure Proton Therapy Center in Somerset.

“Forty-two treatments, five days a week,” Mary says matter-of-factly. “It wasn’t painful. I didn’t have the side effects. I did get a small radiation burn; it itched me. And I had no problem with my urinary tract or my bowels.

“My GP, he said he can’t believe how well I am doing,” Mary continues. “How I look. How I move. He calls me a wonder woman. I’m like my old self again.”

But over the summer, Mary experienced a health scare. And she prepared herself for bad news. It was anything but.

After analyzing a PET scan of Mary in October 2014, doctors at Memorial Sloan Kettering declared there were no cancer cells to be found. Not a one.

“I am cancer free,” Mary says with joy. “My family is ecstatic. They are so happy and thankful. Christmas was a very special celebration.”


Proton clinicians are setting sights on Hodgkin and non-Hodgkin lymphomas

Lymphomas are the new targets for protons. Primarily preferred for treating solid mass tumors, protons are now being viewed as a prudent type of radiation for treating Hodgkin and non-Hodgkin lymphomas.

About 9,000 Americans are diagnosed with Hodgkin lymphoma every year. And more than 65,ooo Americans are diagnosed with non-Hodgkin lymphoma annually.

According to Brad Hoppe, M.D., M.P.H, a radiation oncologist at the University of Florida College of Medicine in Jacksonville, Florida, the combination of chemotherapy and conventional radiation has dramatically increased survivorship for lymphoma patients. “People go on to live for decades,” he says. “And then we see late complications from their treatment, such as secondary cancers and cardiac complications that end their lives.”

Those complications are primarily the consequence of unintended radiation reaching healthy tissue during the time the lymphoma was treated with photons many years before. “Consequently, some oncologists feel the risks of long-term side effects of conventional radiation outweigh the benefits in improving the cure rate with radiation,” Dr. Hoppe says.

Since protons release the bulk of their radiation energy at the specific site of cancerous cells, there is a dramatic reduction in spillover radiation going to unintended areas of the body, what radiation oncologists call the “integral dose.”

“So, the integral dose,” Dr. Hoppe adds, “is the dose we don’t want to be delivering at all. To the breast tissue. To the heart, the lungs and thyroid. With protons, we believe the lower integral dose will lead to lower risk of secondary cancers and cardiac toxicities — which are the primary causes of death for Hodgkin lymphoma survivors.”

Until recently, the use of protons to treat lymphomas hadn’t been seriously explored. “With lymphomas, the conventional radiation doses utilized are quite low,” he says. “Twenty to 30 gray for Hodgkin lymphoma. And 30 to 36 gray for non-Hodgkin. That’s generally a lot lower dose than would cause any short-term toxicities. People thought, ‘If it’s a low dose of radiation, who really cares?’ ”

But over time, clinicians have come to understand the long-term harm photon treatments can generate, especially in low-dose treatments like lymphomas, Dr. Hoppe says.

“With lymphomas, our [radiation treatment] fields are huge because of the distribution of the disease,” says Dr. Hoppe. “The typical Hodgkin field goes from the top of the neck down to the diaphragm. And while we are using low-radiation doses, they are still going to healthy tissue along that treatment path.”

Reimbursement by health insurers remains a challenge. “What an insurer really wants is clinical results that show the superiority of proton therapy over other photon radiation modalities,” Dr. Hoppe says. “They want data right away. But the real benefit of protons isn’t going to manifest itself for 10, 20 or 30 years.”

Dr. Hoppe and an associate at UF Health Proton Therapy Institute, Dr. Julie Bradley, are working to identify biomarkers that may indicate very early signs of cardiac disease caused by unintended radiation, rather than waiting decades. “Our work to quantify early damage is very much in its infancy,” he cautions.

Hodgkin lymphoma study shows prospect of long-term benefits of proton therapy

Smaller amounts of spillover radiation to healthy tissue and organs have heightened interest in using protons to treat Hodgkin lymphoma.


In the first-of-its-kind study, prospectively comparing radiation dose to normal tissue for involved-node proton therapy with three-dimensional conformal radiation therapy (3DCRT) and intensity modulated radiation therapy (IMRT) in Hodgkin lymphoma patients, the mean dose of inadvertent proton radiation of healthy tissue was about 50 percent less than the mean dose of spillover radiation from 3DCRT and IMRT.


Radiation oncologists call spillover radiation to healthy areas of the body that occur during photon and proton radiation treatments the “integral dose.”


“With proton therapy reducing the integral dose by 50 percent, we expect that will translate to a reduction in secondary cancers and cardiac disease in years to come,” says Brad Hoppe, M.D., M.P.H, a radiation oncologist at the UF Health Proton Therapy Institute, associate professor in the department of radiation oncology at the University of Florida College of Medicine in Jacksonville, Florida, and author of the study published earlier this year in the International Journal of Radiation Oncology Biology Physics.


“Involved-node proton therapy represents the greatest minimization of inadvertent radiation exposure to non-targeted tissues possible thus far in the longstanding continuing international effort to decrease radiation toxicity while maintaining radiation efficacy in Hodgkin lymphoma,” Dr. Hoppe writes.


About 9,000 Americans are diagnosed with Hodgkin lymphoma every year. Conventional radiation treatments combined with chemotherapy have permitted lymphoma survivors to live for decades, says Dr. Hoppe. “But secondary cancers and cardiac complications brought on by those conventional radiation treatments many years before are the primary causes of death for Hodgkin lymphoma survivors,” he adds.


Of the 15 patients who participated in the three-year study, one patient suffered a relapse of Hodgkin lymphoma and another patient developed a non-Hodgkin lymphoma. Considering those numbers, the relapse-free survival rate was 93 percent and the event-free survival rate was 87 percent, the study reported.

“The radiation dose reduction was substantial and clearly relevant,” says Dr. Hoppe. “And we didn’t see any unexpected number of relapses of Hodgkin lymphoma. Patients tolerated the treatments well. We even had one patient who got pregnant and gave birth during the follow-up period.”


According to Dr. Hoppe, protons have been used very sporadically in conjunction with chemotherapy to treat lymphomas. The focus of proton therapy has been on solid tumors. But the results of this initial study have spurred interest among radiation oncologists at proton centers to develop treatment protocols for lymphomas in conjunction with chemotherapy.


Study participants included 10 adults and five children. “For pediatric patients with Stage 3 Hodgkin lymphoma, we didn’t see much nausea since the dose to the stomach was quite low,” says Dr. Hoppe. “People would expect more nausea would be experienced by pediatric Hodgkin patients treated with 3DCRT or IMRT.”


Dr. Hoppe says he plans to conduct a multicenter study on the use of protons to treat Hodgkin lymphoma patients.