ProtonPals

From the land of Grant Wood (American Gothic) and Johnny Carson, Leon Synder wrote to us about his results.  Congratulations and our wish for continued good health.   

Hi Joe,

I went for my first check up on October 1st.  My PSA was .1   My PSA was 5.8 before Proton Radiation.  I was faced with a lot of the same choices that others have mentioned before I decided to come to M.D. Anderson for treatment.  My doctor wanted to do surgery and follow up with regular radiation.  Then, I was offered the “seeds implant” or do nothing for a year.   My wife  then started researching on the Internet and read about Proton Radiation.  I called them several times and decided to come to M.D. Anderson.  I finished treatment on June 1, 2007.  I did have the hormone treatment also along with Proton.  We cannot say enough about Tai Ly.  She encouraged us and helped get everything moving to get me in.  We stopped to see her when I was back in Houston, but she had left that afternoon.

I am feeling good.  I was tired the first couple months when I  came home and started farming again.    I live in Iowa.  It was a commitment to come to Houston for over two months, but it was well worth it.  We met so many wonderful people while we were there.  You can publish my name, address, and e-mail if anyone has any questions.  Thank you.
Leon and Janice Snyder
3643 Karr Avenue
Wall Lake, Iowa 51466

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We received great news from three ProtonPals that I’m including in a starting newsletter.

Wylie P.  copied us on his letter to Dr. Cox, thanking him and his staff for all the support they provide at the center and highlights the center tour.   I recommend that all prospective patients or patients undergoing treatment take the tour.  You’ll get additional insights as to how the treatments plans are developed and you get a look backstage at the 200 ton gantry.  

We have great report from Larry King especially compared to his two friends who were treated via other methods. Larry would like everyone on the list to have his address and phone number. Contact him to chat or refer your friends they want to ask about the treatment.

Julio reports that he continues to attend the support group and has no side effects from the treatment especially in physical activity.  He works out for two hours daily.

See the newsletter attached below.  Proton Pal Newsletter October 23, 2007

In gratitude
Joe Landry
April 2007 Graduate

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I love the idea of the web site for the Proton Therapy people.  I am scheduled to see Dr. Lee on Monday and will probably have my first post treatment PSA test.  I did not seem to have any side effects during/after the treatment and continued playing tennis and working out thoughout my treatment.  Because I chose to have the Hormone treatment in conjunction with the Proton Therepy, I ended up gaining about 10 lbs and am slowly trying to shed them–evidently the 10 pound gain is pretty typical and the effects should start to diminish starting this month and ending sometime in Jan/Feb 2008 according to Dr. Lee.

Glad to hear that you are feeling good and losing weight—good for you!!!!

Brian

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Hi,
Just finished 6 month checkup with PSA at 0.3 and testosterone near the low limit. The latter is bad in some ways but generally safer. Urinary function is essentially normal and there are no apparent side effects. Can’t say enough good things about the treatment so far.
A support group meeting with Dr. Lee (and his ilk) as presenter(s) would really be interesting. Most presenters are expert in some areas but lack a comprehensive view of the technology and biology.
All in all, I have the good fortune to live about 15 minutes away from the proton center.

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Welcome to Fred B. our newest member of the ProtonPals from Folsom New Mexico.  Welcome to Houston.  You should be in for the 2 of the 4 best weeks of weather in Houston.    Let us know how you decided to come to MDA Proton Center and made your decision to select Proton Therapy as your choice of treatment.  It will probably be the same reasons many of us chose to come.  With the addition of Fred,  our informal ProtonPals mailing list is 140.  The recent growth is due to the work of Tai Ly, Bob J. and Wylie P. 

Congratulation to Wylie who just rang to gong on Wed. but promised to return on Friday for more gong ringing and celebration.   Now that Wylie will not be visiting the center daily,   I’m looking for a volunteer who will subscribe new members as they start their treatment and mail the addresses to me.   Bob J and I are working to automate the process with an on line subscription and mailing service.  Also we will have a master list if you’d like a copy to contact your friends.  

If you’re getting these emails and your friends aren’t, please let them know that some of the mail could be ending up in the SPAM or JUNK basket.  My email provider is getting so efficient I have to check that basket daily to find mail that is NOT SPAM.   

Sloane Caskey, the PTC’s social worker has forwarded this flyer to me about the support group meeting next Wednesday.  The meetings are scheduled for the 4th Wednesday of the month, but with Thanksgiving and Christmas, Sloane is not sure if there will be a meetings for 2007 after this one.  I spoke to Dr. Lee about being the featured speaker at one of those support group meetings and he’s seriously thinking about it and schedule permitting he is going to attend one of these.  

Some of you may know we are working to formalize the organization, and I wanted to report that we’re making progress along those lines.  Six graduates with interest and energy along the lines of creating a support group of ProtonPals met on Oct. 10th at the PTC.  Here we developed an approach and will be reporting the progress to you, including piloting a web site. 

I like to track the news of other proton centers and here’s a bit of news of the one in Jacksonville.  It has a video.

http://www.firstcoastnews.com/news/local/news-article.aspx?storyid=93786

Please send me some news and testimonials.  We like to hear how you’re doing.  I just had an excellent 6 month follow up visit and hope everyone else is doing well.

In gratitudeJoe LandryApril 2007Attached Flyer Flyer

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Dr. Cox,
    My wife and I were fortunate to be able to participate in the PTC tour in September. Our expectations were high but they were exceeded. The tour was led by Rebecca Frame and Dona George with assistance from Mustafa Said. The facility is very impressive, but the knowledge,dedication and personalities of those three members of your staff are even more impressive. Ms. Frame explained the physics and the technical aspects of the process in a way that not only was understandable but also very interesting. Dona and Mustafa were also very knowledgeable and their pride in the center is infectious.

    Thanks to the PTC for allowing these tours to take place, and please pass on our thanks to Rebecca, Dona and Mustafa. These tours and the support group meetings are valuable to current, past and prospective patients. I graduated last week and want to tell you how fortunate I feel to have been treated at the Prostate Therapy Center with the best treatment procedure available at the best facility available. Even more important than the technical aspects are the PTC people. All the staff is dedicated, compassionate and always positive. They treat the patients with dignity, warmth, respect and a sense of humor.

    The patients and their close family members are another people aspect of PTC that is outstanding. The help that I got from the "old timers" who were around when I started, and the daily support from the patients that started around the same time I did were both invaluable.

   While recognizing people I would be remiss if I did not include the most important person to me, my wife Dasha. Her mental, emotional and physical support was extremely important to me both during the decision making process and the treatment.

Regards,
Wylie

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