| New Features | |
Find out how the website has changed and how easy it is to navigate. See our collection of stories under the story tab. Send us your results, anonymously if you like, so we can post them for others to read. If you are in one of the Lupron (ADT) programs register in the discussion site and leave a comment for Legionnaire Dave at the discussion site.
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 | | Heading for Vacation |
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Happy Labor Day. I hope you're looking forward to this week end like our young friend in the car above. Somehow I get encouragment and an uplift when I dig up one of Norman Rockwell images to use in the newsletter. Many adorned the covers of the Saturday Evening Post from my childhood and later when I retired I got to visit the museum in Stockbridge, MA. Mr. Rockwell quoted as saying "Without thinking too much about it in specific terms, I was showing the America I knew and observed to others who might not have noticed."
Speaking of Massachusetts we know of another resident, Bob Marckini, who just weathered through Hurricane Irene last week end. He subscribes to our newsletter and we wanted him to know all our ProtonPals wish him well; we hope the boat and the house on the Cape came through all the wind and water, We wish "fair winds and following seas" for Captain Bob and his crew.
Houston is 175 years old this week and has seen it's share of world events amid some scandal. Along the way it has produced a great many international leaders, jobs and riches for quite a few people. Growing up in Louisiana, Texas was the place you talked about moving to and to find work. From the oil boom in the 30s, the construction and ship building days of WW II, and the high technology era that we're in today there's been a steady growth of jobs and population to meet that demand. You've probably heard the saying, "I wasn't born in Texas but I got here as soon as I could."
Unlike hidebound cities in which I've lived like New Orleans, I always thought the Houston city culture and attitude much more welcoming and maybe reflected the oil wildcatters attitude. Respect and awe for skills and risk takers. Think Red Adair with the "Get 'er done" attitude of putting out the Kuwait fires.
But it's something else. A condition which the author, John Leinhard put his finger on it in a recent broadcast of Episode 1793 Engines of Our Ingenuity - "What Was Your Name?". He wrote that you don't need to be a second generation Houstonian to feel like you belong. It's like those old Western towns where you didn't have any second generation families. The town was too new. Everyone was in the same boat. He notes "Houston, Texas is quite another matter. It's a fine begin-again city. We're all minorities. You hear any language or music, eat any food, walk with the rich or the poor and not wonder whether you have the right to do so. Who my parents were matters only to me."
That's changed over the years and there are second and third generations of founding families who have shaped the town's future and benefited it's citizens with exceptional philanthropy. You'll recognize the names, Monroe Dunaway Anderson, Bakers, Browns, Cullens, de Menils, Fondrens, Hermanns, Hobbys, Hoggs, Jones, Taubs, Worthams, Yates; and to the north in Lufkin there are the Temples who are benefactors of many programs in the Texas Medical Center including the ProtonPals. This list is well documented in this week Sunday Houston Chronicle.
Ban Capron and Peter Taaffe, make up the rest of the leadership team, have been with me from the begining. The week we met with our newest director Dave Stevens for an annual ProtonPals meeting and decided to increase the number of board members from 3 to 5 over. Many of you have met Legionnaire Dave over the past few months where he last fall he coordinated the Wednesday night dinners and more recently has researched, published and responded to letters about the proton therapy treatment and hormone therapy. I think we've hitched our wagon to Dave's star but we're doing everything we can to make sure his research and knowledge get out to as many patients as possible.
Our other new board member who you probably met is Drew Cox. Drew completed his proton treatment earlier this year and has been very active in support of the Proton Center and in working with the ProtonPals. About 2 months ago, Drew signed up to be a "regular" M.D. Anderson volunteer and agreed to be vetted and trained. Like John Barna-Lloyd who's worked many years supporting Dr. Lee's clinics, Drew volunteers every week at the Center, then follows up by organizing and attending the Wednesday night ProtonPals dinners.
Please welcome both Dave and Drew.
