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ProtonPals    e-Newsletter                                     
October 2010            

Dear :
 
Welcome to the ProtonPals and thanks for subscribing to the monthly newsletter. Please share the information and learnings of our group with your friends and family by Forward this emailforwarding the newsletter. Select this icon and enter your friends e-mail addresses. And PLEASE let us know how you're doing so we celebrate with you and reflect it in our one pager, "Am I Cured?".

This month's newsletter will be somewhat "lite" in that I've been dealing with some medical issues and have not had the energy to be as involved as I had been in recent months. The good news is that last week at my 3 1/2 year follow up I was "released" by the Proton Center and I'm on 6 month PSA checkups. My PSA level has been steady now at 0.2 mg for the past 3 follow up sessions and is probably at what Evangeline Hubbard, Dr. Lee's nurse, calls the "nadir", the lowest point reached by the PSA serum levels. It's great now that I've been released although I'll bet 6 months from now at the time of the next check up I will still feel like I have a sword over my head. 

 Yesterday one of our Pals called from the Medical Center and I drove in to have breakfast with him.  I wrote about Lyle in the August newsletter about how as a young, recently discharged Navy officer, he took a job with the famous nuclear nuclear scientists of the day at the University of Chicago. This was not long after the Japanese surrender at the end of World War II. Lyle and the fellow world renowned scientists became involved in the peacetime use of nuclear power. Lyle looked great and had just had an excellent 3 month follow up with Dr. Lee. His PSA was < 0.1 which in MDACC practice is undetectable.  Lyle turned 88 right after completing his treatment in August.  

Proton Therapy Prostate Patients Monthly Meeting will not be held because of Thanksgiving Holidays.

Beam News Weekly Information Meeting every Wednesday either at 10 or 1. Please see receptionist.

Heading east to see the daughters and their families in Louisiana and maybe some ProtonPals in Baton Rouge if I catch them at home. 

Your ProtonPals,
Joe Landry, Ban Capron and Peter Taaffe
ProtonPals
October 30, 2010 

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In This Issue
New Way to get the News
Our Proton Center Survivors
Diagnosing Prostate Cancer
PSA Levels after treatment
New Centers open in US
Medicare Doesn't Pay for Outcome
Part 5 of A Personal Odyssey
Sexual Intimacy after Treatment
A Compact Proton Therapy Center
A Change in How You Get the News
Proton Center on Social Network
Following up on September's newsletter you'll note that the Proton Center's dedicated Facebook page is going to be supplying you with the news and events schedule. News of the center and it's staff will be posted by a writer from M. D. Anderson Cancer Center. I think this is a great idea and it was a need that I tried to fill with the newsletter and the ProtonPals Facebook page.

Now if you go to the Facebook page you'll see events that some patients have missed in the past, like the New Patient and Family Orientation Class. Some times the patient and his family were in the last week of treatment when they became aware of the dozens of programs M.D. Anderson is holding for their benefit.   

Especially important is a timely publication of the schedule and the topic of the weekly Beam News meetings. This month, on Wednesday October 27,  Julie Young will discussed her experience at the proton center from the perspective of a young mother caring for her 3 year old son.Link to Scheduled Events   And everyone dressed up since it was Pedi Day.

In order to post comments on the Proton Therapy Center site you'll have to join Facebook. You can do this by going to Find us on Facebook and supplying your email address. Once there you can "friend" the Proton Center site and join the other 443 friends. Typically you won't get swamped with email or spam from Facebook unless you choose to subscribe to the newsfeed and have alerts shipped to you. 


Meet Our Survivors
A Section in the Proton Center Web Site
By going to this web site you'll see the list of stories about survivors is growing and that Dana Lee, the Proton Center Marketing Manager has been quite busy.  There are several stories and three about prostate cancer patients. Patients with other tumor sites are being featured also. If you'd like to share your story you can send it to Dana at the center. Once your story is accepted a professional writer will contact you for a brief telephone interview and some editing. You can also let me know if you'd like to do this. 

