ASTRO'S New Model Policy Supports Proton Therapy for Pediatrics

The American Society for Radiation Oncology (ASTRO) has issued a new Model Policy for proton beam therapy (PBT) that details which cancer diagnoses meets ASTRO's evidence-based standards and should be covered by private insurers and Medicare.  Developed by leading radiation oncologists and medical physicists, including significant input from expert representatives in proton therapy, this Model Policy supports PBT coverage for appropriate patients and identifies areas where coverage with evidence development and further research are needed.  

PBT's reduced radiation dose to healthy tissues is attractive because it can reduce side effects for patients, which potentially increases their quality of life. To date, scientific evidence exists confirming that PBT is particularly useful in a number of pediatric cancers, particularly those in the brain, as well as for certain adult cancers such as ocular melanoma.

In identifying and describing appropriate use of proton-beam therapy, the policy lists four circumstances when use of the technology is reasonable (and most pediatric cases would then qualify):

1.      Target volume is close to a critical structure, requiring a steep dose gradient outside the target to limit the structure's exposure.

2.      A decrease in dose inhomogeneity in a large treatment volume is required to avoid an excessive "hotspot" within the target volume.

3.      Use of photon-based therapy carries an increased risk of clinically meaningful normal-tissue toxicity.

4.      The same area or an adjacent area has been previously irradiated, increasing the need for sculpting to limit the cumulative radiation dose.

 

Ama(yo)zing Mayo Clinic Visit

I was honored to be asked to speak at Mayo Clinic last week regarding pediatric proton therapy and the obstacles parents face.  It was hard not to be impressed upon arrival to Rochester as Mayo Clinic and its affiliates seem to occupy most of the downtown.  With some 35,000 employees the town is a hustle and bustle of medical professionals and patients.  The underground Subway system that is not a mechanical subway, but rather a collection of underground walkways, restaurants and shops allows you to go from most downtown hotels to the clinic without ever going outside or needing a car.  When I walked around town, there were numerous restaurants and activities within close distance of the clinic.   I saw people from all over the world and I thought how lucky are we to have great medical care right here in Rochester, Minnesota.   Being a huge Steelers fan, I tried to ignore the town’s obsession with the Vikings – though a good rivalry.

I commend Mayo proton for preparing to treat pediatrics and having the guts to hear from a person like me how hard work it is.  So with the latest in technology, we were able to broadcast my slides and myself all the way to Phoenix and other parts of the center.  My main message included parents (many nontraditional) being high maintenance and the cancer children coming with siblings, grandparents and a lot of other challenges.   I spoke a lot about insurance challenges and what a disaster it is that insurers often hinder a child from receiving proton therapy.  

I then got to tour the new proton center!  There was a lot of excitement because the beam was going live that day.  I loved the design, very bright and crisp, with keeping in mind workflow and efficiency with anesthesia prep and recovery.   All my hosts listened with open ears as I commented from my standpoint.   I just know parents and the kids are loungers and take more space then really necessary (maybe there is something about controlling the corner of a waiting room.)  I wished my best idea wasn’t a new slushie machine, though I can’t imagine anything more fun for a kid coming out of anesthesia or for that matter a grumpy adult.  I had a chance to talk to many different groups that will be caring for the children and all had a focus on how their area could make the experience positive and fun for the kids.  I left that day thinking this is going to be a truly great center keeping with the high expectations one expects from Mayo clinic.  Besides having some of the top pediatric experts in the world – they have people that care enough to ask and listen.  Special thanks to Becky and Shari for making my trip a wonderful and memorable experience!

 

Proton therapy is a cost-effective treatment for pediatric brain tumor patients

Atlanta, September 22, 2013

Due to decreased side effects, it may also be cost-saving

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PDF of press release and abstract

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Proton therapy, an external beam radiotherapy in which protons deliver precise radiation doses to a tumor and spare healthy organs and tissues, is cost-effective in treating medulloblastomas, fast-growing brain tumors that mainly affect children, when compared to standard photon radiation therapy, according to research presented today at the American Society for Radiation Oncology’s (ASTRO’s) 55th Annual Meeting.

