|
|
 ProtonPals Newsletter
Am I Cured? |
|
Don't Forget
ProtonPals on FB
| 
|
Join your Pals at the Wednesday night dinners. The locations rotate among various restaurants in the Houston Medical Center area. See the schedule at the reception desk.  Click the icon above for Proton Center Facebook Page in order to see Wednesday Night dinners schedules and other News. 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.
|
|
|
|
Ours to Fight For - Freedom from Want - 1943
|
|
Greetings!
Wednesday November 30, 2012, HOUSTON, TX:
"In the future days, which we seek to make secure, we look forward to a world founded upon four essential human freedoms. The first is freedom of speech and expression-everywhere in the world. The second is freedom of every person to worship God in his own way-everywhere in the world. The third is freedom from want-which, translated into world terms, means economic understandings which will secure to every nation a healthy peacetime life for its inhabitants-everywhere in the world. The fourth is freedom from fear-which, translated into world terms, means a world-wide reduction of armaments to such a point and in such a thorough fashion that no nation will be in a position to commit an act of physical aggression against any neighbor-anywhere in the world. That is no vision of a distant millennium. It is a definite basis for a kind of world attainable in our own time and generation. That kind of world is the very antithesis of the so-called new order of tyranny which the dictators seek to create with the crash of a bomb." -Franklin D. Roosevelt, excerpted from the State of the Union Address to the Congress, January 6, 1941Want to Read What Was Happening in 1943?
Happy Belated Thanksgiving.
On the morning of Thanksgiving Day with the turkey in the oven and my visiting family still fast asleep, I found a gift as I was skimming the morning paper; a bit of help for the day coming from an unlikely source, the Houston Chronicle. Those of you who've met me know I'm somewhat of an introvert and usually prepare on what I'm going to say before standing up to speak; especially "saying grace" on Thanksgiving for the family. What I saw in the paper was exactly the guidance and inspiration I needed. The headline read "Art of Gratitude". It turns out that on the national day of gratitude words don't escape my lips very readily and as I read up on it this is also true for many people. "Gratitude is a discipline" says Hulitt Gloer, professor at Baylor's Theological Seminary. "It is something that we learn so we are able to practice it in the good times and in the difficult times." Reading on to the next headline which read "In hard times, the key is to think of the little things, and here are some tips from the professionals on expressing gratitude."
- Think of life's small things: Finding a sense of gratitude in yourself can be as easy as thinking about the air you breathe, the food we eat, the people who brought you this food to eat and the fact that you are alive for another year.
- Keep it simple: It's not about impressing our audience so there is no need to research the Bible or other inspirational source. It's perfectly ok to give thanks for the turkey that was cooked just right or that the marshmallow-covered sweet potatoes were not burned this year.
- Remember people: Here you can express thanks for people who enrich your life, who are absent or worlds away on each coast and for some who are no longer with us.
- Keep it short: With a table full of food before them, the family and grandchildren who lose concentration on a grandfather's five-page speech.
We are grateful to all who've come forward to support and share information with your ProtonPals. This is one of the ways you give in our "little den" or change room at the Proton Center, in the social hours in the lobby, at the Wednesday dinners at the day's end, and in the financial contributions that you've made to support the web site and brochure publications; and not the least for sharing your story. Hardly a week goes by where I don't get a call from someone who'd like to know more about the center, get more information about the treatment or information they need in their recovery. In this season of giving we'd add a plea for donations to ProtonPals for a special project. I'd like to record and edit some of Dave's talks that are given in the Beam News Meetings to make them available to a much wider audience than those attending the talks. If you'd like to sponsor this special request please contact me or write on your contribution that this support is for an inexpensive video camera, editing software and potentially some professional editing. Whatever you are able to donate means something to us. We take your giving seriously and we are devoted to being good stewards of your generosity. As many of you know the five officers are non-paid volunteers and run the ProtonPals many times at their own expense. For your donation to a charitable corporation - Special Project Donation
In Gratitude,
Joe Landry, Ban Capron, Peter Taaffe, Drew Cox and Dave Stevens
November 30, 2012.
|
| Lupron Legionnaire Gives Ninth Talk |  Proton Therapy - Hormone Therapy -
A Personal Perspective
On November 21st, Dave Stevens gave his 9th talk to the Beam News Meeting at the Anderson proton center. Dave uses sets of slides that are so well done they are almost like a research paper. This talk was entitled "Questions on Proton Therapy Where the Answers are Hard to Find."
This meeting was well attended and as has been the case in his previous talks, Dave had new material he gathered from his personal perspective, research and recent discoveries. This time it was from Dr. Lee's study which was presented in an October talk at the American Society [for] Therapeutic Radiation [and] Oncology, or ASTRO. In addition to being well attended the talk was very interactive with lots of questions from patients and wives. Normally scheduled for 50 minutes, the session went on well into 2 hours.
