Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 27, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: Age 50 with BRCA2 — surgery or radiation? and what about PARPi?
Topics Discussed
Newly diagnosed with BRCA2 mutation at age 50, extracapular extension and seminal vesicle invasion – surgery or radiation? PARP inhibitor upfront?; nomograms don’t account for mutations; didn’t love daro, but he’ll give it a second chance; after radiation, recurrence in the prostate but no metastasis — brachy or cryo next?; a new treatment puts an enzalutamide right into the prostate; after 1 1/2 years of monthly Xgeva, time to get off?; Pluvicto was working, so he skipped the last two treatments; insurance coverage for a second Pluvicto treatment; computer failure sends his hospital back to paper and pencil — but he gets his Orgovyx; psst – Dr. Elisabeth Heath plans a move to Mayo; PSA of 3.75 after radiation seems really high — but we’ve seen it take years to drop; doc suggesting a holiday from his abi monotherapy; taper off prednisone slowly and carefully, monitoring blood; for estradiol questions, check out our discussion video with Richard Wassersug.
Chat Log
Darren Chervitz · 6:49 PM
Thanks for listening and for all the incredible information!
Unknown · 7:02 PM
Change of plans, I have no need for time today. Recent Provenge cause pulmonary embolism took about 4 weeks before showing improvement, moderate improvement now. Latest PSA (8-22) trended down to 0.48.
Larry Schuller · 7:05 PM
The conventional wisdom about surgery after radiation is that surgery on tissues that have been damaged by radiation is problematic and most surgeons will try to avoid it.
Larry Schuller · 7:06 PM
Localized ablation is another matter.
Unknown · 7:06 PM
Larry S. – that was the ‘old’ wisdom. It really is no longer.
Larry Schuller · 7:08 PM
Rick, I would LOVE to see that research. I had prostatectomy and am recommended salvage radiation but expect to have future surgeries and am concerned about those.
Unknown · 7:10 PM
No recommendations on avoiding blood clots side effects. Dr stated that he has many patients who have had Provenge and that I am the only patient to report blood clots.
Len Sierra · 7:13 PM
Larry Schuller, there are now surgeions who specialize in post-RT prostatectomy. Dr. Eastham at MSK is one that I know of.
Larry Schuller · 7:14 PM
But is post-radiation surgery common outside of those specialists?
Len Sierra · 7:15 PM
Not sure, probably not common.
Jim Marshall, Alexandria, VA · 7:36 PM
Cookies, to me, are a better choice to donuts. always a nice touch. Jim M
Steve Roux, MI · 7:47 PM
The order I called in to the bakery included 1/2 dozen scones too. Almost like a giant cookie?
Kirt Schaper · 7:52 PM
i have to go, thanks all
Jim Marshall, Alexandria, VA · 7:56 PM
No more worrying about turning 80 an dno longer to worry abouit dying young. Jim
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 13, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: Exercising when it even hurts to walk; building muscle without T (bn)
Topics Discussed
Those blahs weren’t Xtandi — they were Covid!; muscle mass without testosterone — not an exercise in futility; “Mr Hot Flash” is doing pretty well on Orgovyx; at age 59, “head-to-toe bones mets” and PSA of 1,440; PSMA scan isn’t enough before Pluvicto — get a recent somatic test; with the mets, it hurts so damn much to walk — how to exercise?; denosumab has an edge over Zometa for bone health, and Zometa monthly is too much; coming off second drug holiday, discouraging news — ; recurrence suggests he’s “castrate resistant” even though he’s getting no ADT; radium instead of Pluvicto for bone-only mets?; the new “Mr Hot Flash” learns about Embr Watch; a two-fer radiation will get both his prostate and the met on his pelvic bone; mixed feelings on rectal spacers for radiation; Dr. Chuck Ryan now at Sloan Kettering, soon accepting new patient; why all this trial information from Merck on Facebook?
Chat Log
AnCan – rick · 6:25 PM
ACSM trainer finder….. look for Certified Cancer Exercise Trainer https://certification2.acsm.org/profinder?_ga=2.139239987.1600007473.1525799292-1759941655.1523997371
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 5, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editors Pick: Crazy increases in PSA suggests therapy is not working; Dr. Bob GRHS (rd)
Topics Discussed
Dr. Bob GRHS’; low level mCRPC – what next?; fermented foods; starting olaparib with somatic BRCA2; chemo holiday for our foamy gland man; long resistant gent starts mono or double HT in the Fall; Vit D and Metformin discussion; heart is solid – PSMA to follow; erratic, fluctuating PSA suggests Tx not working – needs 2nd opinion; Decipher not useful for this situation; stopped abi and prednisone on his schedule + psych issues; 2 gents start start HT for 1st time; Intermittent HT discussion; restarting mono LHRH.
