In early August I was diagnosed, after biopsy, with PC. My wife and I have gone through what I now know are all the usual stages of this "happening"-- Shock, dismay, worry, and now the beginning of understanding. I am a white 73 years old male, in fairly good physical condition (gym 3 times a week), but in 2004 I did suffer a (minor?) stroke which affected my left peripheral vision only-- no other physical impairments. I am on Plavix and Pravachol; and Flomax since June.
My biopsy showed the PC to be mostly on the right lobe, but GS 6, 8, & 6. Only one core on the left lobe showed positive at GS 6. My PSA went from 2 in 2003 to 3 in 2005, then to 5 in July of this year. I had the CT Scan and Bone Scan which were negative. Testicular Ultrasound also ok.
I let the local urologist talk me into Lupron Therapy before doing any investigation myself, and I had the "Four-Month" shot on August 30, 2006. This Urologist recommended "SeedNet" Cryo Treatment of the complete prostate. A "Second Opinion" by a Radiologist recommended Radiation Therapy. Thus I started to realize that I needed to do my own investigation.
Following that I really started my research and finally decided to investigate cryosurgery was possibly the correct course of action.
I have read the information of Dr. Gary Onik, among others, whose work led me to the idea that "focal" cryosurgery may be the right treatment, hopefully to spare the nerves on the left lobe. I now find that Dr. Onik has "opted out" of Medicare (Medicare is my Primary Insurance, with Federal Blue Cross-Blue Shield as secondary). I am located on the East Coast of Florida and hope to find treatment in Florida if possible.
My primary question is whether or not to go ahead and schedule a "mapping biopsy" of the left Prostate lobe, (to determine the true extent of cancer growth with the option of cryo, - sparing the nerves on that side) OR wait until my Lupron-Four Month therapy shot treatment is near completion. I had it August 30.
My local Dr. tells me that the Lupron should "run the course" to shrink my prostate before any treatment, so this is another question, as he has not been very forthcoming in answering many of my questions. So I also need an opinion on the question of waiting until the end of December (The end of the four month Lupron Therapy) to do anything, or should some alternative or concurrent treatment or diagnostic method be started before then?
I also want to know more about MRSI (or ProstaScan?) for more definitive knowledge of my PCa, and if it is available in Florida; if not the nearest state to Florida.
I am one who likes to understand things before reaching decisions, and feel reasonably confident in my ability to do so. I am a graduate engineer, retired from the Space Program.
Since my initial forum entry, I have done additional research, but still have reached no definitive decision on the course of treatment. Cryotherapy, Brachytherapy (with radiation?) and now even the HIFU Therapy are in my thought processes. I need to know much more before I finally decide, and only have (self imposed deadline) until December 30, 2006 to decide; that is the end of the 4-month Lupron period.
Almost six weeks have passed since my Lupron-4Mo. shot, and an interim PSA check was done on Oct. 04, 2006: result 2.41 ng/ml (was 5.0 when diagnosed). Before the Lupron shot, the Flomax seemed to be helping with my ability to urinate, but now I am back to where I was before Flomax: some difficulty, intermittent weak stream, having to go aboout every hour or so and waking up once or mostly twice at night. I do not know if this is related to the Lupron or not.
The expected hot flashes arrived with a vengeance, but don't seem to bother me so much during the day; BUT it DOES bother me that they DO wake me up at least once at night.
I continue to read and study the information available, especially the experiences shown on this wonderful site. In particular, I was positively amazed at the experience of Mr. Bill Lambright (under the Cryotherapy heading). His search for information was so remarkably like my own that I thought that I was reading about myself!!! The reading of "A Primer on Prostate Cancer", the initial information on cryosurgery, the contact with Dr. Onik with the discovery that he did NOT accept insurance, and the referral to Dr. Brunelle on Tampa, FL are EXACT parallels to my path so far, and that is as far as I have gone on this journey. I plan to contact Bill after I finish this update.
I have an appointment with my first urologist tomorrow, which may be my last with him unless he demonstrates that he can be more forthcoming and straightforward with me. I have an appointment the following week with a different urologist to see if he is willing to work with one who hopes to be "an informed prostate cancer survivor.". I am now wondering if I really need to be seeing an Oncologist as well???
That's all for now, and "may God bless us every one!".
