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  • The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to All!

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    Old 07-18-2020, 01:09 PM   #1
    IADT3since2000
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    Talking The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to All!

    The “2020 Prostate Cancer Patient Conference”, the latest edition in the long-running annual series usually held in Los Angeles near LAX, is being held during September 11-12, 2020 with a couple of wonderful new twists this year: it is VIRTUAL for the first time ever, via *******, and it is FREE! (Tuition was always low, considering the value, well under $100 especially for early bird registration, but expenses for travel, room and board, as well as the time/travel commitment, are now zero.) Many of the presenters will be leading and even world-class experts in assessing, managing treating and researching prostate cancer.

    Here’s the link to RSVP: https://pcri.org/2020-annual-conference

    I have been to several of these conferences, valuing them highly enough to travel from Virginia to Los Angeles. I love this new virtual option. While those of us participating this year will miss out on the wonderful, supportive atmosphere and personal interaction with other survivors and with doctors, and also the always pleasant and entertaining Saturday night banquets, in past years many of us missed out on those anyway as obligations at home prevented us from attending in person, relying on the excellent DVD recordings instead or missing out on the experience completely. Now, anyone with a computer can “attend.”

    For several years I (and likely others) have urged the producers, especially the key producer, the Prostate Cancer Research Institute (PCRI), to provide a virtual option, but in the past they had their hands full with the conference itself. Now Covid-19 has forced this new approach as a substitute, and the staff will learn the ropes and have an infrastructure that could be used in the future. I hope there will continue to be a virtual option after we get past Covid-19. I am a care-giver at home now (the reverse of what my wife and I expected when I was diagnosed!) and unable to travel, but if I were free to go, I would love to again be able to attend in person. I’m hoping the staff figures out a way to enable the personal interactions, especially the submission of questions to experts – often world-class experts who are leaders in their fields, that has added so much value to these conferences. I also hope they will have a way of presenting an exhibit hall manned by people with useful products to sell. That was always fun and informative. Over the years the staff has been innovative, and I’m looking forward to the fruits of their labor.

    These conferences have had direct impacts on my care, and, I am convinced, on my successful treatment for my challenging, once life-threatening case, now apparently cured. A few personal highlights from the past include information that enabled me to switch from conventional to ultrasensitive PSA testing, to expand my ADT treatment to triple ADT, to switch from continuous ADT for my high-risk case to intermittent ADT, to get a DEXA scan to assess bone mineral density while on ADT and to add a drug, Fosamax, to counter bone loss, to change my diet to one that fostered general health and possibly also aided my survival and well-being as a cancer patient, to seriously entertain the possibility of a shot at a cure with radiation, as well as other helpful actions.

    Some of this may strike you as commonplace and standard of care, but it was NOT standard of care or well accepted when these things happened. Indeed, I was the first patient in my medical oncologist’s large, multi-physician practice to have an ultrasensitive PSA test, back in mid-2001, after my PSA had finally dropped down to around the lower limit of <.1 of the conventional PSA test they then used routinely; I had shown my doctor the ten pages of abstracts on ultrasensitive testing from the 2000 conference workbook, and that convinced him to switch. Ultrasensitive testing was not well accepted back then, and my impression is that it was discouraged by many surgeons who did not want to deal with the earlier recurrences - detected much earlier thanks to ultrasensitive testing - in the patients on whom they had operated. It was a similar story for my DEXA scan and Fosamax to preserve bone density while on ADT in the fall of 2000, based on information from conference leaders, a key issue in my switch from a urology team to a medical oncologist. At that time urologists were generally ignorant of the need to preserve bone density while on ADT drugs. (That has changed.) I was the first person in my oncologist’s practice to get a vitamin D3 test, based on information from conference leaders. My switch to intermittent ADT instead of continuous ADT for my high-risk case was largely based on information from the conference and conference leaders; it was not common at the time as many physicians were convinced that continuous ADT was the only way to go, though intermittent ADT was emerging.

