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

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    Old 03-07-2018, 09:49 AM   #31
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Gaining Knowledge, Starting Casodex®

    In the past week 18 years ago, I was learning a lot about prostate cancer thanks to help from a friend. He had also been diagnosed recently, and somehow he began subscribing to an outstanding newsletter from a medical oncologist who specialized in prostate cancer.


    On leap day in 2000 I attended a lecture on hormonal therapy (androgen deprivation therapy – ADT) at a prominent prostate cancer education and support group in the area. I learned a few important points, but I also realized that the speaker, a well-regarded local medical oncologist, was ignorant of some of the key points I had learned from the newsletter. My awareness was growing that there were important differences, sometimes vitally important, in the skill, perspectives, and talent that different doctors had to offer. One of my regrets over the years is that friends I have known with prostate cancer were too attached to doctors who were unable to give them the life-saving or extending help they needed. I remain thankful that somehow I was able to find doctors who knew how to help me (or thought they did, and it turned out they were right). I also met a couple of patients who would become friends for years, though one, with a highly challenging case (PSA over 400 at the start), would pass on within several years.

    On March 1, 2000 I made an appointment to see a local radiation oncologist. While I was planning to have radiation at that major mid-Atlantic center, I wanted to get a feeling for what my local radiation folks could offer.

    On March 3, a Friday, I started taking the antiandrogen drug Casodex®/bicalutamide that had been prescribed by the mid-Atlantic centers radiation oncologist. His strategy was to shrink my prostate a bit and also use combined ADT (Lupron® plus Casodex®) to better combat the cancer. Back in those days, that tactic was known as MAB – Maximum Androgen Blockade; that term is still used, but for my money, it is very important for most of us to add a third drug - Proscar®/finasteride or more likely these days the more potent Avodart®/dutasteride, plus supporting drugs and side-effect countermeasure tactics – to achieve the best blockade. There has been great progress in development of much more powerful antiandrogen drugs in recent years, but I’ll address that in a blog post.

     
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    Old 03-08-2018, 02:17 PM   #32
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    Re: To Screen or Not to Screen - 18 years ago tonight

    ELDERLY????? NO!!!!!!

    By this date 18 years ago I was taking Casodex, Vitamin E (now not recommended), selenium (now not recommended), calcium, vitamin D3, fish oil capsules, glucosamine, and probably some other pills. It was getting difficult to keep them all straight, with some due at breakfast, some at lunch, and some at dinner time. I decided to buy one of those partitioned containers with compartments for morning, noon, dinner time and bed time for each day of the week. I now call it my pilltaker.

    I went to my local drugstore to buy one. There they were - several options. I picked up the one I liked best, and there it was, emblazoned on the packaging: "A real help for the elderly." (or something like that).

    Elderly????!!!! Hold on there! I was 56, and though I had had my AARP card for a few years, I definitely did NOT think of myself as "elderly." Ouch! That hurt!

    Last edited by IADT3since2000; 03-15-2018 at 08:58 AM. Reason: Added exclamation point.

     
    Old 03-14-2018, 01:03 PM   #33
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    Re: To Screen or Not to Screen - 18 years ago tonight

    A clinical trial for me? & another "second opinion"

    Eighteen years and a few days ago was March 9, 2000, and I went to get another "second opinion" from a radiation oncologist at our respected local hospital. This "second" opinion was actually at least the seventh I had received from different doctors, mostly at different institutions, and it would turn out I was still not settled on a long-term strategy. I have learned that for some of us with challenging cases of prostate cancer it may take quite a few "second" opinions before we finally find a doctor and strategy that fits well.

    My somewhat hazy recollection is that the doctor did not think radiation would work well for me but thought that hormonal therapy (aka androgen deprivation therapy - ADT, which I already was on) would help for a while.

    I do remember clearly that he offered me help in enrolling in one of at least two clinical trials. That, of course, would mean trying an experimental treatment that had obviously not been proven to help. I thanked him, but said I would have to think about that and talk it over with my wife. I recall not being attracted to that option.

