Ban's article points out the value of sharing and personal referrals but along with that comes the importance of the internet and what it does to empower and educate the patient. One of my friends, who I had not met face to face but knew as a pen-pal on an investment forum enrolled in the Proton Therapy Center for treatment. He based his decision to come for a consult on what information you're shared with us, what he read about the treatment on the web-site and from e-mailing exchanges with Dr. Lee, the Director of the Proton Therapy Center. The journal is stored on our web-site in PDF form.

There are many humorous and touching parts in this 15 page journal that will have you laughing out loud. Mr. A. tells of some of the locker (gown) room humor and in a serious note he also describes how a visitor sees Houston and how a patient experiences M.D. Anderson treatment. Here are a few tag lines that I hope will interest you and lead you to read his journal.

• The Frequently Ask Questions (FAQ) - added information on supplements, nutrition and how cells are affected by the proton beam.
  
• My Journey - Condensed and My Journey have been updated to reflect new follow up results from several ProtonPals who've written us.
  
• A My Journey Slide Show has been repackaged for easy viewing, captioned extensively and is a companion to the My Journeys.
  
• A Presentation Slide Show was organized for those of you who want to give a talk, tell your story to your friends, social or church groups. Word of mouth referrals is one of the Proton Centers best advertisements. Write me if you want a copy on a DVD.
  
• Contact Names is one of the most valuable services ProtonPals provides. The site now has two new volunteers. Scott, who hails from Miami, finished treatment last fall and been very helpful to the ProtonPals group handling several calls from newly diagnosed men. The other man, Ted, is a great gentlemen from New York City who has a gift unique to the Pals.  He's bilingual - speaks Mandarin. He's a big proponent of M. D. Anderson Cancer Center over the N.Y. hospitals (Cornell and Columbia) and will help you by taking phone calls or answering emails from newly diagnosed patients in either language.
  
• Am I Cured? has been updated to show new PSA results from Pals who have written to us.
  
• The ED General Discussion has been updated and reviewed. It reflects one of the new practices being used at the Center. ED with Hormonal Therapy has new anecdotes from Pals who have been treated over the past three years.
  
• One of my pen-pals on an investment forum ended up being diagnosed with prostate cancer. In researching his options he spoke to us and used our site, along with emailing the oncologists at the Proton Center. He chose the Proton Center after consulting with Dr. Lee. He summarized his journey while here and called it The Odyssey. You'll LOL (laugh out loud) and the next time you're at the Houston Zoo check to see if Bob is back in his cage for Mr. A.
  
• Three friends of the ProtonPals - Joe, Larry and Hugh (Mr.X) were known as the Three Amigos. Last year they made an important financial contribution that got us on our way with this newsletter service. On graduation day, I showed up with a camera and a Tres Leches cake (a Tex Mex tradition) for their graduations, took photos and have them here. Three Amigos 
• Our newest section, foretelling of things to come, holds successful insurance appeal letters. Articles and Papers under Misc. is a place holder for now and will be replaced by an insurance strategy section. 
• A Slide Show album from the seminar held at the Light and Salt community center on March 6th where Dr. Joe Chang and I spoke to a Chinese American community about Proton Therapy. Thanks to Dr. Helen Sun for providing the photos.
  

WANT TO HELP?  One way to help Ban, Peter, me and the Proton Center is to give forward and you can do this by letting us know how you're doing. Write to us and tell us your "Lessons Learned" and what you're doing to stay healthy. Tell us how you organized the social get togethers and the dinner outings while you were in Houston. One way of giving forward also is to invite Tai Ly to those gatherings. Invite me and Peter and our wives since we live in Houston. We'll show up and get to meet you face to face.

 

  An article in Health News brought home the realization that you should not hold anything back when you see your oncologist. Please tell him or her everything you're taking. In this article published in Radiation Oncology in March the researchers suggested (their word) that during radiation treatment prostate specific dietary supplements should not be taken since they increase the radio sensitivity of some prostate cells, and that could lead to normal tissue complications. 

We write almost exclusively about prostate cancer treatment on the ProtonPals newsletter and web-site because that's what we had and know intimately - Prostate cancer patients writing for other prostate cancer patients.

