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Mark Arranges a ReUnion
Biopsies are Normal but PSA Rises
Ronald DePinho KeyNote
Changing the Perception on Treating Cancer
Let Your Light Shine
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Issue: #66September/2013
"The Autumn Leaves of Red and Gold"
September 30, 2013, Houston, Texas



In last month's newsletter it was easy to forecast that September would be a busy month for us after the summer vacations. What I didn't know was that a lot of the work ended up compressed in the few days of the month. One reason why the news letter is going out late. 

During the month and on the 25th,  Dave Stevens gave another of his presentations entitled "MORE Answers to Questions on Proton Therapy topics hard to find information about." to a relatively large prostate patient group at the Proton Center, on Friday and Saturday we participated in the well attended 25th Annual Anderson Survivorship Conference where we serve on the planning committee, I was able to get a door prize in ProtonPals name approved and produced in time for the Conference, while at the conference Dave facilitated a breakout session in each of the 4 clusters, while I coordinated the recruitment of a Facilitators and a Partners for each of the 28 breakout sessions in the weeks leading up to the conference. Drew continued his volunteer work, coordinating the Wednesday night dinners and arranging a reunion for Mark Anderson's class.

 

It wasn't all work and no fun. We were able to attend the keynote talk by Siddhartha Mukherjee, M.D.,Ph.D. a cancer researcher and oncologist. Sid wrote "The Emperor of All Maladies: A Biography of Cancer" which traces the factors that have influenced the hard won advances in cancer treatments since the early part of the last century. Dr. Sid is a hematologist and oncologist by training and his current work addresses links between normal stem cells and cancer cells and it was fitting that he was speaking to survivors at an institution which does more stem cell transplants than anywhere else. His book was on Oprah's Top 10 Books of 2010 and won the Pulitzer Prize from general non-fiction.  It also won the UK Guardian First Book award of £10,000.

Christine Butterfield Jazz Singer at Conference 2013
Christine Butterfield

At Friday's evening's banquet we were entertained by the most talented and beautiful Austin-based Christine Butterfield a jazz singer and a survivor of a serious but cured brain tumor.  In between songs she told of her story. A young mother of a two year old, extremely fit and health conscious she was struck with the most severe headaches and nausea while on a ski vacation in Breckenridge. Snow storms are great for skiing but really catastrophic when you  need to get out of Breckenridge for a cat scan and then to a top hospital for an emergency craniotomy. Read how she traveled to Houston to be operated on at the Brainsuite at MD Anderson

Life after brain cancer: Austin singer back at the mic

"Being treated at MD Anderson was the silver lining for me," she says. "I kept thinking, what a privilege I get to be here. These are the best and brightest, and I send them prayers of gratitude,"  Christine Butterfield. 

 

 On the following Conference morning, a popular medical panel presented an overview of their research and answered questions from the audience. It included Ronald DePinho, M.D., president of MD Anderson, Jeffery Gershenwald, M.D.,professor in Surgical Oncology; and Dr. Michael Keating, M.D. professor in the Luekemia 

 

As the conference finished up with a breakout session entitled  "Should I tell my family and friends to continue PSA screening?", lunch and basically the end of the formal program,  the Conference ended with a real cathartic session led by the Drum Cafe, a group of team building experts. Everyone who wanted a drum could have a drum to beat on while shouting chants and affirmations.  

 

One of the highlights for us happened when we gave a photo printed on 20 x 24 inch museum framed canvass as a door prize, all in the ProtonPals' name. The image is the theme I've been using on the tee shirts but now with approval to use the M.D. Anderson brand logo on the print. The message "We Gave Cancer the Boot" was supported by what Ronald DePinho said on the previous day to Christine Butterfield in his introduction at the banquet, "We'll kick cancer's butt." Easy for him to say, but I didn't even try to get approval for the sentiment in that phrase. One of the attendees, Susan S., a 6 year breast cancer survivor won the door prize and it turns out she loved it enthusiastically. She had numerous photographs taken of her with the canvass and she noted to me that her husband was a city "cowboy" and he would love it also. 

