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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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Thursday January 31, 2013, HOUSTON, TX:
Greetings!
In January every one gears up for the new year and as a result there will be many events in February and the spring time. Some events are l ocal to Houston, some are national; and don't forget if you're a newcomer, the rodeo comes to town on February 23 with a line of performers and major competition. Learn more
On February 19th, the president of University of Texas M.D. Anderson Cancer Center, Dr. Ronald DePinho, will give a talk at an annual Integrative Medicine public session held at the South Campus Research Center. It's one we look forward to every year and it has typically hosted many notables, like the late Dr. David Servan-Schreiber, Dr. Dean Ornish, and David's brother Franklin Servan- Schreiber.
The founder of a network of proton therapy advocates, Robert (Proton Bob) Marckini, has a jam packed newsletter this month. A key issue with Bob and all of us has always been truth and justice, especially when not reported by the national media; and this month he has an extensive article about how another government funded study gets it wrong and how these studies should be conducted to be creditable. I'd recommend you subscribe to the Brotherhood of the Balloon in addition to the ProtonPals and you'll be well represented in the network of advocates.
As many of our readers know, at the risk of dissuading some newly diagnosed men, Ban, Dave and I've focused on side effects a bit more than other sites. If you're a new reader, I hope you are not turned away by our writings or by the national press when side effects are discussed. Prostate cancer is a serious disease, or as one should say deadly, and you should know as much as you can about it. A few days after you receive the newsletter we'll be updating two of the "one pagers" about effects on Urinary or Bowel functions to reflect reported data in place of anecdotal examples. QOL Results from Dr. Andrew Lee's Presentation
Network of Advocates In one of his interviews Robert Marckini talked about one of his early goals was to set up a network of advocates. I like that concept and wish I had thought of it; a and that we ended up with in the ProtonPals. When we started the ProtonPals, I thought of it as a community who would share and support each other and new patients who chose the same path. I think he's certainly done this as he's worked with the Houston Proton Center Dr. Lee and the ProtonPals. I've leaned on Bob over over the years as I was learning about proton therapy and the Pals organization and as time goes by this networking has increased. I haven't asked him but could say, even though our focus is a little different, that he seeded this node of the network.
This month we've been befriended by a guest writer who prefers to be known by her maiden name, Lily Swann. She writes about new technology that promises to deliver proton treatment beams from a very compact system. In almost all the existing centers, the technology to deliver proton therapy requires a large infrastructure and typically stands alone from hospital. The size of the infrastructure is changing although the science to produce a precise beam of high intensity protons is taking a long time to prove out. We've waited for over six years to hear whether the single vault system built by Mevion has been approved for proton therapy treatment at Siteman Center at the St. Louis Barnes Jewish Hospital. This year should see two more one room Mevion systems approved to treat patients in the US. Another single vault systems was installed and is being commissioned at McClaren Health Systems in Flint Michigan. Lily Swann writes about recent developments that will further reduce the size and cost of delivering proton therapy.
In Gratitude,
Joe Landry
January 31, 2013
Houston, Texas
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| Social Networks for ProtonPals |  "Like Us"
ProtonPals board members consider social networks like Facebook, Twitter and YouTube to be important tools for sharing information about our organization and most importantly for sharing information about prostate cancer and it's treatment. We use these tools in an effort to facilitate the continued friendship between patients and contacts; your ProtonPals who were in your class. Also we have others who have important lessons learned to share can report about their life after radiation treatment.
It's evident that the University of Texas M.D. Anderson Cancer Center considers it an important tool and since the Center has been an early adopter of this new technology. We've paced our adoption of this Facebook more slowly to match our members adoption rate.
Anderson has put a set of guidelines in place for their employees and volunteers here M.D.Anderson Social Networking Guidelines for Employees and we'll have one before the end of February. In the meantime consider that the networks are very public search-able and almost everything you post is publicly searchable. Please exercise discretion thoughtfulness and respect. Transparency is the key and always identify yourself and never give specific medical advice. Take it off line and private or refer the patient to his doctor.