When I last posted I was still in a state of shock and almost total confusion. Since then I added three to my list of doctors, and subtracted one! That is where I left off with my story. Continuing:
I believe that my indecision in this process was probably the best thing for me, because I proceeded to read and study everything that I could find about prostate cancer treatment methods (modalities, as the doctors called them). Even though I had "jumped" into the decision to go ahead with the hormone treatment with Lupron, it turned out to allow me the time that I needed to do this study. I found the wonderful book "A Primer on Prostate Cancer" by Strum and Pogliano. [The full title of the book is A Primer on Prostate Cancer. The Empowered Patients Guide. The ISBN number is 0-9658777-6-0. This invaluable book has been available at Amazon and Barnes & Noble as well as at the Life Extension Foundation site, whose support saw the book published.] I recommend this book to anyone, patient or family member, whose life has been affected by prostate cancer. It is a reference book, and parts may be difficult to understand, but it is worth the effort. I am still reading it.
The first urologist, who shall remain nameless, is no longer my doctor! He was even more non-forthcoming during my last visit, except to say that the Lupron was working because my PSA had dropped from 5.0 ng/ml to 2.4 ng/ml. Perhaps he sensed from my questions that I wanted to become more involved in the decisions that would ultimately chart the course of my journey, for the rest of my life. It was very plain that he considered himself to be the doctor and as such my opinions and questions were not critical or important in so far as the choice of treatment for my cancer. He had recommended the cryosurgery, which he would do, and that was it. My final question to him was: "If I went to a center of excellence for my treatment, either in state or out, would he continue to be my urologist?" The answer was a definitive "No! I have my own patients to take care of!" I left his office knowing that I would not be back!!!
I promptly made another appointment with my primary care physician, during which I explained the situation, and he gave me a referral to another local urologist in mid-October. I have an appointment with him to see if he is willing to work with one who hopes to be "an informed prostate cancer survivor." I continued to read and study the prostate demon, and felt that I was becoming less confused, but still in need of more information to make a logical decision that would be "best" for me. During the next week, while waiting for the next appointment, I continued my research. One effort entailed simply entering "prostate cancer treatments" in the Google search engine. The amount of information found was staggering! I sat down at the computer for hours, determined to read as much as I could about the various methods, but eliminating cutting surgery for removal of the prostate gland.
The more I read, the more that I became aware of the need to carefully consider the possible side effects and results of the different treatments. I decided that my number one consideration would be "quality of life" because I just did not want to be incontinent, nor did I want bowel problems or to be impotent if it could be avoided. One site in particular brought this home to me: Prostate Cancer Treatment Guide listed in tabular form all the treatments that I had been seriously considering, and ALL simply scared me out of my mind! The impotence and incontinence things were in just about all of them! I became discouraged and once again almost totally confused.
Nevertheless, in this particular late night session, I methodically continued down the list of sites, reading and taking notes as I proceeded. The sixth on the list was Prostate Cancer Foundation, that I started going through at midnight on this particular October night (can't remember the date). In reading through the information on radiation therapy, I found the following: "In some centers, proton-based therapy is used during IMRT rather than the more traditional photon-based therapy. Although early studies have shown that oncologists may be able to manipulate these beams even more precisely, this technology is not yet widely available. Because the treatment planning with these types [PROTON] of therapy are far more precise, higher "and more effective" doses of radiation can be used with less chance of damaging surrounding tissue."
What was this??? This was the first time, in all that I remembered seeing, or had been told by any doctor, anything about "proton-based" radiation treatment for prostate cancer. "Less chance of damaging surrounding tissue"? Suddenly I was wide-awake! Now I remembered that I had seen something about this Proton thing in the book "A Primer on Prostate Cancer" that I had not completely read. I went back and read it, then I immediately Googled "Proton prostate" and there was a multitude of sites and information!! It was now almost 1 am, but I continued to read, becoming more excited as I read!
[FULLER CLEARLY HADN'T LOOKED TOO CLOSELY AT THE PAGE TREATMENT CHOICES BECAUSE IF HE HAD DONE SO HE WOULD HAVE FOUND PROTON BEAM THERAPY NOT TO MENTION THE STORIES OF MEN WHO'VE BEEN THERE AND DONE THAT ON THE EXPERIENCES PAGE]
The very first site: Prostate Cancer and Proton Treatment was entitled "What your Doctor may not know, and might not be telling you." WOW! Then I read about a medical center that I had never heard of: "Loma Linda University Medical Center" (LLUMC) in California that had been using Proton Beam Therapy to treat cancer since the early 1990s!! And then I read about the other centers in the U.S. using this proton treatment, including Massachusetts, Indiana, and now Texas and Florida. Loma Linda has now treated over 11,000 cancer patients with the proton therapy; over half of these were prostate cancer patients!!!
I urge any newly diagnosed prostate cancer patients to check this site and the many others listed to decide for themselves if this treatment should be considered in the decision process. No cutting, freezing, or "stabbing!" No pain! No radioactive pellets forever in my prostate! (One wonders how this could be explained to Airline Security Personnel???) Minimal side effects! No "Recovery Time!" Medicare covers it! Comparable history for outcome to other treatments! The only drawback was that I would have to travel 2,600 miles to Loma Linda to have my treatment!
