Another Patient-Sponsored Organization
Check out: www.protonpals.net
This is a site founded by folks treated at MD Anderson and is modeled after Bob Marckini’s site.
Guest Post: Bill Vancil
In July of 2004, I completed my proton treatment at Loma Linda. My experience was so rewarding, I wrote a book about it. In Chapter 27 of “Don’t Fear the Big Dogs,” I told of my last proton treatment:
In the changing room, as I was looking in the mirror, untying the perfectly-tied knot behind my neck that held up the hospital gown, the realization that my treatments were actually over hit me. Tears gushed out uncontrollably.
I was never able to establish the predominant source of those tears. Was it relief that the treatments were finished? Was it the knowledge that, maybe, I had truly been cured of cancer? Or, was it because the whole marvelous journey was almost over? The best I could determine it was a blend of all of those things. In the mirror I saw my own face, tanned by weeks in the California sun, reflecting a mystifying mosaic of sheer relief, genuine joy, and yes…profound sadness at the thought of leaving.
The receptionist, Levita, handed me a plain brown envelope which contained a certificate of completion from the Brotherhood of the Balloon and a beautiful gold lapel pin with the proton logo. I knew it represented an accomplishment I should be proud of and for which I should be grateful.
So, that’s it? First they told me I was sick. Then they treated me as if I were sick. Then they told me I’m not sick anymore. And, I still feel the same as I did before I found out I had cancer. It almost seemed too easy. As I walked down the hallway that would lead me out of the hospital, I contemplated the impact this place has had on so many lives over the years.
Loma Linda Medical Center is a Seventh-day Adventist Health Sciences Institution, and truly lives up to the Mission Statement posted in the radiation center lobby:
“The mission of Loma Linda University Medical Center is to continue the healing ministry of Jesus Christ, to make man whole, in a setting of advancing medical science and to provide a stimulating clinical and research environment for the education of physicians, nurses, and other health professionals.”
Thank God for those who work to advance medical research!
Now, six years later, I find that my time at Loma Linda has served me, and others, well. Being cured of cancer seems almost like a bonus. The other rewards include being able to counsel men who are contemplating their new challenge of facing prostate cancer. My confidence in medical professionals also served me well, as this year I spent three and a half months in University of Wisconsin Hospital having a liver transplant. During my time there, I often leaned on my Loma Linda experiences to help me maintain a positive attitude and hold confidence in my surgeons and other caregivers. Phone calls and emails from people at Loma Linda were truly appreciated.
While in the hospital, I continued to talk with men from around the country who called me to discuss treatment for prostate cancer. I was sure to tell them I was in the hospital for something unrelated to my prostate! I didn’t want them to think I’d had a recurrence. The following is from one of several emails I have received from Liangni Liu, who’s been contemplating going for proton treatment. This is dated June 16, 2010. I edited it slightly for length:
Hi Bill,
Yesterday unexpected news came to me that said I was approved. My wife and I were overwhelmed with sheer Joy and deep gratitude. We were suddenly in touch with an “ instinct of truth”~ an immediate awareness of what is right and true, a truth without reflection: God is alive, Magic is afoot.
I can never forget how your info, advice, and encouragement have helped me to cross over those difficulties. Fortune favored me to meet you in my life. Indeed, you are the angel God sent to me.
In order to speed the process, yesterday morning I faxed a personal appeal letter to insurance company, to express how I feel about the importance of Proton; how will it greatly effect my life quality, just speak from my heart. We are expecting to get an affirmative answer next week. Never was I that lucky so soon. I’ve been granted peace of mind.
In the presence of deep appreciation, I have no alternative but to live nobly.
Your friend, Liangni
For me, that’s what it’s all about. Being able to share my Loma Linda experience with other men, helping them assess their treatment choices, and seeing them enjoy the same positive outcome. I’m now working on my next book, as yet untitled, which will focus on the importance of keeping a positive attitude and appreciating the support and prayers received from friends and family during a challenging time.
So, what’s in store next? We never know. For example, last week I had a wisdom tooth pulled, and three days later lost my balance while walking the dog, fell down and cracked a rib. Ouch!
But, guess what?
Being alive to experience all of life’s ups and downs is far better than the alternative.
Bill Vancil
Madison, Wisconsin
Phone: 608-798-2600
Email: billvancil@tds.net
Website: www.dontfearthebigdogs.com
Independence from Cancer
I am so happy to report that I have reached another 4th of July and celebrate our “Independence” that has made our country great.
