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 Am I Cured?
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| ProtonPals e-Newsletter | February 2011
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 | | Mardi Gras in Galveston |
February 27, 2011. Houston, Texas - Mardi Gras in Galveston and the rodeo in Houston. Spring has sprung, my Confederate Jasmine are blooming and spilling over an entire fence. There's lot going on this week. I attended the last two ProtonPals Wednesday dinners a commuters drive from where I live. These are coordinated by Drew Cox who's introduced me to restaurants that I didn't know existed in Houston. Good ones, Natchee's Supper 'n Punch, Canopy's and a Thai restaurant. The businesses will handle groups of 40, the current group attending the dinners. It has doubled from last summer where we did well to attact 20 or so. I have very little to do with these dinners except to give the idea some life support when interest droops. This happens at times due to lack of a charismatic leader or interest from the group. From the sidelines - I believe the current success has been due to leaders like Drew, Donn and Dortha German, and Gwen and Jack, the couple who just completed treatment. Jack's graduation dinner drew the biggest crowd and I have included a couple of articles about Jack and Gwen. Congratulations to all who are finishing treatment this week. " With one small gesture you can change a person's life. For better or for worse... During the recent dinner conversations I learned how meaningful your contributions are; by writing journals, answering phone calls, writing testimonials and anecdotes you are very important to the patients and loved ones who go through the Center. At dinner last Wednesday, three wives expressed such moving and sincere heartfelt thanks that I was really moved and had to write about it. Although we don't have Dr. Terry Lavy's name on the ProtonPals' mast head, he along with Ban Capron serve their fellow Pals through influential amount of work and follow up. These small gestures which you do, like taking a Pal-to-Pal phone call as well writing to us about how you're doing may well serve to change someone's life. Speaking about gestures that can change your life, Tai Ly was sent a card by one of our Pals, I know you've gotten them; they're chain letter write ups that really touch you emotionally and then encourage you to send it to 10 friends. It was about how you never know when the kind word you spoke, some heart you touch, will result in unpredictable result. Well last Wednesday I learned how our ProtonPal's stories have provided support to newly diagnosed men and women. It was really moving in that I had a small part in collecting and publishing these anecdotes.
"Thankfully, I was saved.. My friend saved me from doing the unspeakable..' is one of the closing lines and that unspeakable action might have very well have been your choice of treatment or Center.
I've met less than half dozen men who were referred to the Center by a urologist and the few that were came from the MDACC multidisciplinary team. Quoting the DotMed article below - "Ultimately the success of a proton center depends on good relationships with referring doctors, an appropriate patient population, strong leadership and will-managed volumes (census); AND patient satisfaction is crucial. The one thing you need is patient-to-patient referrals". What's New?- Patient Census - The daily flow of patients has increased significantly from 90 per day at a low point last summer to now over 140 per day. This means the center is operating full out until late hours. One of the patients I met last Wednesday was having dinner with us and then had a appointment at 8:00 PM. It's not uncommon to have appointments much later in the evening like 11:30 PM.
- Monthly Proton Patient Meetings - Attendance is so large that the meeting can no longer be held in the small conference rooms in the business center. Last Thursday I saw Chuck Merrifield presenting to a near capacity crowd in the east wing of the PTC.
- Beam News Meetings - Coordinated by Carolyn Allsen, these meetings are held every Wednesday and the attendance has grown significantly. Topics include how your radiation plan is calculated, to Ask the Nurse, Ask the Doctor and physics experts and scientists who talk about the works behind the gantry.
- Website and Facebook Visitors - The number of unique visitors to the ProtonPals has almost doubled since January 2010. The traffic has grown from 532 to 996 unique visitors per month while accessing 13,093 pages in January 2011. Some of this traffic is generated by Google and other search engines accessing our site but much of it is traffic from the United States, along with many other countries like the top six this month behind the US are Romania, Russian Federation, Japan,India, Canada and the Netherlands.
- ProtonPals membership - the membership roll grows moderately with each new class and "marketing" call that I make with a to the dressing room or during meet up dinners and is numbering over 650.
Don't forget there's more information on the Proton Center Facebook site as well as on the ProtonPals Facebook site.
Please let us know how you're doing and we'll use it to help someone.
Your Texas ProtonPal,
Joe Landry
February 27, 2011
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Donn and Dortha German
Giving Back
I met this great couple, Donn and Dortha, when I went to a ProtonPals dinner a couple of weeks ago and was completely won over. While they've been in Houston, Donn and Dortha were not only dealing with Donn's diagnosis and treatment but they were becoming the ambassadors at the Proton Center. They do this by greeting nearly everyone in the atrium waiting area and by making newcomers feel welcome at every dinner they help coordinate. They'll ask and find out how you're doing, have a few words with you and then take your photo for their album that they've built over the past weeks.