    Now with 18 years of dealing with prostate cancer under my belt, I have learned that many doctors have an incentive to enroll patients in trials: they get paid a fee to do so. I don't have a problem with that as such, as selecting and enrolling a suitable patient for a trial takes a bit of work on the doctor's part. However, I have grown to believe that doctors sometimes steer their patients to trials when existing therapy options offer prospects that are at least as good as or superior to the prospects of success in a trial. Moreover, with the great progress in imaging, treatments, countermeasures for side effects, and general know-how for prostate cancer, I'm convinced patients should think carefully before they choose a trial over existing alternatives that have been approved. One key issue is whether the "placebo" arm of a trial - the group that does not get the drug, treatment, imaging, etc. being investigated - is treatment that is as good as the current "standard of care". (Personally, I would want it to be as good as the current standard used by innovative and imaginative doctors, but that is often not knowable to the average patient; luck plays a big role in finding such doctors.)

    If I do someday think a trial may be right for me, I'm going to make sure the doctors I deal with have a higher regard for my well-being as a patient than they do for my being a scientific data point in a trial where results can not be tallied until a certain percentage of deaths have occurred. I am aware that companies sponsoring expensive trials sometimes become impatient, as the patent expiration clock ticks for their investigational drugs in long trials, and their investors become restless while competitors try to reach the finish first with their alternative products. I suspect that motivates some companies sponsoring trials, and the health professionals who carry out the trials, to do less than they should do to enhance the survival and well-being of their patients.

    All this said, those wonderful advances that have been and continue to be made at a rapid clip in prostate cancer usually have depended on patients being willing to enroll in clinical trials or other research. I have participated myself in genetic work by contributing tissue samples. In fact, while I was barred from ever seeing the results of my own samples, I believe I have taken the commercial genetic test that resulted from that study. (The results were reassuring to me and my family. )

     
    Old 03-15-2018, 08:56 AM   #34
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Positive margin after friend’s surgery

    March 15 fell on a Wednesday 18 years ago. A friend of mine from church had been diagnosed with prostate cancer about the same time I was diagnosed, and he had recently had a prostatectomy. When we talked on this day he said he was recovering well but that his post-surgery pathology report revealed a positive margin.

    Patients with positive surgical margins have contributed a fair number of posts here over the years. Of course whether or not the surgical margin is positive is a prominent concern for all men having prostatectomies as they wait for that post-surgery pathology report. My impression from talking to a number of friends who have had positive margins is that many of them do well long-term.

    There is considerable published research on the effect of positive margins on recurrence. One 2013 US study at a major center with 2,866 men who had prostatectomies showed that there was only a slight increase in recurrence if they had a positive margin, 6% more, for men with both stage 2 disease (confined to the prostate) and a Gleason score of 6 or lower (correct in the text but mislabeled as less than 6 in the graph), with PSA levels overwhelmingly less than 10 (average of 5.4 and three fourths of patients with a PSA of 7.6 or lower) at about the 3 ˝ year point since surgery; these patients with a positive margin still had great success in avoiding recurrence: 90% were recurrence free (Figure 1b per my eye and a ruler, likely within a percent or two; https://www.ncbi.nlm.nih.gov/pubmed/22759270 ). This study, which updates an earlier study and doubles the number of patients, also gives details for men with a pathological stage of T3 and a Gleason score equal to or greater than 7, both showing substantially more recurrences for men with positive versus negative margins.

    If I had had a prostatectomy I sure would have wanted that margin to be negative, but the research shows that men with case characteristics that are otherwise good often do very well despite a negative margin ; results are not as encouraging for men with post-surgery stage T3 or a Gleason of 7 or higher and a positive margin, though 50% to 75% of them also avoid recurrence at the 3 ˝ year point depending on the length of the marginal cancer, in this study.

    The friend I mentioned above has done fine over the years: no recurrence at the 18 year point despite that positive surgical margin.

     
    Old 03-24-2018, 01:55 PM   #35
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Eighteen years ago today was a Friday, and I was still sore from my fourth monthly Lupron shot the day before. It had bothered me during the night as pressure was uncomfortable. Years later I would learn that there was much less discomfort and equal effectiveness if the shot is given higher up in the butt muscle.

    I discontinued my nightly glass of red wine, substituting Concord grape juice. I don't recall why I did that, and I am glad to have wine back in my diet.

