Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 28, 2026
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: Dr. Paul allowed PSA to rise to 160, and then kept 3x Pluvicto back that he now plans to use!
Topics Discussed
Newbie has local care that is not up to SoC; “Oldie” needs to replace Dr. E; how frequently and which scans when monitoring during drug holiday; successful AUS installation; Gent is successfully post RT/HT but when will T. return?; v. high cholesterol calls for statins – don’t fuss about fatigue side effects; mirabegron has few side effects for our user; clinical trial delay is a stressor; PSMA scan has great results… but cardio issues are for another group; remaining Pluvicto sessions preferred to SBRT; PSA got to 160 on drug vacation; E2 discussion featuring Dr. Paul coming soon – see Reminder;
Chat
AnCan – rick sent: 3:08 PM
The E2 Session with Dr. Paul is on Thu Aug 20. My apologies for the error.
Bob Schwartz, USN, Venice, FL. sent: 3:09 PM
No apologies necessary. Nice to see that your Human.
Jim Marshall, Vet Sup Grp. Moderator sent: 3:28 PM
Dr Channing Paller, Sibley Hospital, Johns Hopkins. Wash DC
Federal Blue Cross Insurance is top notch.
Morgan Brooke sent: 3:30 PM
Can Rick speak more about what is wrong with the 6-month Eligard shot?
I believe the Predinsone is to assist with controlling blood pressure
Jeff Marchi – San Francisco sent: 3:32 PM
the prednisone is to restore cortisol which zytiga stops production of without cortisol you have severe fatigue
Wes – San Diego sent: 3:33 PM
PSMA could have a false positive for the shoulder, but that might depend where the other sites are.
Jeff Marchi – San Francisco sent: 3:34 PM
rick does not feel the 6 month shot lasts the full 6 months (Ed: ‘may not’)
I had a 6 month shot for 6 years, had testosterone tests every month had it stayed undetectable the whole 6 months results may vary
Wes – San Diego sent: 3:38 PM
I was on federal BC/BS, and was on Orgovyx.
Bob Faulkner sent: 3:38 PM
I am a new member also Bob Faulkner
AnCan – rick sent: 3:41 PM
Bob – we can’t assure new men of time unless here in the first 5 minutes. Either we may be able to take you at the end, or we can definitely do an intake next week.
Wes – San Diego sent: 3:53 PM
Orgovyx and other ADT have potential cardio side effects, lengthened ST being one. I chose Orgovyx because I had cardio issues, and Orgovyx had fewer issues than Firmagon. Ironically, PSA did not drop sufficiently, so after about 6 weeks, I switched to Firmagon.
Rick S sent: 3:54 PM
I have a lot to learn!
Pierre D., Olean, NY sent: 3:56 PM
Another advantage of Orgovyx over the injectables is if you do develop side effects from Orgovyx you can stop it and it’l clear out of your system within weeks not months.
Wes – San Diego sent: 3:57 PM
V true; Firmagon has 1/2 life of 53 days.
Jeff Marchi – San Francisco sent: 4:03 PM
Orgovyx half life is 25 hours
AnCan – ricksent: 4:11 PM
Artificial Urinary Sphincter AUS
Morgan Brooke sent: 4:14 PM
Thank you all for your time. I need to run. I’ll to join more often.
From PCa commentary – After 3 – 9 months of ADT nearly all men fully recover by about 10 months; – After 18 – 24 months of ADT only 60% fully recover by about 3 years; and – After 36 months of ADT exposure only 50% fully recover by ~ 5 year
Wes – San Diego sent: 4:31 PM
Thanks Jeff, that conforms to my experience after 8 months on Orgovyx and Firmagon. After about 60 days being off, I felt substantially better (feel more like myself, peripheral vision is better, libido slowly coming back)
Repatha has far fewer side effects than statins. Repatha is remarkably expensive.
Alfredo in Sacramento sent: 4:33 PM
yes, my wife had bad reaction to Repatha but does fine on Praluent
Wes – San Diego sent: 4:35 PM
I had a bit of not having land legs on Repatha; not bad, but dropped LDL from 100+ to 30.
Steve Roux, Up North, Michigan sent: 4:41 PM
I need to run. As usual – GREAT meeting gang! See all of you next week.
Alfredo in Sacramento sent: 4:41 PM
my wife had total cholesterol of 309 mg/dl 5 years ago (did not tolerate any of several different statins); 180 mg/dl 2 weeks ago on Praluent . we believe she has Familial (inherited) hypercholesterolemia
Jeff Marchi – San Francisco sent: 4:46 PM
I have low cholesterol and my doctor put me on a statin and it crippled me. added at least 10 years to my life while on it. Friends asked my wife if I had much more time.
Active Surveillance Prostate Cancer Video Chat, July 22nd, 2026
AnCan is grateful to the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics, Telix, 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.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 20, 2026
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
This newbie MD lacking his own records; starting HT may cause inflammation and urinary issues; side effects from salvage RT; high liver markers persist but fall with pause in HT; medical leave makes all the difference; addressing hot flashes; Reel Recovery gets more AnCan accolades; alternating annual whole body MRI and PSMA scan when stable; 6 month shot with no buffer administered???; successful video chat with dr. E; maybe mono daro may be easier to follow than switching Orgovyx to E2; consider wide boar or open MRI if claustrophobic
Chat
Ancan sent: 5:13 PM
I have a nutrition question about eggs and poultry skinless. Choline causing aggressive prostrate cancer or recurrence according to pumped.