The study used a first-order Monte Carlo simulation model to examine a population of 18-year old survivors of medulloblastoma brain tumors who were assumed to have been diagnosed at age 5 and at risk of developing 10 adverse health events, including various hormone deficiencies, coronary artery disease, congestive heart failure, ototoxicity, secondary malignant neoplasm and death. Primary institutional information on the cost of investment and Medicare data regarding the cost of management of the various adverse health conditions, in addition to peer-reviewed publications analyzing incidence of side effects were used in the simulation model to perform a cost-effectiveness analysis comparing proton and photon therapy from the societal perspective. Outcomes were measured in incremental cost-effectiveness ratios, with costs measured in 2012 U.S. dollars (USD), and effectiveness measured in quality-adjusted life years (QALYs). A societal willingness-to-pay (WTP) threshold of $50,000/QALY was the benchmark.

The clinical benefits of proton therapy have been recognized in reducing side effects when compared to photon therapy, but the significant expense of building and maintaining proton facilities and the high treatment costs have been areas of concern. The study’s results demonstrate that by avoiding years of costly side effects, proton therapy can be cost-effective for children with medulloblastoma. Using current risk estimates and data on required capital investments, proton therapy for pediatric medulloblastoma treatment was not only cost-effective compared to standard photon radiation, but also found to be cost-saving in many simulations.

Results from the base case analysis showed that due to the prevention of side effects, proton therapy was cost-saving. In sensitivity analyses, proton therapy strongly remained the more appealing treatment, in part due to decreased risks of hearing loss, secondary malignancy and heart failure, resulting in cost-savings in more than 95 percent of simulations.

“We believed that proton therapy might prove to be cost-effective in treating pediatric brain tumors, and we were intrigued that it also proved to be cost-saving in the base case and in almost all of the sensitivity analysis simulations,” said Raymond Mailhot Vega, MD, MPH, the presenting author of the study; a resident at Mount Auburn Hospital, the teaching hospital of Harvard Medical School; and a 2014 radiation oncology resident at New York University’s Langone Medical Center. “Proton therapy might prove to be both cost-effective and cost-saving for other malignancies, too, and consequently, more cancer patients may benefit from proton therapy.”

The abstract, “Cost-Effectiveness of Proton Therapy Compared to Photon Therapy in the Management of Pediatric Medulloblastoma,” will be presented in detail during a scientific session at ASTRO’s 55th Annual Meeting at 1:45 p.m. Eastern time on Sunday, September 23, 2013. To speak with Dr. MailhotVega, please call Michelle Kirkwood on September 22-25, 2013, in the ASTRO Press Office at the Georgia World Congress Center at 404-222-5303 or 404-222-5304, or email Michelle Kirkwood.

ASTRO’s 55th Annual Meeting, held in Atlanta, September 22-25, 2013, is the premier scientific meeting in radiation oncology and brings together more than 11,000 attendees including oncologists from all disciplines, medical physicists, dosimetrists, radiation therapists, radiation oncology nurses and nurse practitioners, biologists, physician assistants, practice administrators, industry representatives and other health care professionals from around the world. The theme of the 2013 meeting is “Patients: Hope • Guide • Heal” and will focus on patient-centered care and the importance of the physician’s role in improving patient-reported outcomes and the quality and safety of patient care. The four-day scientific meeting includes presentation of four plenary papers, 363 oral presentations, 1,460 posters and 144 digital posters in 70 educational sessions and scientific panels for 19 disease sites/tracks. Keynote speakers include: William B. Munier, MD, Director of the Center for Quality Improvement and Patient Safety at the Agency for Healthcare Research and Quality; Darrell G. Kirch, MD, President and CEO of the Association of American Medical Colleges; James Cosgrove, PhD, Director, the U.S. Government Accountability Office; Otis W. Brawley, MD, Chief Medical Officer of the American Cancer Society; and Peter Friedl, MD, PhD, of St. Radboud University Nijmegen Medical Centre at the University of Nijmegen and MD Anderson Cancer Center.