     
    Old 04-03-2018, 04:44 PM   #36
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Strategy Review

    Today 18 years ago was a Monday, and I had a consultation with the practice that was now giving me my Lupron shots. This was a strategy review by my urologists, with my main strategy at the time being to have external beam radiation under the direction of radiation oncologists at the major center, probably in a couple of months, around mid-June.

    My urologist said that the use of radiation for a patient with such a high PSA as mine had been at the start was foreign to his thinking, but he acknowledged that, as a surgeon, he was not as familiar with radiation. He encouraged me to keep up the androgen deprivation therapy (ADT) both before and after the radiation, and he emphasized that the combination of radiation plus ADT had the best chance of dealing with any micro-metastases in the bone or elsewhere outside the range of the radiation. The likelihood of micro-metastases was the reason he thought that radiation would be unlikely to cure my cancer. I told him that I understood the odds, but that I was encouraged by the ProstaScint scan result that was arguably negative. He emphasized the importance of maintaining good nutrition.

    I was feeling positive after the consultation, but I still believed I had little chance of surviving beyond five years.

     
    Old 04-09-2018, 04:58 PM   #37
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Today was a Sunday 18 years ago, and I was encouraged by a statistic I found in a book I was reading on prostate cancer. It had a chart that showed 50% survival at 14 years by men who had been diagnosed with lymph node metastasis. Considering that my ProstaScint had not revealed any lymph node metastasis, I thought I should be on the good side of that 50% number.

    Of course, these days we should be much better off than we were back then.

     
    Old 04-16-2018, 10:08 AM   #38
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Hot Flashes, Associated Sweating, and Soy Genestein as a Countermeasure

    Eighteen years ago yesterday was a Saturday and marked a month since I had been taking a soy genestein supplement marketed for women to reduce hot flashes and associated sweating. For the first few months the flashes and sweats had been annoying, and they were costing me sleep. At one point I noticed three flashes/sweating per hour during the day, each lasting several minutes, and fairly intense. I was also waking up numerous times a night feeling hot and also sweating.

    I was pleased to note that the flashes and sweats had decreased a lot in intensity, duration and frequency during the month since I had started consuming the daily soy/genestein supplement. However, they had not disappeared. I was also using a hand fan directed at my neck as advised in a book, especially during the night, a standing fan in our bedroom during the night, a table fan at work, and my car fan set to cool. I had learned that an unusual feeling during the night signaled a coming sweat and hot flash; I would wake, just barely, and sense that feeling, use the hand fan, and pretty much prevent the sweating and hot flash. It would only take a minute or two, and I would drop right back into sleep. I also sensed that feeling during the day and made use of it.

    The soy pills and fans were my first countermeasures to the side effects of ADT. At that point, I was not that aware of the various side effects that many of us on ADT experience, nor was I aware that there were countermeasures that were at least somewhat effective for all of them. None of my doctors, up to this point, had given me a thorough review of all the likely side effects, when to expect them, the range of severity, or what could be done to prevent or minimize them. In particular I was not yet aware of the importance of protecting bone mineral density (BMD) for those who expected to be on ADT for an extended period. That is a serious risk that sometimes results in bone fracture, including the spine.

    Understanding all of this would come later, and with it would come the realization that there were great differences in ability to help us among the doctors who treated prostate cancer. Among other things, I would learn that in January of 1999, almost a year before my diagnosis, one group of doctors had written an article in a magazine for prostate cancer survivors that thoroughly described the ins and outs of the threat of ADT to bone mineral density and what to do about it. In time I would be following that group of doctors very closely. This stuff was KNOWN, but many doctors didn't have a clue! I credit much of my well-being, perhaps including my survival, to their dedicated work and willingness to share their wisdom.

    Last edited by IADT3since2000; 04-16-2018 at 10:25 AM.

     
    Old 04-23-2018, 12:17 PM   #39
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    Re: To Screen or Not to Screen - 18 years ago tonight

    A Week's Confirmation of Much Reduced Hot Flashes Due to Soy Supplements, and Some Controversy

    By Sunday, 18 years ago today, I confirmed that the great decline in hot flashes/sweats, noted in the previous post, had held for a week. I had had another good sleep during the night. I was now experiencing little sweating, low frequency, short duration and barely noticeable intensity of the flashes.

