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 ProtonPals Newsletter
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Pals Waiting for the Houston Rodeo Trail Riders
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Friday, February 20, 2014 Houston Texas
Notice how almost every thing has a double edge; and it's probable "you've looked at life from both sides now" according to 1969 song lyrics? Most of us are graduates of cancer treatments and have this sword we're living under, so we've seen life that way.
We think the Houston Livestock Show and Rodeo that started today is absolutely great, but can be a double
 | | Click for Media Guide |
edged sword. It's a spectacle, like Texas, it's well managed and a diverse experience with
very affordable tickets to see great nationally known entertainers. It's a benefit to Houston and surrounding areas, it generates numerous scholarships for many students. For 2014 the show organization has committed to $23 million of educational support but - the downside is the traffic. The venue is Reliant Stadium and traffic is going to be in your area of Old Spanish Trail. If you plan to drive around Memorial Drive on Saturday you're advised to steer clear for a day or so. Friday will be the day 13 rides or caravans converge from all points on the compass rose on Houston and camp in the park on Thursday and Friday nights. Some come from as far away as the Rio Grande valley like Los Vaqueros pictured on the right.
The downtown parade is on Saturday, March 1st at 10 am with the first night performance on March 4th. This continues until the last show on March 23. Tickets range in price for $16 to $300. The first performance will be on Tuesday March 4th for Armed Forces appreciation day. As in the past there is the Go Tejano Day that has a very large attendance and now that have grown to 2 since my early years in Houston of 1986.
In Gratitude,
Joe Landry
ProtonPals, Ltd.
832 335 0353
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| Do You Miss Texas? | You've Not Been in Houston in Almost a Year?
Not to make light of the fact that most of us have cancer, but you're to be congratulated because you're probably doing very well; health wise. There's even a Facebook site developed by a friend who did this for persons who have moved out and miss Texas dearly. "I Miss Texas"
 | | Banfield Capron |
To help you along and maybe bring mist to your eyes, my Pal Ban Capron put his great creative abilities to bear by putting together this YouTube Slide Show. Texas by Ban it's a collection of Ban's photos as he's journeyed in Texas. I watched it last night on my large screen TV that connects to YouTube and it was great. Ban should get a lot of credit for finding the musical medley accompanying the slide show, It's from a 100+ group called the Vocal Majority.
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| Leadership Meets Annually | Who Steers the Activities of the ProtonPals Dot Net?
One way to get to know these guys better is to go to this link ABOUT US on the ProtonPals website to read their profiles. All of the leaders are patients of proton beam therapy with John being a long term graduate of Loma Linda and who's volunteered with MD Anderson for almost 9 years. Peter being the longest term graduate of the MD Anderson Center on our team completed his treatment in 2007. All have been featured in Meet Our Survivors or on the Proton Center social network (we should have held up a copy of the Houston Chronicle for that day) with the exception of Ban. See John's profile here.
 | | John Barna-Lloyd, Ban Capron, Joe Landry, Peter Taaffe, Dave Stevens and Drew.Cox |
The directors met on Thursday, February 20th to review financials, growth and plans for 2014. Part of 2014's efforts are going to be spent studying if the organization can start up or spin off other support groups for tumor types like breast, lung, and head and neck. We accomplished many things to help and provide information to the prostate cancer patients and are in good financial shape thanks to the donations from you and mini-grants from the ExxonMobil Foundation. There were some disappointments in that the membership has not grown like it we like have grow and as leaders we were not successful in producing videos of some of the key talks give at the Beam News meetings. Yes, we produced them over 5 attempts but with the equipment and the technical skills (me) we used it was not publication quality. It looks like we'll have to set up to create a series of short videos out of a 1 1/2 talk.
If you'd like to know more about the organization, volunteer to help or read the minutes of this years meeting along with our financial filings please write to me at jelandry@sbcglobal.net. We became a Texas public charity on March 5, 2009 and were approved as a 501 (c) (3) non-profit organization. |
| Clinical Trial at the MD Anderson Proton Center | Fewer Visits to the Gantry Means Less Time Away from Home
Starting last September the radiation oncologists at MD Anderson Radiation Urology units have been accepting patients in a clinical
 | | Dr. Thomas Pugh the tallest oncologist in the world |
proton beam trial that will run until 2019. Dr. Thomas Pugh is the principal investigator. The candidates for this trial are men with localized prostate cancer who are over 18.
The total dose is less than the high dose treatments that are being used in the daily treatments and the daily fraction is 3.7 Gy (RBE). For example one of our friends is getting treated on Monday, Wednesday and Friday for five weeks, or a total of 15 treatments. Read more at Clinical Trial Description |
| Proton Therapy: The Basics | Which Would You Choose?
Given the choice of IMRT (high intensity x rays from a LINAC) to treat your prostate cancer in your pelvic area where 6 beams cross the area of tocus to produce a maximum dose on the gland,
 | | Treatment Plan with 6 Beams to get maximum dose. |
or proton therapy with two beams which stop right at the margin,
 | Protons dose is molded around the gland
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which would you choose?
The University of Pennsylvania has excellent web site Oncolink started in 1994. It continues to stay at the top of my resource list.
