ProtonPals

By Dwan Reed   Dwan Reed’s Blog and Professional Web Site

I circled the carousel of self-help books. Improve your marriage…better health… become closer to God… Each looked interesting. “Should I choose one?” I wondered. “Who am I kidding? I need them all.”

I waved at Olive, my elderly friend, at the back of the grocery line and smiled, amazed at how fast she shopped. I had only been waiting twenty minutes.

Just then my phone rang. I trembled when my husband’s number flashed on the screen, took a deep breath and answered. “Did your results come in?”

He sighed, “Yes, and you’re not going to believe this.”

I waited for the good news. Thomas’s doctor, who obviously didn’t know how well my husband took care of himself, had referred him to an urologist for cancer screening. “Dwan, I have prostate cancer.”

I pulled the phone away from my ear and glared at it. Surely I was imagining this conversation. Thomas wasn’t really on the other end of the line. Yes, that’s it. Maybe one of those self-help titles took up residence in my mind. But the telltale number blinking on my cell’s screen told me otherwise. I pulled the phone back to my ear. “Did you just say what I thought you said? Are you sure the doctor was reading from your chart?”

“I’m sure, Dwan. And it’s not a slow growing cancer; it’s aggressive. The doctor wants to begin treatment right away. He says I don’t have much time to play around with this.

“Thomas, I don’t understand. How does a healthy forty-nine-year-old man have prostate cancer?”

“I don’t know, but I’ve got it.”

“This makes no sense. Shouldn’t there have been more warning signs?”

I don’t remember what Thomas said after that. My mind drifted, searching for “normal,” our way of life before this devastating diagnosis. I watched grocery items slide their way slowly down conveyer belts. Smiling clerks greeted customers, and baggers loaded plastic sacks and placed them in carts. I noticed another woman surveying the same carousel of books I had just circled. “I wouldn’t read those if I were you, “ I mentally challenged her. “You may receive a phone call with unexpected news.”

And “normal” was nowhere to be found.

One phone conversation, and fear had barged into my world, trampling the carefree expectancy of long life. Suddenly, I felt like a very old forty-one-year-old woman who had gained an undesirable understanding of, “tomorrow isn’t promised to any of us.”

I dropped off my friend, Olive, at the senior center and headed home thinking about the blessings I had always taken for granted. In spite of my husband’s spirituality, strength, and hard-working nature, I sometimes joked that I was trapped in a “ground hog day” of a marriage, complete with the repeat of humdrum every twenty-four hours.

My heart ached as I yearned for another eighteen years. I wondered, “What made me think it would last forever?”

Grasping the steering wheel with one hand and wiping back tears with the other, I petitioned God. “Lord, I love this man, but I know I don’t always act like it. What a fool I’ve been.” And as I pulled into our driveway, I continued, “God, Thomas is one of the best husbands and fathers in the world. Please forgive me for not being a better wife. What do I do now, Lord? Please save him.”

I slowly opened the front door, hoping my husband would meet me and announce, “The doctor called and it’s all a mistake. He confused my test results with someone else’s.” Instead, he pulled me to his chest and whispered, “Dwan, I love you… I don’t know what to say.“ As Thomas leaned down burying his head in my neck, I knew we couldn’t escape the reality of this illness that had invaded his body—and our marriage.

The coming months were difficult. We searched for a doctor who would address the lifestyle issues of a young man with an older man’s disease. With each serving of bad news, we cried and held one another, uncertain if we would be able to make love again the same way, uncertain whether my husband would have permanent incontinence issues, or worse.

Faced with the brevity of health, I wasn’t ready to let go. I longed for the simplicity of what I assumed would always be, yet helplessly yielded to a different course for our future.

For weeks, we awaited Thomas’s test results to determine if the cancer had spread. The ever-present malignancy in our lives began to melt my fierce independence and Thomas’s façade of indifference. As layers of buried emotions surfaced, I realized we’d lived together without truly knowing one another. I discovered that my husband was kinder, more loving, and enjoyable than I had ever imagined. And I hoped he discovered the same things in me.

