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ProtonPals e Newsletter
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August 2009
http://protonpals.net
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Greetings!
Welcome to the ProtonPals and thank you for subscribing to our newsletter and visiting our website. Tell your friends and families about us. The mission of the ProtonPals is to provide educationaI opportunities for the general public, patients and health professionals related to the prevelance of prostate cancer, the importance of early detection, and the cure advantages of proton therapy. I think we should all take credit from the following facts - In addition to the 400 subscribers to the newsletter, we've have any where from 400 to 550 unique visitors to the ProtonPals website per day from 20 countries. The countries with the highest number of unique visitors to our web site are Germany, Netherlands, United Arab Emirates, Canada, Great Britain, Hong Kong and India in that order. This month we've had visitors from Iran and Slovenia as well as other Eastern European nations. As part of our mission to reach more men and their families we also decided to join the Anderson Network and attend the September 10-12 conference being held in Houston. If you live in Houston or would like to visit Houston in September, I hope I can convince you that it would be interesting to join Marcia and I as we host an exhibitors table at the conference along with 20 other cancer survivor organizations. There will be some 500 caregivers and patients who will be attending and if you check the program out you'll see that there are many interesting nationally known speakers, entertainers and breakout sessions. During the planning for this conference we convinced Dr. Lee to speak in one of the breakout sessions on Sat the 12th and I hope you'll join us in hearing him speak about the proton therapy. Patient and Caregiver ConferenceWhen you attend I think you'd find it rewarding to volunteer for a time slot at the ProtonPals table. There you'll be able to speak with the visitors at the conference about your experience with the Proton Center, in effect relay your "My Journey" for them. The cost of the conference is low, $75 for all sessions and meals including a banquet on Friday night, and if you'd like to stay at the Marriott the room rates for conference attendees are only $78. Again, thank you. With your feedback and help we can make the newsletter and the web site interesting and valuable, not only for our membership but for the global brotherhood of men who face this malignancy. Remember " You can never pay back; but you can always pay forward.", Woody Hayes
Your Pals,
Joe Landry, Ban Capron, and Peter Taaffe
ProtonPals, Ltd.
PS: The previous newsletters are now archived and with this feature this means you can share them with your Facebook friends and your Twitter network. The SHARE icon is in the footer of the newsletter.
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Living With, Through, and Beyond Cancer
Anderson Network 21st Annual Caregiver Conference
Article Sub
This year's conference theme, "The Strength
Within," acknowledges the inner resources and grace cancer patients and
survivors like our ProtonPals find essential for their journey and recovery. It
also offers participants the opportunity to learn more about the issues
cancer survivors face, meet and share with others, take wellness
classes and have fun.
Speakers include NBC co-anchor and breast cancer survivor Hoda Kotb,
M. D. Anderson clinical professor and cancer survivor Martin Raber,
M.D., and humorist Charles Petty, Ph.D. The popular medical panel on
Saturday morning will be led by M. D. Anderson President John
Mendelsohn, M.D. The conference is open to all cancer patients, their families and caregivers, regardless of where treatment has been received. A sampling of the nearly two dozen conference breakout sessions includes: Navigating the world of health insurance
Dermatology issues
Fear of recurrence
Young adult survivors
Proton therapy
Caregiver issues
As
always, a number of complementary and integrative modalities are
offered by Place ... of wellness: tai chi, qigong, music therapy,
aromatherapy, journaling and safe massage techniques. In a Saturday afternoon breakout session, Dr. Andrew Lee, Director of the Proton Therapy Center will cover the
basic elements of proton therapy delivery and how it can be used in
various disease sites such as the prostate, brain, lung and pediatric
cancers. Thanks
to M. D. Anderson, conference sponsors and individual donors, the cost
of the conference is just $75, which includes all meals, activities and
self-parking. Registration is available online until Sept. 4. For more information or to register, visit the Web site at Conference Registration or call 713-792-2553 (Houston) or 800-345-6324 (toll-free). Anderson
Network, an organization with support and educational services for
patients/survivors, their families and caregivers, is a program of the
Department of Volunteer Services.
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Am I Cured? Article Subtitle Starting with his "My Journey" which many of you receive when you check into the Proton Center, Ban has written most of the "one pagers" you'll find on the web site and we feature his photo slide album. We keep up with how you're doing from the information you send us. The " How Do I Know That I Am Cured" paper was updated earlier this month to reflect that. We're finding that as expected and in Bob Marckini's (ProtonBob's curve) the patients at Loma Linda, the PSA serum levels taken every 3 month, or 6 months or one year tests continues to fall and level off until around 18 months. I'm waiting for my one year check up in October where I hope I find that it's still at 0.3 ng/ml or lower. I'll be at my 2 1/2 year aniversary.