The Wall Street Journal (WSJ) has an interesting article under their healthjournal@wsj.com site reported by Melinda Beck; The Prostate Cancer Quandary. The article explains the dilemma for the doctors and scientists in separating aggressive cancers from those that may not ever need treatment.
However, the question, “what do I do today?” is what the men who call or e-mail me ask. The psychological impact on the “recently diagnosed” is not answered by what will be done or could be accomplished in the future.
If I am a good example, almost eleven years (Aug 27th) post treatment without side effects, of what the Proton can do and I know many men who have had success with Protons, I still wonder why it is ignored by so many doctors.
Despite this concern, we still need research of the type cited in the WSJ article and everyone who can, should see that the research scientists and doctors are funded to continue their efforts. Loma Linda works with many experts outside their community and call on the best brains in the world to provide input to their studies.
In the next two Blog posts you will hear from friends of mine who have had Proton treatment for their Prostate cancer at Loma Linda, one very recently and one a few years ago, and I hope that they serve to expand your knowledge of this remarkable Proton treatment breakthrough that has helped so many men, women and children combat cancer over the past 19 years.
“Prostate Cancer Meets the Proton Beam”, by Fuller Jones
“Prostate Cancer Meets the Proton Beam” By Fuller Jones. Fuller Jones is a veteran 140 space launches and is a retired NASA engineer. I enjoyed his book and know that you will, especially if you are deciding on a treatment for Prostate cancer.
And then I read “Prostate Cancer Survivors Speak Their Minds” by Arthur L. Burnett II and Norman Morris. Released in 2010, this book features Surgery experiences by Arnold Palmer and other well known men who had surgery for their Prostate cancer. I am happy for them if they are happy however; I am disappointed that the “Sell” is still in place for surgery with the after effects they experience in this book while I am satisfied with “NONE!” with Protons after 10 years and 9 months.
In October 2010 Loma Linda will celebrate the 20 Year Anniversary of their Proton center. They are closing in on 15,000 people treated with protons and they have spent all this time improving the applications to 22 specific body sites and others. Breasts, Lungs, and Liver have been treated since 2007.
One of the three gantries has been recently modified to a robotic arm to place the patient in the treatment zone and research continues to evaluate possible improvement in other Proton treatment techniques.
Can you believe that when I was treated, there were two options for treatment and now the University of Pennsylvania (treating now) and Hampton University are coming on line. They will join MPRI in Indiana, MD. Anderson in Texas, Proton Institute in Jacksonville, Florida and four Procure sites that are open (Oklahoma City) or under construction with groundbreaking in New Jersey as the latest.
These are exciting times when prices in some Proton Centers are already coming down and the future is bright.
Loma Linda Proton Center – Continuing to Innovate
I just returned from a meeting at Loma Linda, CA and talked to the folks who run that great program with continuing success.
Loma Linda’s Proton center is very close to 10,000 Prostate treatments and should pass that milestone easily in 2010.
It was thrilling to learn specifics about continual updates of their internal skills and studies of methods to treat the Prostate and more cancerous and benign tumor sites in shorter times and at lower costs.
So, what about a second opinion? Absolutely, and these days it way include a second opinion on cost and insurance options.
The cost of medical care is making everyone nervous, however with new advancements in medicine we should be on the team that sees yesterday’s 65 as today’s 75 and recognize that “talent” should not be compromised by the aging process.
I’m 80 and don’t have any plans to stop providing information to folks who need to know about the positive advantages of the “Proton”, that’s the one with an “R”! [I Like to emphasize that since Photons (X-Rays) are only a letter away from being great while Protons unfortunately are often classified as “Radiation” without explanation that respects the advantages of this wonderful treatment.]
You may not know that Loma Linda has added “Breast, Lung, and Liver” to the diagnosis category that they treat with Protons, all of these began in 2007.
What we need now is Research funding to accelerate these advances in the use of the Proton and get them “on line” as soon as possible.
For me, another month without any “side effects” and I’ll let you assume that from now on.
If you have questions email me at this address. I usually respond to you in one hour or less.
Great Proton article posted yesterday in The Huffington Post
Tom Halsted has posted a very good summary on his experiences with being treated with Proton Therapy:
Worth the read. And love this graphic that accompanies the article explaining the Bragg Peak and how it differs from conventional x-rays:
Bragg Peak Graphs
New Proton Center Breaks Ground in Sommerset, NJ
We received this note today from Procure about a new Proton Center that’s being built in New Jersey:
“It’s a great day for cancer patients in the United States – ProCure Treatment Centers Inc. has broken ground on its third proton therapy center, in Somerset, N.J. This press release provides details about the groundbreaking of the ProCure Proton Therapy Center in New Jersey.
