Prostate Cancer Blog – Proton Therapy for Prostate Cancer

Last week a gentleman asked; “How difficult is it to get referred to a Proton Therapy Center and what is the typical waiting time to be accepted.”

I wrote an immediate answer “Should not be a problem – in 1999 I referred myself to the Loma Linda Medical Center, Proton facility.

I also discovered that the e-mail address used by the sender does not work’ (Need some help “Don”.) Where do you live? Did you look at the available Proton Sites on my web site www.prostateblog.com?

ProCure in Oklahoma City and other ProCure sites do Proton therapy ie; Hampton is purely a proton center, and so is the MD Anderson proton facility, Indiana University Proton Center, and Univ. of Florida.

Regarding cost, I think Loma Linda is probably the least expensive for out of pocket pay. I have no idea about the current cost for treatment at the other dedicated Proton centers.

Depending on where you live the waiting time should be minimal.

In my opinion, we have a serious challenge from the Proton antagonists. They seem to ignore the well known facts about the Proton since many of them do not have access to the Proton Therapy equipment.

I do realize that some of this diatribe is pure protectionism for the techniques and treatment capability that this or that cancer facility has available.

However, let me repeat, I have NO side effects and I was treated from July to August 1999. Let’s see, that would be now in 2012 – almost 13 years.

Robert Marckini who sends us our monthly BOB Tales, points out the continued marketing of mis-information about the Proton by competition “who consider proton therapy a fad and discount it.”

Amazing that I am here in 2012 and am totally free of prostate cancer.

It is in the best interest of all of men with prostate cancer and other cancers and all women who fit in other categories with their cancer, to find friends in the financial community who believe in “protons” and have the power to insure that more people have the opportunity to use what Protons have to offer.

The debates about “Protons” and their efficacy are clearly lopsided and some of the result is that people who could benefit from Proton Therapy are denied the opportunity.

Shameful conduct in my opinion as the thrust should be to “Find a way” even if it is longer term financing of the treatments by operators of Proton Therapy facilities.

I’ll be 82 next month, and could not be happier with the “by chance meeting with a Doctor who knew about Protons.”

So here we are! I have seen the birth of new grandchildren since I was treated at Loma Linda Medical Center’s Proton facility and I’m enjoying a marriage with a lady who just celebrated fifty-seven years of marriage with me. We love being alive and in my case meeting up with the Proton was marvelous.

Many of us who have had Proton treatment believe that as the new facilities come on-line the price could be adjusted by economic competition. If we can do this the door will open for men and women everywhere who should be able to take advantage of this remarkable technology.

Starting in July 1999 with a PSA of 15.7, on this day, January 22, 2012, my PSA is 0.1, as it has been for over ten years, and I am side effects free.

From my point of view, Protons are the first choice due to the reduced radiation inherent in the Proton application.

Bob Marckini let me contribute my thoughts to him regarding treatment for my prostate cancer treatment completed at Loma Linda in August 1999.

His book, “You Can Beat Prostate Cancer – and You Don’t Need Surgery to Do It”, has been a blessing to hundreds of men. If you have been diagnosed with Prostate Cancer please get his book and read it before you make a move to combat your cancer.

Starting in July 1999 with a PSA of 15.7, on this day, Dec. 20th, my PSA is 0.1, as it has been for over ten years, and I am side effects free.

I wish I knew everyone who decided for treatment with the Proton. I sponsor 28 men who were treated at Loma Linda at the moment, and have seen over 50 different sponsored men with all kinds of symptoms. With very few exceptions all seem happy with the results from proton treatment.

Most amazing to me is the growth of acceptance for the proton from the time when I was treated. Then, only two Proton centers treated the Prostate and now the number is growing every time I look at the statistics on Proton capable medical centers.

I was very happy to see the Mayo Clinic with it’s huge reputation for Medical excellence announce the opening of Proton Treatment centers in Wisconsin and Phoenix, Arizona. MD Anderson listed in a recent business magazine as the Top Cancer Treatment Center has a Proton Treatment facility up and running in Houston, Texas.

It is certain that Dr. James Slater at Loma Linda University and Medical Center will be a model for anyone who has a dream and follows though to see a Proton Center built and continually modernized as they reached their 20th Anniversary in 2010.
From my point of view, Protons are the first choice and all doctors in the references, links on the Internet seem to continue to group protons along with radiation in general without recognizing the importance of the reduced radiation inherent in the Proton application.

Jim Tuggey, Dallas-Fort Worth, Tx
Very Happy Proton Fan

My annual physical was yesterday, October 25, 2011 over twelve years since I completed my Prostate cancer treatment at Loma Linda in August 1999. My PSA is 0.1, as it has been for over ten years, and I am side effects free.

The most recent Bob Tales (link here), points out the recent and I believe, significant attempt to stop PSA tests and I disagree with those efforts. If you stop and think about it, without the PSA test I would not have known I had Prostate cancer!

