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  • To Screen or Not to Screen - 18 years ago tonight

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    Old 06-06-2018, 01:41 PM   #46
    IADT3since2000
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Selenium Test Result, and Looking Back on Selenium

    Still trying to catch up. It's been a busy month on the homefront.

    My test result: On May 1, 2000, a Monday, I got the result of my selenium test: 131, well within the normal range of 46 – 143, in fact fairly near the higher end of the range. This was a bit disappointing as I was hoping that low selenium would be at least a partial explanation of why I had been diagnosed with such an aggressive version of prostate cancer.

    What Selenium Is: Selenium, one of the elements in the Periodic Table, abbreviated as Se, comes in several forms. It is used as a livestock supplement in some areas, including areas in the US, as selenium deficiency causes problems for animals. In certain forms and doses, it is toxic.

    Why People Were Excited About Selenium and Prostate Cancer in 2000: I was interested in selenium as I had been reading about the exciting research that associated selenium deficiency to prostate cancer incidence and mortality. The key research had been a trial focused on selenium and skin cancer, which found no relationship (The Nutritional Prevention of Cancer Trial). However, a second look at the evidence in that trial as it related to prostate cancer (as well as lung and colorectal cancer) found some thought-provoking numbers that suggested a possible decreased risk. Here’s a reference to the first paper in September 1997, which was about two years before I was diagnosed with my then life-threatening case, from that early study: https://www.ncbi.nlm.nih.gov/pubmed/9315315. Details were published in May of 1998, still a year and a half before prostate cancer was on my mind at all; the abstract reports the stunning statistic that there was a 63% reduction in the incidence of prostate cancer for those in the supplement group of the trial! Wow!!! Moreover, this was not a small trial. It included 974 men, and they were split into two groups, one on the 200 micrograms of selenium or placebo for an average of 4.5 years and then followed for an additional average of 6.5 years – substantial periods of both dosing and post “treatment” follow-up. Also, the statistical confidence evidence – the p value – for this observed association was really good: p=.002 (p values less than .05 – suggesting there is only a 5% chance that the results are due to chance effects in assigning research participants to each group) are generally the cutting values for considering a research finding to be significant statistically, so a value more than ten times lower looks really promising. Additionally, analysis of subgroups and participants from different centers consistently suggested that selenium was having a real effect. Here is the source information for the abstract: https://www.ncbi.nlm.nih.gov/pubmed/9634050. (In May of 2003 a follow-up analysis indicated that the apparent effect of selenium on prostate cancer in this trial only existed for those men who were most deficient in selenium at the start of the trial, which was why I had kind of hoped my own test would show I was at the low end of selenium in my blood. (https://www.ncbi.nlm.nih.gov/pubmed/12699469) That news somewhat dampened my enthusiasm for selenium when I heard it, three and a half years after my diagnosis – a time when I knew I was not deficient in selenium, but I continued to take the supplement.)

    Launching the SELECT Trial to Put Selenium’s Benefits to the Test: Back in 1998 there were few of the drugs available to treat the disease that we have today, imaging was far less effective than it is today, and treatment technology, especially for radiation, was much inferior to the very successful versions we have today. Therefore, this news about selenium was welcomed eagerly by the prostate cancer community and spread rapidly. However, as the authors of the mentioned papers wrote, clinical trials aimed directly at selenium were needed to prove the results. While the statistical odds and supporting circumstances gave us high confidence that selenium consumption would have a good effect on the cancer, there have been numerous cases where such preliminary results blow up in a cloud of smoke when put to a rigorous test. (In fact, this is what happened with selenium.) Now there aren’t corporate sponsors for trials of dirt cheap supplements like selenium, so this is where governments need to step in to sponsor research. Fortunately, the US did just that, sponsoring a trial known as SELECT that looked at selenium, vitamin E, and a combination of the two, versus placebo. Unfortunately, the choice of forms of both selenium and vitamin E for the study looked questionable at the time, but at least these forms were studied. Trials take time, and so many of us were confidently consuming selenium and vitamin E supplements for years.

