ProtonPals

Dear ProtonPal,

Here’s wishing you a Happy Easter and continued good health, along with a reminder that there will be a support group meeting next week. It will be on Wednesday March 26th at 1:00 PM in the Proton Therapy Center’s first floor conference room. The featured speaker this month will be Mary K. Hughes, a Psychiatric Clinic Nurse Specialist who specializes on issues related to sexual dysfunction and intimacy issues.The meeting notice flyer is on the web site under the topic General News. 

Also since our last note Ban and I have received many notes from you and we’ve have worked diligently over the past weeks to write and update the "one page" summaries.  Although they’ve been on the web site this is the first general circulation for some of the summaries.   

As we reviewed the comments we receive, we continue to be grateful that you are doing so well and that this technology was avaliable to us.  While there are some who are in their post treatment recovery and waiting for the testosterone to increase or the physical stamina to return, we believe these reports confirm that the treatments we were given are very precise and well tolerated so as to cause no serious side effects.

We are attaching updated copies of Energy Level, Erectile Dysfunction with Hormonal Treatment, ED without Hormonal Treatment, Urinary Dysfunction and PSA Post Treatment Trends. 

Our ProtonPals web site is continually being updated and improving so check it out. There are two new links to other proton internet sites, http://www.ricksprostatecancer.blogspot.com/  and http://health.groups.yahoo.com/group/protoninfo/ who have found the ProtonPals site. Rick Otey (MPRI) and Fuller "Sonny" Jones (LLUC) and they have featured our web site in one of their notes to their membership. As some of you know I’ve kept the visibility of the site below the horizon of the search engines for several reasons;  1) it was under construction and 2) I’d like to shield the comments and e-mail addresses from searches used by spamers. We’re just about ready to reveal the site to the search engine internet crawlers (Google calls theirs Googlebot and Yahoo Slurp) who will find us in a day or so and make it easier for newly diagnosed patients to find us when they search the internet. Providing information to new PC patients is one of our main reason for being.

The membership has grown to almost 200 and during March the web site is averaging 22 visits and 769 hits per day. Some of these visits come about in the development of the site.   If you have your own mailing list of friends who have been treated at MDACC Proton Therapy Center, please let them know of the ProtonPals site and encourage them to join. http://protonpals.net .     

On this Easter Sunday morning, I’m also grateful that Ban joined me to become very active in development of the web log and share his work with  you, as I am thankful for all who have joined the group and supported us by providing your anecdotes.  Also want to thank the leadership group for helping me bring this web site and news letters to you.   

In gratitude,

Joe Landry, PalJoe - April 2007

Ban Capron, PalBan - February 2008

Tags: News by paljoe
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Our ProtonPals web site was featured in web log that I’ve recently found called Rick’s Prostate Cancer Blog.  Rick Otey, on hearing about our web site from his friend Chuck, contacted me about some information about M. D. Anderson.  Chuck started his treatment at the MDACC PTC in early March.

This morning Rick wrote about The First Six Steps to Take When You Are Diagnosed.  What to do when your doctor utters the four words that will forever change your life: “you have prostate cancer.”  But hopefully it won’t be like what I experienced, i.e. when the nurse calls to give you the news but can’t put it in any context, except make an appointment and come in for a consult.  Thanks Rick.

 http://www.ricksprostatecancer.blogspot.com:80/

The author of the note on the six steps is Fuller Jones who presented them in a reply to the wife of a newly diagnosed husband.  Fuller was treated some years back by the Loma Linda Center and owns a Yahoo forum at the link listed below. Check out his site for more information and support.  Thanks Fuller.

http://www.groups.yahoo.com/group/protoninfo.

PalJoe   3/12/2008

Tags: Support, Resources, News by paljoe
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The March support group meeting will be held on Wednesday, March 26th at the Proton Therapy Center Room 2008 at 1 p.m.  The featured speaker will be Mary Hughes, a Psychiatric Clinic Nurse Specialist who specializes on issues related to sexual dysfunction and intimacy issues - especially as it relates to cancer and treatment. The topic, “You’ve Lost that Loving Feelin”.    She is an excellent speaker and therapist - so be sure to bring your questions or send them into Sloane Caskey. srcaskey@mdanderson.org

Click on this link to see to see the flyer about the March Support Group Meeting .

Tags: News by paljoe
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The regular support group meeting was held at the M.D. Anderson Cancer Center (MDACC) Proton Therapy Center on Wed 2/27/2008.  Lorianne Classen, a specialist from the Patient Education group presented a “New Patient/Family Orientation Class” to the group and called our attention to the vast programs and resources at the center.  Those resources we may need and those we simply want to know about.  

The keepers or take-aways, as I like to call them are:

• The MDA is very large organization and has a vast number of places where you “interface” or experience the system and this presentation provides and introduction to them.  From locations of clinics, parking lots, support teams, restaurants, transportation, travel, and accomodations to the various programs and clinics at the center.
• The MDA handles 4000 outpatient appointments per day.  A visit to the Mays Clinic for your follow up PSA tests will demonstrate the sheer number of patients being handled, and courteously and efficiently I’d like to add.
• There are many ways to access the Internet to get more information about the center and this presentation will help you find your way around.
• One of the valuable features of the Internet web site is the one dedicated to you myMDAnderson   - https://my.mdanderson.org/   It’s a secure site that I’ve used it to confirm appointments, check billing and to send messages.

Attached you’ll find the 4 page presentation in PDF format. Patient Introduction. The use of portable data format (PDF) seems to be the practice at MDACC and I use it also since it’s more compact than other formats for documents and presentations and should be more readily readable by a wide variety of computers.

paljoe  3/4/2008

Tags: News, Meetings by paljoe
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