 

Also in mid September I got together with a most remarkable man and one of the most consistent financial supporter of the ProtonPals. David M. Brown, Ph.D. from Fayetteville, Arkansas, was in Houston on Sept. 14 - 16th for his 4 year follow up and although we had never met we agreed by email to get together on Sunday after the Texans had managed to beat Titans. At a meal in one of Houston's grills we started a 3 hour conversation about him and his most illustrious history, his achievements and his hobbies. Like many of us he's interested in this thing called cancer from a perspective broader than just prostate. Like some of us, his family has been impacted by other tumor types and he wants to stay up on new developments. 

 

In Gratitude,
        Joe Landry 

 

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Class Reunion at Canopy October 30 - 5:30 pm
Mark Anderson Proton Ditty 2
Mark Anderson at his first Annual Reunion.
Reunion at Canopy 
Mark and Red Anderson with the Fall 2011 Class wish low PSAs to all their classmate friends and want them to know they are planning a two year reunion of around Halloween in Houston.
The plan is to hold a dinner at Canopy on Wednesday Oct 30 at 5:30, and a costume get together/reception at the Proton Center on Thursday the 31st. Please contact and RSVP Drew Cox. 
 
If you weren't in Mark's class but you live in Houston or in town for a a follow up at the Clinic please plan to join in and meet everyone. 
 
 Mark Anderson, now living in the Texas Hill Country, Kerrville, Texas kept his "class" entertained both in the Proton Center dressing room and at restaurants for the Wednesday dinners when he was in Houston. He usually brought his guitar and his bag of gags for us, and he and his wife Red had a skit for us on every Wednesday. Here's Mark rendition of Proton Ditty 2.
 

How do you Diagnose Prostate Cancer?
Bill Brown, Electrical Engineering Department Head and Sheriff's Deputy.
Biopsies are Normal but PSA Rises   
How would you like to have a PSA that climbed from 9 to over 25 over a five year period, but no cancer showed up after a half dozen biopsies? Now that's a tough problem! Bill Brown, one of our Proton Patients had that happen to him. Soon, we will be posting his story on the Proton Pals website. Here are some excerpts:

 

 "I had been dealing with prostate issues since 2003 when I had my PSA checked for the first time and it came back at 9.2.  Since then, I have had my PSA checked every 6 months and it continued to rise.  Along the way, I've had traditional biopsies performed at least 4 times and maybe as many as 6 times (I've lost count).  In any case, between December 2007 and June 2008, the PSA jumped from about 17 to over 25.  My doctor and I decided on another traditional biopsy plus TURP surgery (see description below).  These procedures were performed on August 5th at the University of Arkansas for Medical Sciences in Little Rock. . .

 

"[T]he doctor called me with the biopsy results.  The 12 biopsy samples taken in the traditional manner (rectally) were negative.  However, the prostate material removed via the TURP procedure was positive.  The bottom line is that I have been diagnosed with prostate cancer.  However, it is possible (hopefully) that the TURP surgery I had last week got rid of it. 

 

"In consultation with my doctor, a decision was made to wait until December 2008 to see if the PSA changed due to the surgery. That PSA test was 13.5, down from the 25.3 reading in June 2008.  However, the TURP biopsy performed in June yielded a Gleason number of 6 for me. 

 

[Bill was accepted by the MD Anderson Proton Center in January, 2009, and started his six months of hormone therapy a few months before beginning his treatment. As a result, his PSA decreased from 13.5 to 0.8 by the time he started the radiation in July, 2009. Bill finished his treatments in mid-August 2009. Bill was treated on Gantry 4. For those of you treated on Gantry 3, you'll be interested to see the difference with Gantry 4. Here is how Bill describes it:]

 

"The total dose for the entire treatment (38 irradiations) is 7600 CcGE (or about 76 CGE).  I am irradiated through the right hip by a pulsed beam that actual implants protons for a total of 2-3 seconds, rotated and irradiated through the left hip for a total pulse time of 2-3 seconds.  Immediately before each of the two irradiations, custom machined inserts are placed in the beam path to form the beam properly for me. 