John Hopkins this month released an article that seems to support PSA testing and with their power it should have some influence on the folks who want to stop the tests. Two trials excerpts from John Hopkins follow:

“First, the positive trial was a landmark study carried out in seven European countries that studied 162,000 men who were randomized to PSA screening every four years versus no screening.1 With long-term follow up out to fourteen years, there was a 20% decrease in deaths from prostate cancer in the group of men assigned to screening. However, since only 85% of these patients actually underwent screening, if one includes only the men who were actually tested, the decrease in prostate cancer deaths is 27%. This reduction in death from prostate cancer is similar to the 30% reduction in mortality from breast cancer in women who undergo mammography and the 33% reduction in prostate cancer mortality that occurred in the United States between 1994 and 2003 following the introduction of PSA screening. Thus, the results from the European study support other findings and unequivocally demonstrate that PSA testing can save lives.

The second trial, which was carried out in the United States, was half the size of the European trial. It compared screening with PSA every year for six years with no screening thereafter versus no planned screening. It showed no improvement in prostate cancer mortality at 7 years. In the many sound bites on television and reports in print media proclaiming “no effect”, the words “seven years” were conveniently deleted. This is the major flaw in this study. Death from prostate cancer at seven years is meaningless.”

So, it looks like John Hopkins will continue with the PSA and you can find all their comments at the John Hopkins web site.

Today is twelve years since I completed my Prostate cancer treatment at Loma Linda in 1999. The Prostate is fine, the PSA is below 0.1 and it’s been largely a side effects free journey.

The Loma Linda experience for me was outstanding. I’ve never been treated by such caring people and I stay in touch with them to this date.

In my opinion, it is unfortunate that we only reach a small number of people with cancers treatable with Protons, and I’ve have been encouraged by the Mayo Clinic announcement that they will have two Proton centers in operation soon.

The current status of Proton Treatment centers in the United States is:

• MGH: Francis H. Burr Proton Center at Massachusetts General Hospital. The Proton Beam Unit was founded in 1962 and has the largest experience with stereotactic radiosurgery of any center in the United States. It makes use of the quantum wave properties of protons to reduce “doses to surrounding tissue beyond the target to a theoretical minimum of zero.”
• LLUMC: James M. Slater, M.D. Proton Treatment and Research Center at Loma Linda University and Medical Center, California (0ver 20 years as of Oct 2010).
• MPRI: Midwest Proton Radiotherapy Institute at Indiana, University.
• UFPTI: The University of Florida Proton Therapy Institute.
• MD Anderson: Anderson Cancer Center’s Proton Center Houston, TX.
• PPTCOK: ProCure Proton Therapy Center Oklahoma City, OK.
• UPENN: The Roberts Proton Therapy Center at University of Pennsylvania Health System.
• HUPTI: Hampton University Proton Therapy Institute. VA.

Others in process:

• NIPTRC: Northern University Proton Therapy and Research Center West Chicago (On Hold)
• CDH: CDH Proton Therapy Center, Warrenville, Illinois (Due to open 19 October at 11AM).
• PPTCNJ: ProCure Proton Therapy Center, New Jersey (Groundbreaking Ceremony took place on 7 April 2010). 40 miles from downtown Manhattan.
• PTCTN: ProCure Proton Therapy Center University of Tennessee Medical Center. (Scheduled to open in 2012/13,)
• SFPC: South Florida Proton Center scheduled to open in 2012.

One of the benefits of treatment for me at MD Anderson Cancer Center was a complete tour of the Proton Therapy Center.

Chuck Merrifield took me to every part of the center and I had a chance to talk to some of the men undergoing Proton Therapy for Prostate cancer.

These men were enthusiastic and one man was anxious to see Proton expand to other applicable areas. I told him that many other body sites were treated and that protons were certain to expand.

Back to treatment – today marks the completion of three Chemotherapy Cycles out of five planned. (Click HERE to read about my new challenge, unrelated to my prostate cancer from years ago)

The Chemo seems to be the biggest challenge to my system and they are very careful to advise you about Pre and follow-up Dental care due to the IMRT impact.

The Doctors and Nurses and others involved in the process are outstanding. I believe that the MD Anderson Cancer Center’s recognition is well deserved and I am astounded by the mix of people being treated from all over the world.

Dr. Frank heads the Proton Therapy Center and he is preparing to expand the scope of this important cancer treatment. These University of Texas facilities are wonderful and they achieve miracles each day.

I’m personally happy that they are working with experience updated to 2011.

From March 22 to March 24 my wife and I were in Houston, Texas and have discussed my Cancer with many Cancer experts at the MD Anderson Cancer Center in a most positive medical environment. The MDA team is amazing and up to date with information to use in 2011.