Proton therapy is an advanced form of radiation treatment for cancer that does less damage to healthy tissue and has fewer short- and long-term side effects. It is an important cancer treatment option currently only available at seven centers in the country.”
No Foolin’
It amazes me to read remarks from distinguished Oncologists, Radiologists, and Urologists who are selling their particular treatment for Prostate cancer.
One Radiation Oncologist (who ends his comments with “I know”) is dead wrong or dealing with old data.
And the costs estimates by these folks are all over the place. I would expect higher costs from the newer centers, but the costs tend to settle back to reasonable for the result, as time passes and competition increases. So let’s look at my take based on actual experience rather than conjecture or speculation which is often based on NO experience with Protons.
Here’s my take based on my personal experience and interviews with other patients who also chose “Protons” (with a “R”) for Prostate cancer.
My Prostate cancer showed up in January 1999 as a rise in my PSA from 3.6 to 12.6. I did not do anything about it until it my PSA went to 15.9 and then I was advised by a friend of mine who is a Doctor to go to Loma Linda for PROTON treatment. I never heard of Proton treatment prior to his statement.
As early as 1999, that was the best advice I’ve ever received.
The average age for Prostate Cancer in 1999 was 69 years old and I was 69 years old. In the “Support Group” meeting at Loma Linda I found that we had men in the program from 40 to 83 years old.
Today Medicare and most insurance companies still pay the bill and should forever. And, if there is a problem, the expert insurance staff at most Proton centers can help you.
“It’s April 1, 2010, I’m cancer free! I do not have any side effects whatsoever. In fact, I asked for a Colonoscopy after my Proton treatment from a local expert and it did not reveal ANY DAMAGE from this form of “Radiation” (Protons with an “R”)!
Talk to a PROTON EXPERT, at Loma Linda, CA; MD Anderson, Houston, TX; Proton Institute in Jacksonville, Florida, University of Pennsylvania’s new center, and others. Ultimately, you have to make the decision regarding your treatment. The “Links” on this site may help.
A new Procure Cancer Center using Protons just opened in Oklahoma City in July 2009! More are planned and on the way.
Almost all Urologist or surgeons recommend surgery and radiation oncologists “IMRT”, seeds (Brachytherapy, minimum low x-ray radiation) or traditional radiation with all of it’s new names.
The problem is that almost all radiation treatments use X-Rays up to and including “Cyberknife”. Protons on the other hand are NOT X-Rays, extremely accurate, and have the unique capability of being more precisely controlled for application to the cancer or benign tumor.
You can visit this website www.protonblog.com and watch the video about Protons first entered in the June 2009 Blog.
The FACTS are that Worldwide about 60,000 have been so treated with Protons for many cancerous and benign tumors. Loma Linda Proton center is the leader in this technology. The contact number for Loma Linda new patients is: (800) 496-4966.
A former Loma Linda employee and my friend Gerry Troy, University of Florida Proton Therapy Institute, (904) 588-1251 or mobile (904) 874-3040 ‘gtroy’ at floridaproton.org is a patient advocate at Jacksonville.
M.D. Anderson, the top rated Cancer Center in Texas, has a “Proton” center that opened in 2006.
Effectiveness and outcome of prostate treatment using protons (or almost any other treatment methodology), depends on your condition when being treated. I was 69 when treated in 1999, in good shape and now I am 80 (as of Feb. 4, 2010).
The results normally depend on your PSA, Gleason Score and Staging. My PSA was 15.9, my Gleason 6, my Staging T1c. In my last physical in Nov. 2009 my PSA is less than 0.1 as it has been for over six years.
Bob Marckini wrote the book You Can Beat Prostate Cancer And You Don’t Need Surgery to Do It, is available at www.protonbob.com, Amazon.com or LuLu Publications.
Since the MD Anderson’s Proton Center opened in mid-2006 and they have treated many patients with protons in fact, the first Proton treatment there was provided to a retired Air Force Colonel with “Lung cancer”.
I am not a Doctor, only a happy former patient, I HAVE NO SIDE EFFECTS! 10 YEARS, 7 MONTHS, post treatment. Seems like a no-brainer when you have a non-invasive treatment that works.
Those who do not favor protons obviously need to do their homework and learn what’s going on. For example, Mass General Hospital’s Proton center has used “Protons” since 1961 and began treating prostates in 1979, although today their focus is not on Protons for Prostate Cancer favoring Protons for other cancers and often focused on children.