I decided to dig into this in depth. For two weeks I spent most of my time making phone calls to various centers that offer the Proton Treatment (There are only FIVE in the US), and continuing to read everything that I could find about it, including literally hundreds of testimonials from men that had received the treatment, all of whom had received their therapy at LLUMC!
In the mean time, (October 16) I met with my NEW urologist, Dr. Ovid Vitas, for an initial consultation and exam. He was most forthcoming and supportive. I posed the question about out-of-state treatment up front, (would he remain my urologist) and he had no problem with it; night and day from the first urologist! His DRE found the prostate fairly smooth with one harder area (the nodule had apparently shrunk). He confirmed that the reduction in the PSA from 5.0 ng/ml to 2.41 ng/ml showed that the Lupron was working. He stated that in his opinion I did not need Casodex and/or Avodart in conjunction with the Lupron Therapy. He carefully went over the available treatment options with my wife and I, ruling out surgery. He did NOT mention Proton Beam Therapy! He recommended Radioactive seeds (Brachytherapy), which he would do himself. He concluded with the statement that I needed to decide and to come back in a week and tell him of my decision. I mentioned that there was a new Jacksonville FL Proton Beam facility, but he apparently did not know of it, because he thought that it must be associated with the Jacksonville Mayo Clinic Facility (it is not, it is University of Florida Shands). This I did not go into with Dr. Vitas. He did not seem to want to talk any further about Proton Beam, so I dropped it.
On October 20, 2006, about three weeks after I "discovered" the Proton Beam, my decision was made! I sent my records to LLUMC in hopes of getting an appointment with Dr. Carl Rossi at Loma Linda for a consultation and Proton Beam treatment. I also sent a fax to Dianon Labs, (biopsy report) asking them to send my slides to Dr. Epstein at Johns Hopkins for a second opinion reading. (The slides were sent out Oct. 25) Tuesday, October 24, 2006: Follow up with Dr. Vitas, my new urologist. This was a most surprising and interesting meeting, although very brief. I sat in his office, and asked a few questions regarding the Lupron that he answered. Then I told him that I had decided to try for Proton Beam Therapy at Loma Linda University in California.
His immediate response, no hesitation, was "Good for you!" I had prepared some data on PBT and Loma Linda, and gave it to him, which he thanked me for, he then reached over and shook my hand, and said to be sure to have all results and records sent to him! On the way out of the office, he put his hand on my shoulder and said: "Enjoy your stay in Loma Linda, it is very beautiful; I have been there!" I was totally shocked, but looking back, I realize now that he obviously knew of the Loma Linda Proton Beam Therapy; he no doubt had been there for some reason, perhaps a symposium. This is just another example of the fact that a patient MUST do his own research and reach his own decisions.
Wednesday, October 25, 2006: I received the phone call from Loma Linda University Medical Center! My records had been received, and Dr. Carl J. Rossi had reviewed them. I was accepted for a consultation. We made the appointment for 9 a.m. December 26, 2006 almost exactly four months since my diagnosis; the treatment will commence in early January 2007, and will consist of one treatment a day, five days a week, for about nine weeks, completing in mid-February 2007.
Thursday, October 26: LLUMC Fed-Ex'd a package with housing, a tape, and other information, which we received Oct. 26. We consulted the housing list; picked out a small house to rent, called and confirmed it. It will be available when we get to California; the patient there is just finishing up his treatments then! It is just three blocks from LLUMC; I will WALK to my treatments!
Tuesday, October 31: Received Johns Hopkins Report from Dr. Epstein: Highest GS was 7 (NOT 8) !! However there was a notation: One sample had evidence of Perineural Invasion. I have read what I could of this, and sent Dr. Rossi a message asking him to clarify what this might mean in terms of my treatment. From what I have read it may not mean much.
SO! My wife and I are much relieved now that a decision has been reached. We are actively planning our western trip; we will drive, stopping at Carlsbad Caverns and several other sites that we have not visited, as well as visiting some relatives we have not seen in years. This is our "RADIATION VACATION!" We are determined to enjoy it and get on with our lives!
I will update again after I get to California!!
I will try to keep this update more concise.
First let me apologize for not updating while I was in Loma Linda CA receiving my treatment. I should have, but the three months went by really fast!
Also let me apologize if anyone tried to email me at the cnsjones@bellsouth.net e-mail address and did not reach me; my BellSouth did not work in California.
