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| Issue: # 41 | September/2011 |
September was a busy very month as we were involved with three events relating to proton therapy and prostate cancer. The first was the first National Education Conference on Proton Therapy held at the M.D. Anderson Conference Center which Dave Stevens and I attended. I overheard that Dr. Lee considered the meeting a big success and the talks and papers will be published as book. Many medical directors, managed care professionals, organization representatives, and vendors attended the conference. I learned of two medical professionals who travelled from overseas, one from the Republic of South Korea and the other from Germany. Dr. Lee was the chairman and introduced and led over a dozen sessions over the first day and about half that many in the half day program on Saturday.The proton center was open for tours that Friday evening.
Dave and I were invited to attend the conference so we could stay up to date and report back to you. Dave and I both found, it is such a broad and deep field covering the physics, the biology and clinical treatments that's it's very hard for me to summarize in one newsletter. Especially the biology and oncology for cancers with which I was not familiar. I understand this is common in this field where the number of papers reporting on trials and research is growing exponentially. I'm reminded of a saying used by a biologist whose work I've just scanned.
We are drowning in information, while starving for wisdom. The world henceforth will be run by synthesizers, people able to put together the right information at the right time, think critically about it, and make important choices wisely. E.O. Wilson While I've urged you to gain power by being an informed and assertive patient there will a point where you can't process any more information and must look to and trust your oncologist. This is the guy or gal at the cutting edge who's synthesizing all this information about new technology and results and can make a choice for you. (See my notes below about Andrew Schorr's new book Web-Savvy Patient).
The second major event was the Anderson Survivorship Conference on September 16th and 17th and attended by over 600 persons. This was the third conference for Marcia and me, with Dave joining us for his first. It featured more speakers and national personalities than the year before and the organizers thought it bigger and better.
The third event was Dave Stevens' talk at the monthly Proton Patient's Meeting at the Proton Center on September 22nd entitled "Things You Wanted to Know about Proton Therapy but Didn't Know Who to Ask". The interest was high and attendance also was at an all time high. Patients, wives, significant others, friends as well as professionals from the Anderson campus as well as the local area were in attendance. As in his previous talk Dave had thoroughly researched the medical literature in preparing his 200 PowerPoint slides which his doctor here at the Proton Center reviewed. He most certainly is a high level processor, a person who's more than comfortable in diving in to highly technical journals and books about our medical condition and in 8 short months something of a lay expert in prostate cancer oncology according to his doctor. Our plans are to take one topic out of his work and feature it on the web site and the newsletter.
I attend a few of the popular ProtonPals Wednesday Night Dinners coordinated by Drew Cox. Here I get to make new friends, some who I knew by phone calls or exchanged emails with us and who are here for a consult or treatment. I take some snapshots for you and collect feed back on the work that needs to be done. Photos and news about the meetings and dinners are published on Facebook. Photos
In Gratitude,
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Never Give In, Never Give In, Never, Never, Never
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 | | Winston Churchill |
Winston Churchhill
Inspired by the survivors I met at the Anderson Network Survivorship Conference I looked for an appropriate quote. I hope you like the one below providing you see cancer as the overwhelming enemy. It's from a commencement speech to the Harrow School by Sir Winston Churchill. He was an 1893 graduate of this famous boarding school in northwest London as were many other notable persons including eight former prime ministers, statesmen, two Kings and members of royal families. I suppose in these "darkest hours" of 1941 where Hitler had just invaded Russia that summer, Sir Winston chose to go back to his boyhood school to give a talk and sing the songs which were an important part of the tradition; and considered to be a unifying force. Here's a the famous quote: Never give in, never give in, never, never, never, never - in nothing great or small, large or petty - never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy. Sir Winston Churchill Speech, October 29, 1941 Harrow School. The whole speech is at this link.
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Why Did My PSA Go Up at my 6 Month Check Up?
| That's not supposed to happen is it?
Let's start with the easy answers: Having sex, doing bike/motorcycle/horseback riding within a week of your PSA test. Or taking testosterone supplements or "performance enhancing" herbs to speed up your recovery. Or going to a different lab to have your PSA done. Any of these could be the culprits. You should tell your proton therapy doctor if you did any of these prior to your PSA reading, since he might want to reschedule another PSA test.