HAHA. Yes. That’s exactly what I was thinking. But yes. The older crowd. I really want to make the under 60 zoom Thursday but I’ll be playing taxi cab during that time. Sigh.
CALCIUM SCORE PRESENCE of CAD (coronary artery disease) O No sign of CAD 1-10 Minimal signs of CAD 11-100 Mild signs of CAD 101-400 Moderate signs of CAD 401+ Extensive signs of CAD
Frank Fabish Columbus OH
sent: 8:33 PM
Thanks for listening guys. Got to run. thanks for the dialogue.
Michael McCabe
sent: 8:42 PM
Got to go guys, see everyone at next meeting
Steve Roux, MI
sent: 8:43 PM
GREAT Meeting guys – I need to take my rescue puppy out for a walk. Goodnight all!
THOMAS M
sent: 8:52 PM
I have used the “Cancer Care” booklet from the FLCCC Alliance, Dr. Paul Marik, MD. The discussion about vitamin D brought this to mind. It suggests repurposed uses of various supplements and pharmaceuticals for cancer treatment. Its worth a glance.
Gary P
sent: 8:55 PM
https://betterdayscounselingllc.com/
John A
sent: 9:10 PM
gotta stop now guys see you next week
Matt M
sent: 9:12 PM
gotta go boys, have a great week! I’ll be on some next onens…..
THOMAS M
sent: 9:22 PM
Time to scoot. Thanks all.
Dr. Jeff
sent: 9:39 PM
gotta sign off. Past my bedtime. see everyone next week
Helpful Tips to be Your Own Best Medical Researcher
AnCan asked Mike Wyn, a valued AnCan Frequent Flyer and intrepid researcher, to provide a little navigation to those who are new to research… as well as useful tips for some old hands like myself. I’ve already gathered some research nuggets from Mike’s wisdom… thank you, Mr. W.
Here are a few tips ensure the medical information you are researching is reliable and accurate
Book Research
Check the publication date: authors may need at least a year to write a book, and the average time between a book’s acceptance and its publication is typically between 9 to 12 months. Hence, the data may already be outdated when it hits the shelves
Professional Presentations
Check the credentials, disclaimers, and disclosures of the presenters. Who is the author? What is the sponsoring organization providing the information? Preferred sources are from reputable institutions, such as universities, hospitals, or government health agencies.
Google Web Searches
Use command “site:” to limit you search to top-level domains like .gov, ,org and ,edu. For example, type: latest NCCN guidelines for prostate active surveillance site: .gov OR site: .org OR site: .edu
Be cautious with .com sites unless they are from recognized and credible entities. Medical databases such as PubMed, Cochrane Library, and Google Scholar are good sources for cross-referencing scientific research.
Articles, Online Posts
Check articles, online posts, videos etc. for their sources, including scientific studies, medical journals, or clinical trials. Information from peer-reviewed journals is typically more reliable than content from non-peer-reviewed sources. Poor reviewed means that other people similarly qualified to the author have reviewed teh article adn provided comments.
Anecdotal Evidence
Anecdotal evidence is information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:
Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.
Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.
Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.
Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.
Medical Trial Reports
The phases of medical trial studies cited by published medical papers are:
Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’ means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice. Then studies move on to humans…
Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.
Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..
Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.
Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Statistical Terms
Some terms regarding statistical data cited in medical journals are explained as follows:
N = the number of participants: be wary of studies with a very low N.
HR = hazard ratio: HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR<1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.
CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is <=0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested..
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editors Pick: The passing of Jim Barnes; ADT know-how from Richard Wassersug (bn)
Topics Discussed
Passing of Jim Barnes, age 65 — his mutations (P53 and PTEN) may have made actinium/lutetium treatments ineffective; a delicate spot radiation gets moved earlier; after five years of remission, PSA drifts just high enough to be worrisome; blood clots in lungs after his final Provenge infusion — “I actually could feel bumps”; scary bright spot in his PSMA PET appears to be a prostate cyst; OK to start Casodex and Lupron at the same time?; a mini-webinar from Dr. Wassersug on ADT preparedness; Dr. W says metformin does not appear to forestall ADT-induced diabetes; and he updates us on his still-unproven but intriguing estradiol treatments — note, please, that they’re not a way to avoid ADT symptoms!; new team is eyeing PSA before starting radiation; testosterone still trailing after 2-year treatment holiday; at Carbone, we like Dr. Lang — also take advantage of Carbone’s palliative care, and be honest with them.