ProtonPals

A brief note about some interesting meetings being held in Houston this week.

1) Texas Chapter of Prostate Cancer Survivors – Monday 20th 7 P.M. A novel genetic alteration in human prostate cancer: biological and clinical implications

2) Dr. Lee will be featured on KPRC Channel 2 on Sat. April 25th, 6:30 to 7:00 P.M.  Innovations in Cancer Treatment and will speak about pencil beam therapy.  

3) Support Group Meeting on Thus at 1 P.M will feature Elizabeth Brackeen -  Finding Free and Reliable Health Information, The Learning Center

Joe Landry, Ban Capron, and Peter Taaffe 4/20/2009

1) Texas US Too Monthly Meeting

Last month Peter Taaffe and I met with Joe Piper, a very interesting gentleman and someone who’s been an officer in the US TOO national organization. Joe was one of the founders of the Texas Chapter of  the Prostate Cancer Survivor Support Group, saw our web-site, joined ProtonPals and extended an invitation for me to join them for the monthly meetings held at St. Luke’s Methodist Church on Westheimer.  I’m planning to attend this month’s meeting on Monday and hope to hear some exciting news about Dr. Michael Ittmann’s work at Baylor College of Medicine, his topic A novel genetic alteration in human prostate cancer: biological and clinical implications

http://www.texustoo.org/who.html

Date : Monday, April 20th, 2009

Time : 7:00 P.M

Place : St. Luke’s Methodist Church, 3471 Westheimer. Please Note the New Meeting Room Location: Youth Chapel, 2 nd Floor .

Topic : A novel genetic alteration in human prostate cancer: biological and clinical implications

Speaker : Speaker : Dr. Michael M.Ittmann   http://www.bcm.edu/pathology/labs/Ittmann/people.htm

Interest Group Meetings : New Member Orientation & Recurring Cancer; Radical Prostatectomy, Radiation and Quality of Life and Women’s Group will be assigned to Rooms B227 & B229. You can enter the building from the right side of the Courtyard and take the elevator that is in the Commons to the second floor, turn left and head down the hall straight to the Youth Chapel.

Getting There : Park behind the church. Enter the building from the right side of the Courtyard and take the elevator that is in the Commons to the second floor, turn left and head down the hall straight to the Youth Chapel.

2)  Innovations in Cancer Treatment.

KPRC Channel 2 will air “Innovations in Cancer Treatment, Part I,” which features M. D. Anderson, on Saturday, April 25, from 6:30 to 7:00 p.m., and again on Sunday, April 26, from 10:30 to 11:00 a.m. 

The show focuses on treatment of solid tumors. Faculty interviewed include Andrew Lee, M.D., associate professor, Radiation Oncology; Diane Bodurka, M.D., professor, Gynecologic Oncology and Mark Gilbert, M.D., professor, Neuro-Oncology.

• Lee discusses using pencil beam proton therapy for prostate cancer. We meet a successfully treated patient of his, James, and his wife Jean.
• Bodurka focuses on uterine (endometrial) cancer and talks about advances in treatments and new therapies. We also meet her patient, Barbara, who was treated with surgery for her uterine cancer.
• Gilbert focuses on advances in treatment for brain cancers and calls out some exciting new therapies developed at M. D. Anderson.

Several messages are wrapped around these stories, including the benefits of multidisciplinary care, the importance of customized care, the benefit of sub-specialization, the importance of proper imaging and pathology to the correct treatment, translational medicine and the relevance of clinical trials.

The show is the second in a series of six programs.  The first, which aired in the end of February, can be viewed on the Click2Houston site.

Mark your calendars for “Innovations in Cancer Treatment, Part II” which will focus on blood cancers.  This show will air Saturday, June 27, from 6:30 to 7:00 p.m. and Sunday, June 28, from 10:30 to 11:00 a.m.

3) Proton Therapy Prostate Patient Group

Regular monthly meeting has been shifted to the 4th Thursday of the month and this month will feature a session on Finding Free and Reliable Health Information by Elizabeth Brackeen, MS Senior Librarian, The Learning Center at MDACC. Our regular round table session will follow the main talk. 

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April 13, 2009 Houston, Texas 

PCa Over Diagnosed? Media’s Response to Screening  and PSA Testing  PSA screening does not carry any risk. It is a simple blood test. The risk is in treating men who have prostate cancer but whose cancer has not and will not cause any risk of being fatal. Until we can differentiate between aggressive and non aggressive tumors I think we should continue with aggressive screening for prostate cancer.  That’s what we think should be the position of the ProtonPals. See a more complete article on PSA SCREENING.   Joe, Ban and Peter.

A first in North America for the MDACC Proton Therapy Center  A new video  was released on March 30 describing how the Center has been treating patients with pencil beam proton therapy in Gantry 3. In the video and text copy Dr. Cox and Dr. Lee provides a clear description of how the newest nozzle works. There are no Plexiglas trophies to take home and use for a Jell-O mold anymore (taken from ProtonBob). That’s because the new nozzle doesn’t use the brass and plastic “stencils” apertures to outline the treatment area but uses a very precise, rapid fire pencil beam. Please see the video or the text Full Text Backgrounder for more detail.

