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 Friend-to-Friend ~ Pal-to-Pal ~ Patient-to-Patient
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| ProtonPals Electronic Newsletter |
September 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. This is a short newsletter since timing is all important. I wanted to call your attention to three items. 1) The Anderson Patient and Caregiver Conference is being held this week starting Thus.( the 10, 11, 12th). When you attend please visit Marcia and me in the exhibitors' area as we host a ProtonPals table. Also definitely attend Dr. A. Lee's talk on Saturday right after lunch. We'll be in an exhibition area where there will be 20 some cancer survivor organizations and 2 pharmaceutical companies. There usually are about some 400 attendees and if you check the program out you'll see that there are many interesting nationally known speakers, entertainers and breakout sessions. Patient and Caregiver Conference 2) We continue to update the one pagers or our library as we get new information from you and reflect them on the web site. Ban has updated three papers in our "archives". These are a) Am I Cured?" Am I Cured? New PSA results, b) My Journey by Ban Capron My Journey and c) My Journey Condensed. My Journey Condensed Please visit the site. We've assembled a very good collection of "Journeys" by Ban, Terry Lavy, and Robert Spencer. They all start with the same premise - Take Charge, you're the General and your body and the healthcare industry are your battlefield. You'll see how each learned about about proton therapy (not their urologist) and made the choice. 3) The Center will start up the monthly support group meetings organized by Sloane Caskey, Radiation Oncology Social Workers on Thursday, September 24th, at 1 PM at the Proton Therapy Center. 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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New Features on the Newsletter
There are three new features in the newsletter that you may have overlooked in the August newsletter, so I thought I'd call your attention to them right now.
- If you have some friends who you think would like to know more about proton therapy and the experiences reflected on the site you can forward the Forward Email to their addresses. Their addresses will be respected and it's up to him/her whether they join and subscribe to the newsletter.
- If you're participating with some of the new social networking technology have a Facebook group or have Twitter pals who follow you; and they would find this newsletter appropriate and interesting you can share this with them by selecting the SHARE link in the footer of the newsletter. It leads to several choices of social networks where you select the one you below to, login to it, and the link to the archived newsletters are automatically inserted in your communication field.
- If you'd like to help you can let us know how your doing, this is first and foremost. However if find you'd like to donate a few dollars to help defray the costs of the internet subscription and education outreach, we'd would appreciate it.
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Am I Cured? ArtiNewly Updated One Pagersc
le Subtitle Starting in June 2007 and going on in 2008 when he journaled his walk with prostate cancer and wrote "My Journey", for his friends, Ban Capron has written many "one pagers" you'll find on the web site. As a new patient at the center you probably received a copy of the paper his "My Journey". We also featured his photo slide album on the site.
Ban, Peter and I strive to keep up with how you're doing from the information you send us as well as reflecting our own experiences. The " How Do I Know That I Am Cured" paper was updated earlier in Auguest month to reflect PSA levels at 3, 6, 12, 18, 24 months. We're finding that the PSA levels drop as others from Loma Linda have found out and have been published in many publications. Not in a straight line but gradually going to a low level. I'm waiting for my 30 month check up in October where I hope I find that it's still at 0.3 ng/ml or lower..
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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Update to Dr. Terry's My Journey
Article Subtitle
Dr. Terry Lavy, Professor Emiritus of the University of Arkansas responded to a note from me and has generously updated his "My Journey". He's offered to talk to anyone who would like to contact him at Terry's My Journey.
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Lost That Lovin' Feelin' ?
Mary Hughes returns to the Proton Center Support Group Meeting
After a summer vacation the Proton Center Support group is starting up again and the first meeting of the fall will be held September 24, and will continue on the fourth Thursday of every month. Mary Hughes, a Clinical Nurse Specialist will be the featured speaker. Mary received an outstanding reception the last time she spoke to our group. Mary has been with M.D. Anderson for quite a few years and has many awards honoring her skills and work over the years and I can attested to her abilities based on the personal contacts I've had with her. Here's her biography. This time she will speak about "Lost That Lovin' Feelin'" .