OK, suppose you stayed away from those activities before your recent PSA reading. In that case, the medical literature tells us a great deal about PSA readings and patterns after radiation therapy. (Proton therapy is too new to have a significant body of medical literature on this, but it is believed that the characteristics of protons and radiation are similar in this area.) We're also assuming you're not on hormone therapy, where PSA levels respond differently.So why did your PSA go up after proton therapy? Radiation therapy studies show that the radiation can act for a long time after therapy ends, and this is true for protons, too. It can take as long as two years after therapy ends (or even three years in extreme cases) for radiation to kill all the cancer cells in your prostate and to be reflected in a low PSA reading. Part of the reason is that radiation (and protons) kill cancer by attacking their DNA, but cancer cells are vulnerable to these attacks only during part of their cell cycle. Sometimes the effect of protons attacking a cancer cell's DNA is felt only after that cell has reproduced several times but where all of the "descendants" of that cancer cell die without reproducing. Also, prostate cancer cells reproduce slower than cancers in other parts of the body, so that adds more time to the process.So, bottom line, don't expect your PSA to fall like a rock 3 or 6 months after you gong out, based on the medical literature. Keep track of your PSA results and stay in touch with your Proton Center doctor. What if your PSA keeps going up time after time? Watch it carefully if your PSA goes up more than 2 PSA points above your lowest PSA reading after proton therapy and then doubles after that. This could be a sign of trouble, according to the medical literature on radiation therapy. (Example: If your lowest PSA after you gonged out was 2.0, this issue arises if your reading exceeds 4.1, no matter how long that takes. If your PSA then goes up past 8.2 (doubling 4.1), you'll want to get with your doctor as soon as possible; he or she will probably get with you first. A PSA going up like that is an early warning sign that trouble may be brewing. Our doctors here at the Proton Center are well aware of this pattern, and there is a lot that can be done to deal with this situation.) Dave Stevens, September 28, 2011. This FAQ on PSA is from the Urological Foundation and written by Dr. Catalona who specializes in surgery. I would think all of the answers are medically sound although many are in the context of having your prostate surgically removed and not external beam radiation.
Editor JE Landry
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First Proton Therapy National Education Conference
| My Highlights from the Conference
 | | Andrew K. Lee, M.D., M.P.H. |
M.D. Anderson hosted a Proton Therapy Conference on September 9th - 10th, 2011. Dr. Andrew K. Lee, Director of the Proton Therapy Center along with conference directors Dr. James Cox and Dr. Thomas Buchholz planned and convened a very successful conference. The attendance was around 300 with professionals from as far as Europe and Asia attending.
This conference had been a gleam in Dr. Lee's mind for as long as I've known him which is over four years. It was held to update managed care professionals, referring doctors, medical directors, referring physicians and nurses. In a total of 13 talks on Friday and 9 on Saturday the folks in attendance got to hear about advances, current treatment techniques, physics, quality management, and clinical trials in radiation oncology using proton beam therapy for the treatment of cancer. The tumor sites covered in the conference included prostate cancer, lung cancer, esophageal cancer, pediatric tumors, central nervous system(CNS) tumors , lymphoma, head and neck cancers, and gastrointestinal tumors. Read more about the conditions treated at the Proton Center Conditions We Treat
In order to be able to report for the ProtonPals, I asked and was invited to attend the conference. Once there I found that it is such a broad field that it's very hard to summarize in one newsletter. Especially the biology and oncology for cancers that I had not read about.
You can read more about the conference by going to MD Anderson's Cancer Frontline blog and read the summaries written by Dana Lee.
Proton Conference: Day 1 Highlights
Proton Therapy Conference: Day 2 Highlights
What were my "take aways"
Treatment for prostate cancer at the Anderson Proton Center is continually being optimized to deliver more radiation with more accuracy and this makes the Center, in my opinion, the most advanced in North America.
- Many advances have been made since I was treated in early 2007 for prostate cancer.
- Improved localization with the use of carbon fiducials
- Use of a portable ultrasound bladder scanner to maintain reproducible daily setups.
- Use of improved designs (4 versions since 2007) in the endorectal balloons. Soft tipped version now includes lower volume, migration stopper, metal fiducial tip marker and gas release vent.
- Treatment is given on both sides daily (1/2 dose each) for the scatter and pencil beam. I think that makes for better distribution not sure if the term homogeneous applies here.
- Indexable knee-foot cradle proven in X ray IMRT clinics offers good shape to external profile contour and hip bones (shorter cross section). This also removes a hard plastic edge through which to treat.
Other tumor types. - High energy 250 MEV synchrotron accelerator is said by vendor to be medical industry's platform for pioneering advances and well suited for pencil beam scanning and IMPT.
- Spot scanning on Gantry 3 cleared by FDA in 2007 was the first in North America.
- Treating more pediatric patients than any other center.
- Sharing results with other centers as well and numerous NCI clinical trials with Mass General Hospital in tumor types other than prostate.
- The quality and safety measures are very extensive and will be summarized in the next newsletter. I can say that Saturdays are reserve for this work and sometime part of the Sundays are spent running through the standard checks.