Tell your friends about the PROTONPALS  ProtonPal partner Ban Capron has a list of friends that’s almost longer than the the Pals mailing list. Every week he sends them(and me) a new photograph of one of the great places he’s visited. This week it’s Germany, last week it was Peru.  Ban recently wrote a letter Ban Let’s His Friends Know  to his friends that starts this way.

“March 8, 2009

Most of you receiving this e-mail know that I had (past tense) prostate cancer. That’s not unusual as many, if not most men, will get diagnosed with prostate cancer especially now that ways to discover it are so good. “

Please read the letter  Ban Let’s His Friends Know and if you’re supportive of it, send a copy or your own version to all of your friends also. Encourage them to sign up for the ProtonPals newsletter.   

A HOT LINE FROM PROTONPALS - The man-to-man Contact List works  On Friday, March 4, I got a call from a newly diagnosed man from Louisiana. He’d found the ProtonPals web-site and used the man-to-man Hot Line to follow up with some volunteers.  After talking with four of the ProtonPals, Raymond made an appointment in 2 weeks with the Center.  He asked me “Why men don’t hear more about proton therapy and the ProtonPals?”  We doing our best to help the search engines (Google, Yahoo, Live Search) find us and you can help by writing a letter like Ban did to your friends and getting them to sign-up for the newsletter. http://protonpals.net/sign-up or write to  info@protonpals.net 

March Support Group Meeting – On Wednesday March 25, Al Brown, one of our African American ProtonPals, spoke at the monthly group meeting.  About a dozen men and their wives who attended heard about his journey to the Center;  and of the many turns his journey took.  Al is from Chicago where he’s self employed as a photographer, web developer and publicity agent and currently living in Rhode Island. 

Al gave the group a clear picture of how our doctors and urologists are not telling us the whole story. You probably get referred for a radical or robotic prostatectomy. One of his doctors did mention radiation but it was X Ray(IMRT) and not proton. Al turned down these approaches and consulted with proton therapy centers -  Massachusetts General Hospital in Boston, MA.(MassGen), Midwest Proton Therapy Institute(MPRI) in Bloomington, IN., University of Florida Proton Therapy Institute (FPTI), in Jacksonville, FL and eventually settled on the Proton Therapy Center.  Al told us of his reasons for deciding not to use the other centers and will cover those in his “My Journey” with the ProtonPals.  Al also presented his reservations about hormone therapy(ADT). Some of the men in the room had ADT along with their radiation treatment and liked the increased survival odds that this combination treatment gives them and didn’t necessarily support Al’s outlook.

Bottom line from Al’s talk and the discussion that followed –

Become aware of prevalence of prostate cancer especially if you’re an African American where you are twice as likely to get it and die from it than both Caucasian or Asian men.

Screening should start early when you are 50 years and for the African American it should start when you’re 40 especially if you have a family history. (see flap about PSA screening below)

Become informed of the side effects of all the types of treatment otherwise you’ll experience all the side effects of radical surgery.  Like Bob Marckini (ProtonBob), who was staggered as he saw his older brother wheeled out of a 4 hour surgery, one of our members in the meeting had a similar experience.  His brother had radical surgery many months ago and experiencing the side effects. He commented that “once you’ve visited a close friend or brother who’s had the surgery you’ll definitely choose proton therapy.”  Bob Marckini vowed he’d make “every effort to find an alternative treatment to avoid the trauma, blood loss and side effects” resulting in his treatment with proton therapy at Loma Linda.

“Walk out of any doctor’s office if you don’t get clear or appropriate answers to your questions.  Stand up for yourself. I’m alive because I did.”  from an article in New York Daily News.

Thanks to the men who’ve written and given us their story and anecdotes to the ProtonPals and key other sites, the information on proton treatment today is more widely available on having internet and specific web-sites as resources. Everyone in the meeting used the internet to research the disease, the treatments, the side effects and to cross check the information learned from their doctor or from hear say. 

Ab Fay, our long time ProtonPal supporter, brought one of his newly diagnosed friends to the session and we had a go around where everyone told about how he found out about proton therapy radiation.

Many of our patients who have been treated are continually referring patients to the Center and I would encourage you to do also. You can pull a brochure from the web-site and give it to them or refer your friend to the ‘”Just Been Diagnosed ?”section or the “Contact List” on the web-site.  “Just Been Diagnosed?”  or One on One Hotline

Janet, one of the wives in the meeting said, we ought to publicize the woman’s story .
“ Sorry Gary & I didn’t get to visit with you after the meeting, also.  I am so glad that we both attended.  I see the need to get “the word out” to as many men and women as possible.  This procedure is so much less invasive than the radical prostatectomy with lots less adverse side affects and more hope for a brighter future for all men and their wives.
I sincerely want to help with this.  As soon as my hand heals, I will begin my quest to get more information to first: The Oprah Winfrey Show.  I realize how futile that may sound, but I believe that with the help of some of the “Proton Pals”, it will be possible.“ 

If you’d like to join Janet please write to me. 

