PPF

Showing posts with label pediatric cancer. Show all posts
Showing posts with label pediatric cancer. Show all posts

Sunday, July 6, 2014

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.

 

Monday, May 19, 2014

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!

 

Thursday, August 2, 2012

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/

Friday, September 30, 2011

Pediatric Proton Foundation to Hold Annual Meeting at ASTRO

The Annual Meeting of the Pediatric Proton Foundation will be held at ASTRO in South Miami Beach the first week of October.  Wow!  As we look back on the year, we have so many accomplishments to be proud of given our limited size.  For the first time we published a survey in conjunction with the National Association for Proton Therapy entitled, "Pediatric Proton Therapy in the United States: Patterns of Care 2010."  We were impressed with the findings which revealed 45 diseases were treated in 2010.  Children under 8 being the majority of those pediatrics treated.  We will be reporting these and other findings during our meetings and fellowship during ASTRO.  Stay tuned!

 Thank you for your continued interest in pediatric proton. 

Tuesday, July 5, 2011

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.

Wednesday, May 18, 2011

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!

Sunday, October 24, 2010

Editorial: Hope in Hampton - dailypress.com


Thank you Hampton University for the opportunity to tell our story and advocate for pediatric proton therapy. Wow, it seems we made a difference! Thanks to Carol too for writing this editorial.

Thursday, June 24, 2010

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/.

Saturday, January 30, 2010

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!

Tuesday, October 27, 2009

PPF to hit the Windy City - Chicago Here We Come

The Pediatric Proton Foundation and 5 volunteers from age 4 to 80 will be attending the annual meeting of ASTRO (American Society of Theraputic Radiation Oncologist) in Chicago starting this Saturday, October 31st through the following Wednesday, November 4th. We are excited to have a chance to interact with the professional radiation oncology community and other vendors and professionals that work with proton therapy.

Our 4-year old son, Jacob, will also be in attendance during exhibit hall hours. He sings, he dances and he is a TWO YEAR Cancer Survivor in part due to the proton therapy he received as part of his protocol to beat Ewing's Sarcoma. Since Jacob's tumor was found on his thoratic spine, it was critical that we found a treatment that wouldn't harm his other growing organs and bones. We can't wait for others to meet him and see how grateful we are for having our son here and enjoying his life to the fullest.

We will also have our first annual meeting of the PPF while in Chicago. It will be the first time our board members will meet face to face so we are excited for the event.

Check out our newly revised website. We have enhanced it to include bigger buttons and easier navigation. Our website is www.pediatricprotonfoundation.org.

Monday, August 31, 2009

Protons and Children: September is Childhood Cancer Awareness Month

I was talking to a friend of mine and we were discussing how many children have actually received proton treatment as part of their protocol in the United States. I suggested to her that there were around 1,000 pediatric patients treated here. She said last year? I said no, I mean since it started in 1990!!! You have many, many of the experts saying it is undisputable that protons should be used versus photons with children because of secondary tumors, and because of the deficit effects of radiation on healthy tissues in children. Yet how can it be there have only been 1,000 kids treated in the last twenty years??? This is why I started the Pediatric Proton Foundation.

Here is how I come to my estimate:

It seems it is agreed Boston, by far, treats the most pediatric patients. They published they had treated 320 pediatric cancer patients from a total of 3,515 or 9.1% of patients. Let's assume then the other centers treat approximately half that or 4.5%.

Boston = 320 peds self reported
LL 13,500 = 607 peds
Florida 998 = 44 peds
Indiana 632 = 28 peds
MDA 1000= 45 peds

That equals a grand total of 1044 peds. This has to change. I am going to try to help make it change with your help.

September is childhood cancer awareness month. The following video is a tribute to our young warriors.

September is Childhood Cancer Awareness Month - Time to Demand Protons!

September is childhood cancer awareness month and I found this video that captures the emotion of being a Mom with a cancer child.

www.youtube.com/watch?v=TEg1a8plJq4

Sunday, June 28, 2009

Pro Proton!




When I was writing the press release announcing the pediatric proton foundation, one thing I tried to explain was the finding out about proton treatment gave us hope at a time that we desperately needed it. I don’t know how to describe finding out my son had cancer. At first, I was in denial though I knew the doctors didn’t have time to wait for me to get to acceptance. Everything from the moment we heard tumor went like lightening. You see my son was paralyzed. There was cancer and there was a tumor pressing on his spinal cord. We agreed to do emergency surgery. In this time and shortly after my son’s initial diagnosis, my father-in-law suggested we look at proton. He called Boston and Jacksonville and both places supported Jacob being considered as a patient. I believe my father-in-law being a chemical engineer understood the terrible toxicity of chemo drugs and the harm it would do to my son’s young body. We heard from the doctor’s themselves that there are no new chemo drugs and the ones that would be used on Jacob were 30 to 40 years old. They cause temporary and permanent damage to the healthy tissues along with the cancer tissue. The only changes that have been made to protocols are how much gets used in what combination and how often. That’s it.

I remember being angry that this was all the choice we had. I began searching online every waking hour in regards to ewing’s sarcoma, the drugs Jacob would be on, the protocol, the clinical trials. Many hours and hours. Slowly, I began to include proton treatment in my research once I understood radiation is part of the cure. My sister-in-law, a nurse, also supplied us with information on proton. Suddenly, I thought my son CAN beat this thing. Doom and gloom turned to hope. He had to be given the best chance of killing the cancer and still leading a normal life. We knew the chemo was bad, but did the radiation phase have to be archaic too? Did we have to watch our son’s back be zapped by 40 year old radiation machines and destroy his little infrastructure? NO, we didn’t.

