Hi-Risk/Recurrent/Advanced PrCa Video Chat, Dec 15, 2025
AnCan thanks the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, 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: Finishing 10x Pluvicto; and, following up post-surgery for BRCA germline Gent
Topics Discussed
Endorsing AnCan; 10 rounds of Pluvicto – with a break after 6; low dose estrigen enquiry; Newbie want to know when to intervene on recrrence post-surgery; Tempus report shows PTEN and more; cribriform favors radiation over surgery; time for another PSMA scan; IHT or mono daro – beware of gynecomastia; can reduciing daro dose loer fatigue?; more on cribriform and RT; debulking primary tumor post chemo; BRCA germline Gent wondes when to intervene with RT post RP – and if to include HT
Chat
Jeff Marchi – San Francisco
sent: 6:12 PM
friday this week
Thomas Matica
sent: 6:14 PM
Glad to hear Peter Kafka is doing well.
Stan Friedman
sent: 6:29 PM
after 5 sessions, my psa is now undetectable
Mark N
sent: 6:30 PM
What is the drug that was just discussed?
Larry Schuller – Alaska
sent: 6:31 PM
Mark, Pluvicto work the same way imaging for PSMA-PET scans do. Instead of just giving an image of where the cancer is, it delivers a higher dose that is therapeutic
Mark N
sent: 6:31 PM
Thanks!
AnCan–John A
sent: 6:33 PM
Lee–still undetectable psa?
Larry Schuller – Alaska
sent: 6:34 PM
Many side effecs of standard ADT is actually caused by estradiol deficiency (which is caused by the absence of testosterone). This deficiency is the same as what causes osteopoosis in post-menopausal women.
Larry Schuller – Alaska
sent: 6:35 PM
Men normally have between 15 and 50 levels of estradiol
Larry Schuller – Alaska
sent: 6:36 PM
Breast growth and nipple sensitivity is a side effect of standard ADT too, but at a lower incidence than with estradiol.
Jerry G, Brighton, MI
sent: 6:39 PM
I’ll add support for higher dose estradiol, for me in the absence of testosterone. My osteopenia cleared up, and I am now in the normal range for bone density. I have been on permanent ADT for almost 7 years now, and estradiol for just over 6. My PSA is still undetectable
Larry Schuller – Alaska
sent: 6:49 PM
Tom Miller’s Lymph nodes?
Lee Baylin, Baltimore
sent: 6:52 PM
Dr. John, I’m still undectable.
AnCan – rick
sent: 6:59 PM
Curtis DeVille an Channing Paller at Sibley
Bob Schwartz U.S.N. Venice, FL.
sent: 7:00 PM
Once again, many thanks to the Unknown Anonymous Benefactor, who is matching donations to AnCan. Please know that your kindness is very much appreciated. Good meeting as usual, unfortunately have to go early.
Gedatolisib is a PI3K/AKT/mTOR (PAM) pathway inhibitor showing promising early results in clinical trials for metastatic castration-resistant prostate cancer (mCRPC), often combined with AR inhibitors like darolutamide, targeting the PI3K pathway which is frequently altered in advanced prostate cancers, especially with PTEN loss, to control cell growth and survival, with studies aiming to find optimal doses and demonstrate improved survival and response rates.
Larry Schuller – Alaska
sent: 7:26 PM
Get a baseline bone density, too
Larry Schuller – Alaska
sent: 7:29 PM
Exercise program. A healthy body withstands the rigors of treatment better
RJ Smith (Seattle)
sent: 7:30 PM
Along with all the other tests, PROSTOX might help to know if you are prone to long-term side effects from the radiation. Most people aren’t. Like Rick said, though, if you’ve decided on radiation–might just take go for it. 😉
Steve L
sent: 7:44 PM
By the way, My immunotherapy induced Pulmonary embolism cleared this summer after about 12 months. I started feeling better immediately. They have pulled me off Eliquis. I am back to scuba diving. Currently feeling very good.
