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Am I Cured?
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ProtonPals e-Newsletter | March 2011
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March 31, 2011. Houston, Texas - Blue bells
This month we're covering two areas that I hope you'll find interesting and more importantly helpful. We've covered the topics to some degree in the past but based on recent work with individual Pals, I thought it was time to do more.
Lupron Legionnaire Dave, one of our January graduates contacted me in search of others like him. He wanted to get in touch with men who were in a long term leuprolide(Lupron) treatment program; interested in how others had coped and found support. As he said, he's absolutely convinced of the effectiveness of Lupron in helping him live longer and instead of whining about the side effects he's laid out a program on how to live and cope with them. He'd like to learn how you're doing and what you've done to live with the side effects you may be having. As a result, he's written a "one pager" in the form of an interview that we're publishing this month. To accompany the release of this paper, I put together the software for a discussion group, with urging that you use this mode to interact with him, and me.
The second area that's related is about long term survivability and quality of life. Our work in that area is just starting and this month I'm borrowing from the work Legionnaire Dave's doing as described above as well as from key Internet resources like the LIVESTRONG Care Plan by Oncolink and Dr. Charles Myers ProstateForum.
What's New?
- A new One Pager in the form of an interview with Lupron Legionnaire Dave - Dealing with Lupron. We're asking for help from you in "How You're Doing" section and for comments on the interview. Do this by writing to Dave or me by using our email addresses or the new discussion forum. A downloadable copy in PDF is available here. Dealing with Lupron
- A new discussion board . It's organized currently for men who are in a long term hormone therapy program but depending on the interest will be expanded to other topics for the ProtonPals. You'll need to register to be able to comment and introduce new topics. You'll get an ID and Password via return email when you register.
- Weekly ProtonPals Meet Up Dinners - these dinners are a great way to meet other Pals here in Houston from all parts of the country for treatment. It's also your chance to support each other.The schedules are posted in the change room and if you're no longer spending any time in the change room, it's posted on the Proton Center's Facebook page.
- Monthly Proton Patient Meetings - Attendance is so large that the meetings can no longer be held in the small conference rooms in the business center. Last month I saw Chuck Merrifield, Supervisor, presenting to a near capacity crowd in the east wing of the PTC. This month I presented "My Four Year Journey with My ProtonPals".
- Beam News Meetings - Coordinated by Carolyn Allsen, Nurse Manager, these meetings are held every Wednesday at 10 AM and the attendance has grown significantly. Topics include - how your radiation plan is calculated, Ask the Nurse, Ask the Doctor, presentations by physics experts and scientists who talk about the works behind the gantry and first hand talks by patients who've graduated.
Don't forget there's more information on the Proton Center Facebook site as well as on the ProtonPals Facebook site.
Please let us know how you're doing and we'll use it to help someone.
Your ProtonPal,
Joe Landry
March 31, 2011
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Lupron Legionaires
An Interview with Lupron Legionaire Founder, Dave S.
About 4 weeks ago I was contacted by Dave with an idea of starting up a patient's support group of the M.D. Anderson Proton Therapy Center patients who were on long term hormone therapy. In that short period of time Dave's written an excellent interview and we've supported his work by publishing it on the website and building a discussion board to host discussions about how to cope.
As you well know, the hormone is leuprolide (Lupron) and we haven't written a whole lot about this area in the ProtonPals news and website, and I thought it was high time to do that as you'll see.The majority of us have not had Lupron shots and will not experience some of these side effects unless we end up with a relapse (a biochemical failure). At which time hormone therapy is one primary recovery treatments. All of the work and study has been done by Lupron Legionnaire Dave who will lead the group and moderate the discussion. Please read the interview even if you're not on long term therapy since it has all of the elements of a survivorship program. The "one pager" interview is on the web site here Dealing with Lupron or get a PDF copy for your use or to hand to another Pal.
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ProtonPals Discussion Board
Lupron Legionaires
The discussion board, bbPress, was installed rather quickly with only a few hours of testing. Please consider that it's new to me also and if you run into a hitch and get frustrated, please contact me. And if you have expertise in this area could help me customize the site please let me know and I'll be VERY grateful.
I've written a draft of a User's Guide specifically for us and it will be on the website this week end.
Rather than having a single discussion area, with topics intermingling with other topics, the themes of conversation of the group are organized into a number of separate containers, rather like a folder and file structure of your hard disk. I've organized with two top level major categories or folders named GETTING STARTED and HORMONE THERAPY. HORMONE THERAPY is followed by a series of sub forums or topics, like Energy Levels and Change in Weight. See the image below or navigate to the site. ProtonPals Discussion.
We're encouraging you to register in this forum so that you can post new topics and comment on the existing topics but in order to be of most service we've set it up so anyone can read it. Enter your name and email address and you'll get a password in a return email, and you can use it immediately.