Understanding Diagnostic Testing for Prostate Cancer Patients
An Excellent Web Seminar by the USToo  Foundation 
This is a 45 minute web seminar that I think you will like. It comes with an excellent set of 35 slides that broadly covers diagnosis and monitoring of prostate cancer.  The seminar was recorded by Dr. Manish Bhandari a practicing oncologist in Cincinnati.
When you go to the site you'll note that there's a set of slides as well as a transcript if you prefer to study this seminar in hard copy.  You might want to do what many of my friends did and that is to print the slides ( 2 or 4 per page to save paper) and make notes as you watch and listen to Dr. Bhandari. Please go to  Link to the UsToo Site
PSA Response after Proton Therapy TreatmentThe PSA Levels of a Three Year Survivor
A Response You Might  Experience from Treatment

When diagnosed early prostate cancer is realtively easy to cure and responds well to proton therapy radiation. That means you should recommend to your friends over forty that they be screened early and keep good records.
Here's a plot of lab results are from a patient who was treated in 2007 and is now in a 3 1/2 year cycle. This low level of 0.2 ng/ml is called the nadir and we hope publishing this doesn't jinx the patient.
Two New Proton Centers
Two Centers Started Operation In October
Hampton University Proton Therapy Institute treated it's first patient in October. It is one of the largest and most expensive centers to have been built and it took 2 years to build. The Institute now has one of the four treatment rooms in operation. Hampton University is located near Norfolk VA at the mouth of the Cheasepeake Bay.    

Also, Illinois now has a proton center and it's located in Warrenville a suburb of Chicago. You can read more and find out about the center and how to contact CDH Proton Center.  It opened in October 19, 2010 and is now treating patients. The center was built by ProCure and developed in collaboration with DuPage Hospital and Radiation Oncology Consultants.

Cutting Medicare Costs
Medicare Doesn't Pay for Outcome
After reading the headline above, here's the good news - unlike our Canadian friends where clinics and hospitals are prohibited from accepting money for services you would otherwise get for free; being in the US you probably will be able to choose the more effective treatment like proton therapy and pay the difference. Typically national healthcare services don't give you the choice, even if national service won't pay for it. Read more about Cutting Medicare Costs
A Personal Odyssey - Part 5 of 8
Experiences at the Proton Therapy Center and Houston
 
The Odyssey, Part 5 . . .

"Houston, the Eagle has landed;" that is, the 'American Eagle' on Tuesday with the wife aboard after two weeks away-- a momentous arrival (not on the moon, of course) but here: our home away from home. With her motherly hand, I'm now on the straight and narrow path. No more frozen dinners, late night snacks, piled up laundry, and a faded memory of bachelorhood. I'm toast!

The trip to Houston was less trying for her than the SuperShuttle from Bush International (IAB) to our apartment. The van was fully occupied requiring several stops along the way to drop-off passengers. For her it was a test of endurance, made no less tolerable by a fellow passenger who mistakenly thought she was on an ego trip. She babbled about herself incessantly to the annoyance of all. By the time my wife stood at our front door, she was badly in need of a wine transfusion.

A semblance of normalcy returned after the first glass. But, alas, the first was also the last. I had failed to restock the wine cellar (the fridge as some might call it.) With dinner and a further thirst beckoning that could not be satisfied by "Hungry Man" dinners and water, we set out for the Hotel ZaZa. I had noticed the hotel several blocks away on a walk the preceding weekend.

What a great find. The Hotel ZaZa is one of those off-the-beaten path "luxury-styled" boutiques with great ambiance, great rooms, great bar/restaurant, and GREAT! Prices ($12 per glass of wine). We had our dinner seated at the bar with full view of the room, enjoying our food and wine: the allure of subdued lighting, the interesting artwork -- and, the "gay" scene unfolding around us. We couldn't tell for sure about the fuzzy hair deep voice with plastic purse sitting next to us with a lady friend: "Not that there's anything wrong with that." (http://en.wikipedia.org/wiki/The_Outing). Regardless, it's a special place. We will return.