The Midwest Proton Radiotherapy Institute (MPRI) in Bloomington, IN has been in business for some time with protons and started on Prostate cancer in 2004. The Proton Institute University of Florida in Jacksonville, FL, is open, and I went to the opening on Oct. 13th 2006 and at that time met 15 men who had already been treated.
With Hampton University in Hampton Virginia open now, two in the Chicago area and the University of Pennsylvania open, and treating now, similar facilities along with the Siteman Cancer Center in St Louis, and two new centers in Oklahoma City (one now open), along with a Proton center in Miami this is the rapidly growing approach to treat Prostate Cancer and many other cancers and benign tumors.
In fact you will also find a link to Protons in South Korea here.
Loma Linda, where I was treated, treats many other diseases with protons including:
Choroidal Melanoma, Pituitary, Acoustic Neuroma, Meningioma, Astrocytoma, Other Brain, Head and Neck, Prostate, Other Pelvis, Craniopharyngioma, Orbital, Paraspinal Tumors, Chordoma/Chondrosacoma, Sarcoma, Other chest, AVM, Other Abdominal, SNVM, Breast, Lung Liver.
I merely relate my experience and do not receive pay of any kind to tell people about my successful experience with Protons. Although I study Protons from one to three hours daily since 1999, here’s my caveat!
NO MEDICAL ADVICE: Material appearing here represents opinions offered by non-medically-trained laypersons. Comments shown here should NEVER be interpreted as specific medical advice and must be used only as background information when consulting with a qualified medical professional.
E-mail me. I usually respond to you in one hour or less.
Protons – with an “R”
In my prior blog post (Feb. 13, 2010) I answered the question “Where can you find out about Proton Therapy?” because so many Prostate cancer diagnosed patients never hear of it.
Since some of you may not visit the home page of my web site, here is important information from that page:
“Dr. James Slater MD had the vision and was the impetus for starting Proton treatment in a University environment at Loma Linda, Ca. and he recognized that Protons [with an "R"] act differently than conventional three dimensional radiation or IMRT (and many other disguises) that use focused Photons (X-Rays) and all other modalities that use X-Rays.”
A very important difference and this June 24th, 2009 blog post includes a video explaining how the proton works. Please look at the information concerning the “Bragg Peak” and how its action relates to Proton treatment and the proton’s accuracy. It takes the right tools to do the job and Loma Linda has the tools and “leading edge” experience with Prostate Cancer, treating over 9,500 men through 2009 for Prostate cancer and over 14,000 for other cancers and benign conditions.
Simply put, X-rays (using Photons with an “H”) cannot be controlled and go through the body while Protons with an “R” can be completely controlled to hit the cancerous target and then drop to zero charge eliminating any out bound damage to other tissue.
Bob Marckini wrote the book “You Can Beat Prostate Cancer And You Don’t Need Surgery to Do It” and it is available at www.protonbob.com, Amazon.com or LuLu Publications.
Go to my home page, read the “Links” and find out how to contact me by email. I usually respond to you in one hour or less.
Where can you find out about Proton Therapy?
A recent study publicized recently seems to indicate that learning about Prostate cancer treatment depends on who you visit to provide Prostate Cancer care.
I read, and or talk about Protons every day for at least three hours or more seven days a week to keep up to speed on what’s happening and I find that the kind of treatment may be recommended may depend on what the local hospital can do on site rather than what is available if you know where to look.
THAT IS WHAT THIS WEBSITE IS ALL ABOUT.
I want you to go to www.protonbob.com and read the many testimonies that are there all from actual Proton patients who, like me, want to spread the good news.
A few years ago I wrote a Blog post about the responsibility of Doctors to know all the treatments that work and tell the patient so he or she can make their own decision based on what is right for their situation; so ask them about Protons.
I read recently that the Northern Illinois University Proton site may be in funding trouble and will be delayed. That’s too bad since it is almost located on top of Fermi Labs in West Chicago where the medical value of the Proton was first identified by Dr. Wilson. The laboratory was founded in 1967 as the National Accelerator Laboratory; it was renamed in honor of Enrico Fermi in 1974. The lab’s first director was Robert Rathbun Wilson, who was part of the Manhattan Project.
The picture to the right is Robert R. Wilson Hall located in West Chicago.
Go to my home page read the “Links” and find out how to contact me by E-mail. I usually respond to you in one hour or less.