Jim Marshall, Vet Sup Grp. Moderator
sent: 5:32 PM
meeting 1st & 3rd Mondays at 08:00pm ET – 2nd & 4th Tuesdays at 06:00pm ET. Jim
It may be coincidence but my hot flashes increased in intensity and frequency after adding Nubeqa to Orgovyx. I had been on Orgovyx only for 7 months prior.
Jim Stewart Reno, NV sent: 6:46 PM
signing off, thanks again for all the input!!!!
Stan Friedman sent: 6:48 PM
where was this?
Jeffrey G sent: 7:11 PM
Hey – I didn’t ask for time. It must have been the other Jeff
Eric Curtis sent: 7:14 PM
Thanks again guys. Catch you next time Monday roles around.
Bob Rieder – Eden Prairie, MN sent: 7:21 PM
Thanks to everyone for the discussion tonight! Signing off for this session.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 14, 2026
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: If radiation forces a catheter, do you continue with the treatments?
Topics Discussed
Newbie hangs up on us; how frequently do you need a PSMA scan’; make your personal evaporative cooler; switching to estrogen or adding patch for hot flashes; rash from apalutamide; MSKCC comes up with options – RLT, chemo or more HT; bicalutamide tides Gent over to RT + Lupron but Flomax needed; moving to 1/4 dose abi protocol; curious response to DEXA scan; PSA holding low after RP and pre RT; holding steady but more spot RT needed for shoulder; debulk RT calls for catheter after – check with GU MO before continuing
Chat
Barry Blomquist sent: 3:15 PM
How you doing?
Jeff Marchi – San Francisco sent: 3:17 PM
hey Barry, who you asking
Barry Blomquist sent: 3:26 PM
Sorry
Ancan sent: 3:26 PM
Lol
Jim Marshall, Vet Sup Grp. Moderator sent: 3:38 PM
Have a Vet retired over in Estonia, Stage IV who has been on Double Dose Bicalutamide for many years. He is happy with it, have explained the alternatives but he is happy with how he is being treated. Jim Marshall.
Jeff Marchi – San Francisco sent: 3:47 PM
I know a guy that used casodex on and off for 5 years. would stop and PSA would rise and he would go back on Eventually needed an ARPI
Jay in MN sent: 3:58 PM
I cool off by jumping in the lake in MN🤪
Steve L sent: 4:03 PM
The Armstrong Study only address patients with nmCRPC and mCRPC. I am mCRPC which is not part of the conclsion of the analysis. Are there any studies appropriate for me
correction follows
Armstrong study is of mHSPC ans nmCRPC.
Copy of Conclusion of Armstrong Study follows “Given the frequent discordance and poor prognosis of imaging-based progression in the absence of PSA changes during enzalutamide treatment in mHSPC and nmCRPC, periodic surveillance using imaging is recommended.”
I need to jump onto another Zoom session at 8p Eastern. Good night, fellas.
Wes – San Diego sent: 4:56 PM
Damn, figured this out; long time; got an update, mostly all good; maybe next week.
Wes – San Diego sent: 5:02 PM
Curious to see why radiation to help issues of bladder/colon; sounds counter-intuitive.
Bob Alvord sent: 5:12 PM
Thank you for time to discuss my situation. Gotta run now and see you next week.
phil sent: 5:16 PM
Thank you for taking time for me and good advice. Planning on getting more radiation, hopefully at least 5 more sessions on shoulder. if more needed will follow up. Thanks again. and also staying on until clean
Inherited/Germline Mutations Video Chat Support Group – July 9th, 2026
Welcome to AnCan Foundation’s Inherited Mutations Virtual Support Group. This is a quarterly, free, and drop-in video chat support group that takes place at 8 pm Eastern on the 2nd Thursday of January, April, July, and October at https://ancan.org/schmier.
Our group is open to anyone touched by an inherited mutation of any type. That includes carriers, family members, and previvors. We are peer-led and discuss any and all issues surrounding inherited / germline mutations. Our group may include health care providers, but they’re always there as peers.
Educational presentations are made separately – we are planning a webinar for Monday, Aug 31st, addressing “Genetic Counseling for Families Living with Inherited Mutations”. For more information on the group or upcoming webinar, please write info@ancan.org.
AnCan thanks Novartis for making this event and recording possible. Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators, and Participants.
Topics Discussed:
Robust discussion around the experience of sharing a diagnosis with family members. How do you get others to test, especially offspring?
What follow-up is your Provider ordering? Is it sufficient?
Chat Log:
AnCan – Rick sent: 5:37 PM
We are definitely sponsored by Novartis as part of our Survivorship sponsorship. We’ll include it on the web page and the reminder.
David in Portland, OR sent: 6:20 PM
“Cancer Risks Associated With BRCA1 and BRCA2 Pathogenic Variants,” 2022https://ascopubs.org/doi/full/10.1200…
AnCan – Rick sent: 6:24 PM
From Bill H….. The BRCA1 mutation has an increased risk for breast, fallopian tube, ovarian, primary peritoneal, pancreatic, and prostate cancers. (from FORCE).
Active Surveillance Prostate Cancer Video Chat, July 8th, 2026
AnCan is grateful to the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics, Telix, 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.
Andy, Florida 8:24 PM
Advanced Uropathology of New York 700 Stewart Ave, Suite 101 Garden City, NY 11530 Hours: Monday-Friday 9:00AM – 6:00PM P: 516-760-2037 F: 516-200-3899 jepstein@imppllc.com