Security and Inappropriate Postings. We'll follow up to confirm you're a ProtonPal and appreciate some help as you look at the discussion site. Please let me know if you spot any inappropriate topics or comments and I can handle it from my end. One of our colleagues, Fuller Jones, found he had to check out every member who signs on to the Yahoo forum in order to manage his site..protoninfo forum.

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Dr. Charles E. "Snuffy" Myers
A Most Respected Expert and Potentially Your Survival Guide
Dr. Snuffy Myers has been seeing patients for many years and over my four years involvement with this topic, I've personal known three men who became his client or patient as they dealt with their prostate cancer. Dr. Myers heads up a practice called American Institute for the Diseases of the Prostate (AIDP) in Charlottesville, Va and acts as a consultant or an advisor. He writes a blog and publishes a newsletter called Prostate Forum. It's available in electronic form for a very reasonable subscription price at this website his group maintains PROSTATEFORUM. A place where you can sample the newsletter or subscribe along with other resources.
Before Dr. Myers started this practice he trained as an oncologist at the National Cancer Institute and spent many years with the NCI in the clinical pharmacology branch where his work led to several discoveries along with multiple publications. Dr. Myers Biography
The role Dr. Myers took with my three friends was as consultant or advisor. Given the diagnosis he helped them decide whether more tests were needed and the mode of treatment, including advisory follow ups on tests and survival techniques.
If you look at the website Ask Dr. Myers you can view any number of interesting blogs on topics related to prostate cancer treatment and survival, including nutrition and supplements. He has very interesting comments on the use of super supplements and plant molecules like Quercetin, curcumin, resveratrol and red pepper.
This is his tagline -
Better Treatment Through Education
We believe that in-depth patient education facilitates better medicine and positive outcomes. In other words, the more you know about prostate cancer-and your own particular form of the disease-the better your choices for treatment will be and ultimately your chances for survival.
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Cancer Survivorship
Two Out of Three Ain't Bad
Here are the key elements to cancer survivorship - early detection, improved treatments and the supporting care of family and friends. The number of survivors from the Proton Therapy Center is growing every day as we join 10 million cancer survivors in the United States. One out of six people over sixty five is a cancer survivor. MDACC.
Unfortunately cancer treatments are not without consequence or side effects and these survivors are dealing with long term effects with little specific guidance. The Institutes of Medicine (IOM) researched this area and found that little guidance is available for survivors and their healthcare providers to medical and psychosocial problems that may arise after treatment. This is changing rapidly and Anderson now has a large number of programs and one of the key programs is the annual Anderson Networks Survivors Conference.
My fourth anniversary is on April 14 and as I'm waiting to find out what my PSA level is this year I get reflective. It's been rocking along the bottom and hope it doesn't turn up. I'm thinking with some luck and resourcefulness I met two out of three elements of cancer survivorship. - Check me off on the early detection one since I was getting regular urologist's care with annual prostate screenings.
- And I met up with an improved treatment because of proton therapy. This opportunity came from being in Houston and from a chance meeting with a friend where I got a first hand account of proton therapy.
But I think the third area,"important to survival and quality of life is supporting care from family and friends" could use some work on my part. I'm not doing my part in taking care of my body and as a consequence I'm in physical rehab. Dr. Servan Schreiber in his book, AntiCancer Book spends three chapters writing about Anticancer Mind, Anticancer Body and Anticancer Food. The key is the mind-body connection and studies have found that we can help our immune systems help us. The Lance Armstrong Foundation has worked with PennMedicine Group (UPenn and Oncolink) and funded the development of the LIVESTRONG Care Plan. At this site you can order your own binder (pay only shipping charges) and develop your Care Plan customized for you and the treatment you received. And in the paragraph below you can learn about relaxation techniques from an expert at the monthly group meeting.
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Proton Therapy Prostate Patient Group Meeting
Relaxation Techniques for Body, Mind & Spirit
Toni Franciosi, MCSW, LCSW, a counselor for the M. D. Anderson Cancer Center Lymphoma Clinic will present to the regular meeting of the prostate cancer patient group called "Relaxation Techniques for Body, Mind & Spirit".
The meeting is on Thursday, April 28, 2011 from 1:00 to 2:30 at the Proton Therapy Center on Old Spanish Trail. Rooms PTC1.1124 & PTC1.1128.
Please call Lindsey Menke at 713-794-5926 or Alicia Rubel at 713-794-5926 for more details.
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Reunion Anyone?
Take a poll ?
Several have approach me and asked, "Why don't we have a reunion?", and frankly I haven't been able to make it happen because of my organization skills, time and energy. But I've always thought it was a good idea and so did the management which is why I talk about an open house at the Center. While out to dinner on Monday, one of my lovely friends, Linda, from the Mississippi Gulf Coast has cruised a few times out of Galveston and said, "Why don't we have a ProtonPals reunion on a cruise liner?" Take a quick poll and let me know what you think. Interested in a Reunion Cruise in the Gulf?
