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ProtonPals Newsletter
Am I Cured? |
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Don't Forget
ProtonPals on FB
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The locations rotate among various restaurants in the Houston Medical Center area. Tell your ProtonPal friends about Joe's House to find housing in the Medical Center area. This link is also on the website and on MDACC website.
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Saturday March 30, 2013, HOUSTON, TX:
Greetings!
I hope you got to go to see some interesting places while you and the family were in Houston and you got to attend a few events. Things gear up in the spring and April promises to be busy also.
We have a bit of news to report this month about the Proton Therapy Center. You've probably heard of Intensity Modulated Radiation Therapy (IMRT) sometimes referred to as regular ex-rays or photons to distinguish this form of treatment from proton therapy. The technology uses a high intensity gun (linear accelerator) to generate computer controlled precise x-ray beams that are conformed to treat tumors including prostate cancer. For prostate cancer the beam is applied at several positions around the pelvis in order to focus around the gland.
A few days ago Dr. Steven Frank, M.D. Director of Advanced Technologies at the Proton Center announce that there's Intensity Modulated Proton Therapy or IMPT at the Center and it is the first in North America. It builds on the development of pencil beam or spot scanning is being used in Gantry 3 to treat tumors that are located in very hard to reach places and the lesions are next to very important organs and body parts, like the head and neck.
"The advantage of IMPT over other forms of proton therapy is the potential for improved dose conformity and better sparing of dose to critical structures," says Dr. Joerg Hauffe, chief executive officer of ProHealth, the Munich, Germany center's operating company. "By including IMPT in our clinical program, we can be very flexible in planning our therapies and use the full potential of these advanced treatments for the benefit of our patients. Proton therapy is already recognized as a very effective way of targeting tumors while minimizing dose to surrounding healthy tissue and this allows even greater precision."
Part 2 of Dave Stevens' interview is included in this month's newsletter. Not only do I support all that Dave is doing, but I follow and take notes on what he's doing very closely and use it as my motivation to manage my side effects. In the interview he mentioned almond butter, I've got to say I had him beat on that. I've been eating almond butter for years in place of peanut butter. Available in Houston at Central Market, Whole Foods, HEB and Kroger in natural bulk form(without additives like peanut butter) and in the Maranatha brand jars in many other grocery stories. It's my supply of nuts for my diet and goes well with Medjool dates as a desert.
We've used resources from National Association for Proton Therapy during our years with ProtonPals and recently we were invited to become a media sponsor for the next proton therapy conference in 2014. In addition I'll feature the links to the NAPT website and Facebook page where you can stay current to which centers are now open and treating patients as well as insurance strategies for Medicare and other private insurance organizations. We wish to thank Leonard Arzt, executive director for offering this to us.
Dave and I are working on producing video modules of topics covered in his February 13th talk and in Richard Amos' talk on the physics behind the beam. The pilot is encouraging only we didn't think they quality was quite ready for prime time; and that has nothing to do with the speakers. This month, right at the tax cliff date, will be my sixth anniversary and I can say my urinary and GI bother has been handled with medicine and exercise. As I age I can not be nearly as cavalier about my body's ability to process certain foods and to recover as it used to. So happily it's something I can manage, only I have to pay much more attention to the old engine that I used to. Used to be I didn't have time for that, now I find I have to take time for those things and in a very organized way. Read the interview with Dave and you'll see a great example of a man to experienced almost all of the side effects for Lupron they warned him about and wrestled them down one by one. Please say a prayer for me as I ponder about the PSA sword hanging over my head while I wait for the MDACC laboratory report.
 
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Lupron Legionnaire Dave Stevens Interview Part 2 | Managing Your Treatment
In last month's newsletter, we reproduced our interview with Dave Stevens, to talk about his experiences on Leuprolide (Lupron) and what it has been like going off hormone therapy. This month, we discuss Dave's experiences with other departments of MD Anderson Cancer Center.
Joe Landry: Your two years of Lupron were finished last August 5th [2012]. Did any of your symptoms start tapering off after being nearly two years on Lupron?
Dave Stevens: Actually, toward the end of the two years, a couple of symptoms continued to give me some problems. I sent an email to Dr. Lee [my Proton Doctor] asking about them, and he referred me to the Symptoms Management Group here at MD Anderson.
Joe: The Symptoms Management Group?