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Proton Mom Dot Com is Born!

I was so fortunate to be able to serve as the moderator of the Pediatric Proton Panel on Tuesday, February 12th at the National Association for Proton Therapy's first annual conference in Washington, D.C. Thank you Len Artz for inviting me to be a moderator at your very first conference! My pediatric panel was outstanding and included:

Dr. Daniel Indelicato, University of Florida Proton Therapy Institute
Dr. Anita Mahajan, M.D. Anderson Cancer Center Proton Center
Dr. Andrew Chang, Hampton University Proton Therapy Institute
Dr. Kevin McMullen, Indiana University Health Proton Therapy Center

I can't even begin to describe the variety of information we discussed in our hour long session and as soon as the video is ready I will post it here.  There was a lot of great information shared among our professionals and again as I said in the beginning, "a dream come true for this Mom."  

From all this a new name has emerged, Proton Mom, and that is after another inspiring encounter with Proton Bob.  Bob was at the conference also and his group recently completed a comprehensive survey from prostate patients who had undergone proton therapy for their treatment.  Over 99% stated they would recommend it to others.

 

I met Mike Hyman, Kids-N-Cancer, from the U.K. in person for the first time - we have had conversations on the phone, but not the same. I love Mike for he is dedicated, heart and soul, to helping the children of the U.K. financially when they come to the U.S. for proton therapy. His dedication was palpable.  I was inspired that his sentiments were basically that a parent should never have to bury a child as long as friends and neighbors were willing to pitch in and save a life. We both vowed we could work together in the future.

To my cousin Chuck, who passed away unexpectedly last week - peace and love.

Dr. Kevin McMullen Appointed to the Pediatric Proton Foundation's Board of Directors

The Pediatric Proton Foundation today announced that Dr. Kevin McMullen was appointed to the Board of Directors effective January 2, 2013. This appointment will bring the total number of board members to eight until the Foundation’s next Annual Meeting to be held in conjunction with the National Association for Proton Therapy’s Inaugural Annual Conference, “Impacting Cancer Outcomes through Proton Therapy” in Washington D.C. February 11-14, 2013.

Dr. McMullen is currently medical director of radiation oncology for Indiana University Health Hospital in Indianapolis, Indiana and a radiation oncologist at Indiana University Health Proton Therapy Center in Bloomington, Ind. Dr. McMullen is an associate professor of radiation oncology at the Indiana University School of Medicine, where he also holds the Indiana Lions Endowed Scholar in Cancer Survivorship. He also serves on two late effects task forces within the Children’s Oncology Group.

He completed his residency at Wake Forest University School of Medicine, with further residency and post-residency pediatric radiation oncology training at St Jude Children’s Research Hospital and Memorial Sloan-Kettering Cancer Center. Dr. McMullen served his country in the U.S. Army in progressively increasing levels of medical leadership including being a Brigade Flight Surgeon for the Aviation Brigade of the First Cavalry Division headquartered in Fort Hood, Texas.

“The addition of Dr. McMullen will further enhance the outstanding talents and wide-ranging experience that our Board of Directors brings to the Pediatric Proton Foundation,” said Susan Ralston, Executive Director. “Dr. McMullen is widely respected and deeply experienced in pediatric cancer treatment through his past experience at Wake Forest and in his current positions at the IU Health Proton Therapy and with Riley Hospital for Children at IU Health.

Dr. McMullen is determined to continue to contribute to pediatric proton therapy advancements stating, “Because of my research in survivorship issues and prevention of late effects of cancer therapy, I believe I can offer insight as we further develop the scientific basis for appropriate use of this technology for cancer stricken children – one of IU Health Proton Therapy Center’s main focus and that of the Pediatric Proton Foundation. I am proud to volunteer my time for such a worthy organization.”

