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 A First Hand Resource with Pal-to-Pal Support
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| ProtonPals e-Newsletter |
September 2009
http://protonpals.net
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Greetings!
Thank you for subscribing to the ProtonPals newsletter. If you are a new subscriber please visit our web site and take a look at the newsletter archives where you can see items we've summarized in the past. The Pals Web SiteSeptember was a busy month as we attended and exhibited at the Anderson Networks's annual Living With, Through and Beyond Cancer Patient and Caregiver Conference. We were an exhibitor along with 15 other survivor groups at the conference. The conference coordinator and I had encouraged Dr. Lee to speak at the conference and between a trip to Brazil and the West Coast he took a couple of hours away from his family on a weekend to present an overview on proton therapy to include all the key tumors which are treated at the center. From my perspective there were new facts about the effectiveness of proton therapy in treating prostate cancer as well as the other tumors. As I learned the process continues to evolve over the last two and half years since I was a patient. Bob Marckini, ProtonBob, writes in his October newsletter that the data is mounting about the advantage of radiotherapy over conventional prostate cancer surgery. Bob writes, "if conventional radiotherapy, which deposits 75% of it's radiation on healthy tissue scores that well, imagine how much better proton therapy must be, where 3 to 5 times less radiation is deposited on healthy tissue." BOB Tales Newsletter Last Monday I checked in for my 2 1/2 year anniversary. It had been a whole year since I had a PSA test and sure enough it continued to decrease reaching a nadir now of 0.2 ng/ml.
In Gratitude,
Joe Landry
ProtonPals October 22, 2009
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Survivors Conference
ProtonPals at Anderson Survivors Conference
 With a lot of help from many persons we exhibited and represented you (the ProtonPals) at the annual Anderson Survivors Conference. We did this by putting together an exhibitors table with a two large banners and a wide screen slide show of the proton treatment process. Here you see from right to left, my wife Marcia who's also my artistic consultant and me speaking with Laura Hearn the Conference Coordinator for Volunteer Services at MDACC. Laura made all this possible for us. Dr. Andrew Lee, John Styles, Jr., CEO of the Proton Therapy Center and Lina Tang gave us the best support in supplying the Proton Center promotional materials for the many interested visitors, including some gimme - proton center cozies. Ban Capron contributed the large ProtonPals poster(not shown here) and promotional materials. Richard Beck, a Houston resident and one of Pal-to-Pal men listed as a contact featured on our site met us after work on Friday and spent that evening and Saturday with us. We attended the banquet Friday night with a great humorist, and then attended Dr. Lee's presentation on Saturday afternoon. Some of the strongest interest came from the internal MDACC departments who had not heard about ProtonPals or those who wanted to know more about proton therapy. There were many other survivors' groups at the conference, one of which made arrangements for two talks on proton therapy. This was from the very large and active Houston Asian Cancer Coalition Group.
We like to officially thank, Laura Hearn, the Program Coodinator for Volunteer Services and Debbie Schultz, VP of Volunteer Services who made our first major outreach effort possible. They also ran an excellent Conference attended by upwards of 400 persons.
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Anderson Fall Fund Campaign? Dedicate Your Gift to the Proton Center
Did you get a letter from M. D. Anderson Cancer Center about the annual fall fund campaign? If you going to contribute you can dedicate your contribution to the Proton Therapy Center where it will support research in new and more effective therapies for all tumors. In the donation form there's a place to write in "Please use this gift for: Proton Center Research Fund". |
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Jess Just Finished! What A Testimony to the PTC Staff.
Jess's Trophy
I just finished my 38 proton treatments at MDA. In a nutshell, I felt nothing
during treatment, had minimal side effects, and hit the gong with pleasure and
gratitude on the final day.
I had four Hormone shots, one month apart,
and took daily Casodex pills during the first month. I had, and still have, hot
flashes 4-5 times per day lasting about one minute. All women find this
hilarious. The doctor tells me this will wear off in 2-3 months. I might get
tired slightly easier and my wife claims I'm grouchier, but both of these
effects are very small. I started the Hormone therapy two months before
beginning protons.