Supplements ( Vitamin E and Selenium ) May be Effective After all   A large clinical study , SELECT(Selenium and Vitamin E Cancer Prevention Trial), concluded in a September, 2008 report that normal doses of 400 IUs daily of Vitamin E and 200 mcg of selenium do not prevent prostate cancer.

BUT WAIT!, that’s not the whole story.  Other views 1) the nutritionists (maybe a vested interest) calls the study flawed because of the compounds used and the dosage. 2) MORE IMPORTANTLY, NOTABLY, AND CLOSE TO HOME is the March 2009 publication by Dimitra Tsavachidou  in our very own M. D. Anderson Cancer Biology Department reports that Vitamin E (400 IU) and selenium (200 micrograms) supplements taken for 3 to 6 weeks do affect gene expression and can act as a tumor suppressor.  Eric Klein, an MD from the Glickman Urological and Kidney Institute in Ohio said the new study “lend credence to the previous evidence that selenium and vitamin E might be active as cancer preventatives”. In an attempt to rationalize the differences between epidemiological and in vitro studies and randomized trials like SELECT, Klein said that randomized controlled trials “do not always validate what we believe biology indicates and that our model systems are imperfect measures of clinical outcomes in the real world”. Facts about the study   Reports of the study

See the Nutrition section on our web-site:   http://protonpals.net/nutrition/nutrition-2

More News on the Equipment Turnaround at M.D. Anderson.  An essential part of the proton generation train was replaced in an outstanding effort.  A turn around was scheduled at end of February and was thought to take a week but with excellent planning it was finished in 4 1/2 days. With engineers and physicists working around the clock the center was down only three week days,  Friday, Monday and Tuesday and was operational and treating patients again on Wed. 
If are technically inclined here’s a bit more detail - the piece of equipment that was replaced is called the RFQ(radio frequency quadrature) in the LINAC (linear accelerator). The LINAC/RFQ takes the proton particles from the hydrogen source and accelerates them up to 1.5 million electron volts before injecting them in the large synchrotron. How Proton Radiation Works The big magnets in the synchrotron then whirl the proton particles(not photon waves like regular x-rays) around until they reach a very high energy level and velocity, 250 million electron volts. For your treatment, a few nanoseconds of that beam is spilled out from the ring to the the gantry nozzle.   

Genetic Based Reasons for Prostate Cancer      The investigators are currently developing a test, expected to be available in the next few months, using saliva or blood samples. “We plan to offer the test now because we believe that some men and their physicians will want to take advantage of these findings knowing that the test will be refined over time as additional risk variants are discovered,” Dr. Xu told Medscape Oncology

Technorati Tags: Medicine,ProtonPals,prostate cancer,proton therapy,M. D. Anderson Cancer Center,MDACC,M. D. Anderson Proton Center,journey,radiation,radiation oncology,protons,Houston,support,cured,PSA screening

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Have you been concerned with the news?  The term over diagnosis makes no sense when it comes to prostate cancer. One either has prostate cancer or one does not  Many people reason that all cancer should be diagnosed and most aren’t comfortable living with cancer that hasn’t been treated. 

BE AN ADVOCATE of early detection. Don’t let the anti-screening crowd affect your thinking and cause you skip your PSA test.  The test does not carry any risk.  It’s a simple blood test, not unlike what you get done annually when kidney and liver function are measured. After all you don’t lose your peace of mind when you have those tests done?  Like my old boss who served under Admiral Rickover used to say, “ If you don’t measure it you cannot manage it.” So in taking charge of your health care use the results of PSA test to look for early signs of cancer.  Have it done early to give you a baseline. If you take the discussion to their logical conclusion, PSA screening is not just to save lives but to diagnose early, and early prostate cancer can be cured with a single mode treatment. 

I came on a position in all the writings over the past two weeks that I think the ProtonPals can take and post on our web site.  I would like to know what you think.  It was written last week by our Canadian friends and has a lot going for it.  First it does no harm, will probably save many lives and will certainly improve the quality of life.  Note, I’m not thinking that the early cure is done with radical surgery, and maybe that’s what the flap is all about. 

The Canadian Prostate Cancer Network (CPCN), an organization that speaks for men with prostate cancer and their families from across this nation, has reviewed the current research on PSA testing thoroughly. Its policy on early detection using the PSA test remains the same: CPCN advises men in their forties to start a yearly regimen of PSA testing and digital rectal exams.
Within the framework of the recent debate, CPCN takes the following positions: 

• A man has the right to know whether he might be at risk from prostate cancer, a disease that kills an estimated 4,300 Canadian men annually(and 20,000 to 30,000 American males, the italics are mine).
• The PSA test is safe, no more risky than any other blood test. So PSA testing is not harmful in and of itself.
• Currently, the PSA test is one of the best methods of early detection available. Refinements of the simple PSA test, such as measurements of PSA velocity, PSA doubling time, and percentage of free to total PSA, have improved the use we are able to make of its results. So getting a higher than normal PSA reading need not necessarily lead to follow-up procedures or treatments that pose risk, but should spark a serious discussion between a man and his doctor.
• “Over diagnosis” is a term that is potentially confusing; one either has prostate cancer or one does not. The question should be how best to respond to individual men who are diagnosed with prostate cancer rather than whether or not men should have access to information that might lead to a diagnosis.
• The question of whether to offer asymptomatic men the PSA test should be divorced from the issue of the overtreatment of prostate cancer. Not all prostate cancers need treatment. But we should use what tools we have to discover prostate cancer early, so it can be treated if necessary.
• PSA test results are used consistently in nomograms designed to help physicians and patients decide which prostate cancer therapies will result in the greatest benefit. Although we need new and more accurate ways of distinguishing between aggressive prostate cancer and more indolent forms of the disease, today, PSA levels are used to help make this determination. A baseline PSA reading at age 40 can prove useful to men as they age.