Dave: That's right. They are located over in the Main Building. That's the place you go if you're having problems with side effects from cancer treatments, or if you need some rehab. For example, if you're on chemotherapy and having major problems with that, your doctor can refer you to this group of doctors and nurses. They specialize in this field.
Joe: I hadn't heard of them before.
Dave: Me neither. But that's one of the reasons I decided on MD Anderson for my treatment --- they have staff with experience in so many different fields of cancer. Anyway, they were quite familiar with Lupron and its side effects, and they ran me through a battery of various tests. They came back and said I needed to get involved in an exercise program ranging from lifting light weights to endurance exercises, even including a yoga class that they have at the Mays Clinic every Friday.
Joe: Yoga??! Really?
Dave: That's right, yoga. I had my doubts, but my doctor, Dr. Shin would not take "no" for an answer. He insisted so I had to try it.
Joe: No offense, but you don't seem to be the yoga type. What was it like?
Dave: Exhausting. You heard me ---- exhausting. By the time I got through that first 90 minute yoga session, I felt like I had been through the ringer. I felt almost every part of my body. The MD Anderson class focuses on stretching all parts of your body. While it doesn't look like that much exercise, 90 minutes is a lot. But after going to a couple of classes and doing some of the exercises for a few weeks at home, the nagging joint pain in my shoulders was gone, completely gone. Just like Dr. Shin promised would happen.
Joe: What about the rest of the exercise regimen?
Dave: That took a little longer to get started, however, between the exercise and my weight reduction program, well, ... in mid-November, I weighed 204 but I am now down to about 186, so that's a drop of nearly 20 pounds in three months...
I started feeling better, too. Dr. Shin also referred me to the Integrative Medicine Group.
Joe: Where are they located?
Dave: Up in the MD Anderson Main Building. They specialize on diet and exercise and steps you can take to try to prevent cancer from recurring. They have a full time staff of doctors and specialists, including a dietitian and physical therapist.
Joe: So they monitor what you eat and make suggestions?
Dave: Yes. They had me pick two days and make a list of what I was eating, and compared what I ate with what I should be eating. I found out that there are certain foods that are associated with fighting cancer and others that are not. Dr. Lopez and his staff made changes in my diet. Some of them I really liked, like small amounts of butter in place of margarine, and a real egg at breakfast each day instead of just the egg whites. But also more vegetables and fruit, preferably organic. But I've been staying away from processed meats and fatty desserts.
Joe: What about vitamin pills?
Dave: The Integrative Medicine Center strongly recommends getting your vitamins from nutritious fruits, vegetables and high fiber foods themselves rather than relying on vitamin supplements, based on a variety of studies. One major exception for me is Vitamin D. Because of the relatively slight impact of the Lupron on my bones, and the fact that I didn't get much exercise the second year I was on it, Dr. Lopez has me on a large daily dose of Vitamin D. This will restore my bones along with my big testosterone increase following Lupron.
Joe: Before we wrap up, I have one last question. You keep telling me about how you eat unsweetened dark chocolate that is 100% cacao. I'll bet Dr. Lopez put a stop to that!
Dave: No, he didn't. Unsweetened dark chocolate is a plant food that has lots of anti-oxidants and fiber, and helps you lose weight if you don't eat too much of it. And of course, I have green tea and other things like almond butter (it's much better than peanut butter and better for you, too.)
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National Association of Proton Therapy |
ProtonPals is a Media Sponsor
NAPT has been promoting the benefits of proton therapy for cancer treatment since the foundation was formed in 1990. Leonard Arzt, executive director, has seen proton therapy evolve and the number of centers grow along the years where in March 2013 the US total in operation is 11. The first patients were prostate cancer patients who self referred themselves after they discovered the advantages of of proton beam radiation over conventional X-rays or surgery.
Today it still represents only 1% of all radiation oncology procedures but it is growing from as it went from 2 centers, Loma Linda and Harvard, to 11 centers in operation.
The ProtonPals have followed the developments at NAPT including reporting on the February National Proton Conference 2013 conference where Dr. Lee led a panel as well as reporting on results from MD Anderson patients.
Earlier this month we were invited to become a media sponsor and agreed to lend our name and support NAPT's efforts by publicizing the organization in the newsletter as well as on the website.