Click Here for Full Press Release

Pediatric Proton Foundation Objects to 55% Reduction in OPPS Payment Rates for Level II Proton Beam Radiation Therapy

In keeping with its mission of providing advocacy for pediatric cancer patients seeking proton therapy, the foundation filed a written comment letter to the Department of Health and Human Services regarding serious concerns about the planned reduction in OPPS payment rates for Level II Proton Beam Radiation Therapy. PPF went on to explain that..." 75% of young patients treated with proton therapy had brain tumors. More than half of those children treated were under nine years old. To reduce the proton center's ability to recover their cost when treating children, the most vulnerable population who is least able to articulate their concerns, will mean that less valuable treatment slots are being used for our children."

Treating Brain Tumors in Children

FROM THE HEALTH GUIDE:

Of all the different kinds of solid tumors that a child might get, the brain tumor is the most common one. What causes brain tumors in children?

As with any other kind of tumor, a brain tumor comes about when a cell somehow gets out of control and multiplies uncontrollably. For the most part, science doesn’t yet have an answer to what causes brain tumors in children exactly. But scientists do suspect genetic reasons and environmental influences.

When a pediatrician suspects a brain tumor in a child, the first thing he does is to order an MRI or CT scan. A child needs be very still for any one of these scanning devices to work properly. Most of the time, with very young children, the doctor sedates the child so that she’ll stay still enough. Sometimes, if the results of the scan don’t seem conclusive enough enough, they’ll even try to do a biopsy – where they actually take out material from the brain.

It can take a whole team of specialists to successfully treat brain tumors in children. Most of the time, a child who is affected in this way will need surgery, chemotherapy and even radiation therapy. Treatment techniques have improved considerably now. Most of the time, the child will come out in one piece.

But it can be a very complicated process treating brain tumors in children. Typically, the team of doctors treating the child will include a neurosurgeon, a neurologist, a pediatric radiation therapist, a neuro-oncologist who specializes in children and so on.

Medical science is now clear about how brain tumors in children should be treated – it should be treated aggressively. And so, pediatric neurosurgeons are usually able to produce better outcomes – now that they know what exactly they need to do. The fact that there is all this high-tech equipment that they have at their disposal, helps too.

These days, they usually conduct pediatric brain tumor surgery in stages. They don’t go in and remove the tumor all at once. They do it a little bit at a time, over several operations. When they do it this way, they are able to make use of intervening periods to apply radiation therapy to the tumor so that it will shrink. The doctors hope that when they do this, they can be as non-invasive is possible. The third new techniques coming online all the time.

Instead of using radiation traditional radiation, the doctors use something called proton beam therapy.

In the future, all brain tumors in children will be treated this way. Proton beam radiation is a far more precise a way of going about it. There is no collateral damage to tissue that’s close to the tumor.

www.thehealthguide.org/tumors/treating-brain-tumors-in-children/

Pediatric Proton Foundation Founder Visits the IU Health Proton Therapy Center - IU Health Proton Therapy

Pediatric Proton Foundation Founder Visits the IU Health Proton Therapy Center - IU Health Proton Therapy

IU Health Proton Therapy Center Brings Protons to More Children

Bloomington, IN –The Indiana University Health Proton Therapy Center in Bloomington, Ind., becomes the first proton center in the country to simultaneously treat children under anesthesia in two treatment rooms. Previously, the IU Health Proton Therapy Center could treat one anesthesia case at a time. The increase in the Center's ability to treat additional anesthesia cases makes it possible to deliver this treatment to more children with cancers/tumors of the head, neck, and spine.