Joe Landry, Ban Capron, Peter Taaffe 

SOME COMMENTS FROM THE INTERNET

“The last thing I wanna see is that they read this and say ‘Oh,see I’m not gonna have a PSA test.”

“The media reaction and anti screening advocates has been a completely crazy over interpretation of the results.” 

“No, no one advocates overtreatment but would you sacrifice lives of 20-30,000 men?”

“The papers stated that two out of every five men who are diagnosed would probably never experience any symptoms from prostate cancer and would eventually die of something else. Therefore, they concluded, fewer men should be treated than are being treated today.   ‘But here’s the dilemma: How do they know which two of the five will never experience symptoms, and which three will?”   Bob Marckini

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WHO ARE WE?  The following is from the protonpals.net web-site WELCOME PAGE as well as our new brochure.  ProtonPals, Ltd. is a support and outreach group of men who choose proton therapy treatment at The University of Texas M. D. Anderson Cancer Center Proton Therapy Center in Houston, Texas to cure their  prostate cancer. The “PALS” formed a network and developed this web-site in order to:

• Stay up to date on treatment cure results
• Provide support to others and Proton Therapy Center activities
• Be informed on side effects among the group
• Promote proton radiation as the best cancer cure
• Attract and nurture more Pals who support our cause, patient-to-patient and friend-to-friend

ProtonPals is the Exclusive Organization for the Patients of The University of Texas M. D. Anderson Proton Therapy Center.

As you can see we are here for you but we also want to promote proton radiation and The University of Texas M. D. Anderson Cancer Clinic.

There are two ways you can help the hospital. You can join us and actively promote proton radiation and now there is a link on the web-site for donations. To promote proton radiation treatment you can direct prospective patients to the http://protonpals.net and have them click “Just Been Diagnosed” and also use our new brochure. We are hopeful that M. D. Anderson will send you the brochure in a future mailing, but it is available to you on the web-site now. New ProtonPals Brochure -February 2009

SUPPORT GROUP MEETING MARCH 25th  The regular monthly support group meeting will feature a current patient, Al Brown, who’s a strong advocate of proton therapy and a very interesting man.  Al started treatment at the proton center around the 9th and he will outline his journey in his talk, “One Man’s Journey”.  I think it will be about how he started in Chicago where he’s from and took a round about route in the U.S. cancer centers and eventually got to the University of Texas M. D. Anderson Cancer Center.  It involves many roadblocks and hurdles some of which we’ve all encountered.

DEDICATED TO YOU!

“If I should write a book for you
That brought me fame and fortune too
That book would be like my heart and me
Dedicated to you.”    “Dedicated to You”  by Ella Fitzgerald

Remember that song by the Mills Brothers and a young Ella Fitzgerald from 72 years ago? You weren’t born yet? Well that’s ok, because Ban and I are still going to use this as a way to dedicate this issue of the newsletter to Nurse Tai Ly. There are many who helped the ProtonPals’ and the Proton Therapy Center’s cause over the past 3 years but no one has been more appreciated, consistent in here service nor signed more members than Tai Ly.  Those are excellent reasons but we have other more important reasons. Here are just a few.

My initial contact came two years ago when Marcia and I were in the examination room for our original consultation with Dr. Lee. Here I was, with that “deer in the headlights” look, trying to stay rational, armed with a list of questions and statistics from my Baylor urologist and taking notes. Tai’s looking at a stressed out man and she says, “If you want this proton therapy treatment you should speak up and tell Dr. Lee.” I don’t know about you but I didn’t receive a hard sell from Dr. Lee and that her prompt made the difference in my life.  She’s continued to support me during treatment, has handled all the referrals and questions from the Pals that I’ve given her and has even walked questions printed out on paper to Dr. Lee just so he wouldn’t miss the email in his Blackberry. She continues to call attention to the ProtonPals and hands out the brochure and a copy Ban’s “My Journey” to many new prostate cancer patients on a daily basis.

I have a collection of writings from patients that speak volumes about her caring and support for us, her “roosters” as she likes to call us as she is the “mother hen.”  Here’s an anecdote from Buddy Z. in his 2007 testimonial on the web-site as he described his journey to the Proton Center.