My PSA is now less than 0.10 ng/ml; down from 5.0 in July after the diagnosis. However I did have a four month Lupron shot in August, so my true PSA will probably not be revealed until my next PSA check in three months.
To any that are still trying to make a decision on a treatment let me say that you MUST consider Proton Beam Therapy! My experience was better than I even dreamed of!
Loma Linda University Medical Center (LLUMC) is one of the finest hospitals in the world! Check it out! But there are now four other Proton Centers in the U. S. and more on the way. I have a "White Paper" on the current status of Proton Beam Therapy and am happy to share with anyone, just email me at cnsjones@yahoo.com.
My final decision was based on reading literally hundreds of testimonials on the "Proton BoB" Web Site, and then doing additional research, speaking directly with six men who had had the treatment at times varying from 7 years ago to 1 year ago, and having my final questions answered by three of them, one a medical doctor, another a radiologist, and the final one was Bob Marckini, a retired engineer. (Read his book!) I have personally met and also talked with Bob many times on the phone, and he was the final factor in my decision to go with Proton Beam Therapy.
My personal research found Protons, NO doctors will tell you about it, at least none of the six that I consulted did! In my opinion, Radical Prostatectomy as a treatment will cease to exist within ten years! Certainly it should no longer be called "The Gold Standard!" I believe that Proton Beam Therapy will replace it as the treatment of choice regardless of age of the patient, so long as the cancer has not metastasized, and even then it may help depending on the extent. While I was there, there were three men at LLUMC for "salvage" Proton treatment that had Radical Prostatectomies and the cancer was back!
The treatments were "a piece of cake!" I was fortunate to get an early time (7:30 am) and the set up was about 20-25 minutes, then the treatment itself was from 2 to 3 minutes! I was as free as a bird for the rest of the day, and weekends were totally mine since no treatments on Saturday or Sunday. I walked the three blocks to the hospital each day for my treatment. We worked out three or four times a week at the fabulous "Drayson Center" (a world class fitness center complete with swimming pool, handball courts, and indoor track!)Free to patients! We went to Lake Arrowhead, Big Bear, Edwards AFB (NASA Dryden)and generally enjoyed eating out a lot and relaxing.
During the ten weeks that I was going through my treatments, I attended every Wednesday night Education/Support Group meeting, which usually had from 80 to 100 patients and their wives or caregivers attending. Usually about 8 or 10 were "newbies" just starting, and about the same were "graduates" finishing up; but there were usually at least 2 or 3 "Alumni" who were back after completing treatments (some for their follow up visits, others just enjoying the California winter and visiting), some as long as 10 years ago. [You do NOT have to return there for your follow up checks, your local urologist or oncologist can do them.] Incidentally Loma Linda has now treated over 12,000 cancer patients, and over 65% were prostate cancer victims.
ALL these alumni were unanimous in their praise of the treatments and the Loma Linda Hospital, and ALL were experiencing good health, no indications of prostate cancer (extremely low PSA), and NONE had experienced any serious side effects from the Proton radiation.
In my case, the only thing that I experienced was some fatigue in the afternoons starting about half-way through the process, and three inch diameter "sun-burn" circles on my hips (both sides) that developed toward the end of my treatments and are now fading. Even these did not hurt, just pink skin. The doctors tell you that you may develop a SLIGHT rectal bleeding after about three months while the delicate wall tissues that did receive some of the protons go through a healing regeneration. A few of the alumni said that they had this experience, and it only lasted a short while. So far I have not experienced this, but my treatments were only completed on March 8th.
Each of us must make up our own mind which treatment is best for US as an individual. Careful study will probably show you that ALL the "modalities" will yield at least similar chances of "cures." [But PLEASE do NOT consider surgery!!!] RP is MAJOR surgery with the ever present risk of many terrible side effects and even death!
With God's help we hope to make the correct decision. In my case it ended up down to the simple question: "Which treatment is most likely to provide the Quality of Life that I want for the rest of my years on God's earth?" I had no desire to risk being incontinent, have a ruptured colon, or have the possibility of "migrating" radioactive seeds. In the end, it became almost a no-brainer, and I thank God that I was able to find "The Beam!"
Incidentally, (after I asked) I had doctors tell me that the treatment was "too new" to have a history; that it was "experimental" and that the treatment would "cause just as many problems as other forms of radiation" treatments. These statements are all FALSE! Medicare pays for PBT, and Medicare will NOT pay for experimental treatments; in my case Medicare is paying for about 80% and BC/BS is paying the rest.
The treatment has been used in the US in a hospital setting since 1990 (at LLUMC); and there are few to no side effects compared to ANY other x-ray or photon radiation. Again, NONE of the doctors that I consulted even mentioned Proton Beam Therapy as a treatment option! In my opinion, this is going to change rapidly as new Proton Centers are built.