They also found and used a tool that's available to anyone who wants to journal online and share the journey with family and friends back home as well as their new friends at the Proton Center. It's a free website for patients. Read More. Both Donn and Donna have journaled on their CaringBridge website and I've asked Donn to write an introduction about how they chose the Proton Center and how they're giving back to all they meet. - Joe L.
Our Caring Bridge Site
 | | Donn and Dortha German |
by Donn German
We drove from Pflugerville, TX (Austin is nearby) to Houston. When we first entered the MD Anderson Hospital Proton Center Nov 10, 2010 for my Consultation with Dr. Andrew Lee, we knew of the reputation of it being the premier cancer treatment center. We expected to take a number and sit quietly in the waiting room like we do in any other clinical environment. The way we were treated by the staff was more like we were entering a spa than a hospital. There was a spirit of hospitality and care everywhere. Everyone was upbeat and welcoming. This spirit was pervasive throughout the entire time we were being treated at the Center.
Some patients were leaving; they greeted us and took a few minutes talking with us. We found out that they were Proton Pals and they invited us to dinner with the group that evening. We attended it and every one while we were in Houston. We also found camaraderie and open sharing in the men's locker room.
Previously in September 2010, I had my annual checkup and my PSA had jumped to 5.8 from 3.8 the previous year. I wanted to wait a month and recheck it. During this time we began to investigate different treatment options on the Internet. We knew of MD Anderson and found the Proton Therapy Center. This also led us to contact Loma Linda, CA. A friend gave us the book Dr. Peter Scardino's "Prostate Book", which is an excellent resource. We also read "You Can Beat Prostate Cancer, And You Don't Need Surgery to Do It" by -Robert J. Marckini. We found the Proton Pal web site and called Terry Lavy who was very helpful about his experience.
After waiting two weeks my wife convinced me to have a biopsy because my father and two brothers had prostate cancer. Before the results came back, I decided that I would go to MD Anderson Proton Therapy Center if cancer were discovered because it promised minimal side effects and high quality of life after treatment. Dortha, my wife, "self referred" me and arranged for a consultation appointment even before we got the results.
In early October, we met with our home Doctor to get the results and found that I had Prostate Cancer. He briefed us on our options: Photon Radiation, Seed Implant Radiation, or Surgery (didn't mention Proton). He recommended that he perform robotic surgery. After we told him that we were going to the Proton Center, he tried unsuccessfully to convince us otherwise. I have found that a majority of Prostate Cancer patients had a similar experience.
We decided to take an open and sharing approach to my treatment and established a Caring Bridge website. This allowed us to make entries and for our friends and relatives to be in control of how much they read. They can make entries in the Guestbook. We didn't have to repeat the story multiple times to those who care about us. We added photos to help tell about my healing journey. We welcome you to read it and to refer others to it.
http://www.caringbridge.org/visit/donngerman
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Run Forrest Run
By the MDACC Proton Therapy Center on Wednesday February 9, 2011.
"Radiation is as radiation does."
-Forrest Gump, American Philosopher
Much like the young Kwai Chang Caine who was anxious to prov
 | | Gwen and Jack on a train in Napa, Ca. |
e to his teacher that he was ready to leave the monastery in the venerable television series Kung Fu, I've been anxiously awaiting the day when I could symbolically snatch the pebble from the proton beam master's hand because that would mean that it was time for me to leave. That day is almost here. Next week, if all goes according to plan, I'll be given the opportunity to sound the "graduation" gong here at the MDAPTC, and after I've done that, it will be time for me to return to Tulsa.
Reflecting upon what I'd like to see happen on my graduation day, I've already planned several of the things I want to accomplish. Some of these things are traditional and expected, such as the guy that's graduating bringing boxes of baked goodies into the Old Boys Club for the other fellows to snarf down with their bottled waters during the course of everyone's treatment that day. In the interest of a lasting legacy to gantry number four, I plan to donate a compact disc to its musical library. The CD will be played in its entirety at nearly full volume during my last, sentimental journey to, on and from the treatment table (in the interest of furthering the grand musical education of the youngsters who administer the radiation therapy, it'll be this Band's Greatest Hits).
