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 ProtonPals Newsletter
Am I Cured? |
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Don't Forget
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The locations rotate among various restaurants in the Houston Medical Center area. Tell your ProtonPal friends about Joe's House to find housing in the Medical Center area. This link is also on the Pals website and on the MD Anderson website.
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 | | Susan S. from Cypress, Texas wins a Survivorship Conference door prize donated by the ProtonPals. |
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Thursday, October 31, 2013 Houston Texas
Today's banner photo shows Susan S. accepting your donation at the 25th annual Anderson Network Survivorship Conference. Susan's a six year survivor as the blue ribbon around her neck indicates. It takes a lot to make something like this happen including the time it took to get the a license agreement from MD Anderson to use their brand on such a product. That is as it should be since MD Anderson is such a large and important organization to the world and to all of us. What was so gratifying was that Susan seemed really thrilled to get the prize and so did her husband. Susan's graciousness and the kindness of the MD Anderson Director of Photographer, your donations made this canvass print possible. Thanks to all.
When we meet parents and their children who are being treated at the Proton Center we are all moved by the gravity of the challenge and the courage of the mothers. An image burned in my mind years ago is that of a young mother taking her two year old child from the gantry and laying her on the gurney while still under sedation. Similar emotions must tug at your heart and led many of you to come forward to do what you can to make the children smile. For some of those reasons we helped establish the special ProtonPals Children's Activity and Toy Fund. .
Drew Cox helped host the Mad Scientist Day at the Center and had a large part in obtaining the laboratory coats and lab equipment from a vendor.
 | | Chuck, Drew, Kaci, Elizabeth, David and John. |
The others in the photo are part of the awesome staff at the Proton Center who care for the many pediatric patients who come to one of the biggest treatment centers for pediatric tumors.
The_affection these small patients feel for their radiation  | | Naina 5, with radiation therapist Diana Ortega. |
therapist just shows through in these photographs and others on Facebook. More PICs
You can't keep from smiling when you walk into the Gantry 1 and 2 and see this crew, can you? Don't forget though - that behind
 those bright costumes with the pretty/handsome faces are years of training including some in medical school and clinical practice.
I almost forgot that this is a newsletter for prostate cancer patients and it's going to get a little hairy around here. Movember is now. Get clean shaven today, November 1 if you're hirsute, or start growing your mustache by joining the ProtonPals Movember team. As Dave Stevens writes in an article below the number one topic of conversation the month is the Affordable Heath Care Act (ACA, or Obamacare) and he highlights how this is going to be a challenge for you but also for MD Anderson.
The ProtonPals Hill Country troubadour, Marc Anderson traveled from Kerrville (the Hill Country) to the City for his 2 year follow up. Marc and Red organized a reunion dinner at Houston's Canopy with Drew's help and it was outstanding. He followed this up with an interactive Beam News meeting on Thursday while the ark was being re floated and all pumps were in play at the Proton Center. In Gratitude,
Joe Landry ProtonPals, Ltd. 832 335 0353 |
| It's Going to Get Hairy Around Here! | |
Every Moustache Makes a Difference
Here's What to Do
- REGISTER at www.movember.com. check and join the ProtonPals Team.
- CREATE a new look by growing your moustache starting November 1 clean shaven.
- MOTIVATE your Pals and friends to donate and support your growing efforts..
- CELEBRATE your journey at the moustache themed end of Movember.
Movember is an official global charity with a mission to have
an impact on men's health by raising awareness and funds for prostate and testicular cancer. The funds raised are split with the Prostate Cancer Foundation and Livestrong Foundation, Now operating in 21 countries
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| Moon Shots - Stories of Hope | Jon Thompson - Most Interesting Man in the World
Some of the most interesting men and women are treated at
 | | "I'm Flying" Pose by Jon and Ellen, one of the Proton Gals.at the Center Meeting in April 2012 |
the MD Anderson Proton Center. If I'm lucky I get to meet a few of them and hear their stories. I can definitely say, as Bob Marckini and Debbie Hickey write in their great newsletter, "We have postulated this theory many times: Highly intelligent, highly motivated, successful people seem to gravitate to proton therapy." Bob Marckini in BobTales October 2013
In mid April 2012, Jon Thompson was completing his treatment at the MD Anderson Proton Center when I met him. He had given a series of talks at the University of Houston, University of Texas and this one at the Proton Center. While at the Center and as he was wrapping up his talk about the search for Amelia Earhart's plane, he got a few of us to try on the replicas of the life jackets used on the Titanic. Jon had been closely involved with that project was able to bring several artifacts from the movie set for us to see and model.