Here's a partial list of Social Media channels as an example as to usefulness of this technology..
MD Anderson Social Media Channels (Not a complete list)
Twitter
ProtonPals Social Media Channels are:
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| Proton Therapy Center has an Additional Owner |  Chinese Company Acquires 20% Stake in M.D. Anderson Proton Therapy Center A Chinese company, Concord Medical, has acquired nearly 20 % of indirect ownership of the University of Texas M.D. Anderson's Proton Therapy Center. Read More
Beijing-based Concord Medical Services Holdings Ltd. (NYSE: CCM) said Thursday it acquired a minority interest in the Proton Therapy Center's general partner and facility manager. The all-cash deal is expected to close by the end of the year, and the purchase price was not disclosed.
While this does not affect M.D. Anderson's ownership position and it makes Concord Medical the second largest owner of the Center, after M.D. Anderson. As the deal closed in early January, Concord Medical joined the center's advisory committee, as well as the board of directors of PTC-Houston Management LP, the general partner of the center.
As of September 30, 2012, the Concord Company operated a network of 134 centers with 75 hospital partners that spanned 53 cities and 24 provinces and administrative regions in China. Under long-term arrangements with top-tier hospitals in China, Concord Medical provides radiotherapy and diagnostic imaging equipment and manages the daily operations of these centers, which are located on the premises of its hospital partners. The Company also provides ongoing training to doctors and other medical professionals in its network of centers to ensure a high level of clinical care for patients. For more information, please see
One source said that although the deal does not involve clinical and technical exchanges or transfers, Concord can report that they have partnered with M.D. Anderson in the ownership of a proton center. In fact recently reported that they would invest in and operate two proton centers in China, adding that this equity transaction with PTC-Houston will give it the expertise and knowledge needed to operate the Chinese centers. Read more
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| National Proton Conference |  First National Conference February 11 -14
The National Association for Proton Therapy, in existence for over 20 years is having it's first annual conference in Washington DC. NAPT is an organization established to promote education and public awareness of the benefits of proton therapy.
Many of the leaders in the proton therapy field will be participating and attending NPC2013. The organization of member proton therapy centers has been in existence for 22 years and Leonard Arzt, the Executive Director, organized the first national conference.
Many of the world's experts and renown physicians will be attending and presenting talks and papers. Our own University of Texas M.D. Anderson Cancer Center's Dr. Andrew K. Lee will be moderating a panel discussion on patient success stories and long term outcomes along with Proton Bob Marckini. An overview of proton therapy clinical trials and studies will be presented led by Dr. Carl J. Rossi
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| ProtonPal to ProtonPal Education at Beam News Meeting |
 | | Tai Ly and Dave Stevens. |
By the Lupron Legionnaire in Chief, Dave Stevens
Meeting on Wednesday, Feb. 13, at 10:00 am to 11:30 am.
For almost two years, Dave has studied many medical articles on various aspects of Prostate Cancer and given 9 previous slide presentations which he has reviewed with his doctor beforehand. At the Beam News Presentation in the Large Conference Room at the Proton Therapy Center, Dave will share his experiences with proton treatment and being on Hormone Therapy for two years to treat his Gleason 9.
Dave has 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 He plans to answer as many of the following questions as time will permit:
- What warning signs should I be on the lookout for about my PSA after finishing Proton Therapy? What if my PSA goes back up after I have had Proton Therapy? Does it mean that Protons did not work?
- What if my PSA goes up, but my testosterone stays down?
- For the past few years, my PSA was pretty flat, but now it is going up. What does that mean? Is it possible for my PSA to go up years after my proton treatments?
- Over 200,000 men are diagnosed with prostate cancer every year. What percentage of them have their PSA go back up enough that it's called "PSA Failure"?
- How long does it take for the protons to kill the cancer? What if they don't? What is the "Plan B"?
- What if my cancer spreads to another part of my body?
- Does it matter what my Gleason score is? Is there any difference between a Gleason 7 (4+3) and a Gleason 7 (3+4)?
- My doctor wants me on hormone therapy, but I don't like what I've hear about side effects. What's the benefit of hormone therapy?