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Texas Monthly - Texas Tibits
In Texas, Springtime Equals Blue - and Lots of It.
As part of caring for your mind - body, consider treating yourself to some beauty Texas style. The Texas Department Of Transportation plants 30,000 lbs of wildflower seeds every year and since you're here in April, get in the car and drive west. If you get there on a week day make sure to stop by and get a serving of Bluebonnet Old Fashioned Vanilla ice cream in the Brenham factory. The principals in the Bluebonnet ownership are strong supporters of MDACC Survivorship Conference. joe landry
Published in the March Texas Monthly. - Come April, bluebonnets, Indian paintbrush, coreopsis, and many more native beauties blanket
the plains, hills, highways, and even the forests of the Lone Star State. Early Native Americans wove fascinating tales around the origins of bluebonnets, and Spanish priests gathered the seeds and surrounded their missions with the vibrant blue flowers. In fact, the two predominant species of bluebonnets are found growing naturally in no other region of the world except Texas. It's not surprising then that five variations of bluebonnets were christened official state flowers in 1971. The ruggedly beautiful state symbol blooms all over the Texas Hill Country, and many of Central Texas's most beloved tourist events celebrate the blue beauty. To get you ready for spring, we've put together a list of some of our favorite bluebonnet (and/or wildflower) celebrations. All you need to do is hop in your car and go.
April 3-23: Wildflower Celebration Head seven miles east of Fredericksburg on U.S. 290 and you'll discover more than two hundred acres of bluebonnets, red corn poppies, rocket larkspur, and other spring flowers at Wildseed Farms, the largest working wildflower farm in the United States. Explore walking trails within flowering meadows, tour a three-thousand-square-foot butterfly haus (or house) showcasing natives of Texas, and grab a snack (peach ice cream!) at the Brew Bonnet. For more information, call 800-848-0078 or go to wildseedsfarm.com.
April 7-9: Bluebonnet Festival Burnet's tribute to the state flower features a pet parade, a bicycle tour, nightly old-fashioned dances, an air show, carnival rides, shoot outs and wild west shows, live music, food and beverage booths, and a bevy of arts and crafts. Oh, and this year's Miss Bluebonnet will be crowned at the festival's scholarship pageant. For more information, call 512-756-4297 or go to burnetchamber.org.
April 8 & 9: Official Bluebonnet Festival At Chappell Hill, halfway between Houston and Austin, the bluebonnet festival is known for its unique crafts. Of course, the live music, children's activities, and food are big draws too. But die-hard flower fans will gravitate toward the wildflower experts who will be on hand to recommend prime wildflower viewing routes through the trails of Washington County. For more information, call 800-225-3695 or go to chappellhillmuseum.org.
April 8 & 9: Spring Plant Sale and Gardening Festival
In south Austin, the 279 acres comprising the Lady Bird Johnson Wildflower Center blossom wild in riotous color during the peak springtime season. The former first lady, an avid steward of nature (she led efforts to secure the passage of the Highway Beautification Act of 1965, which resulted in fewer roadside billboards and more fauna displayed on medians), allowed sixty acres of family-owned property to be used to establish the center in 1982. The gardens are not only beautiful to look at but also serve as models for homeowners looking to restore their own properties with native plants. At the plant sale and gardening festival, visitors will be able to purchase plants and seeds from more than three hundred species of plants. For more information, call 512-292-4100 or go to wildflower.org.
April 21-23 & 28-30: Wine and Wildflower Trail
Nineteen Hill Country wineries have joined forces to host this event, which features special vineyard tours, food-and-wine pairings, and music through bluebonnet-speckled landscapes. For more information, call 866-621-9463 or go to texaswinetrail.com.
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About ProtonPals
Thank you for subscribing to the newsletter and using the ProtonPals web-site. You'll receive one or at most two mailings a month around mid month. In addition to the newsletter we'll also send one or two additional emails of special events or news that are of interest to the group that month. If you're a new subscriber you may not notice that we've contracted with the email service to archive our newsletters back to May 2009. ProtonPals is a group who chose proton beam therapy to cure their cancer and were treated at the University of Texas M.D. Anderson Cancer Center Proton Therapy Center in Houston, Texas. The "Pals" formed a network of Pals in order to: - Stay up to date with treatment cure results
- Provide support to others and Center activities
- Be informed on any side- effects
- Promote 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
Joe Landry, Ban Capron and Peter Taaffe 15806 Manor Square Drive
Houston, Texas 77062 - 4743 ProtonPals, Ltd. Support ProtonPals by letting us know how you're doing. 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 now tax deductible) at the address above. Read more about about it on the website How to Help - Giving
ProtonPals, Ltd. is a 501 (c) (3) public charity501 (c) (c)
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