I didn't feel anything during proton treatments, but
there were some minimal urinary side effects. Frequency, urgency, and control,
all became more difficult as treatment progressed. Initially there was some
burning during urination, but two cranberry pills taken each day solved this
completely. Some of my co-patients took Flomax to control these side effects and
reported good results. My problems never reached a level of difficulty that
required Flomax, although I got a prescription and had some on hand just in
case. Incidentally, both Flomax and Casodex are expensive, but are available
online from Canada at about 1/3 the cost in the U.S.
I cannot say enough
about the attitude of the staff at MDACC Proton Therapy Center. In a word, it is phenomenal! This
attitude makes what could be a dreaded ordeal into a picnic. From the very first
day, you become a member of a family consisting of the entire staff and all your
co-patients. It is truly a unique experience for which we have the utmost
gratitude and appreciation. Such things cannot be bought with money. The techs
sign and give you the plastic beam filters made for your treatment when you
graduate. I made a frame for mine and display it on my desk as a reminder of
good things. (picture above).
Another use is as a jello mold but you'd have to be a ProtonPal to get it. Joe L.
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Women Against Prostate Cancer
WAPC is a New National Organization for Women
I've been asked more than a few times, "What about the wives?" Usually the wife attends the support group meeting and also waits patiently every day while the husband goes in for treatment. Regrettably I've not been able to recruit anyone who would write an article or two from the wife or partner's point of view. But the good news! I found a new site that should help fill it the gap. The national organization Women Against Prostate Cancer has an excellent web site for what looks like an large organization helping women. It was founded by Betty Gallo widowed in 1994 when Dean Gallo, New Jersey congressman, lost his life to prostate cancer at age 59. The organization's mission statement - " WAPC is a national organization working to unite the voices and provide support for millions of women affected by prostate cancer., and their families. WAPC advocates prostate cancer education, public awareness, screenings, legislation, and treatment options." Women Against Prostate CancerThe site is a starting point for other resources as well, for example on the topic of sexuality for survivors and caregivers. Here's another "take away" from the work done by WAPC. In a testimony presented by Theresa Morrow on behalf of Women Against Breast Cancer in Bethesda in May of this year Ms. Morrow spoke of the gender disparity in the men's health area.
programs. In research the difference is over 12 to 1, and for prevention and control the disparity is over 20 to 1.
- Funding for gender research at NIH includes
$ 4,376,000,000 for women's health (breast cancer, cervical cancer, ovarian cancer, and "women's health")
And $345,000,000 for men's health (prostate cancer)
- Funding for programs at the Centers for Disease Control and Prevention
$ 309,486,000 for breast and cervical cancer
$ 13,243,000 for prostate cancer
Please keep this disparity in mind when you speak or write your political representative about reimbursement and research support for prostate cancer.
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Over Detection of Prostate Cancer
It's is a Small Issue in Context of Decreasing Mortality Rates
Dr. WIlliam Catalona, Northwestern University School of Medicine does a thorough analysis of the current data that's being tossed about how prostate cancer is over detected. He says over detection is a small issue and much lower than being cited in the articles. More like 5 to 10 % instead of 60% being cited. When you put this in in the context of decreasing prostate cancer
mortality rates and with appropriate, effective, and high-quality treatment it's a very small issue. The link will take you to a 45 minute slide show that I think is well worth the time. Write to us and let us know what you think. Multimedia Presentation SEWARD, AK, USA -
Presented by William J. Catalona, MD at the 107th Annual Meeting of the AUA -
New York Section - August 19 - 26, 2009, Seward, Alaska, USA Dr. Catalona's Video Article
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Pack your own Parachute Why Being Informed is Important
Recently I was speaking about one of our group who'd just been diagnosed with prostate cancer to my Bruce. As Bruce and I talked about options, his perspective about  deciding radiation over surgery was as he said, "You have to pack your own parachute". It struck me that this is a good metaphor for what we're doing as we process shocking news, get more information and second opinions, consider our alternatives and share our outcomes and ways of coping. The term, Pack Your Own Parachute, coming from the military was used extensively in 1987 when a book was titled about how to survive mergers, takeovers and other corporate disasters. Ernst and Young used the term in referring to retirement planning. Charlie Plumb, a pilot POW from the Viet Nam days and a motivational speaker uses the metaphor extensively and literally as he talks about who packed his chute on that aircraft carrier that day that he bailed over North Viet Nam. Charlie Plumb As you view Charlie's video clip he'll say. "How's your parachute packing coming along? Who looks to you for strength in times of need? Remember there are special persons who are helping you pack your chute and who provide you encouragement you need when the chips are down. Perhaps it's the right time now to give them a call and thank them for packing your chute."