    Moreover, while I was only academically interested in active surveillance (AS) as I was clearly not a suitable candidate for it, I was the “volunteer speaker escort” for Dr. H. Ballentine Carter, the noted AS leader at Johns Hopkins. You may not think his conference appearance was important as AS has now become widely accepted as the standard of care for appropriate patients. But this was back in June 2005 (sponsored by The Foundation for Cancer Research and Education that year), just three years after the first research on AS was published and a time when Johns Hopkins still called the strategy “expectant management.” It was a time when most of the prostate cancer medical community was opposed to AS, thinking it risky, irresponsible and even crazy. Since then a number of world leaders in AS have spoken at the conferences, including Dr. Laurence Klotz at least twice, Dr. Babaian (MD Anderson), Drs. Peter Carroll and Matthew Cooperberg of UCSF, and others. (I also learned that Dr. Carter was a hunter, which he said was why he was able to spot a rat in the kitchen area back stage as we walked to the on-deck spot. That was the same kitchen from which our meals were served. Ugh!)


    My point in relating this history is that what is presented at the conference is typically at least several years if not as much as a decade ahead of what will later become standard of care practice. Many of us do not need care at the leading edge of the art, and the conferences provide a wealth of information for such patients. But some of us, like me, do. I believe that the information at the conferences makes the difference between well-being and suffering, and even between life versus death, for those of us with challenging cases.

    I am really looking forward to this conference!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

    Last edited by IADT3since2000; 08-16-2020 at 04:14 PM. Reason: Deleted one short phrase - "except for the conference itself."

     
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    Old 08-11-2020, 03:31 PM   #2
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    Speakers and topics have now been posted at https://pcri.org/2020-conference#the-agenda (and scroll down in the future to get updates on the PCRI website). There are several "all stars" in this cast!



    FRIDAY, SEPTEMBER 11, 2020

    8:30am - 9:00am | Opening Remarks with Mark Moyad, MD

    9:00am - 10:30am | Prostate Imaging | Daniel Margolis, MD

    10:30am - 12:00pm | Active Surveillance | Laurence Klotz, MD

    12:00pm - 12:30pm | Presentation sponsored by Janssen: Prostate Cancer: Understanding Today’s Treatment Challenges | TBD

    12:30pm - 2:00pm | Radiation Treatments | Mack Roach, MD

    2:00pm - 2:30pm | Closing Remarks

    Saturday, SEPTEMBER 12, 2020

    8:30am - 9:00am | Opening Remarks with Mark Moyad, MD

    9:00am - 10:30am | Advanced Treatment | TBD

    10:30am - 12:00pm | Pathology | Kirk Wojno, MD

    12:00pm - 12:30pm | Presentation sponsored by Bayer: Getting to Know NUBEQA® (darolutamide) | TBD

    12:30pm - 2:00pm | Conference Review, A Year in Medicine, and Q+A / Mark Moyad, MD & Mark Scholz, MD

    2:00pm - 2:30pm | Closing Remarks

    *Subject to change

     
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    Old 08-14-2020, 12:46 PM   #3
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    Tuning In and Out of the Conference

    I was in a zoom Us Too meeting recently, and the discussion led me to realize that we have a new option for participating in the conference: we can view just the sessions that interest us and skip the others. I suppose we could have done that with the in-person conferences, but it would have been awkward, while this will be super convenient.

    For example, someone with a mild case that was recently diagnosed might want to tune in only to the sessions on the first day, on the Pathology talk, and the conference review. Someone with an advanced case or recurrence might want to skip the Active Surveillance and the Pathology talks.

    I have always enjoyed every talk, as it has helped me understand how expert doctors approach and think through issues. But for some of us, avoiding the talks that are not so relevant for us will help reduce confusion and "too much information," and breaks can provide welcome mental rest: sometimes attending the conference is like trying to drink from fire hose.

