Hi-Risk/Recurrent/Advanced PrCa Video Chat, 5/4/26
Survey Opportunity
$200 for a 60min interview. Must be mHSPC or mCRPC; 40-75+/-; NOT have used Talzenna, Xtandi or Orgovyx. Reach out to Jason at 773 383 9090 jturner@flinceresearch.com. 15 needed. Indicate you are via AnCan and let us know if accepted (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: Mutation issues prevail tonight… but also 1.4 PSA on mono daro raises questions.
Topics Discussed
Does PTEN change HT duration?; low/intermediate Gent sneaks in; gynecomastia prevention; is a 1.4 PSA on mono daro good or bad?; 2nd opinion for another PTEN Gent; BRCA Gent finds new lead GU MO; HIFU for recurrence within prostate; bad reaction to first chemo; PSA rises 4x in 3 months; younger Newbie follows triplet against TP53 and PTEN
Chat
AnCan – Rick sent: 4:53 PM
Flince survey…. NO Talzenna, Xtandi or Orgovyx JTurner@flinceresearch.com
40-75 +/- metastatic
AnCan–John A sent: 5:42 PM
germline (inherited) gene test
AnCan–John A sent: 5:44 PM
Dr Epstein: advanceduropathology.com (516)280-7930
Don Rogers sent: 6:06 PM
anastrozole 1 mg twice a week
Len Sierra sent: 6:24 PM
The only study I’m aware of was the EMBARK trial with 3 arms: ADT alone, Enzalutamide alone, and combo of enzalutamide and ADT. Read about that trial.
Richard B, Silver Spring, MD sent: 6:31 PM
I need to step away to take a phone call. I appreciate the efforts of the AnCan team for their efforts to this evening’s discussion.
AnCan–John A sent: 6:33 PM
cabazitaxel Jevtana
AnCan Bill sent: 6:34 PM
Frank is still on. Just not in front of his camera right now.
Bruce Schrimpf sent: 6:59 PM
Thanks guys! As always good!
Jim Marshall, Vet Support Grp. Moderator sent: 7:03 PM
Another Trial for PTEN for mCRPC is being run by the VA and GW Hospital called the Carpet Trial. Jim M
“Thomas” Matica sent: 7:03 PM
Good night, gents. Very good meeting and many thanks to our great moderators
$200 for a 60min interview. Must be mHSPC or mCRPC; 40-75+/-; NOT have used Talzenna, Xtandi or Orgovyx. Reach out to Jason at 773 383 9090 jturner@flinceresearch.com. 15 needed. Indicate you are via AnCan and let us know if accepted (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: PSA rockets to 186 and bone mets are found 5 months after prostatectomy; AND, self-advocacy pays off!
Topics Discussed
Recurrence (salvage) RT success but Newbie is anxious; BRCA germline Newbie in treatment at MSKCC; PSA skyrockets right after surgery and mets are found; treatment doing its work and GU med onc confirms path; great experience with AnCan Advisor Dan Georg who endorses treatment; 2nd opinion where academic conflict of interest is suspected; bad reaction to Zometa; chemo steroids create mega-munchies – GLP1 helps; if enz is not making issues, don’t switch; BRCA gets Gent to finally see a GU med onc; rash from coming off HT meds; self-advocating shortens time on HT doublet
Active Surveillance Prostate Cancer Video Chat, April 22nd, 2026
AnCan is grateful to the following sponsors for making this recording possible: Novartis, Telix, Blue Earth Diagnostics, and Foundation Medicine.
Active Surveillance (AS) for low-risk prostate cancer involves unique challenges compared to other treatments. This online support group is designed for men and their caregivers who are currently on or considering AS. We hold four meetings monthly, recording only the second and fourth sessions. Our discussions cover a wide range of topics, including anxiety management, biopsy experiences, and the decision-making process around continuing or discontinuing AS. Newcomers are given priority to share their experiences, so we encourage you to join us.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussion 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!
Editor’s Pick: Small acts of kindness go a long way. (bj)
Topics Discussed Correcting your VA claim record when the VA thinks you stopped medical treatment; obtaining your medical records from the VA requires a FOIA request; work the AnCan network people in the group are willing to help you outside of AnCan sessions; when people go out of their way to help you find a positive way to thank them — small acts of kindness go a long way; in-person visits can produce better outcomes than phone or online interactions; ALS is considered to presumptive by the VA; understanding Special Monthly Compensation (SMC) Subsection S (SMC-S) housebound benefits.