After changing out of my fashionable, backless, hospital gown, it'll be a quick stroll out of the dressing area and into the hallway which contains the gong. To the surprise of many (and the appreciation of all), I don't plan on giving a long, dull speech before sounding the gong. I'm going to briefly thank Gwen and the MDAPTC team and then hit that SOB for all it's worth! I'm reliably informed that if we hurry along after treatment that morning, we'll still have time to enjoy items from the breakfast menu at Pappasito's Mexican Cantina, which, without question, will be the one Houston restaurant that I will miss most (that being said, I can't wait to return home so I can savor some Tulsa-style health food such as a squeeze cheese coney and some crispy gyros from Jim's Never On Sunday Coney Island and Greek Food Restaurant ).
I do want to thank you for taking the time these past few months to read what I've written each week. I won't presume that it's been informative or even entertaining for you, however, I want you to know how much you've helped me during this adventure. Without fail, in response to each week's email, I've received beautiful, heartfelt, loving messages and words of encouragement. Likewise, I've also received smart-ass, profane, denigrating responses, all of which were written with no less love and encouragement than the overtly gorgeous notes. I thank you for them all. You have helped to keep me grounded, optimistic and mindful of how fortunate I am to have so many friends and family members that care about me and that want me to stick around for just a little while longer.
Twenty years ago, I participated in the New York City Marathon. Much like my attitude before beginning my Houston odyssey, I felt confident that I was prepared for the test of endurance that lay before me. I started out the foot race feeling strong and continued on until I hit the proverbial "wall" at about the twenty-one mile mark...in Harlem. I slowed to a shuffle, then to a walk, being passed by many, if not most of the twenty-six thousand others who were competing on that Sunday in November of 1991. Just as I thought I might not have what it would take to finish the last five miles of the race, I caught the eye of a spectator. She was a short, stout, black woman through whose neighborhood I was passing. She couldn't have stood taller than five feet and she certainly didn't weigh less than three-hundred pounds. For whatever reason, she chose to jog over to my side and she began to shout, loudly shout, into my right ear, "Run white boy, run! Get your ass moving!" It was precisely what the situation called for and I started to jog again. I hit a "wall" here in Houston a few weeks ago as well. Many of you took it upon yourself to "yell" at me with your messages of encouragement. Many years ago I did finish that marathon with the help of my benefactor from Harlem and I will finish this radiation marathon because of your help.
Thank you for sustaining me during this period of my life.
Love and best regards,
Jack
P.S. Guys, it's all about early detection, so if you're fifty or over and haven't yet done so, please, for the sake of all of your loved ones, schedule a prostate biopsy...today.
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An Unexpected Love Story
MDACC Proton Therapy Center Facebook
Gwen Darling and Jack have just returned to Oklahoma and are getting ready for a big wedding. They met on eHarmony several months back and on their way to a life together they took a short but serious detour to Houston and the Proton Therapy Center. This is where Jack was treated for prostate cancer. While in Houston they did such a terrific job of being ambassadors of the PTC and restarting the Wednesday night dinners that they soon had difficulty finding a restaurant that would host the large ProtonPals crowd. At times the group numbered over 40 for the "early bird specials". Their work continues with a large attendance the last two dinners.
Rather than trying to convey what Gwen wrote please go to this site to read about how true love triumphs.
An Unexpected Love Story
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Insurance Appeals Strategy Document
Bob Tales - Monthly Newsletter from the Brotherhood of the Balloons
 Jeannie Chase has been a long time supporter of the BOB and proton therapy. Her late husband beat prostate cancer in 2003 and proceeded to lead a full happy life until 2008 whe he was diagnosed with a serious brain tumor. Jeannie, Bob Marckini, and Deb Hickey of BOB have worked closely to compile a ton of information over the past several months, and format this document into a powerful tool for all men and their families to help overturn insurance denials for proton treatment. The document is now complete and we are happy to offer it to BOB members and prospective proton patients. If you are interested in obtaining a copy of the Insurance Appeals Strategy Document (ASD), please e-mail Deb Hickey at DHickey@protonbob.com. Be sure to visit the BOB site and read the many interesting articles in Bob Marckini's newsletter including one about how Loma Linda treated it's 15,000th proton patient after two decades of operation.
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Mardi Gras in Galveston
Tossing Beads - A Mardi Gras Tradition
 "During Mardi Gras! Galveston
, the island comes alive with extravagant parades, more than 50 galas and festive events, bead throwing, exhibits, live entertainment and the best Gulf Coast cuisine in the world."
Well that was written by the tourist bureau and with quite a bit hyperbole about the food. Being that I lived in and around New Orleans for a few years I know how the cooking in Galveston compares. But Mardi Gras! Galveston is rich in history celebrating it's 100th event and competes with New Orleans for the title of the having the "original" Mardi Gras celebrated in the New World.