 

"These inserts are of two types (Lucite and brass).  There is a single Lucite plate, called a compensator, and 3 brass plates per side.  The Lucite is about 2 inches thick and the brass plates are about ¾ inch thick each.  The compensator and plates are about 8-10 inches square.  They are machined in the center to the shape of my prostate profile.  The brass plates stop the beam from hitting me anywhere except where the center is machined out.  The Lucite plate compensates for differences in body mass as a function of position.  I get to take the Lucite compensators home with me when I'm finished.  They do not release the brass plates because they are radioactive with a half-life of about 3 months so they have to be stored for this period of time.  I think that they are recycled once the radioactivity drops below background level simply because of the cost of brass.  There is a delay between the two irradiations because of the time required to rotate me (this is accomplished by rotating the table) and insertion of different beam forming inserts for the second irradiation (interestingly, because of where the prostate is located, the profiles from the left and right sides are different. 

 

"[Proton Therapy] is not an inexpensive process, but it has a success rate equal to having ones prostate surgically removed, i.e., almost 100% effective.  However, surgery results in impotence in one out of two patients and incontinence in one out of three patients.  Of course, a significant number of patients suffer both. The incidence of these two "permanent disabilities" for proton therapy patients is 3-5%, which are by far the best odds of any of the available treatments.  This is obviously a huge difference and primarily the reason I chose proton therapy over the other treatments.  

 

"Believe me when I say that the therapists who actually perform the treatments don't just have a job or a position or a profession.  They, in fact, have a true ministry through what they do and by the way they go about doing it.  I cannot praise them enough.  They are truly angels of mercy.  Finally, we each get to ring the gong (see below) signaling the end of the treatment process and the beginning of a new life without prostate cancer.   I find it interesting that the gong has a crack much like the Liberty Bell.  Maybe this is a subtle message about liberty."

 

 

Bill retired from the University of Arkansas on June 30, 2008 after 31 years of service as a faculty member and was granted the title of Distinguished Professor Emeritus of Electrical Engineering effective July 1, 2008 by the Board of Trustees.  In 2013, he retired from the Washington County Sheriff's Department after 35 years of service as a part time deputy sheriff. Bill is the Pastor of the West Fork Community Church.  He has served in this position for more than 20 years. He's quite an interesting guy, and you will enjoy reading his story on the Proton Pals website. Read more

  

Summary of Ronald DePinho's Talk
Take Aways 
Ronald DePinho's address was strong, confident and full of remarkable facts that I feel are not widely known. He made the case that what drives MD Anderson's excellence is
the size and volume of the organization which builds experience and provides unique options for patients along with enhancing quality and effectiveness of care.  

For the fiscal year 2012 these statistics give an understanding of the size and volume. There were 115,882 total patients served, 35, 614 new patients served, 1,281,489 outpatient visits billed, 18,937 surgical operations, 130,304 radiation therapy treatments and 127,961 chemotherapy treatments in last years service.  

I left the meeting feeling like the organization was going to be better and stronger in the coming years. Especially with Ronald DePinho's focus on patient survival. 
  •  MD Anderson is built on the mission to eradicate cancer in Texas, the US and the world.
  • This is a humbling fact but an aging population will make cancer even more common and will drive the increase of cancer to 45% increase in a decade.
  • MD Anderson dedicates it's 20000 employees and 7000 trainees to:
    • FOCUS is on CANCER
    • CORE VALUE - serve the patient
    • CULTURE - Caring and Collaboration
      • Example of collaboration 10 papers per business day and most are in collaboration with other institutions.
    • STRATEGY - Research driven patient care  
  •  More stem cell transplant than any where else
  •  60,000 patients on interventional clinical trials
  •  1/3 of the new FDA approvals were on drugs based on research at MDAnderson

 He wrapped up his talk by saying that "as a nation we're focused on the economics of health care, but we should be focused on the technical knowledge that can be acted on to increase survival at reduced costs."

 

"We (MD Anderson) already have proof of concepts on many treatments in the clinic."

 

REDUCING CANCER MORTALITY IS THE ONLY METRIC that the Moonshots will be measured by or as it was phrased on announcement day "Designed to significantly increase patient survival over the next decade." 

