THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.

DIAGNOSIS: I thought I was in good health when I got that first PSA test that came back, 113.6, and so did my primary care doctor, who advised me against getting the test. I'm glad I was assertive, especially as my PSA doubling time was probably between three and four months. I had serious cancer at diagnosis, but with another few months or a year, I could have had detectable if not widespread metastases. As it turned out, a traditional (technetium) bone scan, a CT scan, and a ProstaScint at Johns Hopkins found no evidence of mets. The doctor was embarrassed. My wife and I were stunned, especially because I thought the highest a PSA could go was 10. My first thought on seeing that PSA of 113.6 was: "It can't be as bad as it looks because I'm still breathing."

TREATMENT DECISION MAKING: At the urging of my father-in-law, also a prostate cancer patient with a challenging case (died decades after diagnosis of something else in his 90s), I was on Lupron within a week of diagnosis. However, I studied like crazy and thought I knew enough to select surgery as my main treatment. The Johns Hopkins scheduling staffer took my stats over the phone, took perhaps a couple of minutes to consult, and summarily rejected me as a surgery candidate. My wife and I were disconsolate, but looking backward, I'm profoundly grateful for that rejection. Instead, after the negative ProstaScint, and then after a radiation consult, I was offered radiation, but with the understanding that chances of cure were low, in view of my advanced case. I accepted radiation at Hopkins, and began preparing with the addition of Casodex to further shrink the prostate. However, as my PSA fell dramatically, and as I learned more about radiation back then in 2000 and about ADT, especially ADT3, I changed my mind and decided to rely on ADT. Throughout the decision process I was invited to join several clinical trials but elected to try a more established approach instead. I was excited about informal news about ADT3. I figured I just might be one of the many patients who responded amazingly well, though even physicians who were leaders in using ADT3 were not confident it would work well in my circumstances. That was the commencement of my sojourn under intermittent ADT3, now extending into year fourteen.

PROGNOSIS: All of this was in the context of a prognosis of five years: three good years and two declining, the same version given to me by two respected urologists, one at the City of Hope in Duarte, Ca., and one at Johns Hopkins. I would not shake of the expectation of short survival for years, though my first National Conference on Prostate Cancer at Long Beach in September 2000 raised my spirits and hope.

SECOND SHOT AT TREATMENT DECISION MAKING: Well, I did so well with that hail Mary pass using ADT3 that, to make a long story short, I was judged eligible for a curative attempt using radiation in the fall of 2011 through the winter and spring of 2012. I'll get to that later, but the short version is I had 39 sessions of TomoTherapy at Fairfax Inova Hospital in March and April 2013, including 78 Gy to the prostate, and 56 Gy to the pelvis, with proximal seminal vesicles also included. I'm on my fourth round of ADT3 in support of that, and will likely be on it for at least another year, giving me a likely total of 18 months to 24 months.

My first round of ADT started with Lupron in December 1999, was augmented with Casodex (50 mg daily) in March 2000, and further boosted with Proscar in September 2000. At that time I had learned about ADT3 only from the internet, chiefly from "Dr. Bob" Leibowitz, and, eager to consult with an oncologist first hand, I had basically flipped a coin to choose an eminent oncologist at Johns Hopkins instead of a somewhat more distant oncologist. I was especially interested in his view of Proscar, which did not seem to be making much of a difference. After a month on the drug, my PSA had dropped only from 0.7 to 0.6, apparently continuing to level off. I was disappointed when he advised me to keep the Lupron and Casodex but to toss the rest of the Proscar in the trash, dubbing it useless, and mentioneing research he had been involved with. However, my local oncologist and I both thought it worthwhile to finish the bottle. Well, the next test, about five weeks after the prior result of 0.6, was 0.3, a decline of 50%! I decided I liked Proscar, and the long and short of it is that my PSA kept falling, though slowly in comparison to declines achieved by most of us, until it reached its low point at less than 0.01in May of 2002. I stayed on ADT3 for three more months, stopping Casodex on July 23, with the Lupron running out at that time, but staying on the 5 mg of Proscar, as maintenance. (I was also on Fosamax, starting in December of 2000, after a DEXA scan documenting osteopenia, likely from the ADT to that point.) I had been on ADT, mostly ADT3, for 31 months at that point.

LIFESTYLE TACTICS: I had been fairly fit at diagnosis, with a fairly good diet, but I shortly got religious about nutrition and exercise. In essence, I eat a Mediterranean diet and exercise regularly. All this has been in a setting of prayer and ongoing spiritual life at my church.

My first off therapy period, continuing Proscar as maintenance and Fosamax, ran from July 2002 through May of 2005, a period of 34 months. However, when my PSA had hit 11.15in November 2004, with concurrence of my oncologist but the stipulation that I understood the tactic was investigational, I followed another lead from Dr. Bob and went on low dose (50 mg) thalidomide with 300 mg of vitamin B6 daily to help prevent peripheral neuropathy. That reversed the rise in PSA, knocking it back to a low of 7.2, gaining me several months of extended "off-therapy" time until my PSA hit 10.46 in May 2005. I hope to comment on side effects of thalidomide at another time.