“A friend of mine who was formally on the board of regents at U.T. made some phone calls, and the next day I received a call from our beloved Tai Ly, informing me that my appointment had been booked for the following week—another miracle. I arrived at PTC with my own “self-righteous” game plan to ask a battery of questions, and “interview” the medical staff. When I told Tai of my intentions, she stepped out of the exam room, and I overheard her saying she needed a few moments alone with her patient. She stepped back into the room, shut the door, and in a loving way, but in no uncertain terms, set me straight about how I would conduct myself if I wanted to hold out any hope of becoming a patient at PTC. Luckily I was approved for PT, and I am convinced Tai Ly was “put” there to save me from my own stupidity.” Buddy Z.

Buddy also talks about those intersections in our lives where certain roads taken and travelled make all the difference in our current lives.

IF I hadn’t been assigned to Tai Ly? Well, it seems to me at least, that there may very well exist what some refer to as a “Divine” purpose. I hope I will never forget each and every one, but until I draw my last breath, I will always remember Tai Ly. Her kindness, her compassion, her comforting care, and her smile—bright as the noon of Creation. God bless Tai Ly…God bless Tai Ly…may God richly bless Tai Ly. Many years ago, a friend of mine shared his idea about how he thought we should live our lives. He said, “When we get to the gates of Heaven, there will be a sign posted there with only one question on it. It will ask, ‘Did you comfort the heart of JUST ONE person who had lost all hope for peace?’ ”

UPDATES AND ADDITIONS TO THE SITE?  Ban and I continue to work on the web-site to make improvements and update it with new information we receive them from the ProtonPals.  Recently we’ve updated the PSA response showing almost 2 years post recovery for a few patients. I’m coming up on my 2nd anniversary in mid April and my October results were 0.3 ng/ml.  I’m feeling great and trying to exercise between work on the web- site and the incorporation of the ProtonPals.  If you were in the original group from mid- 2006 with nearly three years post treatment we’d appreciate knowing how you’re doing along with your PSA response numbers.  According to Dr. Lee, I probably make put more emphasis on this number than warranted but it’s one of the few numbers that works it’s way into graphs about cure rates and conversations with your friends.   Wouldn’t it be great if side effects were quantifiable!  Like “what is the number of your woody?” (erectile function!) indicating any ED side effects.  (Your PalJoe is trying hard for a little humor here.)

NEW BROCHURE?  We have a new brochure on the web-site.New ProtonPals Brochure -February 2009  Do what our Pal from Oklahoma, Glenn Dunn does when a friend wants some more information. He counsels them and relates his experience with the Center but also gives a copy of the brochure. Please print a batch on your color or B/W printer and when you’re speaking to a local social or church group about your experiences you can give them the brochure. We hope the brochure will lead them to 1) the Proton Therapy Center at M. D. Anderson and also very importantly 2) the ProtonPals.  We don’t have the budget to ship the paper copies but I can outline a way for you to easily have the electronic copies sent to your local FedEx Kinko store. Two hours later you can pick them up - all folded and on heavy brochure stock at the designated store.  You can consider this a way of helping the ProtonPals and giving back to the Center.  Bob Jernigan, C.S. Brands in Tyler, TX, an early ProtonPal, used this way to print a batch for the Proton Center a few months ago.

GRADUATION DAY?  On February 25th and 26th a total of 22 patients completed their treatment at the Center and a large luncheon was held.  As you can tell there were many photographers as well as whole families who gathered for the celebration, and Goode food to eat. One family from Wichita Falls represented three generations, a father who was completing his treatment, his son and grandson. The center had been planning treatment completion for all these patients on the same day in order to shut the equipment down at the end of the week for a major maintenance turnaround. Work on the equipment was completed in short order and the center was back up and in operation by the next Tuesday and treating patients starting on Monday March 9th.

A MINI PROTON CENTER?  M.D. Anderson has an affiliate in Orlando that you might not hear about in the hallways in Houston unless you’re in the corporate suite. It is a rather large 10 story cancer and research center with an advanced radiology clinic serving the central Florida area. Three years ago the clinic contracted with American Shared Hospital Services (ASHS) to install a one room proton therapy system in development by Still River Systems, an off shoot from the Mass. Institute of Technology that represents a compact proton generator. The first systems are operational and one will start up later this year at a St. Louis facility. So by 2010 the U. S. will have many proton therapy sites and we’ll have two M. D. Anderson proton centers,  PTC - H and PTC – O.

PROTONPALS is now PROTONPALS, LTD.  In order to get an exemption from the IRS to qualify as a 501 ( c) (3) we registered ProtonPals as a public charity with the State of Texas, with 3 directors - Ban Capron, Peter Taaffe and Joe Landry, we have articles of incorporation, a set of by-laws, and I’m drawing up a preliminary budget for the next 2 years. Being a public charity will let us raise a modest amount of funds from grants and public contributions to 1) obtain insurance that will indemnify the leaders and volunteers, 2) support the publications of brochures and web-site, 3) contract for a professional web-site and 4) conduct outreach public and professional educational programs on proton therapy.    

