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: Two men recur from low levels, one younger, while a much younger man is denovo metastatic.
Topics Discussed
Fit 87 yr old seeks more treatment ideas; younger man recurs post-LDR brachy for 3+4; – cud be a NCI candidate; 3+3 comes back after 5 yrs as 4+5; PSA stays high but stable after 9 months of doublet – change docs!; Clomid causing heart issues; Long Game candidate gives update; Axumin goes AWOL; another very young Newbie with multiple 5+5 cores needs a GU MO; Gent switches care at MSKCC
Good luck John B. I must ring off for tonight, best wishes to one and all! — Alfredo
Morgan Brooke sent: 4:36 PM
Okay. I thought I was here in the first 10 minutes. I’ll be sure to join earlier next week. Thank you
Jim Marshall, Vet Support Grp. Moderator sent: 4:36 PM
Jack. – welcome to the CLUB!!!!!
Jeff Marchi – San Francisco sent: 4:38 PM
morgan too many new people today
Morgan Brooke sent: 4:38 PM
Understood
Jeff Marchi – San Francisco sent: 4:40 PM
get here 10 minutes before the meeting
Danny sent: 4:50 PM
you looking for folks to speak?
Danny sent: 4:53 PM
Jun 2022 PSA=4 (no actions taken) Nov 2025 PSA=13 Nov 2025 MRI PiRADs=5 Nov 2025 Biopsy Gleason 10 (5+5) Nov 2025 PSMA PET Local pelvic mets Nov 2025 No Genetic germline or somatic adaptations to treat Dec 2025 Started ADT (Nubeqa 1200mg + Orgovyx 120mg) daily Jan 2026 Blood Panel (PSA=0.45 T=11)
Urology: R. Jeffrey Karnes, MD Onc: Elisabeth Heath, MD RadOnc: Anne Rajkumar, MD
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: AnCan’r considering AMG509 STEAP T-Cell engager; does IDC-P make you high risk?
Topics Discussed
Newbie needs GU MO and doublet; ADT and heart issues; BRCA2 germline Gent progresses after P; no evidence for doublet; long-timer needs to switch treatment; moving from Pluvicto to xaluritamig/ AMG509/ STEAP trial; supplemental E2 discussed by peer – insurance issues, gui9dance on E2 blood levels; IDC-P man on RT asks how much HT; with BCR, doubling time may be more significant guide to BCR than actual PSA level
Chat
Jim Marshall, Vet Support Grp. Moderator sent: 6:33 PM
Joining from the air. No mic available. I just blogged the Estradiol conversation.
AnCan – Rick sent: 7:36 PM
Kishan would say 6 months per his recent meta study
Show Tran the Kishan paper
Jeff Marchi – San Francisco sent: 7:37 PM
has he had genetic testing? it can frequently be associated with genetic issues
AnCan – Rick sent: 7:37 PM
12 months if you’re more aggressive.
Is Spratt the final author
Steve Schuler (Seattle) sent: 7:40 PM
I just wrapped it up a month ago. Now I’m on nothing, no ADT either. I was on Lupron for 2 years, abiraterone also for 2 years, but started a year after the Lupron started (there’s a story there, but later), and then on Estradiol for most of the time I was on abiraterone. But now on nothing. For most of the E2, it was .05mg (50 microgram) patches 2 per week. So a box of 8 lasts you 4 weeks. With GoodRX, those were $13/box
A word about the dose level of the patches: that’s the estimated dose delivery of a patch per day. The amount of E2 in the patch itself is higher, something like 600 microgram is what I remember, but then it releases slowly at an ESTIMATED rate of 50. But that release rate is highly dependent on the amount of fat under the skin, etc. So your milage will vary
Mark N sent: 7:44 PM
Thanks for the feed back!
dan-s alexandria sent: 7:48 PM
thanks Jimmy
Pierre D., Olean, NY sent: 7:52 PM
Thank you all for your input.
Jeffrey G sent: 7:53 PM
We were in the 90s today. Ugh, warmest AZ winter i’ve ever been in. Still, gotta be grateful for warm weather and for a psa of 0.02…Adios
Learn from AnCan’s Emperors of Estradiol… video chat and discussion
AnCan would bet no other prostate cancer support group has the experience and knowledge around using estradiol.
For those unfamiliar, estradiol is a female hormone that is found in men in small part; just like women carry a low level of testosterone (T). In large levels, estradiol (E2) can suppress T and effectively do the work of androgen deprivation, without many of the side effects of ADT. It is cheap and effective and has been around many years. So cheap that many pharmaceutical companies are concerned it can replace a primary, far more profitable ADT agent… like Lupron, Eligard, Firmagon or Orgovyx. Robert Reich, former Secretary of Labor, makes the argument better than I can.
It offers a much higher Quality of Life, and the recent PATCH trial has shown its efficacy and non inferiority. The major disadvantages are 1) getting a doctor to prescribe it since it is not FDA approved and must be prescribed off label. And 2) gynecomastia (breast enlargement) that can be painful and socially embarrassing, although it has remedies.
Two of the most outspoken and well recognized advocates for E2 are peer users associated with AnCan. Dr. Paul Schellhammer, a former President of the American Urological Association, is on our Brains Trust. Dr. Richard Wassersug is on AnCan’s Advisory Board. Both have used E2 for more than 20 years, while AnCan member Al Latimer outlasts them both – but not together.
Listen to this outstanding discussion… yet again AnCan’s information is PRICELESS!
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: Unrelated Newbies from either Coast have almost identical issues.