I attended the very well attended ProtonPals dinner this evening at Palazzo's and spent a really memorable evening meeting a great group. Many of them came forward to confirm the good work our ProtonPals team is doing. This makes if all worth while and I wanted to acknowledge and thank all the men on the contact list who are at times unrecognized here supporting the callers through their initial journey.
In Gratitude,
Joe Landry  | Let's Go Home.
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| The Lupron Legionnaire Returns | |
September 22, 2011 1:00 to 2:30
The Proton Center Patient Group will be hosting a talk on Thursday September 22 between 1:00 and 2:30 pm in the Proton Center large Conference Room entitled "Things you've wanted to know about Proton Therapy but don't know who to ask." The speaker will be one of our patients and a ProtonPal leader, Dave Stevens. Whether you're currently a patient at the PTC or a Proton Center Alumnus, you're invited.
In the first half of his presentation, Dave will cover:
- What happens to my PSA after Proton Therapy is over?
- What warning signs should I be on the lookout for?
- How can I tell if I am low risk, intermediate risk or high risk?
- Do the treatments continue to work after my 39 sessions are done?
- What does the medical literature say about life expectancy after treatments?
- Why is a Gleason score so important? What does it look like under a microscope?
- What is the difference between a Gleason 7 (4+3) and a Gleason 7 (3+4)?
- What's next after if the protons don't kill all the cancer? What are the stages?
- What does it look like under a microscope when the protons kill cancer?
The second half will focus on the 50% at the PTC who are on hormone therapy:
- If proton treatment nukes the cancer, why do I need hormone therapy?
- How does hormone therapy work?
- Some get 4 months of Lupron, others get 6 months. So why do I get 24 months?
- I'm intermediate risk. Doesn't high dose radiation make hormone therapy obsolete?
- What evidence is there that hormone therapy works? And for whom?
- Since I've been on Lupron, I'm having ED, mood swings, hot flashes and I just feel like sitting in my recliner all day. Does this happen to anyone else?
- What are some other side effects of hormone therapy? How can I cope?
- How long does it take to get over the effects of Lupron?
- What about my PSA while I am Lupron, and when I get off it? What warning signs should I know about?
When Dave "rang the gong" back in January, he realized that his therapy was not over, but that it had barely begun. That's because he had another 19 months of hormone therapy to go, in a two year stint. For the past several months, Dave has made a study of scores of complete articles in the medical literature dealing with numerous aspects of proton, radiation and hormone therapy. In addition, he brings his own experiences as a patient to the presentation. His doctor, Dr. Andrew Lee will have reviewed Dave's presentation for medical accuracy as he did when Dave spoke about hormone therapy back in May.
"Nearly everyone I met during my 39 proton treatments impressed me with how he thoroughly he examined all the treatment alternatives and made up his own mind how he was going to deal with his prostate cancer," says Dave. "However, no one focused on what happens after the treatments are over, and what they should be looking for. And few of us on leuprolide (Lupron) were proactive in either researching the benefits of hormone therapy or learning about the side effects, let alone developing strategies for coping with them."
As always, Dave stresses the importance of continuing to stay in contact with your Proton Center doctor after you ring the gong. "Our doctors are quite knowledgeable on all aspects of medicine, not just proton therapy, and they're anxious to help any way they can. Your Proton Center doctor is the one you should contact if you have any questions or problems, not your hometown family doctor. If you send your Proton Center doctor an email or pick up the phone, he or she will get back to you quickly. They're not like many family practice doctors who require an appointment before they will communicate with you."
When he's not at the PTC, Dave has his own law and CPA practice in the Galleria area.
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Proton Therapy National Education Conference
| Save the Date for this conference at MDACC
On September 9-10 a conference will be held at MDACC to update health care professionals on the recent advances in radiation oncology using proton beam therapy. Proton Conference at MDACC From the early planning I remember Dr. Lee spoke of participants being able to tour the center and that will happen on Friday evening. The course is for healthcare professionals and will earn them CME credits; and I'm still not clear on whether interested patients can attend.