Giving Back? You probably received a letter from M. D. Anderson Cancer Clinic office last week regarding the Spring Appeal to the Annual Fund. While the research work President Mendelsohn describes is very advanced and important, so is the therapy provided to you by the Proton Therapy Center. You can count the number of centers in the U.S. on one hand. If decide to contribute it may not be to the Spring Appeal but you can dedicate all or part of your contribution to the work the Proton Center is doing by so designating as explained here.   http://protonpals.net/how-to-help-giving

Joe Landry and Ban Capron,  March 17, 2009

Technorati Tags: Prostate cancer,proton therapy,radiation therapy,radiation,U.T. M. D. Anderson Cancer Clinic,M.D. Anderson,MDACC,M.D. Anderson Proton Center,journey,radiation oncology,protons,Houston. Newsletter,January,support groups

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In order to stay current with the Proton Therapy Center at  M.D. Anderson Cancer Center’s approach and their answers to your questions about proton therapy, I’d like to lead you to their website . Proton Center Home.  Here you’ll can navigate around and you’ll find the FAQ link.   

Also on the Center’s site you find information about the type of cancers treated. Diseases Treated

You’ll also find a 9 1/2 minute Windows media video proton video on how this tissue sparing therapy is used to fight cancer in many tumor sites throughout the body, including the newest form of this therapy, uniform scattering, or as called by some pencil beam therapy.  The gantry was commissioned and approved by the FDA in December 2007 and the Center started treating patients in June 2008.

Also you there’s a new patient check list for you with many important phone numbers, including the Patient Advocate’s number  New Patient Checklist

Technorati Tags: ProtonPals prostate cancer,proton therapy,M.D. Anderson,MDACC,M.D. Anderson Proton Center,journey,radiation,radiation oncology,protons,Houston,support,cured

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What Side Effect? Do you think prostate cancer treatment will slow you down and the side effects will keep you house-bound because of fatigue or even worse incontinence? Do you worry that your treatment for prostate cancer will seriously affect you and you will not be able to do what you used to before diagnosed? Read about John Hunt, a 70 year old professor who jogs 20 miles a week, volunteers at local schools to teach math and science and has time to promote proton therapy at the local medical school. John Hunt writes the following to the Pals.

“I am a soon to be 70 year old professor who was diagnosed with prostate
cancer in March of 2008. I am very pleased that I chose proton therapy
as my treatment option and that I was treated for prostate cancer at the
M. D. Anderson Proton Center in Houston. My PSA before treatment was 5.4
and I had a Gleason score of 7. Dr. Lee assigned me to the fixed proton
beam for my 38 days of treatment. I received 2 cobalt gray equivalents
daily and weathered 3 hurricanes (Eduardo, Gustav and Ike). I completed
the treatment October 1, 2008. The technicians at the proton center
(Tasha, Kathy, Teo, Thomas, and Vita) were caring, professional and
positive. They were always patient and cheerful and M. D. Anderson is
extremely fortunate to have them on their staff. They are outstanding
professionals!
I teach full time at a university in Mississippi and on weekends

(Thursday and Friday) teach physics to parents of students in public and
private schools and then we put together a “Science Is Fun Day.” I
exercise 6 days a week by jogging 2-3 miles a day followed by doing a
number of knee bends, push-ups and stretching exercises. I take “Pathway
to Healing - Dr. Reginald Cherry” vitamins each day and supplement these
with glucosamine chondroitin, chromium picolinate, CoQ-10, D-3, and saw
palmetto. I took these before treatment and I take them each day now. I
have not experienced any fatigue, no incontinence or impotence since
treatment and my PSA after 3 months is 1.3. I enjoy every day!
I highly recommend this treatment method to anyone who has prostate cancer.

Please share my name, phone number and email with anyone who needs a
listening ear and who would like to hear my story.

John D. Hunt
Professor
Mississippi College,
Clinton, MS 39058
729-232-1976 (Cell number)
601-925-3427 (Office number)
601-664-1201 (Home number)
hunt01@bellsouth.net
Jhunt@mc.edu (MC e-mail)

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The regular monthly group meeting of the PTC Proton Therapy Patient Group meeting will be on November 19th and will feature Susan Daum, who will address “Healthy Eating During the Holidays”.  Ms. Daum is a Sr. Clinical Dietician at U.T. MDACC.  The meeting starts at 1:00 PM in the conference room PTC1.2004 and PTC1.2008.  November 2008 Group Meeting

About a week ago I got an email from a most interesting man who lives on Amelia Island Florida. I followed up with a phone call and as a result got to meet Dr. Jim Morgan telephonically.  Dr. Jim, an author and speaker, is also a January 2008 graduate of the University of Florida Proton Therapy Institute.  Jim sent me a copy of his most recent book to review, called  “Faith and Proton Therapy vs Prostate Cancer”, which I just finished reading.  It’s a very well written and a personal account that takes you step by step on his journey to choosing and receiving proton therapy treatments.  As another reviewer noted, it’s light hearted and candid making it a very easy to read and an addition to “One Man’s Journey” published by ProtonPal Ban Capron on this site.

You can contact Dr. Jim at drjpm1999@yahoo.com , and purchase his book (ISBN: 978-1-934666-29-6) at selected book stores or from the publisher, High-Pitched Hum.  Quantity discounts are offered.

