"Information about Proton Therapy You Don't Hear in the Gown Room or on the Net"
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Dave Steven's talks on prostate cancer, proton therapy and hormone effects will be held on regular rotation for each "class" at the Proton Therapy Center. The next talk will be on Wednesday, November 23rd at 10:00 am in the Proton Therapy Center.
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Greetings!
"What happens to us is often not our choice, but how we react to what happens is always our choice - conscious or not. Being grateful means choosing not to ignore and take for granted all the wonderful things in our  lives and our world. Be grateful to the people in your life. Give friends, family and strangers a smile or a kind word. Think about the joy others bring to your life in their words, actions or simply their presence." The reason you came to the proton center can't be considered a fortunate thing to happen to you. But in choosing the Anderson Proton Center new things certainly came into your life and if you score these according to three key criteria cited by the author Andrew Schorr, then you are fortunate. You chose a facility. where "1) the doctors are at the leading edge for your specific condition, 2) the medical facilities where patients with your condition are having the best outcome and 3) the patient mentors who have journeyed down this road and are poised to share their knowledge with you." Speaking for the ProtonPals team (your patient mentors who share their knowledge with you) and for myself, we are thankful for many things that have happened this year. For one my PSA continued to decrease after 4 1/2 years and now is nadiring (bottoming out) at 0.1 ng/ml. We've had the privilege of meeting you as you shared your stories, your interests, and talents.
This year the team, Ban, Peter and I have been fortunate to be joined by two additional generous leaders both of whom are very active and serve you on daily basis and if not daily, certainly weekly basis.
Dave Stevens, the Lupron Legionnaire and an active leader in his "class" last winter, agreed to join forces with the ProtonPals is now a director. He supports you by researching "one pagers" and making regular presentations to the group. He responds personally to questions about prostate cancer and Lupron treatment.
Drew Cox was active in helping others while in treatment and decided to make it formal by becoming an Anderson Network volunteer. Drew dons his gray volunteer jacket, takes time away from his job and reports to the proton center every Wednesday morning to work with the staff and the patients. He finishes his Wednesday by joining a sizeable number of Pals at the regular Wednesday dinners.
We've also received significant help from the staff at the center as coordinated by Dana Lee, head of the proton center marketing staff. She took our ProtonPals home made brochures, gave them to a designer and copy writer, used Ban and my words, dressed them up and gave us a whole new professional looking Proton Pal brochure.
Plus we're grateful for your financial contributions which we solicit, however non intrusively. The funds you give us supports the costs of the website, the newsletter service, and the operation of our volunteer organization. We get a lot of copies of medical journal articles but we have to buy quite a few of them.
We're grateful to the staff of the Proton Center, my friends at the Anderson Network and the two M.D. Anderson Learning Centers for answering all the questions that we pose to them and providing us with copies of medical articles.
Dr. Lee for responding and reviewing our writings before you see it. We have him review our writings and presentations before you see them, but don't rely completely on what we say; always check with your doctor.
And we're thankful that you are patient with us when we say "I really don't know and haven't experienced this side effect." "You really should check with your Proton Center doctor" or at times we'll say this is what I think Dr. Lee would tell you that you should do.
Thanks to Dave, for getting in the speaker rotation for his popular talks this Wednesday the 23rd. Please attend this Beam News meeting: On Wednesday, November 23rd, Dave Stevens will give a talk, "Information about proton therapy you don't hear about in the gown room or on the Internet." Refreshments will be served.
Looking forward to seeing you there.
In Gratitude,
Joe Landry
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On My Road Less Travelled
| Ecumenical Thanksgiving Grace
Meal Gatha
"We receive this food in gratitude to all beings
Who have helped to bring it to our table,
And vow to respond in turn to those in need
With wisdom and compassion."