I hope to update this narrative shortly with descriptions of my second, third, and fourth (current) cycles of intermittent ADT3. and my journey to and through TomoTherapy.

SIDE EFFECTS DURING THAT FIRST ROUND OF LUPRON, 50 MG. CASODEX, 5 MG PROSCAR, AND FOSAMAX

My impression is that side effects are often greater when men are younger, and now, with four rounds of ADT3 for comparison, I can state that that was the case for me at age 56 when I started round 1, though I did quite well overall.

The most intrusive side effect was a combination of hot flashes and sweats. At one point I sensed as many as three flashes an hour during the daytime, but they were not intense or debilitating, and the accompanying sweat was minor. I was grateful as a fellow member of my new Us Too/Man-to-Man education and support group complained that his flashes and sweats were so bad that he had had to stop ADT.

For me, the sweats and flashes were more bothersome at night, waking me a number of times and keeping me awake until they subsided, typically accompanied by enough sweat to be a nuisance but not enough to need a towel or new sheets. During these early months after diagnosis I was needing a nap after work to make up for the disturbed sleep. The urologist who was then managing my care was an advocate of diet and nutrition tactics for prostate cancer patients (Thank you!), and he advised trying some soy to alleviate the flashes and sweats. I was soon taking the same soy pills as women were taking for post-menopausal flashes. I'm convinced the soy helped some, and I've been taking soy ever since as well as consuming some soy foods, but the flashes were still strong enough to be a nuisance. (That is, unless it was winter and I was getting the morning paper or taking out the trash; then the flashes were a welcome source of wamth! Also, my wife and I had something else in common, and we could compare notes. LOL)

About that time I read a book by survivor Allen Salowe in which he suggested using fans, especially aiming them at the neck. I soon had an arsenal of fans: my car vents; on my office desk; a hand-held fan; and a stand-up bedroom fan that ran all night. The fans made a real difference, though I suspect the flashes and sweats were also subsiding somewhat as the months ticked by. At night the standing fan reduced the incidence of the flashes and sweats, but for those I did experience, it got so I could sense them coming on and forestall them with the hand held fan aimed at my neck, and the air blowing on sweat had an additional cooling effect. I was able to do the fan routine almost in my sleep. (Thank you Allen!)

I also achieved good control during the day, but I recall an incident that is funny now but not so much at the time. I was in a delicate negotiation at work, and a flash with sweat kicked off right in the middle of an especially tricky point. I was concerned my opposite number would observe that and consider it a sign of insincerity, which it was not. Fortunately, I got by without his noticing, leaving just a now humorous memory.

I'll jump ahead of my story for just a minute here. During this fourth round in 2012-2013, following advice from a consult with Dr. Charles "Snuffy" Myers, who is well known to many of us, I substituted Vivelle dot transdermal estradiol patches as my bone density protection agent instead of a bisphosphonate drug. I did that six weeks after restarting ADT3, and during the latter weeks I had been experiencing several mild flashes a day, with no or negligible sweating. Within a month of being on the patches, which were designed to reduce or eliminate hot flashes for women, I was no longer experiencing the flashes and that has continued.

I was aware that medication would likely end the flashes, but they were minor enough that I judged an additional drug, with its additional potential side effects and risks, was not warranted. That said, I believe such drugs are generally quite safe.

Well, it's time for dinner. I hope to follow-up soon with more about side effects.

I'm sorry for not updating, but one "side effect" has been a shortage of time due to active involvement with the disease in the PC community in the US, in US medical care politics, and caring for my wife. I hope to be able to fill in more detail, but my time seems to be in very short supply these days.

I am doing very well currently, believing I am likely cured of prostate cancer despite the grim details of my case, especially after diagnosis and in the early months.

Here's a quick overview:

First year: ADT only, evolving from just Lupron, to Lupron plus Casodex (now available as generic bicalutamide), to Lupron plus Casodex and Proscar (now available generically as finasteride) with Fosamax (now availabel generically as alendronate and quite inexpensive) to help protect bone density. I also quickly converted to the kind of diet recommended by Dr. Charles "Snuffy" Myers, and I kept up exercise; I increased daily green tea from 3 bags to about 14 bags daily, and I consumed hefty amounts of tomato products for their lycopene, including about 12 oz. of low-sodium V8 juice and 12 ounces of stewed tomatoes daily, the latter not fun but at my wife's insistence, plus incidental tomato products like spaghetti sauce. My PSA plunged from its initial 113.6 with a flare to 125 to about .6 where it was leveling off until weeks after I started the Proscar. Proscar enabled me to gradually get it down the next year to <0.01. My main side effects were ED, loss of libido, moderate hot flashes and sweats, some loss of strength, some weight gain, and osteopenia, diagnosed with a scan about 9 months after the initial ADT.