The results came back. The cancer appeared to be contained in the prostate. The next step was to decide upon a course of treatment—surgery, radiation, proton therapy, naturopathic medicine, etc. Each therapy presented its own unique ramifications. For four months, we prayerfully studied each option and finally elected proton therapy and hormonal treatment.

Thomas took a two-month leave from work and rose before dawn each morning to drive across town for therapy. Day-by-day, his energy diminished while his slender frame surged to stocky proportions. I witnessed my well-tempered, reserved husband become emotional, reflective, and at times, irritable. A reluctant onlooker, I observed the passion in our marriage reduced to a kiss on the cheek as Thomas’s testosterone level dropped to near zero.

Even though Thomas was the one with cancer and undergoing treatment, I realized we were a team—partners in this battle; and I was willing to do anything to ensure my husband would live. To aid in his treatment, I mastered the art of cooking cancer-fighting foods. I took over many of his responsibilities, and learned not to complain when I was tired from carrying his load—and mine. I encouraged him daily, even when I felt uncertain of the future.

In spite of the changes in our marriage, we grew in intimacy beyond the physical. As we connected with each other’s hearts, minds, and souls, our home became a place of peace and hope—a safe house from the troubles of life. The shroud of disease lifted as we learned to laugh amidst trials and savor each new day.

A little over a year after my husband’s diagnosis, Thomas is now cancer-free with minimum side effects—praise God! His illness turned our world upside down, yet brought us closer. I don’t know if our marriage would have ever come alive, if it hadn’t been for prostate cancer. Prescriptions come in all strengths and forms, yet ironically, one of the most ravaging diseases in the world was the prescription we needed for a stronger marriage.

I never want my family to be affected by disease again, but thank God for the blessings that resulted from our journey.

Bio for Dwan Reed

Dwan Reed, Realtor and Broker’s Associate, resides in Houston, TX. She is a professional public speaker, freelance writer, and prison evangelist.  Visit her blog at www.dwanreed.com.

Tags: Resources, Newsletter, Testimonials by paljoe
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While doing some housekeeping on the ProtonPals web site and assembling some news for the February newsletter, I re-discovered the video about Pencil Beam therapy that was published last year.  It’s an excellent review of the technology and the advances being brought to Houston and the nation by M.D. Anderson.  This pencil beam gantry was brought on line and patients were treated starting in late February early March 2009.  It was the first proton nozzle of this type in North America, has treated more patients and is one of three in the world.THE VIDEO Video about Pencil Beam Scanning at M.D. Anderson Proton Therapy CenterTHE NEWS BACKGROUNDER Pencil Beam Newsbackgrounder at M.D. Anderson Cancer Center Proton Therapy CenterTHE TECHNICAL PAPER World-First Proton Pencil beam Scanning System with FDA ApprovalA three minute program providing information about the use of pencil beam proton therapy for cancer treatment.  Hear from experts at the University of Texas M. D. Anderson Cancer Center as well as a patient who talks about his experience.In the video look for  Dr. Cox and Dr. Lee AND…1) How protons work and why better than x-rays.2) How the radiation plans are drawn with three dimensional representation on the computer systems by the oncologist and the dosimetrist.3) How the patient is positioned and gantry operates4) The “behind the scenes” look at the gantry and the synchrotron.5) What Tommy Thompson one of the patients treated at the center has to say about the treatment.Please contact me or the PTC for more information.

Tags: Newsletter, Testimonials by paljoe
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Larry Hock graduated on Friday, May 1, 2009 and Joe Landry took some photos of Larry, his friends and the key radiation therapists, Claudia, Denice, and Jennifer.  These same therapists who, as he jokingly said in a German accent when he rang the gong, “led him to a cave like room with 8 foot walls, strapped him to the table and tried to get him to divulge the secrets of the oil production in North Louisiana”.

TO VIEW LARRY’s GRADUATION SLIDE SHOW USE THIS LINK ProtonPals Slide Show

Seven ProtonPals finished radiation treatment on May 6 and it was a busy time for the gong and the photographers.  I was able to get some pics for three of them,  Joe Filler,  Hugh (Mr. Ex) Exnicios and Craig Roshaven.