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| Anderson Surivorship Conference | Where Cancer Treatment is Headed
The popular medical panel on Saturday morning is a feature of the Conference that everyone looks for and they fills the large conference room. This year it included MD Anderson's Raymond Dubois, M.D. Ph.D. provost and executive vice president; Robert Bast, Jr. M.D. vice president of translational research; and Funda Meric-Bernstam, M.D. professor in the Department of Surgical Oncology. At my first conference I heard Dr. John Mendelsohn, then president speak about the advances in something called personalized medicine. Not a new term but one for me as I learned how this was going to change cancer medicine in a significant way and was being made feasible as more advances were made in molecular and cell research. As an update this year it turns out according Dr. Bast the cost of DNA sequencing is falling fast, being halved every five months. Somewhat like Moore's Law in semiconductor technology, where each year the function on each chip as doubled every two years. Think of the advances you've seen in personal computers and smart phones and carry that over to the area of sequencing technology. It cost $100 million to sequence the first human genome a decade ago and now it's possible it will be done for less than $1000 in the next decade. I saw where one company is offering to do a sequence for you on a personal basis for $5000 by end of next year; but the holy grail as far as price is $1000 for a complete genome. At which time retail use would explode and it would be feasible to sequence each patient who comes into to the MDACC for a diagnosis.  | | Cost Dropping Rapidly |
What does that mean for cancer treatment? Well it will be affordable to sequence every cancer patients tumor and with this information a doctor or oncologist will be able to choose the best method to treat your cancer. As in prostate cancer, it would be wonderful to know if it's an aggressive prostate cancer or if watch and wait is your best option where you would have no side effects. Today for example the oncologist can tell female patients whether they have an the inherited germline mutation called BRACA1 or BRACS2 and whether they are predisposed to an aggressive breast and ovarian cancer. And for some breast cancer patients a test called Oncotype DX, a partial sequence, can be used to assess your chance of having a remote recurrence and if it's warranted to treat with chemotherapy. According to Ray Dubois, M.D. Anderson, it is changing the whole paradigm on cancer treatment. In the past treatments were designed for the average patient using the average dose and expecting an average response based on statistical clinical trials. Well we humans are so unique that some responded well when given the average dose, some had an average response and some did not respond at all, while many experience serious side effects. Bottom line - Medicine is moving away from a one size fits all to a tailored treatment initially at large research hospitals.
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Anderson Survivorship Conference
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 | | Anderson Network Survivorship Conference |
How 12 Million are Putting the "Big C" Behind Them
It was "with conviction and good sense" that I stopped trying to describe the conference and decided to quote Andrew Schorr who wrote about it on his blog. He's a cancer survivor like most of you and has had a long association with M.D. Anderson. He's the host and founder of PatientPower and now author of Web Savvy Patient. Here's a clip from his web site of what he had to say about the growing number of survivors and his take-aways of the Anderson Survivorship Conference. "My point is there are now nearly 12 million cancer survivors. Three of work at Patient Power (one is me, almost 61, one is in her 50's, one is just 18). More and more of us do not have just months or a year to live. We are true survivors. We have to start watching our cholesterol and taking baby aspirins, we have to watch our weight, plan for retirement or manage a fixed income. For the young one, it's plan for college. We have to think about who we might vote for in the next election. We are LIVING! Maybe for a full lifespan, maybe not, but living each day with purpose. Yes, it's true there could be "another shoe" that drops, either a return of cancer or the increased chance we'll develop a new one. Or a side effect of the powerful cancer fighting drugs or the surgery or radiation may bring us down. But little by little our ranks are growing. and further in Andrew Schorr's blog he writes:
For the full article link here.
While at the Conference I picked up a copy of Andrew's book, the Web Savvy Patient and have some brief comments in the article below.
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| Anderson Survivorship Conference |
 | | Barbara Padilla |
Never Give Up On Your Dreams
Barbara Padilla entertained the nearly 600 attendees at the banquet last week with her beautiful voice. Barbara, a professional soprano opera singer, who's from Guadalajara, Mexico came to Houston's M.D. Anderson Cancer Center for Hodgkin's lymphoma treatment at a young age. She had trained in music in Mexico and while in Houston she took full advantage of her time in the city by accepted a full scholarship in UofH Moore School of Music. She continued her voice training and received an MA in 2004. The soprano entered the "America's Got Talent" in 2009 and finished as the first runner up one the judges saying she had the most beautiful voice and should have been the winner. At one time during her lengthy treatment which spanned some 5 years she had a choice to make; a) a radiation treatment type that would have damaged her vocal chords and b) a bone marrow transplant that would not. The audience Friday night so glad she persevered and made the right choice. What an inspiration for the survivors! It reminds me of a stanza from Robert Frost that many writers like to use about a decision point, a road less travelled.