In the Cancer Center “New Patient” check in, Jan and I met the top surgeon, and a very sharp lady who asked me about all my medical history. The Head Radiology Doctor who examined me very thoroughly, looking at the cancer with a scope. He said that my Squamous cell can be treated with IMRT and Chemo and will take about 6 1/2 weeks.

The next day, I started at 6:30 AM preparing for a CT Scan and completed that with no eating from midnight the night before. Then they set me up for a PET Scan at 10:30 (by now I’m starving), over at Nuclear medicine, this involved putting a solution in my system and waiting for one hour before escorting me to a room where the upper torso and the head and neck were two separate parts of this scan.

The week beginning April 4th was all about setting up the Radiation Treatment Schedule and detailed review of every detail. The staff supporting each Oncology department in the Head & Neck Center is superb and knows how to handle all the myriad of problems they face every day.

So after this week of April 4th, I return on the 11th to begin my schedule to defeat this cancer, and I believe the very impressive staff and doctors that insures that the outcome will be successful.

Another bonus is the chance to talk to many people who are undergoing IMRT treatment right now.

Next week I’ll be starting again on a new “Cancer” project that has nothing to do with my prostate. The Prostate is fine, the PSA is below 0.1 and it’s been side effects free.

In my youth, I spent years in the sun demonstrating how I could burn myself red and then get the best tan around. That along with driving my car with no sun protection resulted in a few “Basel” cancer cells on the left side of my face that were removed by one of the best, UT Southwestern’s , Dr. Stan Taylor, Professor, MD and an expert at MOH surgery. Then my Dermatologists discovered a Basel cell on the tip of my right ear and once again Dr. Taylor came to the rescue removing that problem with no visible damage.

Now my 81^st Birthday present is a “Squamous” cancer cell on the back of my tongue, so off I go to MD Anderson to have that handled by the experts there. On the way I met a remarkable Doctor William Mendenhall, at Shands Cancer center in Gainesville, Florida. He evaluated my situation and convinced me that Radiation therapy was required for this particular job, although to date I have found no one who wants to do this with Protons.

The distance from my home between Fort Worth and Dallas, Texas will not allow me to go to Shands nor Loma Linda so my treatment will be accomplished nearby at M.D. Anderson, Cancer Center in Houston, Texas. I go for the usual introduction next Tuesday, March 22^nd and will keep you up to date on how this goes.

You should know that “Radiation” has been around for over 100 years. I read that scientists Becquerel and Rontgen in the late 1800s used radiation applications. Marie Curie’s Nobel Prize winning work with radioactive elements also helped get the ball rolling at the turn of the century.

Scientists and doctors were generally ignorant of the specific reasons why, but the first radiation oncologists cured, from historical record, the first cancer case in 1898.

So, let’s track this along, with a target of about mid-April for the next report.

This week a friend of mine called to tell me about his Mother-in-law’s cancer treatment.

This story starts over two years ago when we were all at dinner together in Trophy Club, Texas and John’s wife mentioned that her mother was blind due to a tumor. They told me they were trying to find a treatment that would work.

I asked how her tumor was described, and then told them that she should call Loma Linda since I was sure they treated that type of tumor with “protons”.

Not long thereafter, they landed in California for treatment.

In a relatively short period of time, John told me that his “Mother-in-law” could see and thanked me for the information on Protons.

So with periodic checks by the experts at Loma Linda her eyesight continued to thrive and both John and his wife were very happy with the results.

Until this week when John called me to tell me about the follow-on treatments and said, “The tumor is gone”!

Nothing could make me happier than this Proton cure.

So the success stories continue and this woman is free of any tumor that affects her sight.

Great news for a good friend and I hope more good information for you.

Jim Tuggey
14 January 2011

P.S. I still have NO side effects from my Proton treatment from 11 years and 5 months ago.

The day I started this web site I decided to do it for free and only feature my own experience with Protons and the experiences of other Proton Treated Cancer survivors, both men and women.

If you have been treated with protons for any cancer I would welcome your comments.

My wife of 57 years and I are going to New York, weather permitting, this weekend and taking my nine year old granddaughter along as well as her parents who have never been in the city for more than a few minutes.

We will be there New Years Eve and my youngest son will remember getting there after flying from Iran on December 31, 1979 after spending some time with us celebrating our 25th Wedding Anniversary during the time when Iran was changing.

The bottom line is that Protons have allowed me this victory over disease and already I have seen the birth of the young lady going with us and two more new recently born children.

My thanks goes to Dr. Carl Rossi at Loma Linda and his wonderful Case Manager at the time Sharon. These folks and many others made sure that the Proton did the job and it’s hard to remember that it was over on August 27, 1999.

Lastly, thanks to Mr. Jay Rolls, my wife’s nephew, who provides the business and technical genius that allows me to get the word out there.

I hope you have a great 2011.

Jim Tuggey

P.S. I still have NO side effects from the Proton treatment 11 years 4 months since treatment.