If Rio Carnaval (Brazil) is on your bucket list and you can't make it down there this year you can brave the traffic on the I 45 Gulf Freeway and head down to Galveston Island. Wish I had an insider's track and could get you a motel room but I don't. Give it a try and you may be able to find a room or a condo for rent if you are ok with the west beaches. Events run from Feb 25 through March 8th.
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An Exclusive Club
Proton Therapy to Remain an Exclusive Club
DotMed Story on Proton Therapy You are privileged if you see this sign while lying on a hard table positioned by robotic motors in a proton therapy center. It may not seem that way but it means you were in one of the 8 proton centers in the United States or one of 25 in the world, wearing a backless hospital gown, lying flat on your back with a balloon up "you know where". But if you're in Houston you are also privileged because you were taken care of by the number one ranked Cancer Hospital and Research Center in the US and were treated with one of the most advanced and expensive medical technologies on the planet.
The proton therapy world is small and will probably remain that way because the cost of entry is very high. The price tag for the MDACC Proton Center building and equipment was around $125 million when it was built over six years ago and today's entry would run between $180 to $240 million.
If you've been following the news you'll see many announcements where letters of intent are signed about proton centers being built. These are called "Press release projects" and will never see the light of day because the costs are so high and financing can't be put together. Eight years ago a Houston team, funded with a $1.6 million start up grant from the Brown Foundation was able to put a financial package for the Proton Center in place by combining philanthropy, private investors, equipment partnerships and public funding.
These high start up capital requirements are driving developers to look at ways to drive the costs down and this will involve smaller scale technologies. Still River Systems is probably best known for it's announcements of the Monarch 250 and is planning to treat patients in 2012 with a small room sized system. Ion Beam Applications (IBA) a Belgium company with the cyclotron equipment in 6 of the 8 U.S. centers is planning to develop Proteus One. It will be built around a small footprint cyclotron intended for one room operation, say in a hospital wing. Plans are to treat patients with the Proteus One in 2013. I'm not sure what the power of this device is but typically the small footprint cyclotrons don't deliver 200 MEV beams and potentially it would not be suitable for really deep seated tumors like prostate cancer.
Because of the cost of the facilities, the number of patients treated make a huge difference. Well managed volumes is the by word, and Dr. Andrew Lee, Director of the MDACC Proton Therapy Center is quoted as saying the volumes or the census at the Houston Center is running at 142 patients per day. As you know Dr. Lee is supportive of the ProtonPals work and when he says that patient-to-patient referrals is one thing you need in getting these volumes he's probably thinking of the work you're doing.
So tell your friends, circulate this newsletter and let me know how you're doing. It can be your way of giving back and introducing your friends to this exclusive club. I'm reminded of what Grocha Marx said about country and exclusive clubs but that's for another time.
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Museum City
Fourth Largest City in United States has Culture
Seven years ago, Marcia and I were fortunate enough to travel to the Provence region in France where we spent two wonderful weeks. We had learned about a program called UnTours - a self directed touring service that is very affordable. On one of our drives we spent a good part of a bright sunshiny day at St. Remy de Provence. There we visited the abbey/psychiatric center at Saint Paul de Mausole where Van Gogh was treated in 1889 and 1890. We visited his room where he stayed and walked a tour of the gardens where the station markers showed where Van Gogh had set up his easel and painted some of his masterpieces. This long introduction is all my way of launching into how the Museum of Fine Arts in Houston has 50 of the world's finest pieces of Impressionist and Post-Impressionist art from the National Gallery of Art which will be here until May 23. I personally like impressionist art especially Van Gogh's work. Maybe it's my aging eyes but as my wife the artist will confirm, "If it's vivid, colorful and blue Joe will love it." Certainly the famous Starry Night by Van Gogh is that and more, but then there's other works and other artists who painted in that area because of the light. The paintings will showcases the golden sunshine that lights up everything in Southern France especially after the Mistral winds blow all the haze air away. Especially full of color after the studios of Holland and Paris.  | | Starry Night |
Read about the show and how Houston has an outstanding theater district that ranks second only to New York City and has several major museums all located a short distance from the Texas Medical Center. Read on about the location of MFAH and to see a slide show of nine pieces in the exhibition. Houston's Museum DistrictPS: Van Gogh completed 186 paintings between February 1888 and May 1889 which spans the time he spent in St. Remy and Arles France. Here's a great link where you can view a treasure trove of his paintings with many of those completed while in the monastery/hospital grounds in St. Remy. Van Gogh Prints
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Missed the Superbowl but had a Great Outcome
Serendipity or Divine Intervention?