    I recommend catching the opening and closing remarks too, and also the conference review. Dr. Mark Moyad has a great sense of humor, with Dr. Scholz often playing his straight man, and it's a good opportunity to get to know Dr. Scholz, who has done so much superb work and recently was the main author of "The Key to Prostate Cancer."

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 08-16-2020, 12:46 PM   #4
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    Taking Notes At the Conference

    The speakers usually do a fine job of using language we patients understand to make their points, and I always come away from these events knowing much more than I did before the event. But the flow of valuable information still comes at you fast, like trying to take a drink from a fire hose. Also, with the sheer volume of information, it can get confusing when you are trying to recall key points.

    I have tried to cope with these problems in several ways. When I just listened, with few notes, I caught the gist of what was being said, but it was hard to recall some key information - frustrating when you know you missed something important, something you might want to discuss with your doctor. When I took a lot of scrawled notes, my hand got real tired, and I was more focused on writing than appreciating what I was hearing; it turned into a real not-so-fun chore. Another technique that works, at least for me, is capturing citation information for studies spot-lighted by the speakers, and then reviewing abstracts or the complete papers later that were mentioned, but that meant trying to capture enough citation information - at least the author, year and a key phrase - to be able to get to the study on www.pubmed.gov, and chore took time away from taking notes on the speakers’ points.

    What takes time but is thorough and comfortable is to slowly review the DVDs of the conferences that are available a month or two later after the event. That would work very well if you are focused on just one or two talks and just interested in browsing through the other talks. I don’t know whether DVD sets will be made this year as this is the first time the conference is virtual.

    Here’s my plan, based on what I’ve done with other zoom type events. I’m going to have the conference on half of my screen, with a Word document on the other half. I’m going to type notes real time, but I’m also going to take Print Screen shots of the visuals and copy them to the Word document, flipping back and forth between screens. Later, if I’m interested in particular visuals, I’ll crop and enlarge those so I get nice clear images. This works well because most speakers use many visuals to make their points, and so the PrintScreen copies avoid a lot of typing or note taking, and I get a precise record of the key points, graphs and sources. I can also paste in detail from other sources, such as the complete papers, later, if I wish to. I find this method allows me to pay enough attention to the points being made while giving me a good and accurate record of key information.

    If anyone wants try this technique for the conference, it would probably help to practice on some other event first to master the manual ins and outs of switching back and forth while keeping the talk and the Word document on the screen where you want them. One interesting recent talk, on exosomal testing for the presence and degree of risk of prostate cancer, would be a good candidate for practice and is available in the July 29,2020 archives of the NASPCC at https://naspcc.org/index.php/resources/webinar-archives . I also suggest practicing cropping and enlarging the copied PrintScreen images. I like to use the Alt key so I can set up the crop with typing rather than with the mouse. If anyone has questions on how to do this, I’ll try to answer.
    I’ve tried to do a macro for that but have not succeeded; maybe someone has a solution for that.

    I would be interested in what others do who like to get into the details as I do. I suspect that most of us just want to catch the overall flow, which is also a good way to participate in the event.

     
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    Old 08-22-2020, 12:20 PM   #5
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    Submitting Questions for Conference Speakers

    I just noticed there is a block for submitting questions under the registration blocks that we fill in. I just registered or reregistered, and the question block may not have appeared until after I had submitted my information.

    This is a great opportunity to have specific questions answered. In ordinary non-Covid times, the welcome kit for each attendee has cards for questions that you fill out and submit. This year that is being done online.

    What I believe happens is that the questions are reviewed by the staff and/or by the moderator, Dr. Mark Moyad, and then he selects and modifies questions for his Q&A that he does after each speaker's presentation. That avoids duplication and focuses on key issues within the time constraints.

    It would probably help to suggest which speaker would be best for the questions you would like addressed. Also, lengthy, personal questions are not suitable for this format, so try to keep it to questions of general interest for your type of case or treatment.