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Free Prostate Health Conference
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Protect Your Prostate: Get the facts
Learn what current cancer screening guidelines mean for you, how online educational tools can help you make screening decisions and current prostate cancer treatments. This is a half day conference at the South Campus Research building on Fanin and Old Spanish Trail Prostate Health Conference 2011
Get the conference flyer |
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Dr. Servan Schreiber July 24, 2011
|  Saying Goodbye
In July 22, 2009 Dr. Servan Schreiber was full of life and optimistic as he spoke at an annual public information meeting held annually around mid year. A 20 year brain cancer survivor he was joined on stage by Dr. Leonardo Cohen, Director of Integrative Medicine Program at the M.D. Anderson Cancer Center. Dr. Servan Schreiver had been named as an Adjunct Professor in the section of the Integrative Oncology. At the meeting we learned of an extensive joint complementary program of research organized with M.D. Anderson as described here in the announcement of the Servan Schreiber/Cohen Anticancer Fund. He was also named to be the main speaker at the Anderson Survivorship Conference in September 2010. His talk from is available on video Anticancer - Explore a New Way of Life. He liked to speak about statistics and the mortality distribution curve of patients having his type of brain lesion. When he was diagnosed those many years ago he was looking at a median survival time of 18 months. This is at the top of the distribution curve he showed in his slides. It was a distribution curve and with some statistics to the left of the peak who did not survive 18 months and some on the right of the curve who survived much longer than that. He wanted to do everything he could to push his number on the curve all the way to the right. Well he did push to the tail of that curve on the right by almost 20 years and accomplished a lot in those years. Beginning in late 2010 his number was up when another recurrence happened and it was found he couldn't do any more to avoid the inevitable. It was a surprise when we learned that Dr. Serban Schreiber was not going to be attending the September 2010 Anderson Conference as the main speaker and someone else was named. Sometime this year, he returned to his boyhood home in France for his remaining days and was surrounded by his three brothers and his son when he passed away on Sunday July 24, 2011.
Servan-Schreiber often wrote in Ode about how he was enjoying life after cancer. He also addressed the things that, for him, truly mattered in life: love and friendship. Earlier this year, he wrote: "At the end of our lives, ultimately only one question remains. Did we manage to give others love and did we receive love from others? Did we manage to "be there" for the important people around us, or were we too busy thinking about the next game?" Death of Servan-Schreiber in France |
| Houston's 175 Birthday | Families that Shaped Houston Future (Houston Chronicle Sunday August 28, 2011)
The first full time job for Monroe Dunaway Anderson was
 | Monroe D. Anderson 1873-1939
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working as an assistant cashier in a Tennessee bank. There he was known as a good judge of character, a dapper dresser(he wore shirts with 4 inch collars) and a careful, cautious employee. After 10 years at the bank, however, Anderson took the $3000 he'd saved and he, along with his brother Frank Anderson and Frank's brother-in-law Will Clayton, started a cotton merchandising firm, Anderson, Clayton & Co. Originally based in Oklahoma, they moved the operation to Houston where it became a worldwide enterprise.
Three years before his death in 1939 Monroe Anderson created a charitable foundation to benefit the residents of Texas and it was funded with $20 million dollar on his death; and as they say the rest is history. Monroe followed by other far sighted individuals formed the base of the Houston Texas Medical Center and the M.D. Anderson Cancer Center with grants from that foundation.
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| Vision for Proton Therapy | Where Goes Proton Therapy?