Call me or email me if you want any further information. I am "A Proton Beam Advocate!"
As of this date, I am having ZERO side effects from the protons. No urinary problems, no rectal bleeding, no NOTHING! Still experiencing some side effects of the Lupron, although these are now lessening, and my sexual capability, lost due to the chemical castration, is slowly returning!
I had my first post-treatment PSA August 9, 2007, five months after completing Proton treatment, and six and one-half months after my last Lupron one-month shot. The PSA was 0.17 ng/ml. At first glance this appears to be very good, and it may end up being so. However, to me it indicates that I am still, about five months after the Lupron, experiencing the effects of the ADT (Androgen Deprivation Therapy), since I have read that it may take twice as long as the total ADT treatment to recover from the effects of this powerful drug. This means that my PSA is most likely still low due to the ADT, and that I will probably NOT get a reasonably correct PSA reading until after December 2007, about ten months after cessation of the five months of ADT. In my mind I am "cured," but I know that I will play this PSA game every 3 or 4 months until I can determine a trend, and then for the rest of my days as required.
The general experience for post-Proton treatment WITHOUT ADT seems to be a gradual reduction in PSA levels starting at about one-half the pre-treatment level five or six months after completing the protons. So with the ADT still in my system, I do not know what to expect. If there are others out there that have experience with the post-treatment PSA levels with the ADT administered, please let me know. I have "accepted" this as a reality, and do not intend to worry about it, but would like to find additional data.
I will have my PSA rechecked in December 2007, and will update then if nothing new occurs.
Saturday, December 1, 2007: It has now been almost nine months since I completed my proton beam treatment at Loma Linda. I received the results of my last PSA check yesterday. The trend is still down, so it appears that in spite of my fears that Lupron (last one month shot Jan. '07), was making my PSA "artificially" lower, the proton treatment is still in the process of killing off cancer cells. PSA 0.08 ng/ml, down from 0.17 in August 2007.
I remain in good health, getting about 4 or 5 hours of exercise each week (3 hours at the gym, the rest walking or bike riding), and attempting to be more diligent in good dietary habits. I have not been able to completely eliminate red meat, nor coffee, but I have cut back. I am still about 5 to 8 pounds overweight at 185. My libido is still low, but with some encouragement, I am "functional." At 74, I presume this is normal, especially after the ADT.
Still no side efects from the protons. No rectal bleeding, no difficulty in urinating, and sleeping my normal 6 or 7 hours without having to get up. If not for the decreasing PSA, I would not know that I have been treated for PCa.
I will report again after my one-year mark.
Fuller C. "Sonny" Jones
March 2008: It is hard to believe that a year has passed since I completed proton beam therapy at LLUMC (Loma Linda University Medical Center). I remain "as if prostate cancer never happened", except for a reduction in libido. I attribute that to the five months of ADT (Lupron) that I had, plus just "gittin older" (74).
My PSA in early March was 0.073 ng/ml (was 0.077 in December). Knowing that PSAs can vary greatly, I am amazed at these numbers. But I will take them! The doctor orders what is called "Third Generation" or Diagnostic lab results, and I suppose that is why they are to three decimal places. I have now graduated to six month intervals for my PSA tests, so another will be in September 2008.
New proton facilities will be coming on-line in the next few years (University of Pennsylvania at Philadelphia and Hampton University in Virginia are two such). In spite of the proliferation of new centers, the mainstream media and medical profession still do not mention proton beam therapy as an option for prostate cancer treatment.
On March 25, 2008, the Florida Today newspaper ran an Associated Press article detailing the side effects of treatment for prostate cancer that did not mention proton beam therapy, but did mention most other treatments with the potential serious side effects from them. These side effects are generally not experienced with proton beam therapy. It remains for the newly diagnosed prostate cancer patient to "find" proton beam therapy for himself. His doctor is not likely to inform him of the option.
I have started a new Yahoo Health Group to help others with information about proton beam therapy for prostate cancer. Please visit and join this informative forum, where your questions about the treatment and availability are welcome.
I have also written a book about my experiences in dealing with the diagnosis of PCa, "finding" protons, and receiving proton therapy at Loma Linda University Medical Center.
I will post another update after September 2008.
As some here know, when I was diagnosed my initial Gleason Score was reported to be 4+4=8, with PSA of 5.0. Pretty aggressive. I had a second opinion on the biopsy by Dr. Epstein at Johns Hopkins, and the results were 4+3=7 - still fairly aggressive. At the time I knew nothing. My first uro wanted to do cryo, and because my prostate gland was about twice normal size he wanted to shrink it with Lupron (four month shot). This turned out to give me time to learn, and to find proton therapy.