TO VIEW JOE FILLER and HUGH EXNICIOS GRADUATION SLIDE SHOW USE THIS LINK ProtonPals Slide Show 

PROTONPALS FELLOWSHIP AND STAFF APPRECIATION EVENING.  After several days of serious planning by Larry Hock, Joe Filler and Hugh (Mr. Ex) Exnicios around 110 folks gathered at the Proton Center on Wednesday April 22nd for the first ProtonPals Fellowship and Staff Appreciation night. One of Larry Hock’s friends, The BigE Drilling Company drove up with a crew, a Texas sized BBQ grill with all the donated fixings and cooked up the main courses.  It was a marvelous night as Pals got to meet and make new friends as well as getting to know the staff a little better.  The balloon babes know you pretty well already. You can tell from the following slide show that this should be a regular event.  Let me know if you want to continue what could become a tradition.

TO VIEW THE PROTONPALS FELLOWSHIP AND APPRECIATION SOCIAL USE THIS LINK ProtonPals Slide Show

Tags: Photo Albums, Testimonials by paljoe
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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

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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

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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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SURVIVING PROSTATE CANCER – by Terry Lavy (CURED 10/2/08)

One of the most alarming calls I have received was the one from my urologist when he said   “I’m sorry to inform you but your biopsy has shown that you have prostate cancer”! 

My first reaction on March 4, 2008 was shock and disbelief, since I had had no symptoms or any real reason to be suspicious other than the fact that my annual PSA reading was 5.1 whereas 15 months earlier it had been 3.85.  Two of my family doctors had indicated to me that a PSA of 4.0 was acceptable (not really suspicious for someone 70 years old and I was 72 at that time). I now know that some with a PSA of 2.0 may have cancer and some with a PSA of 15 could be cancer-free.  A 12 to 24 biopsy sample is the real criteria needed to determine the presence or absence of prostate cancer.  A slow rise in PSA level is expected and acceptable as one ages; however, rapid increases or any increase of 0.75 between checkups should result in you getting a biopsy as soon as possible.

Some very good news regarding prostate cancer is that most forms are relatively slow growing and one of the easiest kinds of cancer to cure!

It is now 39 days since I completed my 38-session Proton Therapy Fixed Beam Radiation (PTFBR) at M.D. Anderson in Houston, Texas!  I feel very fortunate to have had the opportunity to receive what I believe to be the very best and easiest treatment currently available.  Since I had never spent a night in a hospital and am not very fond of knives and needles, I was pleasantly surprised to learn that PTFBR patients were being routinely treated (and cured as stated by many, many former patients) with no cutting, no pain, no catheters, no incontinence  or other side effects!!

Within 2 days of my local urologist sitting down and explaining in detail five or six of the common methods of eliminating prostate cancer (and never mentioning PTFBR) and attempting to set up a treatment date for me, I had the ultimate good fortune of being contacted by a recently treated M.D. Anderson PTFBR patient.  After informing him of my 5.1 PSA and Gleason score of 7, he immediately exclaimed “Do not worry one more second about your cancer- you can assume that your cancer is a thing of the past.”  He knew that my scores qualified me for PTFBR treatment at M.D. Anderson (PSAs under 20 and Gleason scores under 8 qualify). He gave me their hot-line number (713-563-9398), and the next day I called them to inquire about his optimism and their treatment.  The secretary confirmed all he told me; however, the waiting list of 4 to 6 months and the 5-day a week treatments (38 over a 2-month period) made me skeptical whether I could arrange that.  With immediate encouragement from my wife and family I made the decision to get on their list. 

From that moment to this time my apprehension regarding my prostate cancer has been totally gone. We found excellent and relatively inexpensive housing (40-foot trailer rental) at a RV Court about 8 minutes, and little traffic, from the Proton Treatment Center.  The professionalism of the doctors and staff and the camaraderie of the other 50-plus patients completing similar treatments made this a memorable and enjoyable (in spite of 3 hurricanes, including one where we had to evacuate twice!) 2 months.

Proton radiation differs from the more commonly used photon radiation; proton radiation is focused to a spot and does not cause damage to surrounding tissues.  It is commonly now being used to treat brain cancer and other localized tumors.