I used to go off on weekend retreats at a historic Jesuit Spirituality Center in Louisiana, one that's served the area since 1837. I usually chose the retreat for Christian practitioners of Zen; and it was led by an exceptional man who's background was quite diverse. Robert E. Kennedy is one of three Jesuits in the world who answer to both titles "Father" and "Roshi (venerable teacher)". An American Catholic priest and a Zen master (Roshi) with doctorages in Theology and Psychology, a practicing psychoanalyst in NYC, chairman of the Theology department and a teacher of Japanese at St. Peter's College in NJ. His involvement with Zen Buddhism and while assigned in Japan is another story and too long to include here. At these retreats we are taught to say a long meal gatha or prayer which starts by saying we should know how this foods comes to us and as we receive this offering we should consider whether our virtue and practice deserves it. Hearing inspirations written in different words and from another perspective becomes particularly comforting or awakening. Here's one prayer we recited as we ended the long days of "practice." Evening Gatha
Let me respectfully remind you: Life and death are of supreme importance. Time swiftly passes by and opportunity is lost. Each of us must strive to awaken, awaken! Pay heed: this night your days are diminished by one. Do not squander your life. ED: We write the newsletter for you and hope your find it helpful and inspirational. It will at times reflect the leadership's views and opinions. We're open to publishing other views and opinions if you'd like to write a column.
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| ProtonPals Comments to USPSTF | | Letter to the US Preventive Services Task Force on PSA Screening
The bottom line of our work on trying to keep the PSA screening test out of the "ash heap of history" is summarized in a letter written by Dave Stevens to the USPS Task Force, care of Dr. Robert Cosby.
This letter was submitted in your behalf. Individual comments and letters to the elected officials and editors were submitted by numerous others.
BY FEDERAL EXPRESS
November 7, 2011
Dr. Robert Cosby
United States Preventive Services Task Force
540 Gaither Road
Rockville, MD 20850
Re: Comments on the October 11, 2011 USPSTF Draft on PSA Screening
Dear Dr. Cosby:
I am writing both on behalf of myself and on behalf of the Proton Pals, Ltd., of which I am a director. Proton Pals, Ltd. is an organization of prostate cancer survivors across the United States who have undergone proton radiation treatment. We urge the United States Preventive Services Task Force ("USPSTF") to withdraw its October 11, 2011 Draft Recommendation Statement [1] (hereinafter "draft") for the following reasons:
1. The recent randomized prospective trials conducted without bias confirm that the PSA screening test reduces deaths from prostate cancer.
Please download the complete letter by linking here or write to me for a copy. jelandry@sbcglobal.net
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AUA's Position
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"A Great Disservice to Men World Wide"
The American Urological Association(AUA) responds to the draft USPSTF recommendations by writing the following: "The AUA strongly opposes this position, and feels that the Task Force is doing men a great disservice by disparaging what is now the only widely available test for prostate cancer, a potentially devastating disease. We hold true to our current position as supported by the AUA's Prostate-Specific Antigen Best Practice Statement that, when interpreted appropriately, the PSA test provides important information in the diagnosis, pre-treatment staging or risk assessment and monitoring of prostate cancer patients. But not all prostate cancers are life threatening. The decision to proceed to active treatment or use surveillance for a patient's prostate cancer is one that men should discuss in detail with their urologists. The AUA's Response
Immediately following the release of the USPSTF recommendations, AUA President Sushil S. Lacy, MD, released a formal statement on behalf of the AUA. The AUA is also coordinating a sign-on letter for lawmakers to send collectively to U.S. Health and Human Services Secretary Kathleen Sebelius, urging her to reject the USPSTF recommendations. We are currently in the process of convening an expert Panel, which will prepare and submit formal comments to the USPSTF.
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| What's the Status of the PSA Screening Flap? | Send a letter of Outrage to HHS Secretary Kathleen Sebelius!
The USPSTF collected comments for 30 days and has turned off the web site and probably now will meet to review the comments and whether any blows have been struck. Please continue to make your voice heard this time by going to the AUA website and using their draft letter and the tool at their site that will direct your note to your elected representative. One of the best outcomes that could happen to the PSA screening recommendation would be what happened when the USPSTF touched the "third rail" of mamograms and downgraded the test for women over 50 to a "C" grade described as follows:
Clinicians may provide this service to selected patients depending on individual circumstances. However, for most individuals without signs or symptoms there is likely to be only a small benefit from this service.
Several medical societies and expert groups, including the American Cancer Society, objected to the USPSTF's new recommmendations. The The USPSTF has been accused of playing politics in deciding to downgrade mammograms for women under 50.In a 61 to 39 vote, the Senate dealt a significant blow to the power and credibility of the U.S. Preventive Services Task Force (USPSTF), by essentially deciding to disregard the task force's recent recommendationthat women under 50 shouldn't undergo routine mammograms.read more The Vitter amendment specifically set aside the most recent USPSTF guidelines, noting that "those issued in or around November 2009" were not to be used in determining coverage requirements. Could we make the same thing happen with the PSA Screening recommendation? I found one organization who's all for starting a million man petition in support of finding an imaging solution and are calling it the "manogram." We're evaluating the proposed movement and thinking about joining in. Please let me know what you think.