While at Loma Linda, my doctor (Rossi) indicated that there was "some evidence" that a combination of ADT and proton therapy yielded somewhat better "long-term results," and he wanted me to receive two more one-month Lupron shots, so that the Lupron would be in my system throughout the proton treatments.
I was really having some bad side effects from the Lupron, and resisted this. I wanted to begin the recovery from the Lupron, which I knew would take a long time. Finally I relented and went with one more shot, which was administered January 22, 2007. This essentially carried me through the protons, which completed March 8, 2007.
The point of all this is that I am now a "believer" in this ADT/proton (or ADT/IMRT) approach for anyone with Gleason of 7 or 8. While the side effects of the Lupron or Zolodex (common ADT agents) can be bad for some, you do recover. If I had it to do over, I would have followed the doc's recommendation to get the additional one month shot. But it may not have been necessary in my particular case, perhaps because the one additional shot "carried me through."
Why am I a believer?
My PSA continues to decline! The latest, nineteen months after the last Lupron shot, and almost 1 1/2 years after protons is 0.050 ng/mL.
The ADT will initially "mask" the true PSA as compared to those that have protons without ADT (who usually show a decline from the higher level of the original PSA when diagnosed), but I have been assured by two urologists that by six months after ADT, it should be gone from my system, and the PSA should be an accurate reading. So I am feeling pretty good about my PSA! And since my physical just completed turned up no problems, I am going on with "celebrating life!"
And to those who are wondering if the ADT treatment is worthwhile in combination with any radiation, I say here is a bit more "evidence" that it is.
It has now been two years and three months since I completed my proton treatment at Loma Linda.
My latest PSA taken about three weeks ago is 0.05 ng/mL, so my thinking is that I may have reached "nadir" (low point). I have not yet experienced the "PSA Bounce" that some have, so we will see. My health is good, and I am able to do physical work in the yard, which I enjoy except for the heat of summer here in Florida.
I have had no effects from the protons. I continue be sexually "potent" and over the last few months have actually improved in sexual capability (for a 76 year old guy!), so perhaps the effect of Lupron is longer lasting than some doctors believe or know. (I had a total of five months of Lupron, the last shot in January 2007). For the benefit of those living in the northeast, a brand new proton center is about to open in Philadelphia, associated with the University of Pennsylvania.
My "Protoninfo" Group now has 146 members, consisting of folks from all over the United States and a few from overseas. They represent men who have received treatment at all five of the proton facilities in the U. S. Join us if you would like to learn more.
Fuller
Well it has been a while, hasn't it? Busy, busy - seems more so now than when I was not retired! Glad to see you have some good help now Terry! Thank you George for the reminder. Terry's YANA is one of the BEST places in the universe for someone just diagnosed with prostate cancer. His service is invaluable.
As to how I am doing, GREAT! PSA stable at 0.1 ng/mL for the past year; now on yearly checks. I completed my treatment March 08, 2007 at Loma Linda, and as most who went there can testify, the experience was powerful, unique, and life changing! Not to mention ZERO side effects. We drove from Florida to California, rented a small house near the hospital, and had a wonderful three month "Radiation Vacation."
I am busier than ever, trying to keep up with exercise because of too many hours on the 'puter doing genealogical research, writing, and various other enterprises. I am the Brevard Chapter Genealogist FLSSAR and now the president of the Brevard Genealogical Society for the 2011 year.
Plus I am running a "Protoninfo" Yahoo Group to help others learn about proton therapy for ANY cancer that has not metastasized.
Low PSAs to all!
Fuller
First: I want to thank Terry for his monumental efforts in providing YANA. YANA was a great comfort and source when I was diagnosed, and I am sure it is to many others. Terry is a remarkable and courageous individual. Anyone who has not read Terry's own Mentor Experience should do so!
Second: I believe that proton radiation is sufficiently different from "External Beam Radiation" to warrant a separate category in the first "Treatment Method" choice list. [Whilst Sonny's views are always of interest, it is difficult not to categorize Proton Beam Therapy as "External Beam Radiation" because that is what it is - radiation from an external source. RALP (Robotic Assisted Laparoscopic Surgery) is, in the minds of proponents of that therapy very different from a manual RP (Radical Prostatectomy), but both are Surgery.] For someone not technically knowledgeable, it would appear that proton beam radiation is just another form of photon radiation; IT IS NOT! The "elegant physics" of protons is why the number of proton centers (which cost many millions of dollars) continue to increase. One has to study proton therapy to understand this. Proton radiation is very precise; almost the entire "dose" is deposited in the target tumor location, and conformed to the individual's prostate gland shape. There is almost no "scatter" and the radiation "STOPS" at the target. This is because of the Bragg Peak effect, which is unique to proton radiation; it does NOT exist with any form of standard photon (x-ray) radiation.