" I shall be telling this with a sighSomewhere ages and ages hence: Two roads diverged in a wood, and I- I took the one less traveled by,
And that has made all the difference." - Robert Frost Barbara continues to tour the country for concerts and will be releasing a first album soon with songs that are accessible to many audiences like other operatic talents have done, examples are IL Divo, Sarah Brightman, and Andrea Bocelli
Andrew Schorr of Patient Power also at the conference interviewed Barbara. You can listen to clip of her songs and the interview here.
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 Are You A Web-Savvy Patient? | A New Book by Andrew Schorr
The Web-Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis
by Andrew Schorr by CreateSpace
Paperback
List Price: $19.95
Our Price: $17.13
Many  of you may have listened to Andrew Schorr's Patient Power podcasts on the Anderson web site where he's covered significant topics over several years. He's a pioneer in Internet health communications and patient education who became a cancer patient and survivor himself. Highly qualified, a producer of national programs, documentaries, and patient education videos. For me this book confirms the work we're doing at ProtonPals and could have served as blue print nearly five years ago. We strive to serve in a narrow area, prostate cancer, while his focus is the complete fields. We do this by meeting most of his guidelines. His book will lead you through - - Practical guidance through objective information.
- Personal, subjective points of view from real patients
- True stories of empowered patients.
Here are three critical tips from the book about how to use the Internet and web when facing a personal crisis. These are: - Use the Internet to find a doctor who's on the cutting edge of your specific condition.
- Find medical facilities where the patients have the best outcomes for your diagnosis.
- Find patient mentors who can share their knowledge
The book is very well organized and easy to read. I recommend it. It is a guide that you can use even if you're a ProtonPal and have used the web resources or our organization. You can if you like check off Tips 1, 2, and 3 and feel assured about your the decision you made. Let's see, based on Andrew Schorr tips, did you make the right choice by joining the ProtonPals and coming to the Anderson Proton Therapy Center for your prostate cancer treatment? - Cutting edge? - Yes, all ProtonCenter doctors are cutting and publishing new work.
- Best Outcomes? - Yes, Anderson Proton Therapy Center
- Patient Mentors? - Yes, ProtonPals with Pal-to-Pal support
If you're not a member of ProtonPals then join to share your knowledge and make it 3 out of 3 for you.
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| Childlife at the Proton Therapy Center |
 | | Ringing the Gong |
Keep the Wagon Full
If you happen to be at the Proton Center when one of the children have their "GONG CEREMONY" it is a special event. Since the Fall of 2006 when Anderson Proton Therapy Center started treating children it's been an informal custom to give them a choice of toys from a wagon full 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 the Anderson Center but a custom supported by the staff who get to know the children as they treat them in Gantry Room 2.
In the previous years with fewer pediatric patients, the gifts were handled through the generosity of the health care professionals in Gantries 1 and 2. At times the toy fund was replenished with an outside donation from the prostate cancer patients. During his treatments this Spring Drew and Kathy Cox learned that the graduating 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 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. Drew asks that the donation be a gift card from Toys "R" Us or Target with the donor's name, patient number (medical ID), labeled ProtonPals and the amount. These should be given to Kelly Wagner the new child life specialist we introduce below. Your gift to this wonderful custom will be acknowledged with a personal note from one of the physicians.
Find out more about what Kelly Wagner does for the children and their families by watching this short video.
 | Kelly Wagner
MD Anderson Proton Therapy Center Child Life Specialist |
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| Houston's Race Walk for the Cure |
 | | 20,000 Plus |
The Gals Know How to Do it Right
There will be probably 30,000+ runners and walkers filling up Allen Parkway in Houston early this Saturday morning, October 1, 2011.
My tag is number 29246 and will be one of the walkers with Lori, my daughter-in-law and her team. She'll be joined by my grandson, her father, and several close friends who have been with her on this long journey. Lori was diagnosed with breast cancer 5 years ago, survived a difficult first year of surgery, treatment, recovery and is now an active survivor and advocate in the Susan G. Komen organization.
In a way she was fortunate to be in Houston and was a recipient of the "right treatment and medicine at the right time." She was treated with Herceptin the very first molecular drug approved for general treatment of breast cancer and one of the "targeted" cancer therapies. The right treatment for the right patient at the right time. We're fortunate that one of the large and frequently maligned "big pharma" companies, Genetech, had the capital and talent to develop this drug. You can donate to the cause by going to the Komen Houston Race for the Cure or to the ProtonPals. Please state your intent we'll get it to Lori and her Team in your name.
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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 take notice that the past newsletters are archived back to May 2009.
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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