Second through 13th year (2013): As I had been able to get my PSA below 0.05 and hold it there for a year, I chose intermittent therapy with Proscar and Fosamax as maintenance. I did this for three rounds counting the first, achieving nadirs of <0.01 after the first round, <0.01 after the second, and a set of results ranging from .04 to .02 around the end of the third round. The latter involved a score of 0.04, a decline to 0.03, and then an increase to 0.04, at which time my regular oncologist and I decided the third vacation could start as a further decline was unlikely. However, after stopping the Lupron and bicalutamide (using generic at that time), my PSA declined, surprisingly, to 0.02. Later, my consultant oncologist, Dr. Myiers, and I judged that I might be experiencing an androgen receptor mutation (ARM) to the bicalutamide after so many years and decided to switch the antiandrogen to less convenient flutamide the next time I would resume full triple blockade. My doubling time during the fifth through tenth months of each vacation was about three to four months. All three times I used low dose (50 mg) of thalidomide with vitamin B6 (to reduce risk of peripheral neuropathy) to extend my off therapy vacations (off Lupron and the antiandrogen). Based on favorable results the first two times, where my PSA was increasing slowly around the level of 10 (on thalidomide) we had used as an approximate target to restart blockade, I stayed on thalidomide for longer than the previous six and eight months. It was successful to about the twelve month point of extending my vacation, but I realized I was experiencing slight peripheral neuropathy so stopped the thalidomide at that point. That was in July 2012, and I have the same level of slight neuropathy to the present (August 2014). I restarted blockade in October when my PSA had climbed to 19 the previous month. I would not have waited to this point if I had not been so successful with blockade in the past.

My fourth and so far final round of blockade (Oct 2012 - April 2014) involved Lupron, flutamide, Avodart, and estradiol patches to protect bone density. I liked the estradiol as I felt it helped me maintain muscle tone, energy and sharpness, but it lead to some breast soreness and gynecomastia, as expected. The addition of Cabergoline helped with the soreness and probably with the gynecomastia, though I'm planning on having reduction surgery after my testosterone recovers.

During this time imaging had advanced as well as the idea that a substantial portion of patients with advanced disease might have oligometastatic disease (basically meaning "few mets" - fewer than about five bone mets and no extensive node mets) that could potentially be cured by therapeutic radiation target to those mets. I had two of those advanced scans once my PSA had risen to the point where scanning was feasible (in fact, well past that point). Both the NaF18 PET/CT bone scan and the investigational feraheme Ultrasmall Superparamagnetic Iron Oxide particle (USPIO) lymph node scan - both highly sensative and specifc - surprisingly indicated NO mets! Therefore, instead of a combination of IMRT and seeds by Dr. Dattoli in Florida, I elected to have 39 sessions of TomoTherapy IMRT near my home at our quite advanced community hospital. The dose was 78 Gy, with 46 Gy added to the pelvis. Even though the scans indicated no mets, the thinking was to wipe out any extremely small mets that might be lurking. We decided on 18 months of supportive triple ADT as I had had a challenging, high-risk case. This seemed wise to me based on my own review of literature. While studies supported more than 6 months and often used 24 months or more of ADT in support of cases like mine, Dr. Myers noted that those studies were not using triple ADT, and that more than 18 months was likely to put me at considerably elevated risk of not recovering testosterone, especially considering that I would be 70 in 2013.

My PSA fell from 0.02 just after stopping ADT in April (continuing with Avodart as a safety net/security blanket) to <0.02 in June, the lower limit of the test. During Tomotherapy I experienced bothersome but quite tolerable rectal side effects, especially urgency, during the therapy and for several months therafter, with tapering to virtual normalcy at present (August 2014). I have limited but noticeable libido and some EF. My testosterone is probably recovering but was still below 20 - the lower limit of the test used at the time, in June 2014. My fitness level has remained good, thanks to the countermeasures - chiefly exercise and diet - that I have used for years. My lipid readings are extraordinarily good thanks to the diet (for instance, and HDL of 101, well above my LDL); there is no sign of anemia; and I am well below the threshold for diabetes. My weight is ideal and under excellent control, again due to the countermeasures I have learned.

Men newly facing my circumstances will have the opportunity to have advanced imaging early in their therapy. If I had been diagnosed this year but with what I have learned, I would get the advanced scans, go on 18 months of supportive triple ADT with estradiol patches and Cabergoline, do all the diet and other countermeasures, and go for some kind of advanced IMRT, like TomoTherapy.

I'm very glad I waited until the technology I needed arrived on the scene, and intermittent triple ADT gave me the time to do that.

I am extremely pleased with my situation, especially in view of the rough start back in 1999.

Since stopping the ADT3 in April 2014 (a fourth intermittent course that was supporting the curative radiation I had in 2013), my PSA has been 0.02 or lower, recently <0.02, the lower limit of the test my doctor is using. (The software won't let me put "<0.02" in the chart, but <0.02 is correct.

I am tentatively thinking I have been cured. My quality of life is very good at 72.

Jim's e-mail address is: luckyodie2 AT aol.com (replace "AT" with "@")

NOTE: Jim has not updated his story for more than 15 months, so you may not receive any response from him.