Our view of Houston, the city, is limited to our freeway trips back and forth from Bush International with views of older, faded neighborhoods; the frequent daily route to the Proton Treatment Center; walks in the nearby neighborhood; and occasional shopping trips. Houston is a city of contrasts, as most are, but maybe more so. It sort of sprung up without benefit of zoning laws. Commercial buildings, business offices, retail stores, restaurants, sit side-by-side with single or multiple family residences. The downtown is a gleaming jewel of modern high rises. Elsewhere, over a mostly flat landscape, single high rises jut up out of nowhere, some like obscene finger gestures as monuments to ugly.

My Houston friend, Joe, has been a God-send by providing transportation, enabling us to restock the larder. On one of such earlier trips, he took us to the "Central Market" grocery which I can best describe in type as a "Whole Foods Market" on steroids. The fresh fish counter was at least thirty feet long: Special foods, deli, breads, produce, meat, wine, etc., in abundance and variety as I've never seen before -- a gourmet's delight. He has since taken us to other groceries that offer on average a variety and selection of delights that are not usually available at home. I'm afraid it has become too tempting. Our grocery bills are frightful.

Our apartment is located in an area known as the "Museum District." The museums of Fine Art; Contemporary Art; Natural History; Buffalo Soldiers; Health; and several others are all within blocks of each other. Last Sunday, I set out to find the Museum of Contemporary Art. I thought I knew where it was, but after walking block after block into an area that began to look less appealing, I decided it might be wiser to double back. I finally came upon the sculpture garden adjacent to the Fine Art Museum and from there into the museum's main building. By that time, I had grown tired and my right leg, which had become strained, was giving me trouble. My journey ended there without exploring the museum, but, with another great find: a cafeteria on the lower level of the museum that offered a full menu of food and drink. Now, in addition to the hotel we have two relatively nearby places for occasional dining out.

My treatments have become a daily routine, now half-way done. Last Thursday, the routine was interrupted by a power surge that knocked the radiation machines off-line. It took two hours before they were back up. I had described previously the need for us to have an optimum level of fluid in our bladders at least 30-minutes prior to radiation. Now, with an unknown period of delay, maintaining the appropriate fluid level became a fine balance between grin-and-bear-it, and give-it-up. So, we've got eight geezers in medical gowns doing a Hopi Nation whooping dance up and down the hallway to invoke the spiritual gods of fire and water.

I've had relatively few side-effects so far. Hot flashes and sleepless nights have been the worst of it from the hormone therapy. Dr. Lee has recommended supplements to alleviate the effect, but I haven't noticed significant change just yet. The other problem has been some discomfort in my right leg similar to a shin-splint which keeps me off the treadmill and limits my walks. There was concern of the involvement of a blood clot. That was eliminated after an ultra-sound scan of the veins and artery in my leg. Tai Ly, the nurse practitioner, scolds me: "You rest. You stay off feet. You take ibuprofen. We want you live." I take her advice.

I've done the best I can to get Dr. Lee to call me by my first name. My friend, Joe, who has a closer relationship over more years, is still greeted as Mr. Landry. I guess I'll have to live with my last name which is much better than "Sir."

Super Bowl Sunday beckons. The Saints seem to be the favored time in Houston. So, until next time . . .This month we're going to postpone publishing the fifth part of a journal by one of our ProtonPals. I've had some feedback about the length of the newsletter since it seems some of you print it so you can read it at your leisure.


For a PDF version of Gene's interesting story please go to the ProtonPals website.