 

Five Reasons this Book is Changing the Perception About Cancer
Five Take Aways

When I got home from the conference, I started to reading the vast 500 page book by Dr. Sid and soon gave up on the idea of summarizing it and developing Cliffs-Notes for you. So I resorted to watching a C-SPAN BookTV video that my wife had watched about 6 months ago, Then while searching for resources I found that Dr. Sid had presented to the Baylor Healthcare System Leaders Development Institute and where someone had developed a summary called Five Reasons Why the Emperor of All Maladies is Changing the Perception about Cancer.  Read more  I hope this helps. You can get the book from Amazon either in five formats paper, audio or Kindle. 
 
A 12 minute video of the session can be seen here Story about Herceptin and Barbara Bradfield
 
  1. Anything is possible. 
    Dr. Mukherjee frequently reminds his interns to think of 1955. This was the year that acute lymphoblastic leukemia (ALL) finally became treatable. It is now 80% curable in children, but prior to that time, was 100% deadly. Before 1955, the consensus regarding treatment was "why bother?" His point? It's a good thing Dr. Sidney Farber, a pioneer of modern cancer treatment, "bothered."
  2. A group of thoughtful, committed citizens can in fact change the world.
    When the "war on cancer" was officially launched in 1969 with a New York Times advertisement, it read: "Mr. Nixon You Can Cure Cancer." As a result of the campaign committee's efforts, the budget for the National Cancer Institute was increased. Since that time, we have seen dramatic improvements in mortality rates thanks to groundbreaking research that was given a chance. According to Dr. Mukherjee, we owe this improvement to human ingenuity. "We have taken the curve of the disease and turned it around as if it were a wire," as he eloquently put it.
  3. Cancer is here to stay, BUT...
    A question asked by a Baylor Healthcare System Leadership Development Institute (LDI) audience member sparked a humbling discussion about curing cancer. "Will we ever see an end to cancer?" Dr. Mukherjee's reply: Probably not. Some, but not all cancers will go away. Unlike a bacterial or viral illness, cancer cannot be eradicated. It is built into our genome.  However, we know more about cancer than ever and we are changing the dynamics of it.
  4. Stopping doesn't mean giving up.
    Another audience member asked: "As physicians, we struggle with deciding when to stop treatment. How do you know for sure?" Dr. Mukherjee's answer: We don't. The practice of medicine cannot be captured in simple reality. We have to balance the statistical reality with psychological reality. Physicians have to use their brains like stethoscopes to really understand what the patient needs and wants.
  5. Having second thoughts can save lives.
    Dr. Mukherjee pointed out two examples of people who reconsidered their declination to participate in cancer research. These two people-a three-year-old boy's mother and a breast cancer survivor-changed the course of history. Had they not had second thoughts about their decisions, we may have waited even longer for some of the most groundbreaking discoveries in the history of medicine-chemotherapy and Herceptin®.
 
The Emperor of All Maladies: A Biography of Cancer
by Siddhartha Mukherjee by Scribner
Paperback ~ Release Date: 2011-08-09
List Price: $18.00
Our Price: $7.99
Buy Now
 

 

Meet Bill Brown, Father, Professor, Inventor, Pastor, Deputy and Doctor of Philosophy
No One Lights a Lamp and Hides Under a Basket 

 

NOTE:

As I met Bill that Sunday, September 15, 2013, I understood to some extent all the work he's accomplished and how he's given back to the nation, his community and his fellow patients. He has counseled many men individually and through the ProtonPals. He's a very modest man and does not tell his story to very many outside of his family and close friends but he agreed to share it with this community of patients.  Because of the press of time, I took the liberty of using his curriculum vitae verbatim since it tells most of the story. J.L.             

 

William D. Brown

 

William D. Brown was born in Shirleysburg,

William David Brown, Ph.D.
Pennsylvania.  The family moved to Mount Union, Pennsylvania, in 1950.  Following graduation from Captain Jack Joint Senior High, he spent four years in the United States Air Force.  Upon being discharged from the military, he attended the University of Arkansas in Fayetteville where he received a B.S. degree in 1969.  He then attended and received an M.S. degree from Pennsylvania State University, University Park, in 1970, and a Ph.D. degree from the University of New Mexico, Albuquerque, in 1975.