Please read more on our web site and there you'll see how PSA changes for men who've had the ADT (Lupron) treatment and for those who have not. It would be interesting to know how the testosterone levels recover after the shots are completed and if you would like to share this please let Ban know.
How Do I Know That I Am Cured?
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Pencil Beam Proton Machine
Article Subtitle
Houston Style Magazine Article An article in Houston's Style magazine on the newest tool in the radiation oncology department at the M.D.
Anderson Clinic and the Proton Therapy Center. Since June 2006 over a thousand patients have been treated with the
very advanced mode of proton therapy but more recently a new "gantry" joined the weapons cache at the center when pencil beam therapy was
brought into service. Over 40 patients have been treated with a more
precise treatment - pencil beam therapy "It is the radiation oncologist's mantra. Deliver the maximum dose of radiation to the malignant tumor, while limiting damage to healthy surrounding tissue. In proton therapy, achieving this balance is equally one part particles and another part contriving the particles, once accelerated to nearly the speed of light, to mimic the shape of a tumor with sub-millimeter precision."
Dr. Jim Cox 
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More News on the Fireman's Fireman
You are the General and your Body is the Battlefield
Lorenzo Abundiz finished his treatment at the proton center in June and several of his fellow Houston firefighters joined him in celebration of this most recent milestone in his notable fight with fires and cancer. Lorenzo or "Mongo" as he is called was hosted by the one of the local fireman's organization during his stay in Houston. I met him at the Center and heard a bit of his story. The Houston TV news cameras were there and these clips provide a good summary. Lorenzo Abundiz at the Proton Center Click2Houston's article on Lorenzo's graduation. Click 2 Houston AriticleNow he's coming back with the Mission of Honor and Hope to Houston on Sept 20th. A crew is starting in Los Angles on September 12 will travel acoss the United States and Canada. This first took place from June 13 to July 15, 2008, marked the beginning of Code 3 for a Cure. What began as a one-time journey across the country has since developed into a nonprofit foundation. The Annual Mission continues on as a tradition of the Foundation to honor and remember those firefighters who have lost their lives to cancer. The 2009 mission, scheduled to begin on September 14, is expected to take approximately eight weeks and will include Canada in our efforts to unite with the Canadian firefighters in the war against cancer. The mission will be accomplished by firefighter cancer survivors who will share their stories and experiences with other firefighters along the journey. The crew will start from California and visit fire departments throughout the United States and Canada. Any fire department interested in hosting the 2009 mission can contact us. Being a host department would involve an approximate three-hour visit up to an overnight stay at the department, dependent upon what is worked out in advance between the department and the Foundation. Annual Mission of Hope and Honor
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ProtonPals will be represented at the Conference
The ProtonPals will have a table as an exhibitor at the Anderson Conference. We'll be there to answer guestions and to network with other survivor organizations. I'll be there with information, the web site on display and a PowerPoint presentations for those who might prefer to see a photo journal of the Proton Center. Please consder attending the Survivors Conference as well as volunteering for a slot help me at the ProtonPals outreach and exhibitors table.
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National Panel Stresses Early Detection
Arti.cle Subtitle
NCCN Stresses Importance of PSA Testing in High-Risk Men
The National Comprehensive Cancer Network (NCCN) recently updated the NCCN Guidelines for Prostate Cancer Early Detection incorporating the results of the recent ERSPC trial that assessed the benefit of PSA screening. The NCCN Guidelines contend that PSA screening does save lives when performed intelligently in men at high-risk of developing the disease.Stresses Early Detection NCCN Article
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Get a Free Screening for Prostate Cancer Awareness Month
Article Subtitle
Prostate cancer if caught early is easier to treat and nearly 100% of those treated survive. Following the new NCCN guidelines Memorial Herman Hospital System is hosting free screenings at 8 centers in Houston starting September 19 through October 3rd.
You should make an appointment as slots are limited. Memorial Hermann Screenings Once you have the results of your tests and want to follow up because you suspect you may have cancer please follow up with the M.D. Anderson Proton Therapy Center.
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Are Americans Correct in Sneering at the British NHS ?
Article Subtitle
The British journalist, Steven Glover, deeply resents Americans sneering and using the National Health Service in England as a punching bag but admits there's some truth to what is being said. Actually I think there's a lot of truth and Ted Kennedy, if he lived in England would not have been eligible for proton therapy for his brain tumor since he's 77. I'm taking 3 paragraphs from Mr. Glover's article in the context of health care discussions that are currently going on and I think that it is in the scope of the ProtonPals mission in advocating effective care for prostate cancer.
