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 ProtonPals Newsletter
Am I Cured? |
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Don't Forget
ProtonPals on FB
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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.
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 | | Farewell Endeavor |
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Greetings!
HOUSTON, TX:
Last week we had a convergence of some key events because we live in Clear Lake, Texas about 2 miles from the Johnson Space Center.
The space shuttle Endeavor, perched on top of a Boeing 747 made its final flight over the Johnson Center and our neighborhood on Friday, September 21st. As Endeavor was literally flying our area and over Houston, Marcia and I were watching a webcast of Dr. Ronald DePinho, President of University of Texas M D Anderson Cancer Center make a bold announcement about a new war on cancer with a focused attack on 8 cancer types by six physician- research teams. He calls this the Moon Shot. In the Moon Shot announcement Dr. DePinho evoked John F. Kennedy's famous speech at Rice University 50 years ago declaring that the United States would "go to the moon this decade." One of the Moon Shots is to be able to identify the distinguishing characteristics between a lethal prostate cancer needing treatment and a slow growing prostate cancer that does not require immediate intervention.
Personally since I've started this journey when my brother was diagnosed with prostate cancer, I've been looking for several things from new research and applied science including, 1) a biopsy assay similar to what my daughter had when she had breast cancer, 2) more specific blood serum and non- invasive tests for prostate cancer and 3) effective approaches to drive metastatic prostate cancer into remission forever or at least long periods of time. I am therefore pleased that Items 2) and 3) are Moon Shots projects. It looks like we'll see a tissue test, the Oncotype DX for prostate cancer in the first half of next year and that could diminish the importance of the controversy over PSA screening. See Genomic Health's very recent news release from the 19th.
There appear to be effective drugs to drive metastatic PCa into remission, like abiraterone (Zytiga) and Provenge (sipuleucel-T), Although abiraterone added three years to the line of one prominent metastatic PCa patient, the Libyan Lockerbie bomber, unfortunately for some of these patients the benefit is not as long. As was said in the in one of the moonshot announcements "we have more potential solutions than thoughts of how to use them" and according to Dr.Christopher Logothetis the leader of the Prostate Moon Shot team some of the new drugs could be used in combination or serially with other effective drugs. More about the Moon Shots below. The 2012 annual Cancer Survivorship Conference held at the Omni Hotel on Eldridge Road here in Houston September 14th and 15th had almost 600 cancer survivors in attendance. As one of our ProtonPals put it, "it was encouraging, stimulating and informative." One of the keynotes talks on Saturday the 14th was a medical panel of three experts from MD Anderson with Ronald DePinho M.D., Holly Holmes, M.D. and Karen Lu, M.D. At this session we heard from Dr. Holmes about her specialty, Geriatrics, Dr. Lu about cancer genetics and got a preview of the Moon Shots from Dr. DePinho which was announced a week later. All of us were inspired by the talks given by the cancer patients who fought their way back with the help of MD Anderson physicians, and attained remission in the face of long odds. More about the Conference below.
Thanks to Proton Bob Marckini for pointing out that we have an "excellent MD Anderson Proton Center" in Houston to be joined by one at MD Anderson in Orlando Florida in about 2 years and two more in the Dallas area. Be sure to read Bob and Debbie's BOB Tales for a newsletter that keeps getting better every month. Lupron Legionnaire Dave presented his 8th educational talk to a group of patients and ProtonPals at the Beam News on Wednesday, September 19th. During his nearly two hour slide presentation, Dave covered many topics relating to proton therapy and prostate cancer.
He focused especially on PSA warning signs that our Proton Therapy Center Doctors monitor, after we finish treatment. He also explained why some of us are on Lupron and others are not. More importantly, he discussed some of the common side effects of Lupron. Dave knows a lot about Lupron side effects, since he has had most of them at one time or another while on Lupron. By the way, congratulations to Dave for wrapping up his two years of Lupron last month. He says it could take a year or more before he gets rid of most of his side effects, because he was on Lupron so long..... and he did this while engaged full time in his career as a lawyer and consultant, and had spare energy to work very actively with ProtonPals and the newsletter.