The efforts to increase the anesthesia cases would not be possible without the partnership with Riley Hospital for Children at IU Health. "It is unique when world-class organizations work together as we do with Riley Hospital," says Dr. Peter Johnstone, president and chief executive officer of the IU Health Proton Therapy Center and chair and William A. Mitchell professor of radiation oncology for the IU School of Medicine. "Together, we provide an extraordinary resource for the most vulnerable patients: children with cancer." When treating young children with the precision of protons, it is critical that they are immobilized for their treatments and anesthesia is necessary to achieve this level of accuracy. Locally, the anesthesia efforts are provided by Bloomington Anesthesiologists, who are specially trained to work with children. Johnstone adds, "Without their expertise in pediatric anesthesia while under treatment, this work would not be possible."

The IU Health Proton Therapy Center provides treatment for patients of all ages; however, children are at the heart of the practice and accounted for 30 percent of the patient population in 2011. Since opening its doors in February 2004, one in every 12 patients has been treated under anesthesia and that number is anticipated to grow in 2012.

Pediatric Proton Responds to New York Times Opinionator Article

There was an article published in the New York Times yesterday.  You can read it here:

http://opinionator.blogs.nytimes.com/2012/01/02/it-costs-more-but-is-it-worth-more/

The Pediatric Proton Foundation responded as follows:

As the mother of a child that survived paralyzing spinal cancer at the age of 2 in part due to proton therapy, I feel compelled to respond to this article. As you indicate in your article, there is mounting evidence that protons will become the standard of care for cancer treatment for pediatric patients, especially when it comes to brain and spinal tumors. The problem for most parents is accessing proton therapy for their cancer-stricken child. With only 9 centers in the U.S., it often involves a temporary move for the family during the proton treatment which is often cost prohibitive (we traveled over 1,500 miles.)  Sadly, only 465 children received proton therapy in the U.S. in 2010, and as you indicate over 3,500 could have benefited. To solve this problem, we need to have more access for our children through more proton centers. I congratulate Mayo for making this important investment on behalf of all pediatric cancer patients, and I thank you on behalf of my son, now age 6, NED and healthy.

Pediatric Proton Featured in Electronic Sarcoma Newsletter in August!

The Pediatric Proton Foundation is featured in this month's Electronic Sarcoma Update Newsletter (ESUN).  Since my son is a Ewing's Sarcoma survivor, the work of the Liddy Shriver Sarcoma Foundation has been of extreme interest to me since Day 1 of diagnosis.  Click here to read the article:  http://sarcomahelp.org/newsletter/community.html

ESUN is an online, open access, peer-reviewed, bi-monthly newsletter. In addition to feature articles that focus on specific sarcomas and current research and clinical issues dealing with these cancers, it has regular columns that abstract newly announced clinical trials and recent research findings). It also contains a column telling stories of courage and hope, a column that deals with a potpourri of topics of general interest, and updates on sarcoma advocacy and related groups. Our readership consists of physicians (oncologists and non-oncologists), nurses, patients, caregivers and survivors. ESUN contents are accessed over 30,000 times each month, giving wide visibility to the published articles. Additionally, a number of articles in ESUN have been translated by sarcoma physicians and researchers and appear in Chinese, French, Italian, Polish and Spanish to benefit the sarcoma communities within the respective countries.


Thank you Bruce Shriver for your dedicated and excellent work in the Sarcoma community.  Thank you for this opportunity to discuss the Pediatric Proton Foundation!

Breaking News...State of Pediatric Proton Therapy 2010 Soon to be Released!

BREAKING NEWS - August 8th


The survey of the State of Pediatric Proton Therapy 2010 is about to be completed. We had 100% participation!

The survey is currently undergoing peer review and will be presented by Dr. Daniel Indelicato of the University of Florida Proton Therapy Institute (volunteer for the Pediatric Proton Foundation) during the Fall Meeting of the Children's Oncology Group (COG) in Atlanta September 13 - 16, 2011.

The National Association for Proton Therapy (NAPT) and the Pediatric Proton Foundation will issue a joint press release immediately after Dr. Indelicato presents the survey results at COG. Highlights from the survey will include the total number of pediatric cases, the various types of diseases treated, and the age groups treated.

Thank you for your continued support for this initial and important proton community effort.  We look forward to your feedback.