AnCan–John A
sent: 7:46 PM
Noted, Steve. that’s good
Bruce Schrimpf
sent: 7:55 PM
Again A very good discussion! Should I not see you before, Merry Christmas!
Re: Second reads on PSMA-PET scan. I had a scan at Fred Hutch Cancer Center and the report was MUCH MORE detailed than the scan I had at my local imaging center. So, Second reads on the original scan imaging is valuable, in my opinion.
Larry Schuller – Alaska
sent: 8:17 PM
On top of that, the written report is only words. Actually showing the imaging to my surgeon saved me an extra surgery. Not mentioned on the report’s text wat that a reservoir from a prior surgery would complicate a robotic prostatectomy. It turns out that if a robotic had been started, it would have had to have been aborted, necessitating a subsequent open procedure.
Larry Schuller – Alaska
sent: 8:18 PM
Show your original imaging to your doctors, especially if approaching surgery
dan-s
sent: 8:21 PM
Thanks all for another great mtg – I have to leave (up early tomorrow)
AnCan – rick
sent: 8:22 PM
Gents – long posts in the Chat poses a problem when we write up these meetings. There is a limit in You Tube on what we can paste.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Nov 11, 2025
AnCan thanks the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, 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: Can abiraterone impact your hearing?
Topics Discussed
Newbie’s uro pushes surgery against the odds; abi Gent back on prednisone – no harm, no foul; bladder clots resolved and catheter removed – but watch the heavy lifting; hyperbaric treatment for RT cystitis; treatment plan is durable; more bladder clots during Pluvicto; PSA 435 to 0.12 after 6x chemo; alcohol + LHRH = liver problems; moving apalutamide from a.m. to p.pm. helps; could abi effect hearing?; triplet Gent seeks solid 2nd opinion; for how long can you take bone strengtheners?; small porotid tumor requires action; Scott Adams tries bladder cancer drug with Pluvicto
Chat
Keith sent: 4:10 PM
I’m new to this group and accessing: I’m Keith in Oregon–I can’t get my camera to work, yet. I can hear all you fine, thankyou. I will work on getting it so you can hear me and see me. thank you!
AnCan thanks the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, 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: Unpredictable & outstanding response to surgery for G4+5 man
Topics Discussed
Is Metastasis Directed Therapy right for me; G4+5 Gent has unpredictable & outstanding response to surgery; did his MSKCC GU MO really clock this Gent was taking abi w/o prednisone?; good response to ‘triplet’ post Pluvicto, but for how long then what next… alpha RLT?; is G4+5 hi-volume denovo Mx man ready for IHT after 18 months? what about debulking?; CARIS has good webinar on CHIP mutations; muscle pain from ADT; don’t just call, put it in your patient portal; Dr. Jack doesn’t favor ibuprofen
Chat Log
Bob McHugh sent: 3:37 PM
Curious to know who did the surgery … What about side effects, if I may ask? Please remind RD that there is no government work right nowL LOL
Steve – My respone is a bit complicated. If you’re interested, send me you email.
Julian – Houston sent: 4:00 PM
Need to leave early. Thanks again!!!
Steven T sent: 4:27 PM
Thanks everyone. Have a good night.
AnCan–John A sent: 4:36 PM
i have always been uncomfortable that RT wasn’t part of his treatment plan. I think he’s undertreated, though psa is .02. so I’m not happy about deintensifying
J. Ward sent: 4:42 PM
Need to leave early. Thanks, all!!
dan- no time needed tonight sent: 4:48 PM
Thanks all… another good session
AnCan – rick sent: 4:54 PM
Theraworx
Bruce Schrimpf sent: 5:03 PM
I will offer a prayer for Mr. Mason.
5Nice being with you all and thanks for the good imformation!
