Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 21, 2026
Substack is coming to AnCan… or maybe AnCan is coming to Substack. We’ll be posting the best from our Reminders and Blog Posts. Watch our for more details.
NEW AnCan HEART Group for all things cardio.Sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to dr.john@ancan.org to be added to the distribution and Dr. John’s weekly heart primer.
AnCan thanks the following sponsors for making this recording possible: Novartis, Telix and Blue Earth Diagnostics.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed 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
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: Go to ‘Extra Time’ to hear Newbie with PTEN, TP53 and maybe RB1
Topics Discussed
denovo N1 Newbie waits on treatment recommendations; uro assumes Newbie is denovo M1 but SUV is low – needs verification; T rises but PSA holds steady – CRPC??; offered Veozah trial – but hide the Embr watch; PSA increases from 0.16 to 1.6 – could be inflammation or RT; insist on a bone strengthener and switch docs; at least 12 m. of doublet; Reel Recovery rave review; arousal 3 months after stopping org, but Gent expects more; late Newbie faces PTEN, TP53 and possibly RB1 – treatment path???
Chat
Sergio sent: 5:41 PM
David – ty for your message. Let’s def connect. I can be reached at gonzaler84@hotmail.com. We can find time later in the week if this works for you.
Bill Lawler sent: 6:09 PM
When i was prescribed those two drugs, I was advised to stagger the start dates by ten days to two weeks.
FEZOLINETANT
Avery sent: 6:35 PM
Bill Lawler – Are you in the DMV area? If so, which hospital is your care? FYI- I just received the exact same markers and barrigel and I start my 5 and half weeks of radiation treatments on Wed at Sibley.
ok thx
Bill Lawler sent: 6:41 PM
Avery, My 28 treatments start on Oct. 1. Greater Boston area, MGB Danvers.
Avery sent: 6:41 PM
Bill – Wish you well
Bill Lawler sent: 6:49 PM
Fezolinetant principal investigator: Shehzad Basaria, Brigham & Women’s Hosp.
Bob Schwartz, USN, Venice, FL. sent: 7:08 PM
Another good mtg., have to go, see everyone next mtg.
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed 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
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: Two Vets both recur after a long time and cud be candidates for MDT
Topics Discussed
San Diego Veteran faces slow recurrence over 15 years – consider Matt Rettig at W.L.A. VA ; Tacoma to OSHU is well worthwhile to see Dr.E; variant disease produces plenty of PSA but doesn’t respond – Ac225 trial @ MSKCC a possibility; NW Montana G9 Vet recurs after Brachy + ADT @ Huntsman in 2019 – PSA now 18.5; older Gent has bone density issues.
Chat
Dan M, Tacoma WA sent: 3:26 PM
The liquid biopsy phlebotomists will even come to your house.
Bill Lawler sent: 3:37 PM
I’ve been on Darolutamide & Orgovyk ADT treatment for two months. at six weeks my PSA dropped from 14.4 to1.18.
Danny Lankford (Minnesota) sent: 3:41 PM
Ditto here. I started on Darolutamide and Orgovyx and my PSA went from 13-ish down to 0.04 in 3 months.
AnCan–John A sent: 3:41 PM
in one or two years > new theranostics with new cancer cell markers
Alfredo in Wimberley, TX sent: 4:18 PM
Sorry, I must leave early tonight. Best regards to everyone.
Ben Nathanson sent: 4:23 PM
I’m still listening
AnCan–John A sent: 4:30 PM
Dr Theresa Werner is now deputy director at Huntsman
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 1, 2026
Are you in DelMarVa?? Reserve Wednesday night, Sep 16 for an AnCan get-together. We’ll meet for a ‘dutch’ dinner in the Chevy Chase area – location TBD. If you have not received an email invitation and would like to attend, please drop a note to boykin@ancan.org. Partners/spouses welcome!
Substack is coming to AnCan… or maybe AnCan is coming to Substack. We’ll be posting the best of all our Reminders. Watch our for more details.
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to dr.john@ancan.org.
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed 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
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: 1) when your pituitary goes dormant 2) is debulking the primary right?
Topics Discussed
Stable disease but treatment leads to one atrophied kidney; is a GU med onc needed at this juncture?; pituitary never recovered post prednisone/abi – what next?; pros and cons of RT debulking for higher volume denovo Mx Gents; Tony Fig’s shoulder surgery; RT cystitis causes hospitalization and deferral of clinical trial; is Testosterone replacement appropriate?; heart issues defer advocating for a PSMA update
Chat
Pierre D., Olean NY sent: 3:11 PM
$50 \hr
Alfredo in Wimberley, TXsent: 3:55 PM
gadolinium
jeff wood sent: 4:04 PM
What are the repercussions of debulking?
RJ Smith (Seattle) sent: 4:07 PM
Standard side-effects and long-term risks of side-effects from the radiation.