Meet Executive Director, Susan Ralston, Pediatric Proton Foundation

Pediatric Proton Foundation Supports St. Jude Children's Proton Initiative

The Pediatric Proton Foundation was proud to be recently asked to provide a letter of support for St. Jude Children's Cancer Hospital as it makes a bid to build its own proton center. As many followers will know, St. Jude's announced an alliance with Univeristy of Florida Proton Center in the fall of 2009 to begin sending children suffering from brain tumors for proton treatment to Florida.


Before beginning construction, St. Jude Children's is required to obtain a certificate of need from the Tennessee Health Services and Development Agency.  This is where the Pediatric Proton Foundation came in to help by providing a letter of support. The hearing for this project is scheduled to occur in late August. If the project is approved, construction is expected to begin in spring 2012 and will hopefully begin treating pediatric patients by 2016.

In the Pediatric Proton's letter, emphasis was of course placed on children receiving protons.

"In a recent study conducted by the Pediatric Proton Foundation and the National Association for Proton Therapy, it was determined in 2010, less than 500 children received proton therapy treatment in the U.S. It is estimated that annually over 3,000 newly diagnosed pediatric cancer patients could potentially benefit from protons. St. Jude’s new proton center can help fill the need. By St. Jude’s adopting proton therapy it will help protons to become more widely known and accepted in pediatric cancer treatment."

We wish St. Jude's the best.

Pediatric Proton Foundation Active in Advocacy

The Pediatric Proton Foundation has been busy on Capital Hill. On May 9th, Executive Director, Susan Ralston, participated in a "Proton Therapy Briefing" with key legislators from both the Senate and Congress in Washington, D.C. Susan's role was telling her son's story and detailing the obstables parents face trying to have proton therapy covered through their insurance. Some of the highlights include:

*Denial is common for advanced treament usually due to "experimental/investigative/unproven treatment" The Pediatric Proton Foundation does not support traditional clinical trials in the case for protons as it relates to appropriate pediatric cases. Most pediatric radiation oncology experts agree that protons have a far superior treatment plan for children since protons have no exit dose, and less radiation is needed to get to the targeted tumor. No one needs extra radiation, but certainly not growing and still developing children!

* Appeals can take up to 180 business days, yet most pediatric protocols call for radiation in the early phase of the overall treatment plan.

*Insurers threaten,"if you decide to receive this service, you can be financially responsible for the total cost." A parent's inability to pay for medical treatment for their child is a top reason cited for financial bankruptcy in American cancer families.
_______________________

The Pediatric Proton Foundation is currently working on a first on a kind effort with the National Association for Proton Therapy to collect data from the Proton centers to help transparently report on the "The State of Pediatric Proton in 2010." We are excited to provide this collaberative effort and know this data will go far in helping more kids get to protons in the future. We almost have 100% participation from all the centers once again proving that when it comes to the kids, we all have heart. Thank you proton centers!

There is a HUGE Unmet Need for Pediatric Proton Treatment

I was more than shocked to learn only 384 pediatric patients received proton treatment in 2009. WOW! Not a happy wow, but a sad wow. The number should be more like 3,000!!! Okay, Pediatric Proton Foundation you have your work cut out for you!

Consider the following comments from our board member Dr. Sameer Keole, Radiation Oncologist with ProCure's Oklahoma Proton Center.

"Our estimates are that ~3,000 children a year in the US would benefit from proton therapy. Best estimates are that, in 2009, 380 children received proton therapy in the United States. (Many of these patients are from abroad) With the addition of both our center and PENN now adding pediatric capacity, hopefully this number will climb to 500 in 2010. Still, more than 80% of children who would benefit from protons will not be able to receive this therapy."

