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Join your Pals at the Wednesday night dinners. The locations rotate among various restaurants in Houston. See the schedule at the reception desk. Tell your ProtonPal friends about Joe's House to find housing in the Medical Center area. This link is also on the website and on MDACC website.
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Use your smart phone, tablet to scan this QR symbol. It will take you to the ProtonPals sign up page. You may be on the mailing list but not on our main data base. Please sign up your friends.
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 | | "Their sudden abundance each spring nurtures our fascination with magnitude and reach - whole damn canvases of color, not the fine brushstroke." Jan Reid, Sr. Editor in 1991 clipped from the Texas Monthly |
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Greetings!
The spirit of friendly good-fellowship that comes about when a group of guys and gals are in Houston is fantastic; and periodically I'll see where in addition to the Wednesday night dinners, some outgoing individuals will step forward, bond and organize themselves for special outings and short trips. They did this last winter and when it was time for the annual check-up time in Houston they held an annual reunion. Some came from Alaska and some from Pennsylvania. It was a first for the ProtonPals and they gathered in Houston the week of March 5th for several days of get togethers. It was called the Winter Classic and the article written by Donn German and Val Horner provides details about the reunion along with photos I collected and posted on Facebook. Check the "Winter Classic" album on Facebook Album while you're there please like us and we'll stay connected.
Dr. Terry Lavy one of our ProtonPals was featured in an article in Bob Marckini's BOB Tales March newsletter as well as in Men's Health Update. We reflected on his story along with some notes pointing out the other stories on the Proton Therapy Center website as well as on ProtonPals website.
Dave and I attended a couple of sessions put on by the Anderson Network. It turns out we ended up on the planning committee for the Survivorship Conference, to be held September 14-15 (Friday and Saturday) in Houston. In addition to planning we'll be working at the conference by helping with the break out sessions and other tasks. Please mark those dates and see if you can align your follow up schedule with this week end. Hotel room rates are discounted and conference attendance fee are heavily subsidized by M.D. Anderson and other benefactors.
At another session, we also heard from, Elizabeth Brackeen, the Senior Librarian of the Patient Education Office -Learning Centers and I've summarized her talk in two articles.
The March BOB Tales newsletter written by Bob Marckini and his editor Deb Hickey is really outstanding in design and looks, as well as in content. This month they make note of many items but one in particular is the number of proton centers opening soon and being planned. Looks like the number of centers may have reached a critical mass (oops maybe the wrong word), i.e. the numbers appear to be accelerating. The monthly Prostate Cancer Proton Therapy patient meeting was held on March 22nd with Dr. Choi presenting for 40-45 minutes. There were 40-45 minutes of questions for a total of an hour and a half. There were several items which could be gleaned from his talk but neither Dave nor I could do it justice this month. About the only thing I could write is that the data on follow-ups and Quality of Life survey is being worked on and everyone is going to be happy about the results. We'll write more next month. If you're new, thanks for subscribing and let us how you're doing along with your interests in more reunions and social programs. The Anderson Network Survivorship Conference in September offers an opportunity as a place to assemble, hear great speakers meet other survivors, with a special rate in a very good hotel. In Gratitude, Joe Landry |
Winter 2011 ProtonPal Reunion
| Comraderie Continues
By Donn German and Val Horner
The ProtonPals and our Caregivers bonded during the winter of 2011 treatment at the MDACC Proton Therapy Center (PTC). We were a group of men (and caregivers) of all ages and diverse backgrounds, with one life-changing event in common: Prostate Cancer. Meeting nearly every day for treatments, and getting together socially away from the PTC, we grew close during the winter. We learned about each other's families,
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It's Rodeo Time with Don, Dortha, Val, Bob, Jim, Deb, Lina, and Bob
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shared our lives, our worries, and our triumphs. The weekly ProtonPal dinners gave us all a chance to meet more Proton Pals, current and alumni, encouraging us, and helping to count the days as those bonds of friendship grew stronger. When the time neared for us to "ring the gong", we were happy to share the experience with our new friends who by now were like family, but saddened that we might not see each other again. We decided "someone" should plan a get-together at near the time for our one-year checkups, and that keeping in touch via e-mail just would not be enough.
In August of 2011, Paul Anderson of Pennsylvania stayed with Val and Bob Horner in Juneau, Alaska. During the visit, Paul and Val volunteered to be the "someone" to develop a plan for a 2012 March Reunion. Val became official secretary. Paul's friends in Houston volunteered to host the event at their magnificent Houston home. Drew Cox of Houston joined the planning team to help organize the entertainment and food. Alan McNeil of Beaumont organized the Rodeo event. Alumni, current Pals, and PTC staff were invited to the fun weekend that all came together March 10 and 11.