Insights - My gratitude to my parachute packers. Your ProtonPal, Joe.
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National Panel Stresses Early Detection
PSA Testing has Saved Thousands of Lives
NCCN Stresses Importance of PSA Testing in High-Risk Men
The National Comprehensive Cancer Network (NCCN) recently updated the NCCN Guidelines for Prostate Cancer Early Detection incorporating the results of the recent ERSPC trial that assessed the benefit of PSA screening. The NCCN Guidelines contend that PSA screening does save lives when performed intelligently in men at high-risk of developing the disease.Stresses Early Detection The NCCN Article addresses the importance of screening in high risk populations.
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How the Proton Process Has Changed
Seen Continuous Improvement over Three Years
Chuck Merrifield the Proton Center's Supervisor was the featured speaker at the monthly support group meeting. Chuck is the group supervisor of radiation therapists and has been with MDACC for over 15 years. His career included assignments in the radiation oncology groups at the main campus center. His experience includes a whole lot of technology changes including early adoption of IMRT in the US. He was with the proton center start up team in early 2006. His presentation highlighted the active scanning or pencil beam scanning used in Gantry 3 and also including answers to many of questions we had for him. Since early 2007 the "typical" process for treating prostate cancer has added the following. - The number of sessions has been reduced from 42 to 38 by increasing the amount of radiation per each session.
- The amount of urine in the bladder is now determined with an ultrasonic meter and must be within 80% of the level determined at simulation time.
- A new endo rectal balloon was developed with a Houston company to reduce the size, increase the flexibility and now includes a metal fiducial marker at the tip and a stopper to fitted at the time of the simulation runs in the CT scanner.
- The recent adoption of the use of two fiducial markers. These are small carbon seeds inserted in the gland to improve the speed and reproducibility of alignment. Unlike metal fiducials the carbons do not cast "shadows" in the CT scans and more importantly in the proton therapy treatment.
- The pencil beam, gantry 3, was commissioned and started treating prostate cancer patients in June 2009 and is used primarily for prostate. Precision on this gantry is more precise and does not involve the custom machining and handling of the apertures and compensators. Other tumor types will be treated when the software used for radiation planning and control becomes available.
- Patients with Gleason scores higher than 7 and PSA levels higher than 10 are now being treated. When you speaking to a newly diagnosed patients and referring him to the Center it's important that you don't rule them out based on screening levels we knew about in 2007. It always best to say call the center for more information.