Topics Discussed
Our two Newbies are ‘twins’ – both denovo Mx on the cusp between high and low volume mets, and both with less experienced GU med oncs; 4x chemo down doing well with a full head of hair!; finding an exercise program; contacting NCI; Orgovyx trumps a 6-mo. depot shot; early radiation cystitis; finding Dr. E; with heart history, Orgovyx or Lupron?; discussing NCI trial & adaptive therapy
Chat
AnCan – Rick sent: 5:55 PM
Technical assistance 877 582 7011
AnCan – Rick sent: 5:56 PM
Playing the Long Game https://www.youtube.com/watch?v=v4jzyAeOtNI
Great Meeting again gang! I’m out – time to walk the dog.
michael perillo sent: 7:21 PM
Hi all, need to leave the meeting. Obviously have quite a bit of work to do re possible change to orggovyx, possible use of radiation, chemo or other triplet approach, possible somatic testing as well as second opinion. Will follw up on future meetings. Thanks Michael
AnCan–John A sent: 7:21 PM
Ok Michael, welcome
Eric James; Tyler TX sent: 7:25 PM
The weight you use is relative to your strength. Weight is usually selected based on how many reps you are to do.
Steve Schuler (Go Seahawks!) sent: 7:31 PM
Did you have doubling time data before going on the ADT?
The reason I ask is that there will be a lag after going off ADT before the DT data will be reliable
Eric James; Tyler TX sent: 7:33 PM
The NCI doc presentation has some overlap with Adaptive Therapy
Steve Schuler (Go Seahawks!) sent: 7:38 PM
Orgovyx will restore your T faster once you get off it
RJ Smith (Seattle) sent: 7:48 PM
ChatGPT, etc.) is not a GU Med Onc. Not even a urologist or MD of any kind.
Steve Schuler (Go Seahawks!) sent: 7:56 PM
gotta drop, love to hear more discussion of the NCI YT video at some point. If that happens after I drop, I’ll view the recording of this session later
Richard B, Silver Spring, MD sent: 8:02 PM
I need to step away due to an early start tomorrow morning. Nothing new to report but more assessments this week. So possible report next week. ‘Appreciate all the conversations. Good night.
dan-s alexandria sent: 8:03 PM
gotta go, gents…. good conversations.
Bruce Schrimpf sent: 8:11 PM
As always it was very informative. Thanks for being “there” for those of us struggling through!
Hi-Risk/Recurrent/Advanced PrCa Video Chat, 1/19/26
AnCan is closing out its Annual Fundraising Campaign. If you haven’t donated yet, consider the priceless value we bring . Please donate – especially if you watch our recordings and are not on our Mailchimp list. https://ancan.org/donate/
AnCan thanks the following sponsors for making this recording possible: 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: After 15 years, Prostate cancer recurs for one Gent; and the 2nd time, 13 years later, for another.
Topics Discussed
Newbie needs to switch to a GU MO; PrCa metastasizes after 15 yrs; singlet to doublet during RT; Pluvicto failing after 10x sessions – STEAP1 xaluritamig (AMG509 ) next but heads up!; early signs of 2nd recurrence; Eligard vs Firmagon (agonist vs antagonist LHRH); first GU med onc appointment coming up; managing hot flashes; Oxybutynin again; doc can’t get approval right so switches drug; PSMA shows Nodes may not need RT; abiraterone dosing;
Chat
Rick Davis sent: 6:10 PM
PLEASE – no mention of the Championship Game tonight. Some peeps are recording it.
Need to leave – pass my bedtime. Catch you all next week!
Bob Schwartz U.S.N. Venice, FL. sent: 7:03 PM
Another GOOD Mtg., have to go, see everyone next week.
Rick Davis sent: 7:26 PM
Xaluritamig (AMG 509) is a novel bispecific T-cell engager (TCE) immunotherapy
Bob Y — Los Angeles sent: 7:27 PM
Appreciate everyone. I, too, have to go. See you next week.
Len sent: 7:30 PM
STEAP1 (Six-Transmembrane Epithelial Antigen of the Prostate 1) is detected in prostate cancer (PCa) primarily through tissue analysis (immunohistochemistry), showing overexpression in malignant cells, and via liquid biopsies (extracellular vesicles in plasma), using methods like nanoscale flow cytometry,
AnCan–John A sent: 7:31 PM
thanks Len
Frank Ciambra sent: 7:32 PM
thank you
Rick Davis sent: 7:32 PM
Doubling time very unreliable at such low levels, Neil
dan-s sent: 7:40 PM
I also have to scoot… thanks all.
Barbara and Joe sent: 7:54 PM
are you saying lupron?
Jim Marshall, Veteran, Alexandria, VA sent: 7:55 PM
Lupron & Eligard are the exact same drug. Jim
Rick Davis sent: 7:56 PM
Are you asking about the Depot shots?
Rick Davis sent: 7:57 PM
Oxybutynin…. good for hot flashes if you are on abi
Steve L sent: 7:57 PM
Must leave at 7, Best to all.
Alain sent: 7:58 PM
See you next time guys!
Barbara and Joe sent: 7:58 PM
I was asking about a two tier therapy
Steve Lsent: 7:59 PM
no , thank you.
Alfredo in Houston, TX sent: 8:00 PM
I must disconnect shortly. Thanks to everyone; I learn something new from every session.
Rick Davis sent: 8:01 PM
ADT + ARSI = doublet. ADT can be one of several drugs.
Thomas Matica sent: 8:02 PM
Signing out. Thanks to everyone. Peace.
Len sent: 8:02 PM
Dan – Trade name for oxybutynin is Ditropan.
Barry Blomquist sent: 8:06 PM
Thanks guys!
Richard B, Silver Spring, MD sent: 8:09 PM
As much as I would like to remain I need to bow out for the evening. I can save my question until next session. Always appreciate the information on these meeting. Good night!