If you been a Proton Pal for the last four years you've seen the number of centers grow significantly in spite of the hard economic times. The number of groups and foundations have accompanied the keen interest in this mode of treatment and most groups are dedicated to educating the public about the advantages of proton therapy. When Bob Marckini, our predecessor in all things proton started off 10 years ago there were only 2 Centers - one in Boston that was a research facility used by oncologists at the Harvard Medical Center to treat patients and the Loma Linda Dr. James Slater Center. In this decade the number of centers have grown to 9 in the United States and 32 in the world. Importantly there are 24 more in construction or planning that will start treating patients over the coming months. The number of patients treated world wide is at 74,000 with Loma Linda accounting for over 20,000 patients. The Anderson Proton Center, in operation for only 5 years, has treated over 2000. Where is Proton Therapy Headed?
- Proton therapy will be the only radiation used when the costs are comparable to x rays.
- Pencil beam scanning is the most significant advancement and will be the only way to go. It is being used to treat more tumor types as the processes and radiation planning are put in place.
- The Anderson Proton Therapy Center is a world class leader and was the first Center in North America to use pencil beam scanning.
Both Lomax and Bortfeld concur that proton therapy is likely to become more prevalent in years to come. "There are an awful lot of centres in planning, facilities which are being built, facilities which will very shortly be online," said Lomax. "Some will use passive scattering, some scanning and some will combine the two. I think it's going to become much more widespread, it's going to become much more mainstream." Biggest Breakthrough - Scanned BeamsThe most significant new advance is the scanned beam in which the proton beam is painted very precisely through out the tumor volume. This advance has allowed the oncologist to really conform the dose to the tumor while sparing critical tissues and structure. The first site in the U.S. with beam scanning is Gantry 3 at the Anderson Proton Therapy Center. It was commisioned in 2006, approved by the FDA in December 2006. The first patient was treated in summer 2007. Which Would You Choose?
Cost is the main issue in adopting proton therapy. "Clearly if proton therapy cost the same as IMRT then everybody would do proton therapy", said Thomas Bortfeld, Director of the physics division at Massachusetts General Hospital in Boston. Given this radiograph of the torso being treated for proton therapy which mode would you choose?  |
| Mayo Clinic Decides on Proton Therapy | Proponent of Beam Scanning
I know some of you have been to the Mayo Clinic for consultation on prostate cancer and have come away disappointed in that the urologists(surgeons) did not recommend proton therapy. In fact we learned anecdotally they talked down radiation as a treatment option. Apparently this will change very quickly now. The leaders of this very large non-profit medical center, where 350,000 patients a year are treated , "got religion" about proton therapy; and they got it in a big way. Mayo is building 2 huge centers, one in Rochester Minnisota and the other in Phoenix Arizona. Mayo Clinic on Beam Scanning A gift of $100 million by Richard Jacobson makes up 20% of the total investment budgeted to build two centers. I think it is especially good news for the Anderson Proton Center since they chose the same vendor as the PTC - Hitachi. There are many vendors used to build a proton center but the main working parts will come from Hitachi. This represents a turn since Ion Beam Associates (IBA) the Belgium company had been getting most of the new orders for proton centers in the US. In the article above it notes that 8 gantry rooms would have a pencil beam nozzle. |
| The Comraderie and the ProtonPals | Your Support Group
 | | David Spurlock. |
David Spurlock in a You Tube Video talks about his decision to be treated at the Anderson Proton Center and the comraderie he experienced with the group of men in treatment and at the Wednesday night dinners hosted by Drew Cox the ProtonPals. Part II - Managing Side Effects
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"Prostate Cancer Industry"
| | A Message from the Proton Warrior
Like many of you, I went through proton therapy. I was so satisfied with it that I decided to write a book about it. What started off as a patient's manual about going through proton therapy morphed into a critique of, bear with me here, a sinister element in today's health care, the prostate cancer industry. Yes, it really does exist. It is but a part of the rapidly growing medical industrial complex. Laugh if you will, I don't blame you for it does indeed sound silly. I'd laugh with you if it were not true.