There are many reasons that the number of pediatric patients numbers are limited. My main focus today is the number of centers. We need more. Each center has only so much capacity to treat children, and in previous blog I had estimated the number of kids treated based Boston's percentage of total pediatric patients treated at 1,000. I was wrong because I assumed everyone treated a similar percentage of peds. Boston actually treats the most percentage of peds and perhaps I should have used an average. Now I know the actual numbers by center, and some centers obviously have no focus on treating pediatrics. I know the kids don't turn the profit a prostate cancer patient does, but where is the morality of healthcare these days? Why aren't our children a priority for all centers? Why do all centers have a child squarely pictured on their brochures and their web if they have no focus on pediatrics? There is much to answer here for future blogs and I digress.

It was GREAT news then that plans for two new centers were announced over the past month. One in Knoxville, TN and the other in San Diego, CA.

1. A planned Knoxville cancer treatment center is set to become the first place in the state to offer proton therapy. The state's Health Services and Development Agency approved an application last week from Knoxville-based ProVision Trust to build a $118.8 million center and fill it with proton therapy cancer treatment equipment. ProVision has lined up support from the University of Tennessee Medical Center.

2. Scripps Health announced Tuesday that it will manage a $185 million proton center to be built in northern San Diego by Advanced Particle Therapy, a private health care company based in Minden, Nev. Construction is expected to start in July on a 7-acre site in San Diego's Carroll Canyon business district near Mira Mesa. The 102,000-square-foot facility is to include five treatment rooms, three with special gantries that allow a proton beam to be delivered to a patient at almost any angle. Officials said the project is expected to be finished in 2013.

My hope is that the new centers and the current centers will focus on the positive impact they can have on the pediatric cancer cases. We want all the centers to make it their priority to treat pediatrics, and report their numbers, not just show the kid's pictures on their web and brochures. Our kids our counting on us. Our kids need the voice of the Pediatric Proton Foundation to make their case to those that can change these statistics. Please visit and support us at http://www.pediatricprotonfoundation.org/.

Dr. Torunn Yock Presents Promising Use of Protons for Pediatric Medulloblastoma

Radiation therapy is integral in treatment of pediatric brain tumors. However, conventional photon radiation is associated with long-term neurocognitive effects, including decrements in IQ and difficulties with attention, processing speed, and other executive skills. Proton radiation provides better targeting of tumors than conventional photon radiation, sparing surrounding healthy tissue. It is expected that radiation-related neurocognitive impairments would be lower after proton radiation relative to reports of photon radiation.

The study presented at ASCO examined long-term neurocognitive outcomes of 56 patients with brain tumors treated with proton radiation at MGH. “Late effects of radiotherapy can be disabling and affect health, as well as hearing, neurocognitive functioning and psychosocial functioning,” said Torunn I. Yock, MD, director of pediatric radiation oncology at MassGeneral Hospital for Children. “Proton radiation radiates less normal tissue, which should result in fewer late side effects of treatment.”

Conclusions: At 2-year follow-up after proton radiation, neurocognitive performances were stable, with no significant change seen in most areas assessed. Overall, results compare favorably to reports from photon radiation treatment.

In addition, about 30% of patients had hormone deficits, but that compares with 50% to 70% of patients treated with photons.

Finally, although there was a statistically significant hearing loss found at 1 year at frequencies of 3,000 Hz and higher, these rates are still improved compared with the use of intensity–modulated radiation therapy and photon therapy reported in the literature, according to Yock.

For more information:

Yock TI. #CRA9507. Presented at: the 2010 ASCO Annual Meeting; June 4-8; Chicago.

DON’T DELAY CALLING A PROTON CENTER: PEDIATRIC PROTON SPOTS ARE LIMITED!

If you are considering proton therapy for your child, it is important that you seek admission to one of the proton centers as soon as you determine radiation is part of the protocol or treatment plan for your child’s particular cancer. Each center only has so many patient slots available for pediatric patients so the sooner you start the process, the better chance your needs will line up with an available opening in a nearby center.