We fought hard and worked day and night and got our son accepted to MD Anderson’s proton therapy center. This is why we are here today as the Pediatric Proton Foundation. We believe every child deserves to have proton as their radiation therapy when fighting cancer. These children fighting cancer already have the cards stacked against them in so many ways. I understand why proton is often called the “beam of hope”. When life seems bleak and your child faces a possible death sentence, proton is just the bright spot of hope you need, for survival of cancer and survival of the late effects of the treatment itself.
We are “Pro Proton!”

Monday, June 22, 2009

Proton for Pediatric Cancer Tumors - Pass it on!

It’s remarkable that so few people know about protons. I frequently bring up this subject when I am talking about my son’s recovery from ewing’s sarcoma cancer and most people say, “what is proton?” I start with an easy, “a targeted form of radiation, more bullet-like and precise than traditional radiation.” I go on to explain my son was only 2 when he was diagnosed and had a lot of growing parts that we didn’t particularly want touched with radiation like his heart and his lungs. Most people get that. Targeted sounds good, but why radiation at all?

Most people don’t understand that over half of people diagnosed with cancer will be prescribed radiation as part of their protocol to get better and that includes children. Chemotherapy is not a targeted or precise method in destroying cancer, in that you have to destroy many good cells when going after the bad cancer cells. This is the reason fast growing healthy cells such as hair, and mouth cells die along with the bad. Same holds true with radiation, in that a beam is directed at the cancer tumor site and the radiation hopefully destroys the cancerous cells and the cells surrounding the tumor bed. We want to destroy the bad cells without destroying the good and healthy ones beyond the cancerous tumor bed. Proton accomplished this because of the Bragg peak. The Bragg peak describes how the energy enters the body and deposits the radiation in the tumor target but not much beyond. It really is that simple. Proton works better because of the Bragg peak.

Proton gets given to pediatric cases because family and friends educate themselves and pass it onto loved ones, friends, and those fighting the beast that is taking our children with it. PROTON FOR PEDIATRIC CANCER - PASS IT ON!

Sunday, May 17, 2009

Pediatric Proton Foundation Officially Launches!

Yes, we are a few months later than we planned, but we are here. I am posting a copy of our first press release here.

VIRGINIA BEACH, VA. In 2007, Susan and Jim Ralston received the news every parent dreads: their 2-year-old son was diagnosed with spinal Ewing's sarcoma, a rare and aggressive cancer. This heart-breaking report was followed by a discovery from relatives that offered some comfort and hope: a relatively new radiation treatment, proton beam therapy. The Ralstons began a quest for more information and learned proton therapy could help their son improve his odds of beating cancer.

As a result of this first-hand experience and months of research, the Ralstons are launching the Pediatric Proton Foundation. Their mission in founding the Pediatric Proton Foundation is a simple one: to provide education, advocacy, and assistance to families in need of pediatric proton. Said founder Susan Ralston, “I am proud that we will be able to help other families and their children with cancer gain access to proton treatment across the country.” The first phase of the Foundation’s rollout plan includes a parent-friendly website loaded with everything a parent needs to help determine if proton is an appropriate treatment for their child and then how to quickly get to it. The next phase involves working to raise money to help researchers with pediatric proton studies and also to help families with the huge financial burden that comes with traveling to get proton beam treatment.

There are currently 5 proton centers operating in the United States with 5 others in some stage of development. Hampton University, near Virginia Beach, Virginia is developing a proton center expected to open in August 2010. “Proton beam treatment delivers targeted radiation to the cancerous site and avoids surrounding healthy tissue. This is critically important when treating children with cancer, since they are growing and many tissues are still developing” said Ralston. There are an estimated 13,000 children diagnosed annually in the United States with cancer and half of those cases are some type of bone, soft tissue or organ cancer, which means many of these cases could potentially be treated with proton therapy. “Dealing with cancer is one nightmare, and then dealing with the after effects of the actual cancer treatment is yet another nightmare. Anything we can do to improve cancer survival rates and reduce the after effects from the treatment needs to be pursued. These are America’s children – they deserve the best we have to offer here,” continued Ralston.

In mid-April, the Foundation was a first-time exhibitor at the “Pediatric Neuro-oncology in the Proton Era” meeting that was sponsored by Massachusetts General Hospital - the site with the world's greatest cumulative experience with pediatric proton neuro-oncology. The Foundation will be an exhibitor at the 51st Annual ASTRO (American Society for Radiation Oncology) meeting at McCormick Place West in Chicago November 1-5, 2009 with over 12,000 attendees expected from all over the world. “We hope that through our active involvement in the pediatric oncology world, we can bring more attention to this treatment option for children and therefore, more supporters to our cause of helping appropriate pediatric cancer cases access proton therapy,” said Ralston.

About the Foundation:

The Pediatric Proton Foundation is uniquely positioned as an independent, nonprofit charity that relies on voluntary funding from a variety of sources to be able to provide the most objective information available about pediatric cancer treatment at each proton center in the U.S. The dollars given are used to help support our mission of providing education, advocacy and assistance to families in need of pediatric proton. We are a non-profit 501(c)(3) charitable organization. You may be able to deduct some or the entire amount of your donation for tax purposes. Please consult your professional tax advisor.

For more information, visit the Pediatric Proton Foundation’s website at: www.pediatricprotonfoundation.org.