In Gratitude,
Joe Landry and your ProtonPals team.
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| Moon Shots Program Announced |  A Bold $3 billion Initiative
HOUSTON-The University of Texas M.D. Anderson Cancer Center is launching a multibillion-dollar initiative on Friday aimed at reducing cancer deaths over the next decade, saying a flurry of recent advances in genomics and other technologies has laid a foundation for making major new strides against the disease.
The effort, which the institution calls the Moon Shots program, is expected to spend as much as $3 billion over 10 years in a bid to reduce the toll of eight different cancers, and to develop an infrastructure and strategies for collecting and analyzing data that leaders of the effort say will be applied to other cancers as well.
The initiative will range from bolstering prevention efforts to accelerating development of so-called targeted cancer therapies that have already made important inroads against such conditions as breast cancer and melanoma.
Helping to drive the initiative is the plummeting cost of gene sequencing, which is enabling clinicians and researchers to obtain information on genetic aberrations that underlie patients' tumors and match them with drugs that target those anomalies. Other advances, including improved computational power to analyze burgeoning amounts of genomic data and the ability to manipulate genes in laboratory experiments to understand their function, also support the effort.
"It is very rare in the history of science that you have such a confluence of enabling technologies," said Ronald A. DePinho, president of M.D. Anderson. The advances make it possible, he said, to "dramatically reduce mortality [from cancer] in this decade and set the stage for cures in the decades ahead."
![[image]](http://si.wsj.net/public/resources/images/NA-BS623_CANCER_NS_20120920183904.jpg)
Dr. DePinho said that M.D. Anderson planned to contribute its own funds to the initiative, but that the bulk of the funding is expected to come from philanthropic gifts, research grants and revenue from additional cancer patients and commercialization of patentable discoveries the institution makes as part of the effort. The center already has "tens of millions" of dollars in donations in hand to jump-start the project, said Dr. DePinho, who declined to provide further financial details.
M.D. Anderson is among the world's leading cancer centers. It treated about 117,000 patients last year, including some 11,000 who are enrolled in roughly 1,000 clinical trials of experimental drugs and treatment regimens under way at the center.
From the Wall Street Journal Read Full Article
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| Medical Discussion Panel Comments |
 | | Dr. Ronald DePinho, left, speaks with Dr. John Mendelsohn. |
President DePinho's Expert Opinion
- Researchers now understand the biology and major developments in early detection and new tests could come as early as next year.
- He doesn't agree with the USPSTF recommendation of C, essentially against prostate cancer screening.
- He predicts they will go back to PSA testing as a recommendation
- Debates about PSA testing will become irrelevant in a few years
The comments were made in a medical panel discussion at the Conference and in direct response to questions submitted by ProtonPals in attendance.
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| Prostate Cancer Moonshot |  Prognostic Prostate Tissue Test - Oncotype DX
One of the six key Cancer Moonshots is prostate cancer. It is the most frequent cancer and the second cause of cancer death for males in the United States. If found early it is typically treated with surgery or radiation. The challenge in treating the disease is having the ability to distinguish slow-growing (indolent) from the more aggressive types.
MD Anderson's prostate cancer moon shot will apply current knowledge and experience with advanced prostate cancer as well as new knowledge gained from the Moon Shot Program discoveries, to craft personalized profiles of patients' tumors.
Dr. DePinho in an Anderson Survivorship Conference panel said he did not agree with the "D" recommendation to not screen and he believes the medical community will have tests as early as next year which will sort out the difference between the non-aggressive and the aggressive cancers. HIs take was that the tasks force (USPSTF) could have waited rather than dissuading patients with potentially lethal cancer from knowing about it and deciding to have it treated. He predicted that we will go back to PSA screening and the debate will be irrelevant in a few years. The adage from my oncologist Dr. Andrew K. Lee is: "earlier detection leads to less difficult treatment and higher cure rates" or, as he also says "the best time to deal with prostate cancer is the first time."
