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/.

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!

Procure's Oklahoma City Proton Center Open for Business

I attended the grand opening of the Oklahoma City Proton Center on July 8th! Dr. John Cameron had a vision of treating patients needing proton in centers outside of academia settings, and his dream came true this day. Procure's first center is most impressive. There are 2 more in some stage of development with Procure including Chicago and Boca Raton.

I noted subtle upgrades throughout the tour starting with a concierge that is postioned in the center to help patients and their families make all their arrangements from lodging to fun. I have visited 3 other centers so I have some frame of reference. It's great seeing everything brand spanking new. Incorporated throughout the center are the latest in positioning robotics, and a slew of very keen upgrades such as an enclosed floor in the rotating gantry room. They also plan to install a pediatric couch in the gantry so children can be positioned more comfortably for their treatment. I also spoke to a physicists that is developing a new application for anesthesia for children that will speed the treatment process up considerably making them the same if not faster than an adult patient to be treated.

What I believe will make OKC work is the new Integris comprehensive center being built a stone through away from the proton center. Patients will be able to walk to the cancer center for routine blood counts, tests, and any other treatment (ex. chemotherapy) that goes along with proton treatment. This in itself may make it more "convenient" that some other center's setups which usually include a ride to get to the nearest cancer center. The fact it will be designated a "comprehensive" cancer care center by the NIH, will make it one of the 25 or so designated centers in the country.

Cheers to Procure, IBA and Integris for what appeared to me to be a job well done!

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!”

New Centers in 2009

Soon we will have 7 proton centers operating in the U.S.! The more the merrier if you ask me.

Procure's Oklahoma City Proton Center will open July 8, 2009 and is already accepting inquiries and beginning to schedule patients for consultations. This center can be reached by calling 888-847-2640. Some pediatric patients may be able to be treated there depending on if they need anesthesia. You can check out this new center by going to http://www.procure.com/. They have a nice newly designed website with tons of information available.

The other new center will be opening in November 2009 in Philadelphia - the Roberts Proton Therapy Center. This center can be reached by calling 1-800-789-PENN(7366). You can visit this center on the web at http://www.pennhealth.com/. They are planning to have a gantry room dedicated to pediatrics so this makes me very happy.

I was reading some of the very latest information available on protons versus photons, and it is indisputable regarding the superiority of protons in use for children. Children are still developing and having radiation hit healthy tissue can cause devastating effects. Especially when a child has a brain tumor. The brain is very sensitive to radiation. Doses as low as 18 gy can cause developmental delays, hearing problems, loss of iq (this happens every year after radiation for many years to come) and many other terrible problems. I heard a very reknowned radiation oncologist for St. Judes discuss this subject and it made me get goose bumps hearing the devasting effects of radiation to the brain. He touted the scientific evidence as showing protons vastly superior over photons or IMRT especially with brain tumors. I asked him why doesn't St. Judes have proton then? He said I would have to ask the powers that be. I plan too. Many parents flock to St. Judes because they are the only pediatric hospital dedicated to solely to pediatric cancer. Of course, I understand children can be referred to the other centers, but still.

I may be like a caped crusader here. Just an empowered Mom that feels her son's life was saved with protons. I am making it my job to make these facts known. I hope someday to get the attention of the media. My goal is to make sure in my lifetime that all of our cancer kids that need radiation treatment can get to the protons. Having more centers will ensure more slots are available for the children that truly have the most to gain from proton treatment. Join me in this effort - will you? Check out our website: www.pediatricprotonfoundation.org.