While speaking with Bob and his wife last Wednesday I used a word which I figure I'd better look up and soon had to resort to going and finding it's origin and history. I hope Bob thinks it fits in this case although I think Lina, his wife, is sure it was divine intervention that led them to M.D. Anderson. Bob sent me his personal note over this week end.
Serendipity - coined by Horace Walpole (1717-92) in a letter to Mann; he said he formed it from the Persian fairy tale "The Three Princes of Serendi(modern Sri Lanka or Ceylon)", whose heroes "were always making discoveries, by accidents and sagacity, of things they were not in quest of."
So are we like one of the three princes? Do we make these discoveries mostly by accident and some by sagacity? I know how I found out about proton therapy.
- Joe L.
Bob's Note:
Like many Proton Pals, I became aware of the proton therapy option less than two weeks prior to my September 16, 2010 scheduled da Vinci robotic prostatectomy. To the chagrin of my urologist, I cancelled and was accepted at MD Anderson Proton Therapy Center (PTC) in Houston in late September. I was disappointed to learn that I had to have 180 days of hormone(Lupron) treatment, (90 prior to starting my 39 treatments) but on Jan 3, 2011 I began my first treatment.
About 20 treatments went by okay but I was gradually weakening and unlike my
 | | Bob and Lina Youngward |
fellow ProtonPals, I had increasing trouble with constipation and serious lack of energy. Finally after a weekly (see), the PTC doctor ordered a blood test which revealed that I had excess calcium in my blood. Excess blood calcium is a dangerous stress on the kidneys and an upsetting influence to normal heart rhythm. The astute PTC oncologist doctor ordered me to the MD Anderson ER immediately and I remained there for five days to cleanse the calcium from my blood and restore the proper balance of electrolyte elements. On super bowl Sunday with five minutes remaining in the game, I was allowed to return to our rented apartment. During this hospital stay only one proton therapy treatment was missed.
Additional tests followed which identified one of four parathyroid glands was hyper active and secreting a hormone which was driving the body to increase the calcium in the blood. An out patient operation is scheduled to remove the misbehaving parathyroid to correct the problem. The culprit is very unlikely to be cancerous. The surgeon stated the problem may have existed for 2 to 4 years in order for the troublesome gland to have grown to its present size.
The bottom line is that had I taken the prostatectomy route and a test for blood calcium had not been made an element of my pre-operation checkup; I would probably still have this deadly and serious medical situation hidden within my body. Proton therapy with its demand for a full bladder added the extra stress that helped reveal this hidden problem.
Robert Youngward lives with his wife Lina in Lakeland Minnesota and has three children and six grandchildren. He worked 35 years as an engineer for the 3M Company and retired in 1996. He currently enjoys woodworking, downhill skiing, biking, model building, classical music, and activities with his grandkids.
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New Help at the Proton Therapy Center Web Site
Be Sure to Check Back Often
In addition to a complete make over of the Proton Therapy Center Web Site and a new Frequently Asked Questions section installed last year, the Site also has a new function called "Ask a Question" by email. I just tried it but it's Sunday so I don't know how it's going to work. This is the link where you can submit a question via email. Ask a Question. Once you've filled in a small amount of information you will get the following automatic response while someone is assigned to answer your question. So I don't know if this is going to be Tai Ly or someone else who follows through. 
Please provide us, the ProtonPals coordinators with feedback as to how this works for you.
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39 Percent of High Risk Prostate Cancer Patients Not Getting Scanned
All of the High Risk Patients Should Have Received the Tests (MRI, CT or PET) Imaging resources for prostate cancer appear to be badly managed according to a national article presented at a GU conference in Orlando, Feb 17 to 19. Too many low risk patients are receiving advanced imaging scans and too few high-risk patients undergoing the tests. According to a study described in the DotMed article, 39% of high-risk patients didn't undergo the advanced imaging tests. I can think of how this data could be biased by the fact that many high risk patients who reported in the study didn't find out they had cancer until late in the cycle and may not been at top clinics like MDACC. Here at MDACC I think every prostate cancer patient undergoes an endorectal MRI. The costs of these tests for low risk patients is considered avoidable by Dr. Sandip Prasad the author of this study. READ ON
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About ProtonPals
Thank you for subscribing to the newsletter and using the ProtonPals web-site. You'll receive one or at most two mailings a month around mid month. In addition to the newsletter we'll also send one or two additional emails of special events or news that are of interest to the group that month. If you're a new subscriber you may not notice that we've contracted with the email service to archive our newsletters back to May 2009. 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 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
ProtonPals, Ltd. is a 501 (c) (3) public charity501 (c) (c)
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