A NEW ASSAY NEXT YEAR
In a September 18 press release Genomic Health promises to provide a commercial/clinical test to determine the aggressiveness of prostate cancer in a manner very similar to the breast and colon cancer Oncotype DX assay. Once accepted in clinical practice, this should increase the number of men who avoid over treatment for example by surgery by choosing active surveillance. This test is promoted as a valid biopsy system of classification based on six studies involving 700 patients and 700 genes used to select the genes for this test. If this test is similar to the breast Oncotype DX, it could use a smaller number, say 15 -20 gene markers, to determine a score. With the breast cancer test that score of 1 to 100 is used to decide the probability of metastasis and remote recurrence in a 10 year period. Complete results will be presented at 2013 ASCO Genitourinary Cancers Symposium in February. Quoting from the Genomic Health press release
It is expected that in conjunction with the Gleason grading system and conventional parameters such as PSA, age, and physical examination, the Oncotype DX Genomic Prostate Score will be utilized to personalize prostate cancer treatment based on the underlying biology of an individual patient's tumor.
I believe the Oncotype prostate cancer test could be as widely accepted as the breast cancer test and will see wide use world wide; and we're providing the following from the company literature as an example of the acceptance of the breast cancer test.
The company's lead product, the Oncotype DX® breast cancer test, has been shown to predict the likelihood of chemotherapy benefit as well as recurrence in invasive breast cancer and has been shown to predict the likelihood of recurrence in ductal carcinoma in situ (DCIS). In addition to this widely adopted test, Genomic Health provides the Oncotype DX colon cancer test, the first multi-gene expression test developed for the assessment of risk of recurrence in patients with stage II disease and appropriate stage III patients. As of June 30, 2012, more than 10,000 physicians in over 65 countries had ordered more than 300,000 Oncotype DX tests.
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Proton Therapy Worldwide Timeline
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 | | Robert Stone and John Lawrence, Ernest's brother who was an medical doctor, treat a patient with protons from Berkeley's 60 inch cyclotron. |
Photo Shows How "This" Was Experimental
- Berkeley Radiation Laboratory treated the first patient in 1954 and went on to treat 2500 patients over the next 10 years before closing down.
- Harvard treated it's first patients in 1961
- Loma Linda opened its first hospital based system in 1990
- There are 33 centers operational worldwide and growing
- As of December 2011 there were 83667 patients treated with proton therapy.
- There are 10 operating centers and 9 more in the planning stage in the US.
- Proton radiotherapy was the topic of 3000 papers since 1954.
Ed. Note: When your insurance company says this treatment is experimental you can point out that it was experimental in 1954, show them the above picture from the Berkeley Radiation Laboratory and then tell them how many patients have been treated, a very high percentage of which were prostate cancer.
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| Highlights of September BOB Tales |  Another Outstanding Newsletter Bob Marckini, founder of the Brotherhood of the Balloons publishes an outstanding newsletter and it's one I look forward to every month. In September's BOB Tales these were my "take aways" and at the top of the list is an article about insurance company coverage for proton therapy for prostate cancer. - Five insurance wins with descriptions of how it took a lawsuit with Cigna and others who had appeals that took many months.
- Ten Myths about Proton Therapy for Prostate Cancer - will be addressing misinformation about proton therapy, one of which is about the treatment being experimental. See photo above for an experimental treatment.
- New BOB Proton Therapy Blog with timely and newsworthy stories relating to proton therapy.
- Five year recurrence rates at the University of Florida
- A new book "How Doctors Think" by Jerome Groopman, M.D. supporting our message over the years about taking responsibility for your health and working with your doctor.
You can access the newsletter here BOB Tales for September 2012 and if you'd like a copy of the insurance strategies paper request it from Debra Hickey at this email address. Debra Hickey's eMail address
A Gainesville Sun news article on the University of Florida Proton Therapy Center with mention of low recurrence rates can be accessed here One More Reason To Hope.