Mary K. Hughes, RN, CNS, has been a clinical nurse specialist in
the psychiatry department at The University of Texas MD Anderson Cancer
Center since 1990. She helps people diagnosed with cancer who have
depression, anxiety or other conditions that require medication or
therapy. She also serves on the clinical faculty of Texas Woman's
University in Houston and The University of Texas Houston School of
Nursing. Ms. Hughes has won numerous awards for her work with
quality-of-life issues for people with cancer, including the 2007
Supportive Care Award from the Oncology Nursing Society. She speaks
internationally, nationally and locally on quality-of-life issues that
affect people diagnosed with cancer.
Access Meeting Flyer
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Annual Mission of Hope and Honor will be in Houston in September
Lorenzo Abundiz, the Fireman's Fireman finished his treatment at the Proton Center in June and now he's coming
back to Houston with the Mission of Honor and Hope. A
crew is starting from the Los Angeles area, Griffith Park, on September 14 will travel across the
United States and Canada in a brand new Sutphen fire engine, will arrive in Houston on Sunday September 20th. What began last year as a
one-time journey across the country has since developed into a
nonprofit foundation to help those with cancer. 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 itinerary is posted on the foundation's site Mission of Hope and Honor and could be in your town between the 14th and November 21st. | |
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All Men At Risk For Prostate Cancer
An Article by a Radiation Oncologist on one of the Leading Cause of Men's Deathsicle Subtitle A relatively balanced article on prostate cancer and screening guidelines. But it's yet another one that promotes surgery in younger men and does not find the advantages of proton therapy. She does speak about the use of Androgen Deprivation Therapy (ADT or Lupron shots) in combination with radiation. Take a look at the T Shirt the guy is wearing. Real Men Don't Fear the Finger
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PSA Screening Caused 1 Million Unnecessary PCa Diagnoses
Don't Throw Out the Baby with the Bathwater
Are you like me and feel like the world is changing very rapidly and not for the better? And a new form of logic is being accepted in our culture? Start reading this article and see if you're not convinced that you are no longer living in an evidence based world. Especially when you see headlines such as this For one life saved more than 20 are over diagnosed and the conclusion is.... Well all is not lost and the writer does quote one of the M.D. Anderson doctors as follows
Christopher J. Logothetis, MD, a professor and chairman of the Department of Genitourinary Medical Oncology at the University of Texas M.D. Anderson Cancer Center, in Houston, agrees that doctors "are overdiagnosing and overtreating prostate cancer in the PSA screening era."
The real issue is not the PSA test per se, but how best to apply its results, he says.
"We need to develop a strategy by which we take the good things from screening and protect from the bad things," Dr. Logothetis says. "Don't throw the baby out with the bathwater."
If a PSA test result and a subsequent biopsy do indicate cancer, "we need to know if it is a cancer that possesses the potential to be lethal," he says. Some prostate tumors are slow-growing and do not need treatment.
"Screening needs to be continued, but patients need to be informed that not all prostate cancers require an intervention," Dr. Logothetis explains. "A high PSA doesn't mean you have cancer, and if you do, it does not [necessarily] mean it needs treatment." Read on
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Hooray! Ten Year Anniversary Cancer Free
Posted by Jim Tuggey who was treated at Loma Linda and runs a web site (a blog). Jim Tuggey's Blog
"These are the facts:- Completed Proton Treatment for Prostate cancer on August 27, 1999.
- For the last six years my PSA has stabilized at 0.1.
- I've been here for the birth of two new Granddaughters.
- My Doctor, who is a General Practitioner, handles my PSA at annual physicals, and I have never had to return to my Urologist who diagnosed my Prostate Cancer.
- I'll be 80 years old in February 2010 and spend my spare time telling other men and women about Protons."
Contratulations Jim and much continued good health and low PSA readings.
Joe Landry
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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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