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| Hospital Sized Proton Center | Will We See 25 North American Centers by 2013
Mevion Medical Systems (formerly Still River Systems) delivered the main accelerator of a new smaller sized proton therapy system to S. Lee Kling Center for Proton Therapy at the Barnes Jewish Hospital and Washington University School of Medicine in St. Louis MO. The delivery of the first system is running a bit late due to challenges found in applying superconducting supercooled technology in a proton source. Using these alloys to build the main accelerator magnet greatly reduces synchrotron's size and lets Mevion mount the source on the Gantry.
It's being labeled as the first superconducting synchrocyclotron ; and as the name would lead you to think getting to beam on has presented a challenge. Start up is running about 3 years later than planned. Although more compact than the full scale centers like the ones at Anderson and being installed in two Mayo Clinic locations, it is still relatively complex. Typical proton centers use chilled water to cool the magnets in the cyclotron but with Mevion's system the magnets are running immersed in liquid helium at temperatures less than 10 degrees Kelvin or minus 457 degrees F.
For Barnes Jewish Hospital the hurdles left for 2012 patient treatments are the commissioning and the FDA approval which could take up to a year; so look for patients treatments to starting late next year.
Mevion said two additional facilities are in the midst of installation; Robert Wood Johnson in New Brunswick, NJ and Oklahoma University in Oklahoma City, OK.
SOURCE: PRNewswire Oct. 31, 2011
Ed. Note: Although Mevion announced that the accelerator will produce a beam of 250 mev, it's not clear whether this system can be used to treat deep seated tumors like prostate cancer.
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Questions on Proton Therapy
| | Where the Answers are Hard to Find
The Beam News Presentation this coming Wednesday, November 23, 2011 is on "Questions on Proton Therapy where the answers are hard to find." It will be held between 10:00 am and 11:15 am in the Proton Center large Conference Room. The speaker will be Dave Stevens, one of our patients and a member of the ProtonPals.
Whether you're currently a patient at the PTC or a Proton Center Alumnus, you're invited.
In his presentation, Dave will share his experiences and answer these questions:
■What happens to my PSA after Proton Therapy is over?
■What warning signs should I be on the lookout for?
■How can I tell if I am low risk, intermediate risk or high risk? And risk for what?
■Are there any side effects from Proton Therapy after I've "rung the gong?"
■Do the treatments continue to work after my 39 sessions are done?
■Why is a Gleason score so important? What does it look like under a microscope?
■What is the difference between a Gleason 7 (4+3) and a Gleason 7 (3+4)?
■What's next after if the protons don't kill all the cancer? What are the stages?
■What does it look like under a microscope when the protons kill cancer?
■If Proton Therapy kills the cancer, why do some men have hormone therapy?
■Doesn't the high dose radiation we get at the PTC make hormone therapy obsolete?
■Since I've been on Lupron, I'm having ED, mood swings, hot flashes and I just feel like sitting in my recliner all day. Does this happen to anyone else?
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Doing Harm
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"Grasping at Straws"
In the US Preventive Services Task Force (USPSTF) Draft Recommendation Statement of October 11, 2011, the task force made some pretty "off-the-wall
ar guments" that haven't gotten much press coverage. Thus, the task force claimed that PSA screening causes both physical and psychological harm to patients.
The task force supported its psychological harm argument by citing two studies, but both measured psychological reactions to the biopsy following the PSA test, compared to a PSA test resulting in no biopsy. There, the control group was one with normal PSA results and no biopsy, while the other group consisted of men with abnormal PSA tests followed by a biopsy. Neither study supports the task force position.
Three recent studies in Europe and the USA (which the task force ignored) show the low psychological levels of concern relating to the PSA screening test. In a study of English patients published last year, Macefield et al reported that at the time the PSA test was taken, 6% of the patients tested showed high scores for confusion-bewilderment, 4.6% showed high scores for anger-hostility and tension-anxiety, 3.0% for fatigue-inertia, and 1.5% for depression-dejection. These are low levels indeed. In a study of Swedish patients, Carlsson et al showed that no anxiety was reported for 66% of men awaiting PSA results and 2% reported high levels of anxiety (but this 2% were men who had anxiety about almost everything.)