In gratitude,

Joe Landry April 2007 Graduate

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Ribbons, signs, lights greet boy’s return from treatment

By ELENA CRISTIANO - For the North County Times | Sunday, October 19, 2008 8:54 PM PDT ∞

Four-year-old Max Kleckner carves a pumpkin at his neighborhood party held last week to support his fight against cancer. (Photo by Jamie Scott Lytle - Staff Photographer)

Four-year -ld Max Kleckner wears a Superman cape at his neighborhood party held last week to support his fight against cancer. (Photo by Jamie Scott Lytle - Staff Photographer)

Four-year-old Max Spartacus Kleckner plays rough and tumble with the other kids in his Cardiff-By-The-Sea neighborhood as if nothing is wrong.
But something is terribly wrong.
It started out as a series of colds and ear infections that Max just couldn’t seem to fight off. When the right side of his head appeared slightly enlarged, the doctor said it was a swollen lymph node. Then, when Max’s eye seized, his parents rushed him to the hospital.
On July 4, four years from the day they got the long-awaited news that Max had been conceived, his parents, Mark Kleckner and Natalie Young, heard the words few parents can imagine hearing. He has a large, malignant brain tumor —- embryonic-type rhabdomyosarcoma. Within days, tests revealed the rare cancer had spread to Max’s bone marrow making it the dreaded stage IV, the most aggressive, deadly kind. Estimates of the survival rate for this type of cancer range from 20 percent to 50 percent.
Doctors told Young and Kleckner to treat each day with Max as a gift. Young says those are words all of us should live by.
Inoperable due to it’s location and size, the only true treatment option available to the family took them to Houston, Texas, for six weeks of proton radiation therapy under clinical trials at The Proton Therapy Center at The University of Texas M. D. Anderson Cancer Center.
The residents of the 2100 block of Montgomery Avenue, where seven other children were born within two months of Max, quickly banded together in an effort to find out what they could do.
Led by neighbors Rae Martin and Kimberly Tilton-Riley, they have created Lights Up —- Cardiff, a series of events and fundraisers designed to raise awareness for Max’s plight and help the family face the enormous costs of a fierce battle that doctors say will be lifelong. Max’s family has health insurance but it does not cover the travel expenses or loss of work. Besides, they say their policy’s lifetime maximum is likely to be reached within a year.
When Max and his family returned from Texas to their small coastal community on Oct. 10, they were greeted by gold ribbons and welcome home signs. Harvest and Halloween lights and decorations were strewn about the block. Max understands they are for him and says it is "really fun."
His mother, Natalie, said Max is continually thrilled to see the outpouring of love and support from the once "distant and disconnected" neighborhood. "I think the positive energy surrounding us is partly why Max’s treatment has been so successful so far," Young said.
This past weekend neighbors, friends and family gathered to bob for apples, carve pumpkins and continue to foster the community spirit that is rallying around Max’s cause. Max was there, surrounded by children, laughing and playing in the autumn sunshine.
Neighbor LaVonda Gollner, who works at the Solana Beach Child Development Center, attended the party and has been keeping a photojournal, chronicalling Cardiff-By-The-Sea’s support of Max.
"This is the first time I’ve met Max," said Gollner. "It’s beautiful how the community has come together to help him."
Organizers of Lights Up —- Cardiff are asking the residents of the "walking district" of Cardiff-By-The-Sea, which is west of Interstate 5, south of Birmingham Drive and north of San Elijo Avenue, to hang lights and decorations in a "Candy Cane Lane-style" demonstration of support for Max.
On Saturday, Nov. 8, from 4 to 7 p.m., there will be a fundraiser at the Belly Up Tavern in Solana Beach. Tim Flannery and Friends will entertain and there will be live and silent auctions, for which donations are sought. Tickets for the 21-and-older event are $60 and available at the Belly Up box office or www.bellyup.com.
To learn more about Max Kleckner and Lights Up —- Cardiff visit www.maxspartacus.com. Donations can be made to P.O. Box 372, Del Mar, CA, 92014.

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A reminder that Dr. Andrew K. Lee will be speaking at our October group meeting on Wed. October 22 at 1 PM to be held in the conference room at the Proton Therapy Center on Old Spanish Trail. 

If you are in the Houston area please attend.  This is an opportunity to hear about the center and to ask questions about treatment and recovery.   If you are not attending but have questions please forward them to Sloane Caskey, srcaskey@mdanderson.org  or Tai Ly,  tly@mdanderson.org  or me, jelandry@sbcglobal.net.

I have questions about the proposal by the Centers for Medicare and Medicaid Services to stop reimbursement for proton therapy for prostate cancer;  and what we as a group can do in a grass roots effort to make our views known.   This is the note I received from Bob Marckini (ProtonBob).

Dear Members,
Several members have brought to my attention the fact that the Centers for Medicare and Medicaid Services (CMS) have made a proposal to stop Medicare reimbursements for proton therapy for treating prostate cancer. They claim that proton therapy is more costly, not widely available, and that no current, comparative studies have been conducted to prove proton is better than conventional prostate cancer treatment therapies.
You can read about this at the following URLs:

http://www.cms.hhs.gov/mcd/ncpc_publiccomment_popup.asp?comment_id=498

http://www.cms.hhs.gov/mcd/ncpc_publiccomment_popup.asp?comment_id=360

Joe Landry

ProtonPal Graduate April 2007

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The Proton Therapy Patient Group meetings are starting up again after a summer vacation. The meetings
are held on the 4^th Wednesday of the month by the Radiation Oncology Social Workers at the Proton Therapy Center starting at one o’clock.  Next month’s meeting will feature Dr. Andrew K. Lee. 