More recently he was chosen as one of the "Stories of Hope" in the MD Anderson Cancer Center Moon Shots Annual Report.
Reproduced from MD Anderson Moon Shots 2013 Annual Report Visit MD Anderson Moon Shots Stories of Hope
Jon Thompson lives a remarkable life. He's a West Point graduate, an aerospace engineer, a former pilot in Vietnam and successful business owner. He's visited more than 42 countries on official U.S. government trips, including being in Tiananmen Square the day the shooting started on June 4, 1989. He met with curators in the Louvre for a major
 | | Jon Thompson |
Napoleon exhibition, has seen the wreckage of the Titanic on the ocean floor and searched for Amelia Earhart's lost plane.
You could say he's in the running for the "most interesting man in the world" title. For Jon, it wasn't a lost bag or plane ticket that interrupted his life's journey. It was prostate cancer.
When his PSA score jumped double digits, he was referred for a number of biopsies that came back positive for prostate cancer. A natural researcher and explorer, Jon quickly began searching for available treatment options. After speaking with a family friend who had been successfully treated at MD Anderson, he decided to undergo treatment at MD Anderson.
Jon received proton therapy treatment five times a week for two months, completing his treatment in April 2012 on the 100th anniversary of the sinking of the Titanic.
"I liken my cancer experience to the Titanic," Jon says. "I hit the iceberg, and the doctors and staff at MD Anderson were my lifeboat."
Resuming a life of adventure
In 2000, Jon joined a team of highly respected nautical and marine explorers, who now believe they have narrowed the location of Amelia Earhart's lost plane down to a 400-square-mile area in the South Pacific. After decades of independent research and two 60-day expeditions, the team concluded Earhart ran out of fuel and crashed close to her intended destination off Howland Island. Early in 2014, they plan to prove their efforts have succeeded, with Jon embarking on the development of a new exhibition called "Amelia Earhart - Mystery Solved."
He says his latest journey is about more than solving one of the greatest mysteries of the last century. It's also about not letting cancer take control.
"I'm 74 years old, but I feel like I'm 45 or 50," Jon says. "I wasn't going to let prostate cancer hold me back because I have so much to do."
Read more of Jon's background in Houston Culture map.
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| MD Anderson Moon Shots Annual Report | | What are the Moon Shots?
MD Anderson's Moon Shots Program is an unprecedented and
 highly concentrated assault against cancer. Launched in the fall 2012, the initial moon shots target eight cancers: acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS), chronic lymphocytic leukemia (CLL), lung cancer, melanoma, prostate cancer and triple-negative breast cancer and high-grade serous ovarian cancer - linked at the molecular level. These projects were selected based on knowledge, technology and proof of clinical concept that would significantly reduce cancer deaths rapidly. The ultimate goal is for all cancers to become moon shots targets.
In Summary
- Focus on patient impact and reduction in mortality world-wide
- Comprehensive, spanning the cancer care continuum
- Collaborative, internal and external
- Innovative, in organizational constructs and technology
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| MD Anderson Selects IBM's Watson in Battle Against Cancer | | Not Just a Jeopardy! Winner
I had a new friend tell me about how the Houston Chronicle had surprised her by featuring a positive article about MD Anderson. It was about how MD Anderson was using the latest in computing technology to handle massive amounts of genomic data currently being measured for every tumor, along with the clinical, tissue records from a source stretching back 70 plus years -
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| Patient Power Web Site Has a New Look | |
And a Lot More on Prostate Cancer
Andrew Schorr, a medical journalist by profession, an MD Anderson patient, clinical trial participant, long-time contributor to MD Anderson's communications is b roadening his web site PatientPower to include more on other tumor sites including prostate cancer. The beta version of his new site is featuring videos on Active Surveillance, Effect of Advocacy Groups on Research, and a Patient Message Urging Men to get a PSA Test.