The new blog by Brotherhood of the Balloon can be accessed here
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| One of the Early ProtonPals |
 | | Carol and Peter Taaffe. |
Peter Taaffe in a YouTube Video
Remember what it was like on your first day in the Anderson or Loma Linda Proton Center? You were in the waiting area with your "deer-in-headlights look." Well I've never had a poker face and five years ago I must have been an easy read because this gracious and lovely woman, Carol Taaffe, took me under her wing while her husband Peter was in the gown room waiting to be treated. She didn't talk about cancer or proton therapy but mostly talked and inquired about things in my life, my children, where we lived, my wife's hobbies. This was Carol, Peter Taaffe's wife. It was one of those times you never forget. Peter has been my friend and supporter and one of the ProtonPals founders from my first days in Feb 2007 and it's high time I paid him and Carol a tribute in the newsletter. I hope you don't mind this personal note since it's it my belief that this is a wonderful example of how those of us who have been helped by Proton Therapy can "give back" by helping others with prostate cancer. Here's a new Youtube video of Peter discussing his experiences with the proton center. |
| Anderson Network's Survivorship Conference |
 | | Joe Landry and Dave Stevens volunteers at the Conference. |
ProtonPals, Scott, Dave and I attended the 24th Annual Conference in mid September. Dave and I are on the planning committee and we were very happy to see that attendance keeps growing and each year the conference appears to be better than the last. This year there were almost 600 in attendance.
The conference included nearly two dozen informative breakout sessions including: - risks and benefits of vitamin and mineral supplements for cancer patients,managing treatment side effects,
- issues of survivorship
- the healing power of journaling,
- making the most of your medicines during cancer care and
- the popular medical panel will present an overview of their research and answer questions from the audience. It includes Ronald DePinho, M.D., president of MD Anderson; Holly Holmes. M.D., assistant professor in the Department of General Internal Medicine; and Karen Lu, M.D., professor in the Department of Gynecologic Oncology and Reproductive Medicine.
The keynote speaker was Susan G. Baker, wife of former secretary of state James A. Baker III and an ovarian cancer survivor treated at MD Anderson, is keynote speaker.
This year we had the honor of having Susan Baker introduced by her husband Secretary of State James A. Baker III who added his own  | | Joe and Scott Stein |
personal story and praise for the Cancer Center. Secretary Baker's history with Anderson is long as his grandfather was a benefactor of M.D. Anderson and deeded the family mansion and land to build the original hospital in Houston on Holcombe Boulevard. PS: It was great to see Scott again and I'd suggest you do what Scott does. Schedule your follow up visit to the Proton Center and travels to Houston at the same date as the conference around mid-September 2013. |
| Living Well Beyond Cancer |
 | | Treatment Completed What's Next? |
There are more than 13 million cancer survivors in the US.
Fran Zandstra, RN, OCN, Executive Director, Office of Cancer Survivorship, University of Texas MD Anderson Cancer Center gave two break-out sessions at the Anderson Survivorship Conference and had overflow attendance in each. They were very interactive and since I can't do justice to the sessions by summarizing it in one or two paragraphs I'll refer you to her slides. Survivorship Handout
Fran as Executive Director h eads up the effort for ten clinics detailed in this section on the MD Anderson website. Once you read her handout and navigate the website you'll see how significant the challenges of the demographics and how they are addressing the issues.
From the Cancer Survivorship Clinics Website
"You are finished with your active cancer treatment and moving to the next phase of your life and next phase of your care. You may find your life returns to what you knew before you had cancer. On the other hand, you may find that physical, psychosocial or financial concerns continue because of earlier treatments. Patients often call this the "new" normal.
MD Anderson's Survivorship Clinics are here to help you develop a plan for your ongoing health care. Each clinic focuses on a specific cancer type, tumor location or treatment [including prostate cancer.]"
To be seen and helped please have your doctor refer you to one of the clinics.
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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 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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