Each treatment day I received 15 to 20 seconds of proton radiation administered thru each hip.  I felt no pain and after 38 treatments had only a slight 1-inch, sun-tan like spot on each hip.  During their treatment time, many patients were working 40-hour weeks while others regularly played 18 holes of golf!  The lack of fatigue was evident since one could not differentiate between those patients receiving their first treatment or their 38^th; they all felt fine!  Personally, I got up at 5:30 am and fished an hour before getting ready to go to my 10:30 am treatment.

At an informal completion (victory) ceremony and celebration (where the patient got to hit a big, noisy gong) each patient had the opportunity to say goodbye to the staff and his fellow, remaining for treatment, friends.  Cookies, cake, fruit or other goodies were commonly provided by the happy, patients and their family members after the completion ceremony.

A very informative book has been written by Robert J. Marckini, a patient treated 5 or 6 years ago.  The book title is “You Can Beat Prostate Cancer and You Don’t Need Surgery To Do It.”

Proton Radiation Centers are located in the following five states CA, FL, IN, MA and TX with three new ones being built in OK.  In a recent call to M.D. Anderson I was informed that by adding an additional proton radiation physician their current waiting list time is now only approximately 3-4 weeks! Most costs are covered by Medicare + supplemental insurance.

PLEASE DON’T HESITATE TO CONTACT ME AT tlavy[at]uark[dot]edu OR BY COMMENTING HERE IF YOU OR YOUR FRIENDS HAVE JUST BEEN DIAGNOSED WITH PROSTATE CANCER – YOUR UROLOGIST MAY NOT TELL YOU ABOUT PROTON THERAPY!   OVER THE PAST 15 YEARS THOUSANDS HAVE BEEN  SUCCESSFULLY  TREATED USING PROTON THERAPY.    I BELIEVE M.D. ANDERSON IS THE NUMBER ONE CANCER TREATMENT CENTER!

Feel free to send this information to anyone you choose.

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Comment: I had my last treatment on June 6, 2008. We have always been told, “If something sounds to good to be true, it usually is.” I told my wife and several friends, “I think we have found the exception.”  In fact, I tell them, that in one trip to the dermatologist, she caused more pain than 38 cancer treatments! I cannot say enough about the proton treatments and really how easy it is.On September 8, 2008 I went for my 3 month checkup. Not knowing quite what to expect, Dr. Lee said we would hope for a slight decrease in PSA. It dropped from 5.5 prior to treatment, to 1.5 in three months! More than just a slight drop. I think he was please and I know we were very pleased. Now just sit and wait for that next 3 months to see how lower it can go.                                        Willard Boone  

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Dear ProtonPals:

Although it’s been only a week since our last mailing, I felt we needed another note before the end of May and wanted to call your attention to some new items. 

1) A very nice note from Lyle Gilroy about his experience in Houston.  I’m pleasantly surprised that many of our Pals at the Proton Center find that Houston is a great city and are not shy about letting folks know about it.   

Here’s one of the best stories I’ve received in the past year about how you can “create” a support community where ever you go, at the Proton Center, at a local church and at one of our great museums.   I’ve been remiss in not following up any sooner and what I found out this morning is that there were two families who had great experiences working with the Museum of Natural Science.  In addition to Lyle, Ken and Jan Caufman, who were residents in 2007, also found the museum family extremely welcoming.  The volunteer coordinator, Mrs. Keller, is very open and approachable and if you’re are planning your two months stay in Houston, currently in treatment or if you’re a resident, she would welcome a contact and bring you into her volunteer “family”.   

The note from Lyle.

Joe:  I want to “Thank You” for your e-mail I received yesterday.  I would like to say how much my wife and I enjoyed our “vacation” in Houston Texas while I was taking my Proton Therapy treatments.  We not only found a “Proton Therapy” family, a “church” family, but we also found a “family” at the Houston Museum of Natural Science. 