 

            From 1969 to 1977, he was a Member of the Technical Staff at Sandia National Laboratories in Albuquerque, NM.  In 1977, he joined the faculty of the Electrical Engineering Department at the University of Arkansas where he presently holds the rank of Distinguished Professor Emeritus.  He served as Head of the Department of Electrical Engineering from 1983 to 1998, and again, from 2006-2007.  He also served as the Associate Dean for Research in the College of Engineering from 1998 to 2007.  His research interests include microelectronic materials and devices, solid-state and semiconductor physics, and electronic packaging.

 

            Bill's research has resulted in over 370 conference presentations, over 350 technical journal/proceedings publications, and 15 U.S. patents.  He has contributed to the book, Electronic Manufacturing Processes published by Prentice Hall, and has contributed to and edited the books Nonvolatile Semiconductor Memory Technology, Advanced Electronic Packaging: With Emphasis On Multichip Modules, and Advanced Electronic Packaging, all three published by the IEEE PRESS.

Type caption text here.

 

            Bill is a registered Professional Engineer in the State of Arkansas and holds memberships in the Institute of Electrical and Electronics Engineers, the International Microelectronics and Packaging Society, the Materials Research Society, the American Vacuum Society, the Arkansas Academy of Science, and the American Society of Engineering Educators (ASEE).  He is a Fellow of the Institute of Electrical and Electronics Engineers (IEEE)and the Electrochemical Society (ECS).  In 2009, Bill was honored as a Distinguished Alumnus of Captain Jack Joint Senior High School by the Mount Union Area Schools Alumni Association. In 2013, he was named a distinguished alumnus of the College of Engineering at the University of Arkansas.  In May 2013, he was inducted into the National Academy of Inventors.

 

            Bill is married to the former Margaret Ann O'Bryan of Little Rock, Arkansas.  They have three children and six grandchildren:

 

            William Kenneth Brown, police captain with the Fayetteville PD; wife Tammy, high school math teacher; and children, William Michael and Sarah Michelle.

 

            Dr. Robert Dennis Brown, Dermatologist; wife, Melissa, pharmacist; son, Samuel David; and daughter, Mary Catherine.

 

            Mary Anne Mabry, elementary school counselor; husband, Wes, paramedic and Captain with the Fayetteville FD; and daughters, Maggie Marie and Annie Elizabeth.

 

            Bill retired from the University of Arkansas on June 30, 2008 after 31 years of service as a faculty member and was granted the title of Distinguished Professor Emeritus of Electrical Engineering effective July 1, 2008 by the Board of 

Deputy Bill Brown.

Trustees.  In 2013, he retired from the Washington County Sheriff's Department after 35 years of service as a part time deputy sheriff.

 

            Bill is the Pastor of the West Fork Community Church.  He has served in this position for more than 20 years.

  

  

  

  

 

 

 

 

 



 

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 our 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 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

  • Support ProtonPals by letting us know how you're doing. That is so important to newly diagnosed men and their wives and partners.  As a former patient we'd all welcome your help in getting the word out about proton radiation and how you're doing. Please donate using the Donate Icon below or mail a check made out to ProtonPals, Ltd.(we're a tax deductible non-profit) at my home address.  Read more about it on the website How to Help - Giving

     

     

    Sincerely,

     


    Joe Landry, Founder
    ProtonPals, Ltd.
    ProtonPals, Ltd. is a 501 (c) (3) public charity incorporated in Texas.
    DISCLAIMERS ProtonPals is an exclusively patient-sponsored organization with no official relationship with or support by The University of Texas M. D. Anderson Cancer Center or the M.D. Anderson Proton Therapy Center. ProtonPals is simply an information sharing network of patients. ProtonPals hopes to inform, encourage and help patients through shared knowledge. Members are not doctors so more serious concerns should be directed directly to your doctor. ProtonPals also desires to promote the M. D. Anderson Proton Therapy Center as for virtually everyone it has been a very positive if not life saving experience. The ProtonPals web-site, commonly known as the ProtonPals.net weblog, will contain hypertext links to information created and maintained by other public and private organizations.  These links are provided for your convenience.  ProtonPals does not control or guarantee the accuracy, relevance, timeliness or completeness of this outside information.  Further the inclusion of these links to particular items in hypertext are not intended to reflect their importance, nor is it intended to endorse any of these views expressed or products or services offered on these outside sites, or the organization sponsoring the sites.