We gathered for some great Mexican food, music from Reid Farrell and Friends (followed by a jam session), and most importantly a chance to compare notes and visit with our friends on Saturday evening. Paul Anderson and Mark Anderson each wrote and sang a song about our PTC experiences- from biopsies and balloons to the wonderful sound of the gong. They generated a lot of laughter, slaps on the back, and many jokes. Dr. Choi and Stephanie from the PTC joined us, and we are thankful for all they and the PTC staff have done for us. Sunday was a fun day at the Rodeo - a first experience for some! We renewed our promises to keep in touch.
We had an exciting time reconnecting and sharing our progress since we left the PTC in 2011. The hormone effects are fading and life is good for everyone as we all celebrated our first year without cancer. We are grateful to our friends for making the Reunion happen. We were sorry that more could not make it, and we hope they will join us next year for our two-year checkup and Reunion.
We encourage other groups to reconnect at a Reunion with their Pals and Caregivers - no one else can really understand how life-changing those 39 treatments were to us.
With blessings,
Donn
Donn German
19417 Sea Island Dr
Pflugerville, TX 78660
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A ProtonPal featured in BOB Tales
|  Our Survivors 
Dr. Terry Lavy, retired professor from the University of Arkansas wrote about his journey in, "My Story", over 3 years ago and sent it to his large network of family and friends. He also sent it to us at ProtonPals where we featured it as one of our stories. In the intervening years he has been contacted numerous times and given many hours to supporting newly diagnosed patients; and referred dozens of patients to the Anderson Proton Therapy Center. I get personal testimonials from patients as far as Minnesota about how Dr. Lavy's followed up on phone calls made to him. He is very open about his story and published his contract information for all who might want to get in contact with him. Here's the link to the March Newsletter with the article from Men's Health Update. NAPSI Reference Link. Thanks Terry for your support.
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| Meet Our Survivors: ProtonPals |  A Volume of Stories about our PalsSomehow it came to me this morning that you may not have seen all the stories that have gradually been developed and collected over the past 2 years by Dana Lee, Marketing Manager of the Proton Therapy Center; and published on the MD Anderson Proton Therapy Center website. The section is named "Meet Our Survivors" . There are over 25 stories about the survivors who were diagnosed with various tumor types and treated successfully. For our prostate cancer Pals we have Lorenzo's story who's been active in the firefighter community in Houston and I was lucky to meet him on his first trip here. We've written about his story in an archived newsletter. Lorenzo's brave story is here on his foundation's website "Good Morning Mr. and Mrs. Abundiz."There are other stories which are pending and but not yet published. Here are the stories that have made it so far in the Proton Therapy Center website. I continually get feedback and thanks from the patients who have found comfort and a feeling that all will be well after they read these stories. A deep felt thank you to all who have contributed. Here are the stories in the ProtonPals website. Our StoriesIf you'd like to share your story be sure to contact Drew or me and we'll see about getting it the newsletter and the website. |
| New Proton Therapy Center Opens in NJ | Procure Opens another Center in NJ and NY Area (DOT Med 3/30/2012)
A New Jersey proton therapy center opening today is the first to operate in the greater New York region and only the tenth such center nationwide. ProCure Treatment Centers Inc, a developer of for-profit centers that offer the high-tech cancer treatment, said it was hosting a ribbon-cutting ceremony this morning for the $160 million facility. The 60,000-square foot center, ProCure's third, is located in Somerset, about a half-hour drive away from New York City.
Another center, the Seatle CCA center in the NW received and installed it's cyclotron this month. It'll take a few months to complete the facility (build it around the heart the proton generator) and then to commission the treatment rooms.
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| A NEW About Us | A Patient Sponsored Organization
"First you tell them what you're going to say, then you tell them, and then you tell them what you told them." So went the advice someone gave me on giving a successful talk. Here I know most of you have read this information before and it may be repetitive but there are new subscribers and folks like me who have to be reminded every 6 months. Here's some of this information that's on the Welcome page. 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.The key points are given in the Home or Welcome page but after hearing the talk about how you should evaluate patient websites covering medical issues, I thought I'd fill in the blanks for you, for areas you may not know about. I went back and summarized each of 6 areas in an easy to skim page. It's listed as the About Us page,
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How to Evaluate Medical Web Sites
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Internet Searching
The number of prostate cancer and medical web sites offering health-related resources grows every day, Two of the Pals attended a talk given by another one of your really remarkable persons on Anderson staff who's an expert. Elizabeth Brackeen MS is a Senior Librarian who in her regularly job helps patients like you and me find additional information about cancer and new developments. Well you don't have to be a patient, you can walk in off the street or write/call and get her help in finding reports, results and copies of articles on the topic of you interest. She is not your librarian of my generation; Elizabeth also teaches members of the medical and research staff and graduate level courses in the area on how to use internet resources for your research. You'll see what I mean when you watch a short video about Elizabeth. "I Am M.D. Anderson"Here are the bullet points from the presentation on evaluating medical sites. 1) Who runs this site and how is it funded? 2) What is the purpose of the site? 3) Where does the information come from? 4) How current is the information? 5) How does the site choose links to other sites? 6) What information about you does the site collect, and why? 7) How does the site manage interactions with it's visitors? Here's Elizabeth's handout used in the meeting. View the handout for more details |
| Proton Therapy at Anderson Proton Therapy Center |
 | | Dr. Andrew Lee and Ban Capron |
Looking to learn what it's like?