Third: For some reason my own "story" does not come up with searches of either "proton beam radiation" OR "proton beam radiation with ADT" (which is what I had). I would appreciate this oversight being fixed. [It does now.]
Now for my "update": I am now over five years out from completing my proton therapy at Loma Linda. My PSA checks are done yearly now, and have been stable at 0.1 ng/mL for about three years. I have had two strokes - one minor, and one fairly major that affected my peripheral vision; the last one in late 2007 that I believe to be stress related. I am on Plavix, and probably will be for the rest of my life. At age 78, I remain active (but I don't get enough exercise, something I am working on correcting). I spend too much time at the computer and have gained weight, so am also working on my diet. I am no longer what I would consider "sexually active," but when the occasion arises - pun intended - I remain capable! Remember, both my wife and I are over age 75 (we have been married more than fifty years).
I believe that anyone must try to remain mentally active as well as physically to achieve good health, so I try to do that. I now have more than 270 men on my protoninfo group - representing men who have received treatment from all but two of the latest proton centers. I invite anyone to join us there to ask any questions about proton therapy. I also am the Chapter Genealogist in the local Sons of the American Revolution, and Past President of the Brevard Genealogical Society. I read fiction and non-fiction and try to stay "computer literate," (just upgraded a new computer to Windows 7). I am working on a revision to my book "Prostate Cancer Meets the Proton Beam." In short, I am "pretty busy" for an "old guy!"
Again, thanks Terry!
"Sonny"
Fuller Jones
Hard to believe that it has been 6 YEARS since I completed my last proton treatment at LLUMC. Lots of water under the bridge and over the dam since then. Had my last PSA in April 2013 (once a year now): less tha 0.1 ng/mL. Stable for the last four years.
I reach my 80th birthday in June, and looking forward to MORE! My head is on straight now, no longer worried about what that first uro tole me (who wanted to do cryotherapy on me and told me that if I did nothing I had about two years to live - that was in August 2006).
About all I can say to those who are undecided about treatment is to choose proton therapy and get on with your lives!
And thanks again to Terry Herbert, for his wonderful YANA; and thanks to Bob Marckini, and all the "Proton Guys" I have met and who help spread the word.
If anyone wants to ask questions or just to chat, I am always available. E-mail me or call on the phone.
Best and low PSAs to all,
Fuller
Right: time flies when you are having fun (and a truism is that the older you are the faster time flies)!!! Completed treatment March 2007 at Loma Linda (miss that place!)--- that is SEVEN years. Almost 81, need to exercise more, but otherwise in good shape. For any "doubters" out there, PROTON THERAPY WORKS!!!!! Feel free to call or email me at any time. Fuller
It has been a while, hasn't it! Time flies when you are having fun, especially when the original doc told you eight years ago "If you don't do what I recommend, you have less than two years to live!"
I am an active 82 year old who does genealogy (just applied for "Certified Genealogist"), and still tries to keep up with a 3/4 acre overgrown Florida home which we moved into some 48 years ago.
Please if you are trying to decide on treatment, check out Bob Marckini's "Brotherhood of the Balloon" website. Do NOT let docs tel you negative things about proton therapy. Many of them STILL profess ignorance, when they know the treatment is a wonderful option. They are protecting their own livelihood, plain and simple. For yor own good if you are newly diagnosed, please check out PROTONS! Do not hesitate to call me or email me if you feel the need.
That's my story and I'm sticking to it!!! GO PROTONS!!!!!
Fuller
Well, another year has gone by that PROVES Proton Therapy WORKS!
I am older, now 83, and sometimes feel it, but that goes with the territory. I am still active enough to do some yard work, and yesterday I was up on the roof adjusting an antenna.
I am a genealogist and applied for and am now "Certified" by the Board for Certification of Genealogists - and tha process was not easy, took over a year to build a seven part portfolio that was approved by three separate judges. BUT:
Having reached this ripe old age, I suddenly realized that my will and revocable trust was last updated in 2001, so that is now a priority, and genealogy is on hold...
I am still available as a mentor, call or email anytime; PROTON THERAPY is now available at several locations in Florida. I can personally vouch for Protons, if your Gleason is less than 8, and bone scan clean, and PSA 5 or less. If you do not meet any of those criteria, Protons may still help, but ADT and/or chemo may have to be added to the mix. YMMV.
Good luck to all!