    Bad News: In January 2002 the results of the SELECT trial were published: essentially there was no association between use of either supplement or the combination and incidence of prostate cancer! (https://www.ncbi.nlm.nih.gov/pubmed/19066370) Compounding this disappointment, there was a slightly increased risk for type 2 diabetes in the group taking selenium alone, though it was not considered statistically significant. (There were also some problems with vitamin E.) I continued to take the supplement for a number of years, believing that the form of selenium in the trial was the cause for the disappointing result. However, in recent years one of my key gurus, a highly respected medical oncologist who is extremely experienced in medical research and pharmacology (and also a 19 year survivor of metastatic prostate cancer), stated that his prior advocacy of selenium for prostate cancer was one of the biggest mistakes of his career.

    Not Taking Selenium Now, But Research Continues: All of this considerably trimmed back my enthusiasm for the supplement, and I no longer take it; however, I still believe it may prove helpful for some of us. Indeed, research continues, now with the aid of a far superior understanding of genetics than was available a decade or two ago. Here is a study illustrating how some of the genetic leads are being followed for selenium: https://www.ncbi.nlm.nih.gov/pubmed/26847995. Here is an earlier paper by the same group that reports evidence that elevated selenium may have a helpful or harmful effect depending on our genes (the SOD2 genotype), with 25% of the male population having genes that favor selenium use but with 75% having genes that discourage such use: https://www.ncbi.nlm.nih.gov/pubmed/19528373. Here is an interesting study of the records of participants in fifteen other studies (all “prospective”, an important feature which increases credibility of findings: https://www.ncbi.nlm.nih.gov/pubmed/27385803. In essence, selenium, as measured in the study participants, had a large effect against prostate cancer in patients with aggressive disease, but no effect in patients with non-aggressive disease. Hopefully there will be fresh studies that use samples collected in earlier studies that are separated by genetic characteristics in these fresh studies.

    I am hopeful that I have been cured of prostate cancer, but, should it recur, you can bet I’ll be checking out recent research findings on selenium.

     
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    Old 06-06-2018, 02:09 PM   #47
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Preparation for Radiation, Upcoming in About a Month: Comfortable, but Some Concern

    On Tuesday, May 2, 2000, I got a call from my radiation oncologist's office about preparations for my May 31 tattooing session for radiation in early June.

    I was fairly comfortable with my decision to go ahead with radiation, even if the chance of a cure were small, but I had at least one nagging doubt. That doubt was that I had read enough to learn that the best kind of external beam radiation for prostate cancer appeared to be what was known as 3-D conformal beam radiation, as contrasted with traditional radiation. I had asked my radiation doctor at least twice whether he would be using the 3-D kind, but he had not responded, instead sliding to another subject. Even though he was a leading radiation doctor at this world renowned mid-Atlantic center for prostate cancer, that reputation had been built on its pioneering work with surgery, not radiation. Nonetheless, though I would have liked to have the use of the 3-D form confirmed, I was ready to go ahead.

     
    Old 06-06-2018, 04:59 PM   #48
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Turning Point - First Glimpse of Triple Androgen Deprivation Therapy (ADT3) as An Option!!!

    Eighteen years and one month ago was May 6, 2000, a Saturday. For the first time I visited a message board sponsored by my internet service provider at that time. There were a number of messages, and I was reading through them when I found one from a woman whose husband had prostate cancer. She was answering a question from another board participant, and she briefly but strongly recommended that he take a look at some articles by a California doctor who was advocating a therapy called triple hormonal therapy (aka ADT3). Something about her post really got my attention, and I immediately began looking at articles on ADT3 and other therapies by that doctor. I would soon find videos of his presentations to support groups.