The Odyssey

Sexual Intimacy after Prostate Cancer Treatment - Part 1
Ed Weinsberg Web Seminar
Rabbi Ed Weinsberg is very active in supporting and educating prostate cancer patients. Typically he holds on web seminar a month and by going to his site you can sign up for notices of these interactive talks. This is one he featured just a few days ago.

Ed Weinsberg's Facebook Site   

" Sexual intimacy is on the minds of many women whose husbands undergo prostate cancer treatment such as surgery, radiation or hormone therapy. That is not surprising since about half of all men who are subjected to prostate cancer treatment suffer afterwards (if not before) with ED and often with the loss of libido.":


Next Generation Proton Therapy System
Installation of Next Generation Proton Therapy System Progressing Rapidly

Note: Capitalism and innovation are not dead yet and thanks to two companies in the United States there's been some outstanding research that will soon bring proton therapy to more patients in the U.S. and abroad. I've followed the announcements of Still River Systems (an outgrowth of M.I.T Plasma Science and Fusion Center) for almost 3 years now and they are on the verge of installing a Monarch 250 in St. Louis.  They have missed a few deadlines but it looks like they will be up and running in early 2011.  This is a "single-treatment-room" proton therapy system that will fit in hospital or regional radiations centers. 

Because the costs are much lower then the large centers there's been keen interest and numerous sites have made announcements and signed letters of intent. It will be quite a boon for patients of almost all tumor sites especially the pediatric patients because of location and potential lower costs. However I was told that it probably wouldn't be suitable for prostate cancer treatment as practiced by beaming laterally through the hips since it will not have the power of systems in the current major centers.
It looks like the Monarch 250 and Clinatron 250 may be one and the same since both are built by Still River Systems. An oncology group in my old home town, Lafayette, Louisiana has signed up for one as well as Shreveport, LA. 
Joe L.


LITTLETON, Mass., Oct. 26 /PRNewswire/ -- Still River Systems' groundbreaking proton therapy system is entering the final phase of installation at the Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine in St. Louis, MO, National Cancer Institute (NCI) Comprehensive Cancer Center. The precision of proton therapy makes it an important treatment option for patients with cancer, as it spares the healthy tissue and results in far fewer short- and long-term treatment complications. This unique device houses a revolutionary proton source based on the world's first superconducting synchrocyclotron and provides a significant reduction in the size, cost and complexity of developing and operating a proton therapy center.

This next generation proton therapy system is installed in three simple phases, in a radiation therapy room comparable in surface to that of conventional radiotherapy systems. Phase 1 consists of rigging and mounting the accelerator gantry, which holds and positions the proton source with sub-millimeter accuracy.  Phase 2 includes assembling and installing the clinical environment which comprises the 6D robotic couch, the high-accuracy treatment gantry and its applicators, the 2D/3D imaging and positioning systems and the clinical software interfaces.  The third and final phase consists of the installation of the accelerator module.   "The execution of phases 1 and 2 of the first installation went very smoothly and we are targeting 2 months to complete them in future installations," explains Bill Alvord, Vice President of Operations.

The production accelerator is now undergoing clinical commissioning, and all clinical parameters have exceeded performance expectations.  "The innovative design of our proton therapy system is simple and modular thus ensuring a lean and fast production line followed by a quick and efficient system installation," states CEO Joseph Jachinowski. "With our first system produced and its installation nearing completion, we are now reaping the benefits of its unique design by finalizing a complete process that can be replicated to meet the growing proton therapy demand."

Still River Systems will be exhibiting at the 52nd Annual Meeting of the American Society for Radiation Oncology in San Diego California on October 31st through November 3rd.  

ABOUT STILL RIVER SYSTEMS

Still River Systems, Inc., based in Littleton, Massachusetts, is dedicated to providing physicians, and their patients, access to high quality, cost-effective proton therapy solutions. Still River Systems is developing the Monarch250, an affordable, precise and compact proton therapy system for cancer treatment.


http://www.stillriversystems.com

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.

ProtonPals is a group of men 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" and their caregivers 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.
 
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