We've written about Andrew Schorr before and I've referred newly diagnosed patients to his book, "The Web Savvy Patient" which will guide you on an approach after your diagnosis by navigating the internet and finding the best treatment.
He tells his personal story of how he was diagnosed with chronic lymphocytic leukemia in 1996 and with the relatively embryonic internet at that time and supporter groups found in mailing list forums. He heard about an all important MD Anderson clinical trial and a world renowned specialist,
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Michael J. Keating, MD
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Michael Keating, MD. As Andrew Schorr tells it, Dr. Keating turned out to be a genial man with a broad smile and ready bear hugs. As a result Andrew is a survivor.
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| Pediatric Patients Enjoy Halloween | |
You Bring Smiles to their Faces
The MD Anderson Proton Therapy Center staff work hard to support the children who are away from home and are in the center everyday for a treatment session.
The kindness and the compassion shared by these awesome specialists just glow out of the photos especially on Mad Scientist Day. In spite of the challenges faced by the children they can and do smile.
 | | Nice Witch and Proton Center Director Stephanie Shelton is ready help the children make monster toothpaste. |
For example a family from Denmark wrote in Facebook about how they enjoyed the first annual Mad Scientist Day in 2012.
Bo Hansen We can recommend this event. We were participating last year and had a fantastic day. One can only be be impressed with these dedicated employees who help our children through this disease. Receive our thanks and greetings from the other side of the earth (Denmark). For your information, our son Benjamin's great, no cancer has been found since the treatment.
Huge hug from "the happy Hansen".
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ProtonBob Marckini 's Three Bullets
|  Proton Therapy is Under AttackIn the October 2013 BOB Tales, Bob Marckini wrote about very concerning developments which can only be due to the effects of the Affordable Care Act (ACA). " Proton Therapy is under attach from those who practice competing modalities and some insurers who are looking for any excuse to pay for the lower cost option. But those of us who have experienced the benefits of the magical proton particle are fighting back." - BobTales October 2013 In September Bob Marckini asked members of the Brotherhood of the Balloons to let the folks at the Washington State Health Care Authority know how they felt about the direction they were taking with regard to reimbursing for proton therapy. He asked members to send e-mails in support of proton. In this month's BOB Tales, you can read about how the members responded, and I think you'll be as pleased as he was. In November Bob's going to give us another opportunity to let our voices be heard. He is about to launch the third BOB member survey. This is the most important survey ever, as his group has grown by more than 2,000 members since our last survey and today they represent about two-thirds of the men alive who have had proton therapy for their prostate cancer. The BOB group include many ProtonPals members and together we have a voice that must be heard. A few days after receiving the BOB Tales, I asked Bob if he wanted the ProtonPals to participate in the survey and he agreed. So in November when the survey is distributed to the BOB members, the ProtonPals organization will be mailing a note from Bob Marckini along with the survey to you. I'm also going to ask patients I see in the Center who are there for follow up sessions with their doctor if they would help us. I'd like to have a great turnout and hold our own on this. Here are a couple of more bullets or take aways from BOB Tales this month. "We have postulated this theory many times: Highly intelligent, highly motivated, successful people seem to gravitate to proton therapy." BobTales October 2013 From a prominent UK surgeon, "Proton beam will be the universal treatment of choice for prostate cancer in ten-year's time." BobTales October 2013 |
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| How MD Anderson is preparing for Health Rules | |
A Lot of Uncertainty
 | | Thomas W. Feeley, MD, distinguished professor and head of MD Anderson's Institute for Cancer Care Innovation |
Whether you get your news from the newspaper, TV news or the Internet, the Number One topic of conversation across the country for the past month has been the Affordable Care Act (or "ObamaCare" as many refer to it.) While the Act has been the law since 2010, there is still lots of controversy and uncertainty regarding its provisions.
If you think planning for this law for your family is a challenge, imagine the challenges that MD Anderson faces in its own planning. In a recent commentary in Conquest - Fall 2013, Thomas Feeley, MD, head of MD Anderson's Institute for Cancer Care Innovation wrote about what MD Anderson is doing.