    Here is an issue I would like addressed: I did very well on ADT3, but that therapy has not been mentioned much lately and is barely mentioned in Dr. Scholz's book "The Key to Prostate Cancer," despite the fact that his practice was one of the foremost pioneers of ADT3 therapy. I think it's no longer mentioned much because several years ago the FDA was bulldozed, mainly by Dr. Patrick Walsh, into a "black box" warning about 5-ARI drugs (Proscar (finasteride), Avodart (dutasteride)), which are the third leg of ADT3 therapy, a warning which should be removed based on then current and especially more recent research. I'm still curious. It could be that more modern drug regimens work even better. Maybe I can finally get an answer.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 08-23-2020, 09:30 AM   #6
    Gary I
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    I had ADT2 (Lupron and Casodex) with IMGT several years ago, after Dr. Tony D'Amico, at Dana Farber Cancer Institute & Harvard discussed ADT3 with me, suggesting positive results were very uncertain, and warning that it was experimental. Stating the FDA and Dr. Walsh "bulldozed" ADT3 is, I believe, quite misleading.

    Also note that the Prostate Cancer Patient Conference, while interesting and informative, is this a somewhat biased viewpoint influenced by the people who control it, led by Dr. Scholz, author of 'Invasion of the Prostate Snatchers". No bias there


    The "facts" about prostate cancer, and absolute answers are more elusive than those about Covid-19, and everyone has strong 'opinions'. All of you (us) wanting to learn as much as possible about prostate cancer need to do in depth research, understanding there are no absolute answers, Holy Grail, or other brother, no mater how prolific, with THE answer.

    Dr. Scholz, owner of a high end private prostate clinic, has also authored a more even handed book, "The Key to Prostate Cancer", with contributions by many knowledgeable people. Dr. Patrick Walsh, author of many books, including the scholarly text "Guide to Surviving Prostate Cancer, 4th Edition", with contributions from experts on all aspects of prostate cancer. Walsh has spent four decades at Johns Hopkins, as Director of Urology and as a Distinguished Professor of Urology. He is recognized by many as the foremost authority on the subject.

    Perhaps read both books, and make up your own minds, my brothers.
    __________________
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    Second 3T MRI 1/17
    RALP 7/17, G3+4, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over next 4 months
    DCFPyl PET & ercMRI @NCI - 11/17
    One inch tumor still in prostate bed
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    SRT, 2ADT, IMGT 70.2 Gy, complete 5/18
    PSA 0.066 1/20, .059 6/20 .077 9/20

     
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    Old 08-24-2020, 04:03 AM   #7
    IADT3since2000
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    ADT3, Especially Proscar and Avodart

    Gary, thank you for your reply. I know a lot more about this issue, but let's either use an old thread about this, if open, or start a new one so this thread about the upcoming conference does not get cluttered. I hope to post the URL for the FDA hearing on Proscar and Avodart. The transcript includes statements by the participants, including Dr. Walsh.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 08-24-2020, 09:06 AM   #8
    Gary I
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    Thank you also, Jim. I know you're trying to help and inform, based on your knowledge.

    I'm just trying to put some balance on your informed opinions, and have zero interest in debating you. While I respect all the work and the medical and marketing expertise of Dr. Scholz, I am suspicious of his underlying motives, and of the subject Conference, which he controls. A subtle infomercial, perhaps? A call to his private office for advise, and one gets a warning about a high charge. IIRC, something like $1,200.

    I've received detailed advise from many physicians for free, including Dr. Walsh, and Dr. Carter. The Johns Hopkins virtual team opinion analysis and report was something like $800. I choose to visit them in person.