- If Proton Therapy kills the cancer, why do some men have to have hormone therapy?
- Are there any side effects from Proton Therapy after I've "rung the gong"?
- 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?
- I finished my six months of Lupron two weeks ago, but I still have my hot flashes and the other side effects. Is something wrong? Am I going to be having hot flashes forever?
- I know MD Anderson has a great reputation. What do they do here at the Proton Center that's different from what goes on at every other proton facility?
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| Treating Fatigue while receiving Treatment | Is There a Cure for the Cure?  As the years go by we collect stories about how some of our friends are not quite so fortunate in how they responded to the radiation treatment. A point Dr. Lee makes is that the percentages of side effects are very low, but as the number of men treated gets larger and larger so the number of men with issues or recurrence necessarily grows. The denominator of that statistic is growing daily. Personally I've had urinary urgency issues that come with age but also aggravated by radiation treatment and fatigue. I'm fortunate in that I live close to the M.D. Anderson Cancer Center and other great facilities in Houston where I learned of a drug called Provigil (Modafanil). I learned of it four years ago during one of the monthly patient meetings at the Proton Therapy Center. In the intervening years that I've been taking the prescription, interest has grown tremendously in this drug and many research programs are underway to determine exactly how it works. It is approved for treating sleep apnea and shift-work disorder but off label it is prescribed to treat fatigue for cancer patients in addition to children with attention disorders. It is a psychoactive drug, behaves like a stimulant but is not addictive. It is said by the doctors to be much more well behaved than Ritalin in treating fatigue and not addictive since it clears the body in 12 hours. At first my prescription insurance argued with me about reimbursement for this relatively expensive drug so I ordered it from India via Canadian pharmacies. Now times have changed, with more reported study results and interest has grown. My company Express Scripts has relented and does reimburse me for the prescribed use. |
| Survivorship Resources this Month | 
DePinho shares vision for curing cancer.
This is an annual session presented by Integrative Medicine Department at the South Campus Research Building auditorium on 7435 Fannin Street. The meetings are very well attended but available at no cost to the community. Please RSVP to reserve your place. For more information and directions pull this flyer at this link "Aging, Cancer, and How We Are Making Cancer History" It's scheduled for February 19, 2013 * 6:00 pm - 7:30 pm.
Social Support: "Like" us on Facebook.
The Anderson Cancer Center Departments were early in adopting the new technology that has swept the world like Facebook, Twitter, YouTube and iTunes. The departments host many pages including these 4 most important ones.
Survivor stories and articles
The articles are written by professional staff writers Sandi Stomberg and Mary Brolley, Blogs by patients Lannie Jones and Justin Ozuna are also featured.
Survivor Event Videos
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| Proton Therapy Mythbuster Series | |
New Look to the Brotherhood of the Balloons Web Site
You've probably discovered Proton Bob's website and Robert Marckini's book, "You Can Beat Prostate Cancer and You Don't Need Surgery to Do It" before you found the ProtonPals; and frankly I'm completely supportive and have common goals with the BOB organization which center on Education. If fact we modeled our approach on Bob's and did it because we had no data nor did I have readily accessible anecdotes about the patients at M.D. Anderson Proton Therapy Center when I started looking for potential treatments.
Over the intervening years since November 2006, I've turned to Bob and his daughter Debbie and a Houston BOB member for advice. On one recent occasion, I've learned that, as he predicted, you don't want to develop and run a forum because of the ill behavior of some internet users. At one point I had 11,000 hacker entries with over 40,000 robot generated comments in our bbView forum and it made me wonder if the site was being used as a cover to pass untraceable messages. Working over the last few weeks, I've seemed to be able stem the tide but it's made it more difficult for users to register. Security comes with a price.
There are many interesting areas on the updated BOB site including testimonials from 130 patients as well as a project Bob started towards the end of last year, The 10 Myths About Proton Therapy.
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| A Custom Donation Page for ProtonPals' Toy and Activity Fund |
 | Children's Toy Wagon
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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.