In addition to answering lots of questions about his experiences with proton therapy and being on hormone therapy for two years, Dave had a couple of key points focusing on tradeoffs. One of these trade off is that to increase your chance of killing off the cancer by upping the proton dose, the greater the potential for side effects. Another tradeoff is that if you want to reduce your chance of being treated for a recurrence later on (Dave calls that "Plan B") becuase you did not kill off the cancer the first time, you may have to have Leuprolide (Lupron) shotes, which also have side effects of their own. Several patients had questions about Plan B and the approach if one has a recurrence.
|
| Charlie Wilson's Bus |
 | | Charlie's Bus |
How Some Folks Give Back
On a recent visit to the Proton Therapy Center, I met a War Veteran who was being treated for prostate cancer. Richard Pulaski served in the Navy during the Korean police action as a flight radio operator. As we chatted I learned that he was a retired educator from Lufkin. I've always had special memories of Lufkin and our friend Buddy Zeaglar, Executive Director of the TLL Temple foundation, who was a key member of an early leadership meeting, who wrote the first "My Story", and who provided emotional and financial support for ProtonPals.
Richard told me of the support for the US Veterans in the East Texas and Lufkin area. One key (and welcome) element of Richard's daily treatment in Houston is a motor coach ride funded by the TLL Temple foundation. Charlie's Bus carries veterans between Lufkin and the Michael A. DeBakey VA Medical Center in Houston. Located on Old Spanish Trail the DeBakey VA Medical Center is less than a mile from the Anderson Proton Therapy Center and a comfortable walk.
In one resource article credit was given to three men who played a part in providing the amenity to the Veterans including a Charlie Wilson outpatient clinic in Lufkin. The three men were Arthur Temple Jr., chairman emeritus of Temple-Inland timber, paper and building products company, former Mayor Louis Bronaugh and Congressman Charlie Wilson, whose covert dealings in Afghanistan were the subject of the Tom Hanks movie "Charlie Wilson's War"
It was important to Charlie Wilson that these vets from the Lufkin-Livingston area, with their spouses and caregivers, be transported in comfort. "Scrunching up these guys - many of them pretty big guys - on these little shuttle vehicles is just extremely uncomfortable for them," Wilson told Community Transportation magazine last year. "The idea is to be able to provide both mobility and comfort, which our veterans are certainly entitled to. And the bus needs to go every day, no matter what."
The bus is a comfortable 50-passenger coach with a restroom and capacity for two wheelchair bound passengers and carries 30 - 50 veterans of conflicts spanning World War II to the current wars in Iraq and Afghanistan. Reservations for a seat is on a first come first serve basis and it runs Monday through Friday except for Federal Holidays.
Buddy Zeagler told me that this service has been in place for 10 years with the modern coach being an upgrade replacement in 2006. Almost too numerous to mention are the TLL Temple Foundation's grants for the people of Southeast Texas and the Children's Cancer Center in Houston. Temple Foundation is among the top fifty annual giving foundations in Texas and that's saying a lot when you consider that they are on the list with Susan G. Komen (at the top with $156 million annual donation) followed by foundations like Michael Dell, ExxonMobil, Houston Endowment, Brown Foundation, Moody, etc. Top Giving Foundations: Texas
We thank Richard Pulaski for his service as well as his benefactors in the Lufkin community who get their support from a corporation that started as a single sawmill in 1893. Happy Veterans Day and Happy Thanksgiving.
In Gratitude, Joe Landry
|
|
Fall Class of 2011 Reunion - Camaraderie
| | "Meet and Greet" and
Dinner at Palazzos
Graduate Pals from the Fall 2011 class held a reunion dinner and a "Meet and Greet" session in the Proton Center waiting room on Friday. They traveled to Houston from Lexington, Phoenix, Three Rivers, Kerrville, Sugarland, Orange, LaPorte and other parts of the country.  | | Mark Anderson and his ProtonPals. |
The reunion went on for the whole week as the Pals' schedule overlapped and finished with a Thursday dinner at an old favorite restaurant, Palazzos and then next morning the "Meet and Greet" session. The wonderfully supportive wives prepared quite a table of goodies and to think they did it so early in the morning. Sandwiches, muffins, dips, and the eclair cake baked by "Red" that was "to die for." The ProtonPals and staff from the Proton Center joined in and reacquainted themselves with their Pals from a year earlier. While in this celebration mode they, along with PalJoe, met some men who were just "gonging" out today. (Friday November 30th 2012) Mark Anderson, an alumni from that class, kept the group laughing as he performed his ditty poking fun (sorry for the pun) at his experiences about some of the more intrusive daily procedures in the proton therapy room.  | | "Red" Anderson and Maya Kelsey hold up the words to the chorus of Mark's Ditty |
With the noise and the celebration it didn't look or sound like a cancer center, and we probably impacted the serious proceedings of the day - but then why not seize the moment and celebrate everyone's survivorship and gratitude. Around mid morning Drew Cox showed up and got to see everybody. We wish you well Drew, too bad I didn't get a photo in time for the newsletter. |
| Keep the Wagon Full | Proton Pals Children's Activity Fund
If you happen to be at the Proton Center when one of the children complete their treatment and have their "GONG CEREMONY" it is a
 | | Mad Scientist Day with the Pediatric Patients - supported by the ProtonPals Activity and Toy Fund. |
special event. Since the Fall of 2006 when Anderson Proton Therapy Center started treating children it's been an informal custom to give the child a choice of toys from a full wagon of choices when they completed their treatment. Drew Cox says he got a chance to see several of these ceremonies as well as becoming friends with the children and their parents. To see the excitement in their faces when the wagon filled with toys is brought out is priceless. It turns out this is not funded by MD Anderson Cancer Center but is a custom started and supported by the staff who get to know the children as they are treated.