Many parents are WAITING for their primary oncologist to make the referral. Please don’t wait for this measure. Doctors are busy and are juggling many cases. YOU must become your child’s advocate and make the call yourself. In a recent study over 85% of pediatric proton cancer patients were self-referred. Any parent can make a self referral to each of the proton centers. Our website here includes a variety of information to help you navigate the process. You will be required to obtain your child’s medical records for review by one of the proton centers for admission. Plan to obtain a complete copy of all medical records as soon as possible and continue to keep them updated throughout and after treatment. Please feel free to contact us at information@pediatricprotonfoundation.org if we can assist you in gaining acceptance to a center.

PATIENT ACCESS:

James Slater M.D Proton Treatment, Loma Linda, California 1-800-PROTONS

Francis H. Burr Proton Center, Boston, Massachusetts 1-617-726-0923

University of Florida Proton Treatment Institute, Jacksonville, Florida 1-877-686-6009

Midwest Proton Radiation Center, Bloomington, Indiana 1-866-ITS-MPRI
(1-866-487-6774)

M.D. Anderson Cancer Center's Proton Center, Houston, Texas 1-866-632-4PTC
(782)

ProCure Proton Therapy Center, Oklahoma City, Oklahoma 1-888-847-2640


Roberts Proton Therapy Center at the University of Pennsylvania Health System
Philadelphia, Pennsylvania 1-800-789-PENN
(7366)

New Year - New Proton Centers

It was announced this week that Oklahoma City Proton has begun to treat pediatric cancer patients! This is great and offers families in the midwest an attractive alternative. This center has some unique features with pediatric couches that are used. In speaking with a pediatric radiation oncologist this week there, I was informed the paraspinal pediatric patients have now been successfully treated in the prone position where the body is treated lying face down. It is opposed to the supine position which is face up. The good news is that the prone position provides better airways for the anethesia doctors during sedation with younger children.

Numbers are staring to get updated from the various proton centers around the world.
See:

http://ptcog.web.psi.ch/ptcentres.html

As of right now in the U.S. we have the following reported:

Loma Linda founded 1990 treated 13,500 as of 12/08
Florida PTI founded 2006 treated 1,847 as of 12/09
MRPI founded 2004 treated 632 as of 12/08
MGH Boston founded 2001 treated 3,515 as of 10/08
MDA Houston founded 2006 treated 1,700 as of 12/09

I keep hoping these centers will report pediatric cases treated. Right now it seems to be everyone's best kept secret.

There will be lots happening in the proton world this year, we have Hampton coming up by August 2010. Philadelphia is getting itself off the ground. ProCure has several irons in the fire with new proton centers. It looks like Chicago will be there next center opening at the first of next year. Stay tuned!

Retrospect on the Pediatric Proton Foundation's First Year!

Dear Readers,

I would like to wish everyone that follows this blog a very Merry Christmas! We have been blessed this year with Jacob's continuing good scans and stability regarding his back issues. We have also been successful in gaining our public charity status and followed with a news release debut viewed by over 75,000 people.

Indeed, the Pediatric Proton Foundation has made great strides this year. We were at two national conferences. We have made many important connections in the pediatric oncology world. We have also posted opinions when proton articles have run and been featured on t.v. and radio. Our most recent airing on www.whatmatters.tv. Check us out!

Our board of directors represent some of the best talent in the pediatric radiation oncology world and will be key players in grant decision making. Thank you so much to Dr. Keole, Dr. Keppel, Dr. Porsche, Dr. Indelicato and Dr. Chang! You are truly the best!

Not bad for a first year of operation, but we still need your help! We are seeking skilled volunteers and always financial supporters that believe in what we are trying to do to help other parents and their kids. We have been there done that and support is critical to our success.

Our 2010 goal is to continue to raise money to offer financial grants to pediatric cancer patients to receive proton therapy. If you feel it in your heart and have a charitable giving plan, won't you please consider the Pediatric Proton Foundation? You can donate online at www.pediatricprotonfoundation.org.

Again, Happy Holidays!

Susan Ralston
Executive Director/Founder
Pediatric Proton Foundation