Samo-Samo. I am still active at 84, now 10 years from treatment, PSA remains stable at 0.1 ng/ml. No side effects from Proton Beam Therapy, which I believe to be the BEST treatment for low/intermediate grade prostate cancer (and possibly more advanced prostate cancer when used in combination with other treatments).
To anyone contemplating surgery, I say STOP!!!! Proton Beam is the alternative.
Call me or email me if you have questions.
Fuller Jones
Thanks YANA!
I encourage all who have been diagnosed with PCa to study the stories on YANA. Also just Google "Proton Therapy" and do not fail to go to "Proton Bob's" website.
In one of my early posts, I thought many Proton Centers would be built. Since my treatment this has happened! There are now about 25 Proton Centers with another 10 or so under construction. This would NOT be the case if the treatment did not work.
In my opinion PROTON BEAM THERAPY IS THE NEW GOLD STANDARD FOR Prostate Cancer treatment!!!!
You do yourself and your family a HUGE disservice ir you do not investigate this.
I am now 85, active, and still a "Proton Beam Advocate."
Call or email me if you need more.
Fuller "Sonny" Jones
I am "jumping the gun" so to speak for this 2019 update, because I am approaching my 86th birthday.
I just took a look, and found that there are now 27 Proton Centers in the US! There were FIVE when I made my decision to go to Loma Linda, which was about 2,600 miles from our home in Florida.
There are more than thirty in other countries!
I remain amazed that surgical removal of the prostate is a considered a viable treatment for normal (Gleason 8 and below) prostate cancer (PC) patients. In my opinion, surgery is a modality of "last resort!" The potential for problems with surgery EXIST and should not be ignored just because a surgeon recommended it. You need to keep in mind that that is how he makes his living!
Any reasonably intelligent person, after really investigating Proton Therapy as a treatment for PC will almost immediately know that it should be considered as the first choice if at all possible. I know that distance from one of the Centers is a consideration, and the time of treatment is a factor, but so is your "QUALITY OF LIFE" following treatment! This should be your primary consideration.
For my personal update: Now doing PSA only once a year just as a part of my standard physical; still "0.1 ng/ml." Still need to exercise more, still spend too much time on the computer, doing genealogy research, but it keeps my mind active. Still reasonably active for an almost 86 year old man, and still do minor yard work even in the heat of FL summer.
PROTONS RULE!!! YANA IS STILL THE GREATEST!!!
Call or email me if you need to!
Fuller "Sonny" Jones
Well, I am now (as of yesterday) 87, and it has been almost 14 years since I was diagnosed (August 2006). I have now lived longer than all my known male ancestors, and I am a genealogist and know all back to 1746. This is a little different from my first urologist, who told me that I would be dead in two years if I did not use his treatment.
I still disagree with the characterization of Proton Beam treatment for prostate cancer as just plain "External Beam Radiation," even though that is basically what it is. The difference is the magnificent physics of the proton! Proton Beam "targets" the prostate, does NOT "scatter" to adjacent organs, and STOPS at the prostate gland. I firmly believe that anyone who has been diagnosed with PC is doing himself a great disservice if he does not investigate proton therapy before deciding on a treatment.
Good luck to all!
Fuller
Just take the time to read "my story." It is all true and accurate.
I am now 88 years old, and still active and fairly energetic, At this point I am not sexually active, but have a normal lifestyle. My wife of many years is my steadfast helpmate. We meet with my two children (now aged 58 and 60) on a regular basis for a homecooked meal and a sometimes contentious Scrabble game!
All I need to say is "GO PROTONS!!!"
Fuller C. Jones
As of yesterday I am now 90 years old.
My new Birthday Cap says "SO FAR THIS IS THE OLDEST I HAVE EVER BEEN!"
My original doctor said: "If you don't do what I recommend, you have less than two years to live!" His "method" was cryo, and this was in 2006!!!! Well I chose Protons, and the rest is history.
READ MY STORY! It "Tells the Tale."
Thank God for Proton Therapy!!!!!
UPDATE: I am still fairly active, do minor yard work, and do not get enough exercise!
Please email me with any questions.
Fuller Jones
("Sonny J")
I am now 91 years old, and thanks to Proton Therapy at Loma Linda Ca, I remain free from prostate cancer. However I did suffer a heart attack on June 11, resulting in hospitalization and the insertion of two stents. Tis is totally unrelated to the cancer or treatment. I remain active but weaker than b efore the incident, and in the "recovery" mode.
I remain convinced that Proton Therapy for PCa is the new "GOLD" standard.
Fuller C. Jones
Fuller's e-mail address is: cnsjones AT yahoo.com (replace "AT" with "@")