Betty & I went to the volunteer office of the Houston Museum of Natural Science after chatting with friends from our home town of Loveland, Colorado who also graduated from the Proton Therapy  center in April 2007, and volunteered at the Museum.  We served as “docents” at the butterfly center at the museum but there are many other areas where help is needed.  We had a great time with a group of “super” people serving two days a week (optional) for approx. 2 hours a day.  It is a great opportunity to serve and do some fun things.  I was able to  read only so many books,  and  put together only so many puzzles.  Let me know if you could chat with the great people at the Houston Museum of Natural Science, and then inform the patients receiving Proton Therapy, particularly the new patients, of this great opportunity to volunteer.  The contact person at the Houston Museum on Natural Science is:

                      Sibyl Robertson Keller, Volunteer Recruiter and Education Coordinator                           

                      One Hermann Circle Drive

                      Houston, TX  77030-1799

                      713-639-4656 —- Fax  713-639-4755

skeller@hmns.org

Houston Museum of Natural Science

Get Involved at Houston Museum of Natural Science

  Lyle Gilroy,  Loveland, Colorado

2) Here’s another great testimonial to our fair city, Houston from Trevor Bradway. That’s quite a good review considering Trevor lives in one of the most beautiful areas in the US.  He had a good experience with the center and wanted to let you know some great restaurants that he had visited.  Personally, I’d add two more to the list and that’s Chrurrasco’s and Amazon Grill, both run by Michael Cordua Restaurants.  
The note from Trevor.

Hi Joe,  
                My name is Trevor Bradway (from Vail, Colorado). I finished up my treatment on April 17 but stayed on in Houston for an additional week because we enjoyed the area so much. Everything went very smoothly and I have not had any after effects. That said, I soon realized that many of my fellow patients had very little idea about where to go out to eat (other than the few local places). To meet that perceived need I put together a list of area restaurant recommendations and distributed it to all the patients I came across.  My wife and I had checked out many of these restaurants and the list was vetted by several folks “in the know.”  I believe Tai may now be including it in the welcome package for future patients. A copy is attached; feel free to publish it on your web-site if you believe it might be of some value.

Best Regards,  Trevor Bradway  

http://protonpals.net/nutrition/trevors-restaurant-recommendations

3)  Sloane Caskey and her staff regularly host support group meetings at the Proton Center on the last Wednesday of the month.  The next meeting is on May 28th at 1:00 pm. and the talk will be on “Nutrition and Prostate Cancer”.  This makes for an opportunity to meet for lunch in one of the restaurant’s Trevor recommended.  If you’re interested please let me know and I’ll promote with the web site and we’ll pick a place to meet.  Isn’t this a nice tie in with a list of restaurants in Houston? 

http://protonpals.net/wp-content/uploads/2008/05/support-group-flyer-may-2008.pdf

Please let Ban and I know if there’s a topic you’d like to see addressed in our mailings or on the web site.

In Gratitude

Joe Landry,  Ban Capron

Tags: Newsletter, Testimonials by paljoe
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Just received a note from one of our ProtonPals with news of his world travels and also how he chose proton therapy and the MDA PBTC.   Clif’s activities reminds me of the yellow Lance Armstrong wrist band that I’m wearing and how I’m not following it’s directive.   The band says LiveStrong and is part of Lance’s foundation campaign to get support for the  $3 billion Proposition 15 that was approved by Texas voters. 

I found out about proton therapy from the internet.  When I was first diagnosed in Feb 2007 I went into the usual panic mode which included reading books, visiting a three doctor multidisciplinary team at my alma mater, Duke University,and visiting at John Hopkins.  Up to that point there had been no mention of Proton Therapy.  Although I signed up for surgery at Ohio State, I guess I still wasn’t convinced and continued to research on the internet.  That’s where I came across Loma Linda, proton therapy and “Proton Bob”.  I spoke to the folks at Loma Linda but there was a longer wait than at MDAnderson so I flew to Houston to consult with Dr. Lee.  He felt I was a good candidate and recommended two hormone shots with the treatment.  I finished protons in July 07 and so far so good with minimal side effects. Dr. Lee emphasized the importance of exercise and I follow a daily walking and exercise regimen. I’m presently in the south of Chile for two months of their summer.  This is a beautiful part of the world with active volcanoes and beautiful lakes and mountains. The end of March I will be skiing in Colorado for a week and back to Houston for my 2nd follow-up visit in April.  That’s all for now.  My best wishes to all.
Clif T. 

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