    On the other hand, at that time and over the years since then, medical research papers would appear that indicated a strong placebo effect rather than benefit from soy pills. Here's a fairly recent example in which the placebo bill did substantially better than the soy pill , though there were marked declines in the burden caused by hot flashes (frequency times intensity) and improved quality of life: https://www.ncbi.nlm.nih.gov/pubmed/24081940 . This example was a small study, but some other studies, including studies involving women, show a rather similar pattern. Also, some studies showed no impact, while others showed a substantial impact. You can do this simple search yourself on PubMed and view descriptions of these studies: go to www.pubmed.gov, and search for: hot flashes AND soy .

    I'm still not absolutely positive that soy supplements do have a real favorable effect, at least for some of us, but the bottom line for me was that I experienced marked relief and was happy to pay $30 or so a month for the supplements. Maybe it was just getting used to the shots that caused the relief, or maybe it was the placebo effect for me, but the change in symptoms was so distinct and so closely associated to the month that I started taking the pills that I am convinced there is a real and most welcome effect, at least for some of us.

     
    Old 04-23-2018, 12:23 PM   #40
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    Re: To Screen or Not to Screen - 18 years ago tonight

    It seems to me that the decline in hot flashes could be from the estrogen that is in soy. I know it's sold to females for that purpose.
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    Last edited by yayagirl; 04-23-2018 at 12:23 PM.

     
    Old 04-23-2018, 04:20 PM   #41
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    Re: To Screen or Not to Screen - 18 years ago tonight

    It's good to hear from you.

    Yes. I too believe it is the estrogen.

    In my fourth round of ADT3, which included Lupron, I had switched to Vivelle transdermal estrogen patches to protect bone density while on Lupron (planned/completed 18 months in support of radiation), instead of Fosamax and later Boniva. I was also taking a soy supplement. The hot flashes (and sweats) were barely noticeable during the day and virtually absent at night.

    Last edited by IADT3since2000; 04-23-2018 at 04:21 PM. Reason: Added text about Vivelle patches.

     
    Old 04-23-2018, 05:48 PM   #42
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    Re: To Screen or Not to Screen - 18 years ago tonight

    You, too.
    It's sad really that the benefits of natural substances are so down-played, when they most often have no or less negative side effects. I get nasty side effects from most manufactured medications.

    Kudos for your consistency on behalf of others!
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    Old 05-11-2018, 03:35 AM   #43
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Hi, Jim,

    I have not been around for long but saw this your thread and decided to congratulate you for the 18Th anniversary as a PCa survivor. My post is late but I am glad to read the news. I hope all continues in your favor in regards to the bandit and family.

    Best wishes,

     
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    Old 05-14-2018, 12:16 PM   #44
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Hi Baptista,

    It is a day brightener to see your post! I hope you are doing well.

    I too was away for many months a few years ago, probably around the time I had radiation. It would be good to see you posting again.

     
    Old 05-28-2018, 12:25 PM   #45
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    Re: To Screen or Not to Screen - 18 years ago tonight

    Dosing Lupron® and Similar Drugs, Liver Function Test for Casodex®, Selenium

    I'm trying to catch up this story from 4/23.

    On Tuesday, 4/25, just about 18 years and one month ago, I got my first 3 month Lupron® shot - the others had been dosed for just one month. Now in 2018, dosing for 4 months, 6 months and a year (Viadur®) has been around for quite a few years, but 3 months dosing was fairly new in 2000. I still believe that the 1 month dosing is a good way to start, just to make sure that the medicine is not intolerable and to check whether the one month interval is effective. Some patients use up the dose faster than others, and that leads to a gap in coverage, allowing the cancer a window to grow. Doctors can use a shorter dosing interval to counter that. Similarly, once it's time for 3 month dosing, 4 month dosing, etc., the intervals can be tightened a bit and more strictly monitored near the end to make sure testosterone is still in that desired extremely low range.

    My Liver Function Test from the previous day was normal, showing that I was tolerating the Casodex® without suffering liver injury. These tests are only needed for the first few months after starting the older versions of antiandrogen drugs, like Casodex®. Once a patient is known to be doing well, there is no more need for these tests.

    I had also gotten a selenium level test on 4/24, but the result was not yet in.

     
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