In the startup years (2006 - 2007) where there were fewer pediatric patients, the gifts were bought through the generosity of the Anderson health care staff. At times the toy fund was replenished with donation from the prostate cancer patients. During his treatment in the Spring of 2011, Drew and Kathy Cox learned from the therapists that new patients were so numerous that the toy fund was running short. So they, along with other prostate cancer patients and caregivers, took the initiative to form a toy fund, one that the ProtonPals can support and give back to the Proton Center. The donations are not an obligation, but if you feel so moved any size donation would be appreciated.
 | | Kelly Wagner, MD Anderson Proton Therapy Center Child Life Specialist |
Ed: I repeated this article from 2011 so you'd have a feel for how the idea became formalized into the "ProtonPals Children's Toy and Activity Fund." See the next article. |
| A Custom Donation Page for ProtonPals' Toy and Activity Fund |
 | Children's Toy Wagon
|
Drew Cox and Dave Stevens worked to set up an easy way for you to contribute to the special fund. In mid-November the MD Anderson Development Office working with the Information Systems specialists completed an individual page for ProtonPals giving to the Children's Toy and Activity Fund. The donations are a recognized charitable tax donation and the link has a section for matching corporate donations. Here is the direct link to the ProtonPal Toy and Activity Fund page.
"Thank you and all the Proton Pals for your efforts to spread some happiness through providing toys and activities for our pediatric patients in the Proton Therapy Center." - Janet McCloskey, Director of Special Programs MD Anderson Development Office.
|
| Prostate Cancer Research Institute (PCRI) Insights | |
Virginia Moyer says, "We Can Do Better"
Editor Says: You betcha!!
Dean Foster, MD, PCRI's  medical director, takes on this year's PSA screening controversy.
In her editorial responding to the controversy Task Force chair Dr. Virginia Moyer summarized the committee's findings with this sentence: "We can do better." We at the Prostate Cancer Research Institute (PCRI), while disagreeing with the Task Force's "D" rating of PSA, do agree with Dr. Moyer's conclusion: We can, indeed, do better.Read Full Text
PCRI supports Rep. Marsha Blackburn in her efforts to pass HR 5998, a bill that would help Dr. Moyer's team resolve controversies like this before they begin. The proposed bill would increase the accountability and oversight of the Task Force (to learn more about the bill and read the full text, Read Full Text You can take a position with us by sending joe landry an e-mail or Dean Foster at dfoster@pcri.org.
|
| Proton Therapy Today | | A New Online Magazine
Proton Therapy Today debuted in late October and is an online site that consolidates helpful articles about the proton therapy community around the web and in news releases. In addition it also carries patient stories and invites you "submit your story".
I'm inviting you to check out the site and read about the follow topics: - Caregiver Stories
- Patient Stories
- Clinical Application
- Proton Therapy Centers
- Scientific meetings and publications
- Technology
- What is Proton Therapy?
|
| The Inherited Gene |
 | | High Speed Gene Sequencing |
A Cancer Risk
Probably you have read that the risk of getting some cancers are inherited and prostate cancer is one of them. Hereditary prostate cancer is rare (about 5%). However, a combination of environment and inherited genes is more common, about 20%.
A professor of urology, oncology and researcher at Johns Hopkins University, William B. Isaacs, reported in the Johns Hopkins 2012 Prostate Cancer Review that he's identified a rare inherited mutation linked to significant higher risk of prostate cancer.
That's the good news. All the genetics research is paying off. Unfortunately it will take much more time and effort because the lead in to the article reads like this. "The discovery of HOXB13 may provide important clues about how prostate cancer develops. It may also help identify those men who might benefit from additional or earlier screening."
With all the "mays", "shoulds", "mights," I think it's fair to say we're all wondering when a noninvasive test will be developed and approved by the FDA. Such a test, would, if developed, tell the doctor whether or not to biopsy your gland and if the cores are positive give him the ability to categorize the aggressive and non-aggressive tumors and to decide on how to treat you.
The big news here, in my opinion, is that technology that's brought high speed gene sequencers have made this possible, more affordable and that test "might" be commercialized soon.
|
| Harvard Medical Prostate Cancer Site |  Web site Provides Basic Information
A relative new web site that provides basic information, a large Questions and Answer section, the latest research findings and expert commentary to help you learn about prostate diseases and disorders. Here are some of the sections:
Visit the site to learn about the publications being sold by Harvard. READ MORE,
|
|
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.
|
|
|
|
|
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.
|
|
|