    Be well and stay safe.
    __________________
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    Second 3T MRI 1/17
    RALP 7/17, G3+4, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over next 4 months
    DCFPyl PET & ercMRI @NCI - 11/17
    One inch tumor still in prostate bed
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    SRT, 2ADT, IMGT 70.2 Gy, complete 5/18
    PSA 0.066 1/20, .059 6/20 .077 9/20

     
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    Old 08-24-2020, 06:30 PM   #9
    IADT3since2000
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    Gary, I'm sure we both have good intentions. Here's a bit of my own experience with the truly expert doctors, the "artists."

    I'm familiar with a number of expert prostate cancer providers who are extraordinarily expert and do charge high fees. But you tend to get what you pay for.

    I mostly relied on hard working, dedicated and talented local medical oncologists who billed normal amounts. Usually my consultations would last for about 15 minutes with the doctor after prep by a nurse (vitals, pain level, weight, med and insurance changes, etc.), and often I left with some questions unanswered. Overall, they did a good job. However, my local doctors were general medical oncologists who did not specialize in prostate cancer, though they did have, I believe, quite a few prostate cancer patients.

    My strategic consultations with an expert were quite different: the charge for the first consultation, as I recall it, was $1,700; the time, including an initial brief workup by a nurse, was three uninterrupted hours, and all that followed test results and a lengthy questionnaire (about 15 pages, as I recall it). That's just a very different way of practicing medicine, and I consider his advice priceless.

    That doctor is probably typical of such leading experts in that he spent a lot of time keeping up with and contributing to the field, as well as regularly providing free presentations and supportive pamphlets to support groups. That doctor was not Dr. Scholz, but Dr. Scholz did answer an email question for me for free many years ago, and I have spoken to him at least three times at the conferences without charge - a wonderful opportunity at these conferences, obtaining helpful information.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 08-29-2020, 01:02 PM   #10
    IADT3since2000
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    Two of the Three "To Be Decided" (TBD) Speakers Now Identified:

    First Day - 12:00pm - 12:30pm | Presentation sponsored by Janssen: Prostate Cancer: Understanding Today’s Treatment Challenges | Matt Rettig, MD

    I am not familiar with Dr. Rettig.

    Second Day - 9:00am - 10:30am | Advanced Treatment | Nicholas J. Vogelzang, MD, FASCO, FACP

    Dr. Vogelzang is a very well known medical oncologist in the prostate cancer survivor, treatment and research community. He has given excellent presentations previously at the conference.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 09-11-2020, 05:21 AM   #11
    IADT3since2000
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    5 Hours to Go, But Virtual Exhibit Hall Already Open, I Believe

    It is now a few minutes after 8 am on the East Coast - only 4 1/2 hours to go.

    I've been curious just how contact would be made for those of us who have registered, and I just saw an email from PCRI with a "click here" button to participate in the conference, which starts at 9:30 am Pacific Daylight Time, so 12:30 pm here on the East Coast. I believe registration is still open, and I suspect it will remain open throughout the conference.

    I was pleased to see that there is an "Exhibit Hall", virtual this year, where vendors offer information about their goods and services. There are several big pharma vendors who provide some of the drugs for prostate cancer patients and one known for its genetic testing, and there is one foundation that seems to provide financial support. At least one of the vendors is offering a toll free number for conversations. I haven't "visited" the Exhibit Hall yet, but I believe it is open now. It is always fun to visit the Exhibit Hall during the breaks when you attend the conference in person, and you come away with a bag full of items packed with a lot of information. I'm thinking the virtual hall will also work well.