Ban Capron as many of you know co-founded the ProtonPals by joining the effort I had underway in early 2008. Ban added other dimensions to the organizational effort including his "My Journey." That's how I came to meet him one fateful Thursday at a patient meeting in the Proton Therapy Center If you know Ban you'll know of his great organizational and photographic skills; and we made use of that in putting together some information for newly diagnosed patients.
Somehow Ban's slide show he put together for our use at an Anderson Conference is on the ProtonPals Facebook page, along with captions used to tell the story of prostate cancer treatment at M.D. Anderson Proton Therapy Center.
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| Free and Reliable Health Information Resourceson Resources | Be a Web Savvy Patient
There are three learning centers located on the University of Texas M.D. Anderson Cancer Center campus plus a small one in the Proton Therapy Center. In addition patients and public can access the Research Medical Library on the 21st floor of the Pickens Academic Tower. Start here to learn more about the centers. For prostate cancer patients there are dozens of key books you can check out as well as getting individual help. The Center summaries the resources on Pathfinder one page handouts and you can check the one on prostate cancer here A Pathfinder on Prostate Cancer le to drive traffic to your website. Links are tracked, allowing you to see which articles create the most interest for your readers. The Senior Librarian Elizabeth Brackeen has summarized information resources on this handout. Health Information Resources Don't be discouraged if you get a little frustrated with some sites. Some of these sites are very powerful and she teaches a course on how to use PubMed.
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| A Special Article in March issue of BOB Tales by Bob Marckini | On U.S. Preventative Service Task Force Recommendation to Eliminate PSA Screening
One of the Brotherhood of the Balloons Members wrote to Bob Marckini and published in the March Newsletter. Proton treatment has been under attack for years. I believe it is due mainly to the following: - The higher cost of proton treatment versus other treatments
- Doctors who have no access to proton treatment centers
- Proliferation of Urologist Owned (IMRT) Facilities
I have never seen a media article that favors protons. It seems as though the media parrots those who are anti-proton. I have attended meetings that featured non-proton oncologists and 100% said there is no scientific evidence that proton therapy is superior to IMRT. It seems like they are reciting a script. This pretty much sums up what I've learned and believe, although I've learned not to sell IMRT short. In some ways the IMRT technology has a lead time on positioning and treatment dose, and with that it can be used it ways that is not met by the current proton therapy for some tumor types. I believe this comes about by having a lower entry point, economically, and then with that being able to go through more generations of development and implementation.
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| Do You Have Apple iPad Envy? |  My Contractor Uses His iPad to Sell His Work Looks like not only your construction contractor but your oncologist will be using Apple's new iPad for diagnostic imaging and going over your results. The new high resolution screen and data rate will put the crimps on the any WiFi network on the MDACC campus as has deployed in their centers iPads in Medical imaging iPad Application for Sharing Teaching X RaysAlthough every examination room in the Anderson Proton Therapy Center has a high resolution computer screen and it's linked to central libraries this will provide the oncologist more flexibility. Also, the portability will provide advantages to the doctors who make rounds on the wards and clinics. Doctors turn to Smartphones, tabletsLuis Saldana, associate chief medical information officer for Texas Health Resources, said that by linking mobile devices such as smartphones and tablet computers to hospitals' electronic medical records, "we're trying to extend the physician beyond the hospital." |
| We Don't Need No RCTs |  Doctors Spar over Putting Proton Therapy to the test
For Dr. Hideyuki Sakurai, the director of a proton medical research center at the University of Tsukuba in Ibaraki, Japan, that's OK. Taking the pro side for the question, "We do not need randomized clinical trials to demonstrate the superiority of proton therapy," Sakurai outlined some ethical and practical objections to running RCTs. We don't need no RCTs
For one, it's not appropriate ethically because science already knows the main difference between the two treatments and what we could expect from a study. "There is no medical rationale for such RCTs because it is known that protons deliver lower doses to non-target tissues than do photons for the same specified dose and dose distribution to the target," he wrote. "RCTs to provide answers to questions that can be readily answered by simple planning comparisons are not necessary."
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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 their cancer and were treated at University of Texas M.D. 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 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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