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Back to School Part 1 - What is IMPT? | MD Anderson Proton Center Offering the Next Evolution or Cancer Treatment
"In under a decade, MD Anderson has established a full spectrum of proton therapy techniques, providing a range of options from which to select the best radiation treatment matched to a patient's tumor," says Steven J. Frank, M.D., associate professor in MD Anderson's Department of Radiation Oncology and director of Advanced Technologies at the Proton Therapy Center. "With Intensity Modulated Proton Therapy (IMPT), radiation oncologists can offer the precision and tissue-sparing capabilities of proton therapy to patients with the most complicated tumors of the head and neck." That's the headline posted in the Proton Center's Facebook page from a news release on March 18, 2013 and stating that it is the first center in North America.
IMPT is considered the holy grail by radiation oncologist because not only is it as precise as pencil beam scanning but modulates the beam energy to the specific tumor and location. It is especially well suited to treating the most complicated tumors of the head and neck. Read the press release to see the Proton Center's evolutionary timeline. |
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 | Andrew Schorr |
Back to School Part 2:An Ongoing Need for Patients
Andrew Schorr is a pioneer in health communications and patient education and, along the way, became a patient himself. Andrew discovered he had a form leukemia in 1996. With the help of the Internet online forums (these were the early days) he found the most advanced treatment at M.D. Anderson in a Phase II trial. He was among the first to produce videos, telephone and Web broadcasts and town meetings for patients. He is now in deep molecular remission. He published a book two years ago named "The Web Savvy Patient" which we reviewed in this newsletter.

The Web-Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis
by Andrew Schorr by CreateSpace Independent Publishing Platform
Paperback
List Price: $19.95
Our Price: $15.11
Buy Now
His web based publications continue to expand as well as his involvement with M.D. Anderson; so I recommend you take a look at these three sites with his work.
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- Andrew's main web site link.
- Andrew's Blog where he writes about a March 22, 2013 town meeting he hosted at M. D. Anderson Cancer Center in Houston on myeloma. He titled his article Back to School.
- The Web Savvy Patient book has it's own website at this link. and a narration is also available as an audio book.
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Visiting Houston | Travel, Lodging and What to Do
A few weeks ago, I spent time with Steve, a newly diagnosed patient from the Dallas area; talking about the proton therapy treatment and places to live when he comes to Houston for a 5 week stay. I told him about how many patients liked the Lake View RV Resort on South Main and went for a drive by. It was pretty crowded that week since the Houston Rodeo was going full force and it had many visitors. I learned from Steve how flexible Southwest Airlines could be and found that M.D. Anderson Patient Travel Services has access to lodging transportation discounts and rates, as well as non-penalty airfares and change fee waivers.
So even though you've completed your treatment, be sure to mention this to the friends and acquaintances who you refer to the Proton Center or the Main Cancer Center. You're probably familiar with the Visiting Houston section on the main center's web site but I believe it's been recently up dated and is very comprehensive. In case you want to cut to the chase and see the best housing site, please look up Joe's House (no I can't take credit for this) at A Lodging Guide for Cancer Patients. It's a national site but I've dialed up the link to Houston area for you. |
What to Do |
 | Argentinean Tango dance from 2012 |
Houston International Festival
April 20-21 & 27-28 2013 Spotlighting Brazil
Remember the name Brazil 66 and the "bossa nova" ? Sergio Mendes will be here for the annual Houston International Festival "FESTA" featuring the music, dance, art and food from our neighbor to the South, Brazil.
 | Legend Sergio Mendes | Another way to keep up with the activities in Houston is to frequent the Houston Culture Map site. Here you'll stay up to date with what's happening in Arts, Food/Drink, Social Scene, Entertainment and Home Design. For weekly events use this link at Houston
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Texas By Ban |
 | Jan and Ban Capron |
Founding Pal
Ban Capron, my Pal from the Dallas area, has worked and traveled all over the world and this is evident from his photos and collection of international friends. He wasn't born in Texas but in the Midwest and went to University in Illinois. While here in Houston various management assignments he developed a great fondness of Texas that is evident from his current YouTube video. I happen to owe a lot to him but I also agree with him. "I'm not from Texas but I got here as soon as I could." Yes, I'm sensitive that a lot of it is over the top and you get a lot of stuff about Texas in this newsletter. Please let me know if it's TOO much. My thought is that while you're here, when you return for check ups or if you recommend a friend to be treated in Houston, they might as well enjoy it as much as their illness accommodates their visit.