    The last speaker has now been named. If you want to check out their bios and see where they practice, you can click on the blue hyperlink for their names on the schedule, now available at the PCRI website via the Conference button. To check their research backgrounds and see where they practice, you can go to www.pubmed.gov, which is a US National Library of Medicine site sponsored by the US National Institutes of Health, and search for the authors names. Here's what I am turning up with the following searches, in order of the presentations:

    FRIDAY, SEPTEMBER 11, 2020

    9:30am - 10:00am | Opening Remarks with Mark Moyad, MD
    Searched www.pubmed.gov for - moyad m [au] AND prostate cancer – 60 papers listed

    10:00am - 12:00am | Prostate Imaging | Daniel Margolis, MD
    Searched www.pubmed.gov for - margolis d [au] AND prostate cancer – 110 papers listed

    12:00am - 12:30pm | Sponsored presentation by Janssen: Prostate Cancer: Understanding Today’s Treatment Challenges | Matthew Rettig, MD
    Searched www.pubmed.gov for - rettig m [au] AND prostate cancer – 62 papers listed

    12:30am - 2:00pm | Active Surveillance | Laurence Klotz, MD
    Searched www.pubmed.gov for – klotz l [au] AND prostate cancer – 369 papers listed (Wow!)

    2:00pm - 2:15pm | Closing Remarks

    Saturday, SEPTEMBER 12, 2020

    8:30am - 9:00am | Opening Remarks with Mark Moyad, MD (see above)

    9:00am - 10:30am | Advanced Treatment | Nicholas J. Vogelzang, MD, FASCO, FACP
    Searched www.pubmed.gov for - vogelzang nj [au] AND prostate cancer – 167 papers listed

    10:30am - 12:00pm | Radiation Treatments | Mack Roach, MD
    Searched www.pubmed.gov for - roach m [au] AND prostate cancer – 303 papers listed (Wow!)

    12:00pm - 12:30pm | Presentation sponsored by Bayer: Getting to Know NUBEQA® (darolutamide) | Kelli Gingerich, MSN, AGACNP-BC
    Searched www.pubmed.gov for – gingerich k [au] AND prostate cancer – no papers listed

    12:30pm - 2:00pm | Conference Review, A Year in Medicine, and Q+A | Mark Moyad, MD & Mark Scholz, MD
    Searched www.pubmed.gov for – scholz m [au] AND prostate cancer – 34 papers listed

    2:00pm - 2:30pm | Closing Remarks

    Keep in mind that most doctors in practice, including very good ones will not be authors or co-authors of any papers. This list is quite extraordinary. You can view abstracts of each listed paper by clicking on the blue hypertext. Sometimes there is a link to a free copy of the complete paper.

    I feel like I did when I was a kid waiting for Santa Claus - only hours to go now.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength.

     
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    Old 09-11-2020, 02:26 PM   #12
    IADT3since2000
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    Whew! The first day just ended. It was like drinking from a fire hose, but I think I captured the points including all the slides.

    What a lot of valuable information!

    Now for a nice glass of wine!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength.

     
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    Old 09-12-2020, 05:21 AM   #13
    IADT3since2000
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    Day 1 of Yesterday's Conference Now Available

    I was surprised and delighted to be able to access a recording of Day 1 of the conference at https://pcri.org/2020-conference#theinvitation. For those of us who missed it, it is still accessible. I don't know if this will be a permanent library item at the PCRI site or not. But at least it will be up for a while. I also tried clicking and holding the time ball, or whatever it is called, and scrolling through the five hours of coverage. That works perfectly; we can quickly focus on or replay whatever we want.

    Day 2 will commence at 11:30 am PDT, an hour earlier than the start of the first day's session.

    Bravo PCRI and the conference presenters!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength.

     
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    Old 09-12-2020, 03:28 PM   #14
    guitarhillbilly
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    Re: The “2020 Prostate Cancer Patient Conference” – Soon to be Readily Accessible to

    Quote:
    Originally Posted by Gary I View Post
    While I respect all the work and the medical and marketing expertise of Dr. Scholz, I am suspicious of his underlying motives, and of the subject Conference, which he controls. A subtle infomercial, perhaps? A call to his private office for advise, and one gets a warning about a high charge. IIRC, something like $1,200.
    Dr Scholz has several YT Videos with great information for free. In my opinion a true money grabber would not be making lots of info available for free on YT.
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
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