Many other items are being considered and a most recent one that came to my attention is: new diagnosed men with prostate cancer having PSAs greater than 10 and Gleason scores over 7 are being considered for treatment at the MDACC PTC. In other words they are expanding the population to include risks higher than intermediate. As you speak to friends and colleagues and refer men to the center, tell them the screening levels have changed and that they should contact the oncologists at the proton center for a consultation. For information and referrals, call toll-free: 1-866-632-4782 or contact me, Ban, Peter or one the Pals who have volunteered to be your First Hand Resource on the contact list. |
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Harvard Medical Launches New Prostate Health Web Site Surgeon Relates How Radical Surgery is Rather Crude and Relatively Blind Procedure
In the patient perspective section on the new site Harvard Prostate Health there's an excellent article by a surgeon and his wife relating how he explored radical surgery, robotic surgery and radiation; and whe he chose radiation. Here are my take-away points from the  article: - if there was positive margin after surgery he would have to have radiation. The level of incontinence with both surgery and radiation is higher than either modality alone. - as a surgeon he had seen standard radical surgery done and concluded that it's a rather crude, relatively blind procedure. A copy of the entire article With Credit to Harvard Medical College
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Illinois Proton Center
Heavy Metal or Men and Their Toys
As Marcia and I have watched our grandchildren grow, first we give thanks always but we also see the effect of genes, especially on the boy children when it comes to hardware. A truck, a tractor or any heavy metal object just "turns on" their energy and you can see the eyes light up when a piece of equipment goes by. Now you know how I felt when I saw this photo of a 19 axle trailer hauling the 250 ton cyclotron to the new Warrenville, Illinois proton therapy center. Read on Large Cyclotron
When it comes on stream in 2011 the Northern Illinois Warrenville Center will be tenth center in the US. We have 6 centers on stream now with 3 more soon to be completed - Roberts Therapy Center- University of Pennsylvania, Hampton University in Hampton Virginia, and Northern Illinois Proton Treatment and Research Center. The Roberts Center is planning to start treating patients in December 2009. Another tidbit. I learned recently that the new "compact or lite" MIT Monarch proton generators that don't require a large cyclotron and form the core of lower cost proton therapy center will not have the power to treat a deep seated tumors like prostate cancer. All though prostate cancer treatment is probably not a candidate there are many other tumors that are not as deep seated and having these mini centers will bring this technology closer and make it available to many other victims of brain, spine and ocular tumors. |
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Post Treatment Trends
PSA Post Treatment Trends
It's been two and a half years since I completed my treatment at the MDACC Proton therapy center. Like me, I'm sure most of you read and used the wonderful book and writings of Bob Marckini as a resource. I did and it was most essential in making my decision and anticipating the outcome. I've been waiting for the day when I would  reach my "nadir" in the PSA response and it was confirmed last Monday the 19th for my annual check up. I'm publishing this for a couple of reasons. It's here 1) in hopes you'll celebrate with me that this treatment worked as we've expected talked about here on the web site and 2) to use as guide to show what you can expect. So in addition to Bob Marckini's charts we can now have our own. Not all patients PSA levels respond the same way and your nadir may level out higher than this. Other Pals have reached low PSA levels much sooner within fewer months of treatment. Those of you who were treated with ADT (Lupron or hormones) saw an almost immediate response in PSA levels as well as testosterone. Everyone is different and it's not the PSA that hurts you or makes you well. It's an biochemical indicator for you to keep your eye on. See the entire one pager on the web site
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M.D. Anderson's Forty Year War
Where Cancer is the Norm
 It's Sunday and a beautiful day outside and I don't want to be writing about cancer just now. I'd rather be on the beach, but now that I've taken to packing parachutes for men who may come along and read our newsletters and our web site, I feel I must share a very moving article with you about M.D. Anderson and cancer. It speaks volumes of what one goes through with have cancer. If you're a patient you have first hand experience with cancer, but as prostate cancer patients you are relatively isolated and in a great environment. Unscathed by evidence of the surgeries and the type of treatment that has to go on at the main center with as the author describes with it's own sights and smells. With the exception of the children who we share the lobby with, we're not among serious cases and there's still much hope. But we all know how being with the children and young adolescents at the center we might feel like the author did, "I can't look at them in the eyes". We put up a good front because we know they are having access to the best care in the world but we know their lives will be probably be shortened and maybe more pain and treatments will follow. Please read "Forty Years' War: A Place Where Cancer is the Norm". NY Times Link A PDF version on the ProtonPals web site Forty Years' WarNOTE: Since these articles are not kept on newspaper's web server for a many weeks I've included a copy for your use with full credit to the writer Gina Kolata and the NYTimes.
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About ProtonPals
Thank you for subscribing to the website and supporting the organization. You'll receive the monthly newsletter around mid month timing it so it will include notice of the monthly support group meetings held at M.D. Anderson Cancer Center Proton Therapy Center. In addition we'll may send out one additional email of special events or news that are of interest to the group. ProtonPals is a group 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" 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.
Support ProtonPals. As a former patient we'd 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 now tax deductible) at the address above. Read more about about it on the website How to Help - Giving
ProtonPals, Ltd. is a 501 (c) (3) public charity
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