Len Sierra sent: 4:20 PM
The Bardo Thodol – Tibetan Book of the Dead — kudos to Dr. John!
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 25, 2026
Substack is coming to AnCan… or maybe AnCan is coming to Substack. We’ll be posting the best of all our Reminders. Watch our for more details.
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to rd@ancan.org.
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed 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
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: We burst his bubble that advanced prostate cancer can be cured! 😕
Topics Discussed
Newbie #1 skirts triplet but discuss debulking; Newbie #2 encouraged to rethink surgery decision; PSA falls from HT and RT right ahead; whaddya mean, there’s no cure!?!; RT ‘torture’ (really???) vs ADT for life; GUMO will consider E2; weird disease needs a 2nd opinion; Orgovyx not worth $700 for this Gent; walking helps restore muscle loss; Orgovyx produces different hot flashes; changing ARSI before Pluvicto may rock the boat; personal evaporative cooler demo
Chat
AnCan Barniskis – rick sent: 3:10 PM
Dr. John is at a medical appointment, and Len is on his way home.
AnCan Barniskis – rick sent: 3:28 PM
Orgovyx
AnCan Barniskis – rick sent: 3:35 PM
in that case, we won’t add you to the heart group unless you wish?
Here is a more recent reference https://mydoctor.kaiserpermanente.org/mas/news/a-new-era-in-prostate-cancer-surgery-retzius-sparing-technique-delivers-life-changing-results-2941449
Jim Marshall, Vet Sup Grp. Moderator sent: 4:07 PM
Did 5 years of ADT + Abiraterone and tolerated it quite well. jim
Alfredo in Wimberley, TX sent: 4:09 PM
What did the recent JAMA Oncology ProtecT study show? A 2025 secondary analysis looked at 15-year outcomes in men with localized prostate cancer and compared those with cribriform-positive disease to those with cribriform-negative disease. I The findings were important: Among men with cribriform-positive prostate cancer, the 15-year risk of metastasis was 25% with active monitoring, 26% with surgery, and 8% with radiotherapy plus short-term hormone therapy. Among men with cribriform-negative disease, the metastasis rates were much lower: 7% with active monitoring, 4% with surgery, and 3% with radiotherapy. Overall, cribriform-positive disease was linked to a significantly higher risk of metastasis, while outcomes for cribriform-negative disease were favorable across treatment groups.
Bill Lawler sent: 4:45 PM
Dr. Atish Choudury, Dana Farber
Bill Lawler sent: 4:49 PM
What time?
Jeff Marchi – San Francisco sent: 4:49 PM
3pm pacific
Robert sent: 4:53 PM
My update is not critical I can wait til next week.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 17, 2026
Substack is coming to AnCan… or maybe AnCan is coming to Substack. We’ll be posting the best of all our Reminders. Watch our for more details.
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to rd@ancan.org.
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed 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
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: 1) Why are Axillary lymph nodes not considered distant? 2) Why does MSKCC prefer bone Bx?
Topics Discussed
Another low risk Gent graduates to this Group; Pluvicto cleared all but foamy gland cancer; new Sony cooling gismo; urinary blockage from RT inflammation – self catheter; surgical blood clot doesn’t rule out abi+pred but doublet not indicated; HT causes hot flashes… urgency more likely tumor – RT to start; can E2 help with hot flashes? – distracts from key Q about length of HT; moving from Lupron & abi+pred to Orgovyx+daro… is monotherapy an option?; is attending PCRI worthwhile?; Axumin shows a result – local or distant and what next?; RO at Hutch selected and VA sets up genomic tests; E2 access again – attend UCSF session; MSKCC moves off the dime to set up new doublet and Pluvicto…. but why a bone Bx?
lots of repeat information, but it does keep you up to date on any new science. I am very glad to hear you are thriving in your new home.
Gary Martin sent: 6:00 PM
Different catheter brands and diameter vary in ease-of-use and pain/irritation. I find the the Coloplast Speedicath (no-touch, hydrophillic) of smaller diameter 12 easiest.
Bill Lawler sent: 6:19 PM
Transdermal Estradiol
Gary Martinvsent: 6:32 PM
The hot flashes, I hear, interfere with sleep, which can cause the cognitive symptoms.
Bob Y — Los Angelesvsent: 6:40 PM
I need to leave early. My update was just some small detail. Thanks to all. My leg pain is indeed due to disc bulge hitting nerves and not the two ADT drugs.
Gary Martinvsent: 6:42 PM
Last year the PCRI conference was recorded and available online.
Pierre D., Olean, NYvsent: 6:54 PM
Axillary nodes should be amenable to biopsy and somatic testing
AnCan–John Avsent: 6:58 PM
“This send there is slightly prominent left axillary node with slightly increased radiotracer activity…measuring approximately 13 x 11 mm with SUV max of 5.1”