    In essence, he was advocating a triple approach that featured shutting down testicular production of testosterone by either Lupron® or Zoladex® (basically equivalent drugs), plus Casodex® to block the androgen receptor fuel port on cancer cells, and finally Proscar® to nearly completely shut down conversion of any remaining testosterone to the far more potent prostate cancer fuel dihydrotestosterone (DHT), as well as reducing the blood supply to the prostate. I was struck by the extremely high response rates he was claiming and his high level of confidence that his approach would work for almost all patients , in fact I soon ran into survivor claims that he was achieving 100% success (not true, and not actually claimed by this doctor). I was also a bit disturbed as he claimed that both surgery and radiation had more frequent side effects and more serious side effects that commonly recognized.

    I was simply amazed, and perhaps a bit stunned. I did not post on that board for a long time as I immersed myself into finding out about this unexpected option. Could it be true? Would it possibly work well for me? The thought came to me that I might want to postpone or perhaps even cancel the upcoming radiation, but I realized I knew little about ADT3 at this point.

    Here I was at a point six months from diagnosis, and up to that moment I had been confidently moving toward a shot at a cure with radiation, although I knew my chances were not good. And now I sensed that a new and more promising reality might be opening up. Or maybe it was just a mirage based on poor data and an overenthusiastic doctor. I had a lot of digging to do to sort all of this out!

     
    Old 06-11-2018, 08:31 AM   #49
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Researching ADT3 versus Radiation Options Like Crazy


    During the past week eighteen years and a month ago I was researching ADT3 as intensely as possible. I found three practices that specialized in prostate cancer in the US that were using ADT3, though with slightly different versions, mainly the dosages. I was becoming aware that the leading advocate doctor was thinking that all prostate cancer had spread widely at the time of diagnosis and that therefore surgery and radiation often failed. He was basing his belief on personal observations in his clinic and on his assumptions rather than research, and his views were not accepted by the other practices. In time I would realize that he was wrong about the initial wide spread disease belief and about the likely futility of radiation and surgery. Research since 2000 has conclusively proven that he was on the wrong path about the initial spreading of prostate cancer and about the futility of other approaches, but not about triple ADT, though that has still not been put to an effective test by researchers.

    On May 12, 2000, I consulted with my urologist and got another PSA test. I told him I was on the verge of cancelling my planned radiation in favor of relying on ADT3. He felt this could work, though he was not convinced that adding Proscar® would help much. We also discussed whether I should get a scan for bone mineral density (BMD), which was not part of his standard monitoring for patients on ADT. (I later concluded that this was a major but typical fault for urologists managing patients on ADT for prostate cancer; BMD testing, by scan, is very important for patients on ADT for longer than a few months!)

     
    Old 06-11-2018, 10:48 AM   #50
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Fanning Away the Flashes (from ADT), & ProstaScint Scans

    One of the most annoying side effects of androgen deprivation therapy (ADT) - Lupron being the culprit for me at the time - was hot flashes and sweats. They were not a big deal for me as they are for some of us, but they were a nuisance, especially at night. One of the books I had been reading, authored by a prostate cancer survivor, advised using small hand held fans at the onset of hot flashes and sweats to minimize them. The author especially recommended aiming the air stream at the neck, where the arteries are close to the skin, the idea being to spread the cooling effect from that target to throughout the body. On Saturday, May 13, 2000, I bought two small fans for $1.99 each at the beach gear section of our local drug store.

    Over the years I used these and other fans a lot, and they helped! I also installed a large bedroom fan for use all during the night, and I made use of my car's fan and a table fan at work. At night it got so that I could sense a flash coming on before it really started. The sensation of an oncoming flash would wake me briefly, but I would aim a fan at my neck, and usually that prevented or greatly reduced the flash; I would be back to sleep within minutes.

    ProstaScint - I also read in a newsletter that ProstaScint scanning, which I had had in January to detect prostate cancer metastases that were too small for detection by the CT scan, was highly accurate. That was encouraging as my scan had shown none of the metastases we expected except for one suspicious spot in an unlikely location. Now in 2018 we have superior scans with far superior image resolution; that contrasts with the ProstaScint images which were notoriously difficult for radiologists to interpret.

     
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