I think you will find this brief summary of his article to be of interest.
"MD Anderson is preparing for a changing health care delivery environment rather than merely coping with specific aspects of the Act's implementation. That's because in health care, value is defined as the balance between the outcomes achieved and the costs required to achieve them.
MD Anderson will have in place cancer performance metrics measured and reported by next year, as required by the Act.
However, treatment outcomes are but one side of the equation. What about the other side of the equation, which is costs? MD Anderson has partnered with Harvard Business School to develop a new cost accounting system for health care - one that actually measures exactly how much each step in the care delivery process costs. This system, called time-driven, activity-based costing, has created the framework to begin to develop models for episode-based payments as its reimbursement system gradually changes from the long time fee for service structure prevalent in the USA today. This new cost accounting system also provides an opportunity to identify MD Anderson's highest-cost processes and address them directly through performance improvement.
Patients are part of this effort, too. MD Anderson is conducting patient focus groups to ask them which outcomes are important, and how they want to receive this information. In the new environment as in the past, MD Anderson will continue offer the best patient-centered care at the lowest possible cost."
The full text of the article is at Conquest Fall 2013
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| Spring Class of 2011 Reunion in Houston |
 | | "Don't Want No DREs" |
Reunion at Canopy
Mark and Red Anderson with the Fall 2011 Class wish low PSAs to all their classmate friends and want them to know how they enjoyed seeing everyone at the dinner at Canopy on Wednesday evening. The rain didn't keep everyone away but it was raining seriously.
Mark Anderson, now living in the Texas Hill Country, Kerrville, Texas kept his "class" entertained both in the Proton Center dressing room and at restaurants for the Wednesday dinners when he was in Houston. He usually brought his guitar and his bag of gags for us, and he and his wife Red had a skit for us on every Wednesday. Here's Mark rendition of Proton Ditty 2.
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About the ProtonPals Organization
Thanks for subscribing to the newsletter and using the ProtonPals website. We won't sell or give your addresses to anyone. You'll receive one or at most two mailings a month from us. If you're a new subscriber you may want to note that the past newsletters are archived back to May 2009. Newsletter Archives
We're a group who chose proton beam therapy to cure our cancer and were treated at University of Texas MD Anderson Proton Therapy Center in Houston, Texas. The "Pals" formed a network in order to:
Stay up to date with treatment cure resultsProvide support to others and Center activitiesBe informed on any side- effectsPromote proton radiation since it's widely regarded to have a significant advantage over conventional x-rays.Attract and nurture more Pals who support our cause, patient-to-patient and friend-to-friend
Support ProtonPals by letting us know how you're doing. That is so important to newly diagnosed men and their wives and partners. As a former patient we'd all welcome your help in getting the word out about proton radiation and how you're doing. Please donate using the Donate Icon below or mail a check made out to ProtonPals, Ltd.(we're a tax deductible non-profit) at my home address. Read more about it on the website How to Help - Giving
Sincerely,
Joe Landry, Founder
ProtonPals, Ltd.
ProtonPals, Ltd. is a 501 (c) (3) public charity incorporated in Texas.
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DISCLAIMERS ProtonPals is an exclusively patient-sponsored organization with no official relationship with or support by The University of Texas M. D. Anderson Cancer Center or the M.D. Anderson Proton Therapy Center. ProtonPals is simply an information sharing network of patients. ProtonPals hopes to inform, encourage and help patients through shared knowledge. Members are not doctors so more serious concerns should be directed directly to your doctor. ProtonPals also desires to promote the M. D. Anderson Proton Therapy Center as for virtually everyone it has been a very positive if not life saving experience. The ProtonPals web-site, commonly known as the ProtonPals.net weblog, will contain hypertext links to information created and maintained by other public and private organizations. These links are provided for your convenience. ProtonPals does not control or guarantee the accuracy, relevance, timeliness or completeness of this outside information. Further the inclusion of these links to particular items in hypertext are not intended to reflect their importance, nor is it intended to endorse any of these views expressed or products or services offered on these outside sites, or the organization sponsoring the sites.
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