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| Meet Our Survivors |  In New Survivor Stories and TestimonialsRick Trevino's story has been on the web site for several months but you may not know the rest of the story. While he was deployed in Kuwait, Rick's wife Delia entered a local contest and ended up winning the grand prize. A new Camaro which she gave to Rick. Just the pick me up he needed and Delia says his customized licensed plates read "PROTON".
 | | Rick Keller |
Read on for Rick Keller's story.
Gerard First
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| Proton Therapy Could be Made More Accessible by Pulsed Lasers |  An Article by Guest Writer Lily Swann A recent report published by the SLAC National Accelerator Laboratory indicates that we might be one step closer to a tabletop proton accelerator for use in medical therapy thanks to the work of German physicists in Munich. The physicists' system is based upon a compact laser that shoots light pulses at a diamond-like foil, producing bunches of protons that have energies of around five megaelectron volts. They have demonstrated that their device delivers doses of radiation to cells that are similar to the doses produced by larger conventional proton therapy systems. More Accessible Treatment A tabletop proton accelerator could enable medical professionals to provide help for people with cancer at a lower cost, as the current method for delivering proton therapy involves the use of an expensive therapy centre. Tabletop accelerators would be a cheaper resource for cancer patients, making treatment more accessible. The physicists used a tabletop laser that delivers thirty femtosecond pulses to create nanosecond proton bunches delivering single-shot doses of up to seven gray to living biological cells. This is equal to a peak dose rate of seventy-nine gray per second over a one nanosecond interval, which is a dose that is sufficient for radiation therapy. Laser pulses with 0.4 joules of energy were focused to a micrometer spot, yielding an 8 x 1019 watts per square centimeter peak intensity. The beam was utilized in order to irradiate twenty nanometer and forty nanometer pieces of diamond-like carbon foil. Hundred-Fold Higher Proton Luminosity According to Jörg Schreiber of the Ludwig Maximilian University of Munich, who was one of the researchers responsible for the project, the nanometer foil enabled a hundred-fold higher proton luminosity when compared to standard micron-thick targets. The beam line included a quadrupole doubled magnetic lens that was inserted behind the diamond-like carbon foil in order to focus the protons at a distance of 1.2 meters. The researchers placed a circular aperture eight hundred and ten millimeters from the target. It was in front of a dipole magnet that deflected the protons downwards, avoiding irradiation of the cells by X-rays that were created when the laser pulse slammed into the target. The beam line was evacuated and the proton beam left the vacuum through a window made of a polyimide film called kapton and entered a customized cell holder in order to irradiate living cells. Similar Relative Biological Effectiveness The physicists exposed single layers of cervical cancer cells to protons created in a single shot. Radiochromic film behind the cells was used in order to measure the resulting dose distribution. The fact that cells were damaged by the protons was confirmed by utilizing a chemical assay that detects broken strands of DNA. The researchers used this information to work out the relative biological effectiveness of the dose and observed that it was similar to the relative biological effectiveness of conventional proton beams at comparable energies. Implications of the Physicists' Research The physicists have stated that their work highlights the potential of small, high-repetition-rate lasers for producing intense pulse protons that contain a relatively small quantity of background radiation. They say their research is aimed at making proton therapy available to more people, thus improving the options available to a greater number of cancer patients. According to the National Association for Proton Therapy, proton beam centers can cost in excess of one hundred and twenty-five million dollars. Reports have indicated that the price of providing proton therapy is over double that of other radiation-based cancer therapies. The study by the German physicists could mean that cheaper means of providing cancer patients with proton therapy will soon be available, enabling more people to make use of this therapy and increasing the options that are available to people who have contracted cancer. Critics of proton therapy often cite the high costs that are involved as a reason that they favor intensity-modulated radiotherapy or other forms of treatment. The costs have even been used as a reason to oppose facilities being constructed in the past. Perhaps when tabletop proton accelerators are perfected and enter mainstream use, these people's opinions of proton therapy will become more positive. The work of Schreiber and his colleagues could signal a new chapter in the use of this type of therapy for treating cancer patients. |
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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 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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