Nurse Practitioner Tai Ly spoke at a well attended session consisting of mainly of patients undergoing treatment.  Two “graduates” Steve Kennedy and Joe Landry who live in Friendswood and Clear Lake attended.  Local attendance was definitely affected by Hurricane Ike recovery. 

Tai Ly has been battling breast cancer.  Starting in the fall of 2007, right after she completed constructiong her dream home in New Mexico, Tai was diagnosed.  She’s been through a series of treatments and surgeries including one she was recovering from at the meeting.  On another note, Tai was interviewed and is quoted by the National Nursing Oncology Magazine, ONS Connect, page 8   http://www.nxtbook.com/nxtbooks/ons/connect_200809/

An additional radiation oncologist, Quynh-Nhu Nguyen, M.D.,  joined the MDACC  Radiation Oncology’s Genitourinary service in August is now works with Dr’s. Lee and Choi at the Proton Center to treat prostate cancer in addition to other services at the Mays campus.   Dr. Nguyen received her M.D. degree from the George Washington University School of Medicine.  Her residency training was at University of Virginia and fellowship training at The University of Texas M.D. Anderson Cancer Center.

Fitness Facilities - Patients at the PTC –H have frequently asked about fitness facilities in the Medical Center area and we learned at the meeting that interim memberships at The University of Texas Medical recreation center are available to the patients of the Proton Center. With your patient ID card you can get an interim membership for 10 workout sessions for $40.  http://ae.uth.tmc.edu/recreat/index.html

Meeting Notes

Email Communications to Your Doctor  - Patients sending e-mail to Dr’s. Lee, Choi, or Nguyen should as a practice send a copy to Tai Ly as an FYI.  Tai will help you follow up with any questions or communications you might be looking for.  The doctors are so busy that even if they use their personal data assistants (Blackberries) extensively, sending Tai a copy will assure that your questions are answered.

Post Treatment Follow Up Visits and PSA Tests  - A “graduate” who lives a distance from the Houston area should definitely look to make the 3 month follow up at MDACC.  If you’re from out of town, the frequency and the timing of your visits is negotiable. The staff recommends that you use blood sample kits to have your PSA determined by MDACC laboratories. You may have an excellent lab in your city but if you want to measure changes in PSA levels or the all important velocity of change I think it’s best to stay with the MDACC labs.  We’ve seen large variations between some labs and MDACC.

Quality of Life Surveys (QOL) - Should be filled out as a baseline prior to treatment, at the end of treatment, every 3 months for a year, every 6 months for 3 years and once a year for 6 years.  For the other study which is the multimodality QOL, that compares to others who opted for a different modality of treatment:  the frequency is - pre- treatment, 3 months after treatment, 6 months after treatment, 12 months after treatment, then at 18, 24, 36, 48 and 60 months anniversaries.  The surveys will be used for comparative results on surgery, brachy, IMRT and PBT.

Diet, Gas and Beano – As my doctor, Dr. Lee took a very pragmatic approach to diet and recommended that I not make drastic changes to my regular diet.  However his goal, as the radiation oncologist was to have the clearest view of the field to be treated and you should be aware of the foods that produce gas. Gas will can displace the prostate gland and the goal here is to have the position of the gland to be precisely as measured during the simulation.  Also, in post treatment recovery, watch the amount of blood thinners such as Plavix, Coumadin and aspirins and lack of fiber that you take in.  Remember that some herbal medicines and teas may act like blood thinners as well. You may want to take a stool softener if warranted. We’ve had 2 sessions at the Proton Group meetings on diet and a summary of the talks including a booklet on nutrition for proton therapy patient are on the ProtonPals web site.  http://protonpals.net/nutrition/nutrition-2

Hormone (Lupron) Some intermediate and high risk prostate cancer patients are given hormones (neo-adjuvant therapy).  The risk level are determined by the stage, PSA levels, the Gleason score and the percentage of the glands with tumors, sometimes expressed as number or percentage of biopsy needles that are positive. Patients with Gleason score of 6 and 7 are treated at the PTC-H.

Colonoscopy - Have a colonoscopy prior to radiation therapy or wait one year post treatment before having the test.  If you choose to have a test, please inform your PTC-H before you have a colonoscopy. That way they can give you instructions on what to tell your GI doctors so they don’t biopsy or cauterize the bleeding at your rectum. The percentage is very low but there are some reports of rectal bleeding.  This could be aggravated by use of blood thinners or hard stools.  Treatments for rectal bleeding are the avoidance of hard stools with diet and stool softeners, suppositories, hydrocortisone, or argon plasma coagulation (APC) for the most severe.

J.E. Landry, ProtonPal and April 2007 Graduate
832-335-0353

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