Keep in mind, my fellow patients that I'm just like you in that I had prostate cancer and sought out what I believe to the best treatment. While going treatment I was surprised by the negative attitude many of my fellow patients had toward the urologist who diagnosed their prostate cancer. Curious, I then did a structured interview on 40 or patients in which I asked them to describe how they felt toward the urologist who diagnosed their prostate cancer. Again, strong negative feelings came forth with many patients reporting they felt their urologist tried to pressure them into agreeing to surgery or IMRT they or an associate provided. Really curious, I then did a review of the literature and discovered a number of articles in the New York Times, Fox News, The Wall Street Journal, and the Washington Post critical of the growing trend of corporate America marketing IMRT and Robotic surgery devices to urologists to "increase their profit stream." These media reports that pointed out how urologists then engage in the controversial practice of "physician self referral" and then refer most of their patients to the treatment they provide using one of the devices they bought from corporate America. The net result is that many patients either receive treatment they don't need or go through treatment such as surgery with the worst risk of serious side effects.
I went ahead and wrote my book, PROTON WARRIORS - CONQUERING PROSTATE CANCER WITH THE INCREDIBLE PROTON BEAM and it will soon be published and available on Amazon. But having been involved in research before I retired I decided to do a survey of the attitudes of patients toward the urologist who diagnosed their prostate cancer. The results were consistent with the interview I did and reveal a very negative attitude toward urologists. I will share these results in a later report to you.
I know most of you have already had treatment for your prostate cancer. I hope all of you are doing well. But how many of you know men who did not go through proton therapy and instead elected other treatment and who are now suffering from incontinence and/or impotence? Yes, I know not every man who goes through surgery end up with bad side effects. But far too many men do end up with side effects that are simply appalling. Have you ever wondered why so many are steered to surgery?
Here is a link I encourage you to go to. It is written by a urologist/surgeon who criticizes the surgical treatment of prostate cancer and other treatments. after effects
I also encourage you to read the book INVASION OF THE PROSTATE SNATCHERS.
Invasion of the Prostate Snatchers: No More Unnecessary Biopsies, Radical Treatment or Loss of Sexual Potency
by Mark Scholz M.D. by Other Press
Hardcover ~ Release Date: 2010-08-24
List Price: $24.95
Our Price: $14.81
Buy Now
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| BrotherHood of the Balloons | A New PowerPoint Presentation
The BOB Tales newsletter is full of current news this month and if you're not subscribing you should. Use the link on your left to access the site and register. Last month Bob Marckini, ProtonBOB to most of you, offered to ship a copy of an updated presentation that some of us Pals have used to help inform social or religious groups about the proton therapy treatment. It's entitled "Prostate Cancer Awareness, Diagnosis, Treatment and Proton Therapy. Bob's daughter, Debbie Hickey who does such a fine job with the BOB Tales newsletter is the gatekeeper and if you'd like to have one for your use in spreading the word, please write her at Deborah Hickey. Let her know that you were referred by the Pals and let me know how you plan to use the presentation and how your talk was received.
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About the ProtonPals Organization
Thanks for subscribing to the newsletter and using the ProtonPals website. We won't sell or give your addresses to anyone. You'll receive one or at most two mailings a month from us. If you're a new subscriber you may want to take notice that the past newsletters are archived back to May 2009.
We're a group who chose proton beam therapy to cure their cancer and were treated at University of Texas M.D. Anderson Proton Therapy Center in Houston, Texas. The "Pals" formed a network in order to:
Stay up to date with treatment cure resultsProvide support to others and Center activitiesBe informed on any side- effectsPromote 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
Support ProtonPals by letting us know how you're doing. That is so important to newly diagnosed men and their wives and partners. 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 a tax deductible non-profit) at the address above. Read more about about it on the website How to Help - Giving
Sincerely, 
Joe Landry
ProtonPals, Ltd.
ProtonPals, Ltd. is a 501 (c) (3) public charity incorporated in Texas.
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