Here's a Oncolink Proton Therapy 101 that explains proton therapy and makes a case for protons over xrays. The images above are from the site. As ambassadors of MD Anderson and proton therapy you might want to use this with a newly diagnosed friend to explain the medical and technical facts. |
| Process Study in Patient Flow at the Center |  From the Patient's Perspective
Earlier this month the catalyst for a study at the MD Anderson Proton Therapy Center started in an examination room. It was a conversation Dr. Steven Frank had with one of his patients. Recently this patient a man who's expert in management consulting kicked off the study and with Dr. Frank's help convened a team where John Barna-Lloyd and Joe Landry are representing the ProtonPals. The consultant is currently collecting data and developing documenting the process.
The "patient flow" being analyzed is specific of treatment and not the follow up clinics which is a different but challenging process as well. It starts when A) one parks their cars in the buildings parking lot and extends to B) when one exits the Proton Center building. As you know by having been there, there are many steps in between A and B some of which involves allowing the time for water to percolate through your body and accumulate in your bladder to a proper level. Over the 7 years I've been around the Center some patients have developed many interesting techniques for their own timelines. Early ones having no ultrasound feedback.
If you have recommendations and want to be heard, please write me and I'll see that Dr. Frank and the consultant gets your information; or you can approach your doctor directly. Joe's Address
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| Angels Under a Heavenly Blue Sky Part 2 | |
Recovery Room Renovation Mission Accomplished
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Last fall one of our benefactors gave a relatively large donation for the renovation of the Pediatric recovery room area ceiling and walls. The project is complete and lovely as you can see from the photos aby Jennifer Brady, Marketing Coordinator. The ProtonPals team had little to do with this initiative except to direct the funds in the right place and call others attention to the need.
 | | Stage 2 Complete |
 | | Yvette Rosenthal and Kelli Jackson tending to a young patient . Stage 1 of Renovation |
How the recovery rooms are used?
For the young patients who are anesthetized, once the beam treatment is complete the young patients are brought into the recovery room where the Yvette and Kelli do their magic. We've written before how moved we are by these angels and parents who are so courageous; needless to say the therapists and nurses are the angels also. When were you last sung to sleep prior to a medical treatment?
To view a touching video of a typical proton treatment day of my hero Jacob Ralston To see a home video from 2007, please look in at the Pediatric Proton Foundation site founded by his mother Susan Ralston. Here you'll find a narrated video where Jacob's father follows one of Jacob's treatment days. Far from the stereotypical hospital environment you'll find Jacob looks forward to his daily visits to the "proton" center and his visits with the nurses. I think you'll find this very moving.
If you'd like to contribute to the new "Teen Room" and other Children's Fund needs, please navigate over to this point on the main MD Anderson Website . Make a Donation to the ProtonPals Children's Toy and Activity Fund As you fill out the form you can make a notation of your special intent. It's possible your employer has a matching program in which case the form is set up to handle this along with regular monthly donations.
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| Molecular Profiling |
 | | Click to Read WSJ Article. |
Custom Fit Treatment for Prostate Cancer
Prostate cancer is not homogeneous and one treatment doesn't fit all. The model used by physicians that depends on pre-treatment PSA levels, a biopsy Gleason Score and clinical staging is thought by most to be inadequate to accurately predict disease progression.That sentence alone plus what you've read recently gives background for why so much work is going on in searching for a signature for lethal prostate cancer. Is it the aggressive kind or not. For example I heard unofficially that is that small Gleason 6s are now slotted to active surveillance instead of treatment. Some say you've only deferred treatment when you take that path and it will most certainly be that for some patients who will need to be treated. For others the cancer will be the indolent type and it will not progress and be fatal.
One of these profiling tests, the Oncotype DX Prostate, by Genomic Health has been in use since May of 2013 and promises, like the breast Oncotype DX, to help sort the decision on chemotherapy by answering the big question, is it going to be needed and will that alone be effective.
There are other approaches and Dr. David " Snuffy" Myers conducted an interview recently with Dr. Zoran Gatalica the Medical Director of Caris Life Sciences and reported the results in a subscription journal ProstateForum. Some time back Dr. Meyers has cleared the way for us to summarize his articles in our newsletter and in this case l 've stored the article for you on our website. You should subscribe to the Journal at $55 a year by linking to his site. To Subscribe
The promise of individualizing cancer treatment is just around the corner and not there yet. The utility of tumor profiling is that while it is not completely definitive it points out the best options in drug treatments and chemotherapy, even in make drug research more effective. This leads to knowing what works and what doesn't work in specific DNA make ups.
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| FUN STUFF |  Everyday Occurrence!
I was born and raised in a part of Louisiana where anyone who didn't speak the French dialect was considered an American, you know, pronounced with a heavy French accent like, " l'american". Well I moved to Texas as soon as I could though not that I wasn't proud of my ancestors who were true survivors. And thanks to the big oil companies who led me to Houston, that's where I've been for 27 years; and two or three hurricanes later. Everyone is warning me not to move back to Louisiana and here is a humorous rant about this point that you should watch - Things Nobody Warned about moving away from Texas. I hope you enjoy it. |
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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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