"In treating almost every cancer, America apparently does better than Britain,
sometimes appreciably so. According to a study in Lancet Oncology last year,
91.9 per cent of American men with prostate cancer were still alive after five
years, compared with only 51.1per cent in Britain.
The same publication suggests that 90.1 per cent of women in the U.S.
diagnosed with breast cancer between 2000 and 2002 survived for at least five
years, as against 77.8 per cent in Britain.
So it goes on. Overall the outcome for cancer patients is better in America
than in this country. So, too, it is for victims of heart attacks, though the
difference is less marked."
From Steven Glover of the Daily Mail Truth that Hurts
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Reserve Your Room Now
Article Subtitle
I just made a room reservation at the Marriott for the Anderson Network Caregivers Conference on Sept 10, 11 and 12th. The conference coordinators have done a great job and as conference attendees we can get a rate of $79 a night. Houston Marriott WestchaseMarcia and I are staying there for convenience and also as a get away. We're going to be working a bit on the ProtonPals exhibitors table. For those of you who travel a lot you probably don't want to see the inside of a hotel just yet but this looks to be special. I've been to conferences and banquets there before but it looks to be recently renovated and the rooms look great. Take a look at the facility and see if you if this won't entice you to join Marcia and I and other ProtonPals who are looking for an excuse to come to Houston.
 Call the 1 888 236-2427 number for reservations and mention that you will be joining the MDACC Conference. Marriott Westchase ReservationsLooking forward to seeing you there.
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Brave Young Fighters - Victoria, Darius and Taylor
Article Subtitle
Here's an exceptional and moving six minute video about Proton Therapy for Pediatric Patients at the M.D. Anderson Cancer Center Proton Therapy Center. A young star named Darius takes you through the complete proton therapy process while interviewing Victoria and Taylor, patients of the proton center. Brave Young Survivors
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Screening Works - Prostate Cancer Death Rate Drops 32.5 Percent in 10 Years
Article Subtitle Here's a headline I've been waiting to see every since the controversy about PSA testing came up this spring. The organization ZERO The Project to End Prostate Cancer wrote the following at their web site:
"Prostate
cancer death rates dropped 32.5 percent in 10 years, according to new
reports, possibly as a result of a dramatic increase in early
detection. The mortality rate for African-American men is the lowest
since 1977, but it is still 2.36 times the rate for Caucasian men."
"If the disease is caught early, nearly 100 percent of men are still alive five years after diagnosis, but if the cancer has already spread to a distant location, the five-year survival rate is only 34 percent. Since 1993, the percentage of men with distant prostate cancer at the time of diagnosis has dropped by 40 percent."
The PSA test, introduced in the mid 80s, spurred an increase in prostate cancer diagnoses peaking at around 1992. The rapid increase in early detection and subsequent drop in the death rate since 1993 could be attributed to widespread use of the PSA test, adding to the growing body of evidence the PSA test saves lives.
Screening Works: Prostate Cancer Deaths Drop to Lowest Rate Ever by Antonia Scatton | NPCC | 09.18.2006
As a footnote: Although it looks like there's a lot of good being done by this organization and this site, I almost pulled the article since proton therapy is not mentioned as a treatment option and to me that borders on violating the "do no harm" oath.
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Frequently Asked Questions are Updated
Article Subtitle
On Sunday morning when I opened the mail in preparation for work on the August newsletter, I found a gift. A note from Robert Spencer on frequently asked questions (FAQ). It was a gift because it was sent unsolicited and without your feedback and comments the ProtonPals newsletter and web site would not exist. If you'll recall Robert wrote his "My Journey" which I published last month. He joined Ban Capron, and Dr. Terry Lavy from Arkansas describing their experience at the Proton Therapy Center. Forgive me if I've left someone out who's sent me their story. Please remind me and send me an update joe landry This FAQ is about diet, what to eat and not eat when undergoing Proton Radiation Therapy. I have it on the web site (read more at FAQ ) and it complements the "one pager" about bowel changes. Side Effects |
About ProtonPals
Thank you for subscribing to the website and supporting the organization. You'll receive the monthly newsletter around the 15th and it will include notice of the monthly support group meetings held at M.D. Anderson Cancer Center Proton Therapy Center. In addition we'll may send out one additional email of special events or news that are of interest to the group. 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. As a former patient we'd 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 charity
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