View the YouTube Slide Show "Texas by Ban" and an accompanying YouTube creation with a collection photos taken during his very interesting years and return visits to large parts of Russia. View Russia by Ban |
Health Vault | What are the Benefits of Using a HealthVault.
Mircrosoft's HealthVault has been around for about 7 years and continues to develop and in the last 2 years the software development people have added a function called the HealthVault Connection Center center which you would use to connect to any one of 124 devices on the market like the most popular FitBit activity monitoring devices like ( Flex, Zip, One and Aria) , blood pressure monitors or to receive and store digital images.
HealthVault Connection Center allows you to upload medical images to HealthVault. By uploading your medical images to your account in HealthVault and storing them there, you can keep them organized and retrieve them whenever you need them.
When you have medical images stored in HealthVault-either images that you've uploaded or images that have been added with your permission by a HealthVault-connected provider-you can use Connection Center to download the images to view them and burn them to CDs or DVDs.
Once your images are burned to disc, you can show them to your healthcare providers. This can be useful if you're following up with different specialists about an injury or illness.
- Online health tools and devices to help you analyze and manage information to help you achieve your health and fitness goals
- The ability to gather and store information online using health devices such as, blood pressure monitors, blood glucose meters, pedometers and more.
- Organization for medical records in one place, the ability to prepare for emergencies and tools to help care for and manage your family's health.
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Oncologist Remembers Playing in NCAA
|  World's Tallest Oncologist As some patients have said on meeting Dr. Thomas J. Pugh for the fisrt time, "Well if you didn't play basketball you should have." At 6' 10" the Proton Therapy Center has the world's tallest oncologist on their staff. From the Kansas Jayhawks class of 99, Dr. Pugh has been to the NCAA Tournament four times so he's well familiar with March Madness and the bracket. Dr. Pugh's story is featured on the University of Kansas Alumni Association site, the M.D. Anderson Proton Therapy Center site as well as in an interview with KHOU TV. |
What is Focal Therapy? | Avoiding Severity of Radical Treatment Side Effects"In the United States and other developed countries, prostate cancer is the most common cancer diagnosis in men.[1] Since the advent and widespread use of prostate-specific antigen (PSA) screening, downward stage migration has been observed, as the majority of those diagnosed have lower-risk, localized disease. While screening has contributed to a decline in mortality,[2,3] the urologic community has faced great criticism for "overtreatment" of this disease, largely because of the resulting treatment-related morbidity and other costs to which many who are unlikely to die-or experience symptoms-from prostate cancer are subjected. Additionally, men diagnosed today are younger,[4] and thus for many, preservation of quality of life is arguably as great a priority as cancer control."
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Outcomes After 5 Years | Proton Therapy Provides Minimally Toxic Treatment for Low and Intermediate Grade PCa..
Although I've heard two top Houston urologists report that they favor dealing with side effects like urinary restrictions before treatment as has been done in some treatments at the Proton Therapy Center. This is not supported by this study from University of Florida Proton Therapy Institute. For example some patients are treated for GU dysfuctions before receiving proton radiation. This study indicates intervention may be associated with an increase in GU side effects including Grade 2 toxicity. |
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 note that the past newsletters are archived back to May 2009. Newsletter Archives
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 my home address. Read more about it on the website How to Help - Giving
Sincerely,  Joe Landry, Founder ProtonPals, Ltd. ProtonPals, Ltd. is a 501 (c) (3) public charity incorporated in Texas.
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DISCLAIMERS ProtonPals is an exclusively patient-sponsored organization with no official relationship with or support by The University of Texas M. D. Anderson Cancer Center or the M.D. Anderson Proton Therapy Center. ProtonPals is simply an information sharing network of patients. ProtonPals hopes to inform, encourage and help patients through shared knowledge. Members are not doctors so more serious concerns should be directed directly to your doctor. ProtonPals also desires to promote the M. D. Anderson Proton Therapy Center as for virtually everyone it has been a very positive if not life saving experience. The ProtonPals web-site, commonly known as the ProtonPals.net weblog, will contain hypertext links to information created and maintained by other public and private organizations. These links are provided for your convenience. ProtonPals does not control or guarantee the accuracy, relevance, timeliness or completeness of this outside information. Further the inclusion of these links to particular items in hypertext are not intended to reflect their importance, nor is it intended to endorse any of these views expressed or products or services offered on these outside sites, or the organization sponsoring the sites.
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