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 18, 2025
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
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
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/
Editor’s Pick: Confirm PSMA signs in esophagus are prostate cancer before starting hormone therapy (rd)
Topics Discussed
Active and healthy 85 yr old asks how to best manage recurrence; bladder neck involvement from surgery may complicate matters; Pluvicto in store fo foamy gland Gent; addressing neuropathy; waiting on test results to confirm small cell trial; anxiety is crippling; blood thinners may explain RT cystitis/proctitis; starting salvage RT; addressing osteoporosis during advanced treatment; RB mutation may invoke adtional chemo agent; check out PSMA signs in esophagus before starting HT for PrCa; following recurrence up to PSA of 1.0; holding a coupl eof Pluvicto sessions in reserve??
Thanks gents for another excellent group mtg… I have to check-out now.
Alain sent: 6:57 PM
I have to go guys, many thanks for a great meeting, I can present my update next time.
Gary V Portland, Oregon sent: 6:59 PM
Jeff thanks for all the suggestions these last 2+years .. You gave me the strength to fight to get Nubeqa and Orgovyx and you tied me up with AnCan.. you made a difference
Ed L sent: 7:11 PM
Thanks for the advice. Good night all time for bed.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 21, 2025
MARKET RESEARCH STUDIES
AnCan has two new market research opportunities for you and your Care Partners with Pinpoint Patient Recruiting to earn up to $425.
Study #1
• Non-white Men &/or Carers – both can apply but with separate applications • Must be US based • Men confirmed hormone sensitive with or without mets OR castrate resistant • Active treatment is NOT required – you can be on a drug holiday
Study #2 – recruiting for survey in September • Men &/or Carers – both can apply but with separate applications • Must be US based • Men confirmed hormone sensitive with or without mets OR castrate resistant • Active treatment is NOT required – you can be on a drug holiday
$125 for a 60-minute virtual online interview with another $50 for providing evidence from your medical records of your confirmed diagnosis – screenshots suffice. If you opt in for a second interview, another $125 is available. Your Carers also have the opportunity to earn $125 for a 60 minute interview.
Please visit pinpointpatientrecruiting.com/pc-interview-ancan2025 or contact Brittany Weathersbee at brittany@pinpointpatientrecruiting.com. If you’ve already been contacted directly by Pinpoint from a prior study and accepted, please let us know at rd@ancan.org.
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
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
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 https://ancan.org/veterans/
Editor’s Pick: Pain meds should not be a pain! (rd)
Topics Discussed
Fatigue persists despite testosterone increasing and normal cortisol levels; advanced cancer spreads including to liver; using pain meds; identify the cancer before talking treatment and trials; Chuck Ryan gets NJ gold star for holding Gent off treatment; heart issues indicate apalutamide and more cardio follow up; 2x Pluvicto drives PSA down from 0.6 to 0.2 – consider holding treatments back; recurrence 3 mos post salvage RT requires GU MO’s opinion; Newwbie – triplet therapy brings PSA from 4900 to 6 – but GU MO required as QB.
Chia seeds are a complete protein Complete proteins are those that contain all nine essential amino acids. Essential amino acids are those that our bodies cannot create and must be obtained through food. These include histidine, isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine.
John A sent: 5:36 PM
nuts and seeds also for protein
gary peters sent: 5:55 PM
The FDA approved (1/25) a new non-opioid pain medication called suzetrigine, marketed as Journavx. This medication is designed to treat moderate-to-severe acute pain in adults by targeting pain signals in the peripheral nervous system, rather than acting on the brain like opioids.
kang sent: 5:55 PM
Lorigerlimab MacroGenics
Len Sierra sent: 5:57 PM
Lorigerlimab is an investigational, bispecific antibody targeting PD-1 and CTLA-4, designed to enhance immune checkpoint blockade in the tumor microenvironment.
Ben Nathanson sent: 5:59 PM
Gary, it’s approved for specific pain that may not be applicable to cancer patients: short-term moderate-to-severe acute pain (trauma or post-op) only —not chronic pain. But it’s an interesting new approach that’s likely to get plenty of company. The benefit is that you get pain relief plus alertness.
Mike sent: 6:02 PM
psa for years between 6-10, prostate biopsy 1.5 years ago negative, just received ExoDx urine test result =53. Any suggestions? Urologist recommends 25 core biopsy. Thanks