As for us Americans, a study published in 2004 suggests that the task force oversimplified the issue of psychological harm. A survey about the public's attitude toward screening for breast, colon, cervical and prostate cancer found the attitude to be "enthusiastic" about cancer screening. About 65% of respondents felt that a 55 year old man in average health not having a routine PSA test for prostate cancer was "irresponsible"; about 40% felt the same about an 80 year old man in average health who did not screen for prostate cancer.
More revealing about the psychological issue were the responses of those who had false positive tests which ultimately turned out to be negative. Although the experience of having the false positive ranged from "a little scary" to the "scariest time of my life", 102 out of 103 having a "pap test", 104 out of 108 having a mammography test and 10 out of 10 having a false positive PSA test answered "yes" to the question "Looking back on your experience, even though you had a result that required further testing, are you glad you had that test?" [31] The psychological portion of the draft discussion is incomplete and distorted by the omission of these three studies from the task force report.
Face it: If you're talking about psychological harm, more is done in an IRS audit than from a PSA test.
As for physical harm, everyone who has been tested knows that the PSA test is a screening test in which blood is drawn from a patient, nothing more. By itself this screening test causes no physical harm to patient (other than getting poked.) However, the task force cited as evidence of harm problems with biopsies and prostate cancer treatments that follow the PSA screening test. This argument fails because pain from biopsies or treatments gone awry existed before the PSA test was invented. Should the PSA test be discouraged or even outlawed, these unfortunate events will continue.
These arguments suggest a task force that was "grasping at straws" to find support for a position that is not supported either by the medical studies or the general public.
Dave Stevens
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Who has the Best Breakfast in Houston?
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Texas Monthly Picks
11.15.11 | 04:18 pm
Breakfast: It's the meal with the most important clichés. Or something. But when it comes to restaurants, breakfast often gets the shaft, replaced with the weekend's Back Street Cafe brunch.
Texas Monthly picked out the 40 best breakfast places in the December issue, and of course Houston has several spots
 | | Ouisie's Cheese Grits and Shrimp |
represented.
The list is divided by city and doesn't have any rankings, but a stunning full-page spread devoted to the eggs benedict at Ouisie's Table is probably a sign of something good. Owner Elouise Adams Jones began offering breakfast again this year (it was at the original Ouisie's but never before in the current iteration). Other newbies making it onto the list include Down House, praised for the local egg omelets, fried egg sandwich and pulled-pork hash, and a mention for Pondicheri's morning thali.
Of course, the list wouldn't be complete without a couple of standards, likeThe Breakfast Klub and its famous waffles and wings, Avalon Diner's pigs in a blanket and migas at Merida in the East End.
There are a couple of surprises, too, including Gulfgate's Dot Coffee Shop (I do love that place, but it's mostly because I re-enact scenes fromReality Bites whenever I'm there), the Urban Harvest Farmers Market at Eastside (an unorthodox choice, but I can't argue with delicious) and venison sausage at Goode Company Taqueria. Houston's Katz Coffee also gets a mention as a local roast to look for around town.
What's your favorite breakfast spot in town?
MY FAVORITE: The Dot Coffee Shop is a Houston original, and a throwback to the great coffee shops, American style diners and truck stops. Dot opened in 1967 as was the first of Pappas restaurants. The doors are never locked and you can get breakfast 24 hours a day, hamburgers and the best chicken fried steak. You can people watch in relative safety in the wee morning hours because there's usually a cruiser or two in the parking lot as Houston's finest eat there. They don't list calorie counts - the numbers would be too shocking - and as you enter you're face with a display case full of pies. Ah, I can see the coconut cream pie now.
- jelandry November 2011
Mrs. Jakub's Favorite: This week I learned that one of the Pals had what she considered the best Sunday brunches in the area, maybe the region. Capt. Joe and the Mrs took a week end in Galveston to get away from all the tribulations around the Medical Center and for brunch found their way to Bernado's in Galveston. Located in the Hotel Galvez and Spa (Wyndham) it is right on Galveston Beach. It's a long standing tradition and I believe since Mrs. Jakub is a full time travel agent, she knows what she's talking about.
Mr. Foodie's (Drew Cox) Favorite: The Breakfast Klub only you'll have to wait in line. Check out the menu - Katfish and Grits for breakfast.
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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.
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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