But as you know the Center treats many other kinds of tumors. In one segment of the Center more pediatric tumor patients are treated here than in any other center in the world. In another part of the Proton Center a rather young Bill was treated for esophageal cancer. His daughter Erin lovingly follows his illness and treatment on a blog created just for him. Here she celebrates Bill's graduation as he completes his treatment and rings the gong.  Daughter Erin's Blog  and the wall plaque says

"The ringing of this Gong symbolizes a restoration of balance, harmony, and life energy"

I borrowed Bill's photo from the blog since you may know him and would want to wish him well.  Best of health to you Bill as you buff up.

Successful Insurance Appeals

The first letter is accompanied by an offer of help from Carol P. a woman I met on the ProtonInfo - Protons for Prostate Cancer site. Carol has agreed to help us by sharing with the ProtonPals her successful appeal she crafted for her husband last fall. It's 42 pages long and filled with an approach and the evidence you might need if you get turned down. She will be glad to help you one-on-one. If you'd like to contact her, let me know and I'll put you in touch with her. The letter is stored on the ProtonPals web site in PDF format  Successful appeal Letter 1.

Carol wrote that as one of her lessons learned she would advise the following:

"See an attorney early in the process to explain procedures, identify important dates and deadlines, explore options, and press your insurance company for required information. Your legal partner can assist in any capacity you wish-from developing strategy and coaching your progress, to fully handling all issues."

There's a Second Successful Appeal Letter 2 sent to us by Fuller Jones, retired rocket scientist from the Florida cape who moderates a blog called ProtonInfo - Protons for Prostate Cancer . You'll have to join to write messages and to access the files on the site.

Write me at jelandry@sbcglobal.net and I'll put you in touch with Carol by forwarding your letter to her.

Tamsulosin HCL the active ingredient in Flomax, is now available as a generic prescription as a result of patent settlements last fall. FDA approved it on March 3 and as a result, Medco, our family prescription provider sent us a note saying they are providing both 0.2 mg and 0.4 mg generic Flomax for a significant reduction in costs. The low dosage, 0.2 mg, was not available before and it maybe all you need on a daily basis.

Bill Catalona's video Overdetection is a Small Issue is a critical review of the research and reporting in the area of PSA screening. His video points out that there are many assumptions in the reported studies that are widely quoted but invalid and defy logic.

"If the cancer does not kill you, it is "overdetected" (e.g., 16% of screen-detected cancers were lethal; therefore, the overdetection rate was considered to be 84%." Maurice McGregor

 
"Excess incidence rate does not mean excessive overdetection. It is not over detection if increase in incidence is followed by a decrease in mortality, as in the US where data shows a 40% decrease in mortality from 1991-2006."

"Not all low-volume low grade cancers are harmless. Researchers find this is NOT true with long-term follow-up."

Wow, even from World Health Organization! - "The trends in prostate cancer mortality rates in examined countries suggest that PSA screening may be effective in reducing mortality from prostate cancer."
 
And from Patrick C. Walsh, M.D.
"If you don't wear a seat belt or go to the dentist or doctor for a checkup, and you are not concerned about dying of prostate cancer, do not undergo PSA testing.

On the other hand, if you are a healthy man aged ~ 40 to 69 who does not want to die of prostate cancer, the ERSPC provides conclusive evidence that PSA testing can save your life."    ERSPC is European Randomized Study of Screening for Prostate Cancer.

National Association for Proton Therapy has several new articles in the forum, which are responding to national articles in various media, like AARP magazine, NPR radio, other
Flogging Technology Scapegoats is Doomed to Fail 

Pals, I try to stay away from things that some would consider politically incorrect but I can't help myself when I see some strange logic; logic can could just as easily be applied when dealing with toddlers. But in this report, published by the Department of Health and Human Services, you'll find what I can think of no more effective way of stifling medical technology than to discourage investment early in it's development cycle. How better to kill innovation than to come out with a report that labels the therapy as unproven and notes that hospitals are considering the use of technologies that have not been cleared by regulators. Regulations crafted by folks with a very low approval rating -16% of Americans. Mother knows best, right?
You might consider the advice my Cajun (Ville Platte La.) cousin gives out -  "A passive patient is a dead patient."  Be active, be informed and be empowered

About ProtonPals 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

O