Chat
AnCan – Boykin sent a chat · 8:14 PM
veterans@ancan.org
AnCan – Boykin sent a chat · 8:17 PM
YouTube Channel https://www.youtube.com/@ancanfoundation/playlists
Israel sent a chat · 8:40 PM
VSO
Israel sent a chat · 8:40 PM
Another benefit og going to your local VA office in person is that they usally have VSO offices in the same building.
Hank Zajic Springfield VA sent a chat · 9:07 PM
I have to head off. Best regards to all and thank you for a great meeting Capt Jim!
Bruce Schrimpf sent a chat · 9:10 PM
If any VA intake person who is a male wants to argue that getting a shot in the penis is not really a disability, let that goof be the first to volunteer for the proceedure!
Eric Baker – Lafayette sent a chat · 9:18 PM
I am going to sign off for the night! Thank you everyone!
AnCan – Boykin sent a chat · 9:19 PM
Good night Eric!
Bruce Schrimpf sent a chat · 9:54 PM
Bruce is 80
Bruce Schrimpf sent a chat · 9:59 PM
Good seeing all if you again. Great job Jim!
AnCan – Boykin sent a chat · 10:00 PM
veterans@ancan.org
Hi-Risk/Recurrent/Advanced PrCa Video Chat, 4/20/26
Survey Opportunity
$200 for a 60min interview. Must be mHSPC or mCRPC; 40-70yr; NOT have used Talzenna, Xtandi or Orgovyx. Reach out to Jason at 773 383 9090 jturner@flinceresearch.com. 15 needed. Indicate you are via AnCan and let us know if accepted (rd@ancan.org)
AnCan thanks the following sponsors for making this recording possible: Novartis, Telix, 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: What to do when assigned control arm in a trial
Topics Discussed
Germline BRCA2 Gent graduates to this group 6 mo. post surgery; heart issues arise – at 87! Can E2 worsen cardiac condition?; entering “Long Game’ trial but wants a GU MO; assigned control in Xalirutamig trial, and seeking alternatives – MSKCC 2nd opinion; embarking on IHT, but very low pulse requires investigation; why’s he getting a PSMA with undetectable PSA – new GU MO could be in order; PSMA and PSA stable – time to debulk?; change HT to daro one year out?; ongoing fatigue – try Wellbutrin; accepted to Long Game, but PSA doubling fast; recurrent Mx Gent finds he’s germline BRCA2 on AnCan’s pushing
AnCan thanks the following sponsors for making this recording possible: Novartis, Telix, 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: Don’t blame it on the prostate cancer… two Gents report tenderness but is it something else?
Topics Discussed
Newbie prescribed singlet HT when doublet was SoC – don’t switch w.3 months left but change docs; is cystoscopy the right procedure?; IHT after 3 years – but what bout shortness of breath; is tenderness from exercise or cancer?; is HT the right first step on BCR; insurance declines Axumin; starting AMG509 xaluritamig trial; stable on mono daro at 86; just finished 6th Pluvicto for foamy cell PrCa; don’t fret over tiny PSA moves; is chest tenderness down to HT or a previous cancer?; not eligible for Capitello trial – needs 2nd opinion on intensification
Chat
AnCan – Ric sent: 3:04 PM
GoTo Help 877 582 7011
Danny sent: 3:13 PM
Have to duck out for a couple of minutes.
David D Seattle sent: 3:14 PM
David joined by phone, I have an update
Len sent: 3:31 PM
Yes, my brother in arms, I was at the beach today. Water temp was 73. Re: your email – did you complete your chest RT?
Hello Steve! Yes, I’ll need to step up my sunblock to spf 50. UV index is high every day. How’s by you?
Adrian (Tony) Bruno sent: 3:51 PM
ask him what his hemoglobin level is
Steve Roux, Up North, Michigan sent: 4:00 PM
I got to run gang. So good to see you all. Great meeting as usual!
Joseph (Sean) Siry – Laguna Woods, CA. sent: 4:04 PM
Dinner is on the table, so I will have to go also– & I can report next time the good news.
AnCan – Rick sent: 4:06 PM
For everyone – Please tell us if you think you need to leave early…(should have added, “and you asked for time’:rd)
Bob Y — Los Angeles sent: 4:13 PM
I also need to leave early. Happy to see all of you.
Jim E., Ft. Worth T sent: 4:17 PM
While I haven’t had “Germline” testing, I had a complimentary gene testing through a group called Color, and they indicated no concerns for increased risk. I have logged in and opened my biopsy and PSMA PET results.
Bruce Schrimpf sent: 4:27 PM
I may have b e to leave there is a tornado warning for areas just to the South of my home. BDS
