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: Do you get PSMA PET after doublet then how often?; and, how to say Guancial!
Topics Discussed
Younger Newbie graduates to our Group post RRP; treated after 20 yrs of AS.. but in the wrong group; finding the best trial for Frank; Bx cannot confirm PrCa; spot RT may be the ticket; all sable during IHT; RT to commence this month; what’s in Dr. Guancial’s name?; PSMA scans pos doublet are negative; when and how often to PSM scan; GU MO denies Pluvicto post triplet though scans light up; Gent decides to start TRT; brief discussion of HLD-0915
Chat
Bob Schwartz, USN, Venice, FL. sent: 3:17 PM
I can agree as to the hospital sling I received last time, for my other shoulder surgery. Which was why I was glad to hear your recommendation of a better one, prior to my upcoming surgery. Wish I didn’t need the surgery, but old age & past injuries, are catching up with me.
Steve L…. Hold tight and we’ll have the mugs available in our shop before long. You can order and take care of biz.
Alfredo in Wimberley, TX sent: 4:31 PM
Family calling – I must drop off now. Best wishes to all!
Steve Schuler (Seattle) sent: 4:31 PM
I wondered why I hadn’t heard anything… Answer: beurocrac
(can’t spell it though… :^(
Len Sierra sent: 4:36 PM
JAMA Oncol. 2019, 5, 856-863. In the first prospective trial of 68Ga-PSMA-11 PET/CT for BRPC, which included 635 patients, detection rates were 38% for PSA levels of < 1.0 ng/mL (n = 79), 84% for 1.0 to 2.0 (n=89), 86% for 2.0 to 5.0 (n=158), and 94% for >5.0. (BRPC = Bio-Recurrent PC)
Steve Schuler (Seattle) sent: 4:41 PM
a meta-observation is that most therapies that are initially only for end stage move earlier in treatment where their use there improves things. improves at least in the CSS sense, not necessarily in the OS sense
Len Sierrasent: 4:46 PM
New Terminology: • Androgen Pathway Modulator Sensitive: Tumors that continue to respond to or are controlled by androgen pathway suppression/blockade. • Androgen Pathway Modulator Resistant: Tumors that progress despite treatment targeting the androgen pathway
Steve – Seattle sent: 4:49 PM
My Calendar has the Ancan Seattle dinner scheduled for Sunday but I don’t have any details.
rick davis sent: 4:51 PM
Stand by as I said.
Steve Schuler (Seattle) sent: 4:53 PM
I’ve got to drop, but I will “stand by” to hear about Sunday. I will be at the conference Saturday, probably at Fred Hutch which I assume must be a video screen but in the FH building… That way I get a free sandwich I think :^)
RJ Smith (Seattle) sent: 4:54 PM
Same here–see you there Steve!
rick davis sent: 4:54 PM
: NCT06800313 HLD0915
George Kander
sent: 4:56 PM
Family calls – have to go. Thanks everyone and hopefully see you at dinner Friday in Portland – Chhers
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Oct. 5, 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. Coming soon – we’re working on it!!
NEW AnCan HEART Group for all things cardio. Sign up for Reminder at https://ancan.org/contact-us/. Next meeting Oct 7 in AnCan Schmier Room. For ProsCard mailing list, please write to dr.john@ancan.org to ad 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: wot a choice this week … trials – ANDROMEDA, VIR5500 & Veozah; everyone wants scarce E2; and switch foreign drugs by 10/22!
Topics Discussed
Newbie Calgarian supported by 1.5 AnCan Calgarians; 2nd recurrence raises questions for Newbie; E2 scarcity; switch foreign online pharmacy by Oct. 22; ANDROMEDA triallist encourages others to sign up – inc. Newbies; borderline anemia delays salvage RT – but so does switching insurance; Veozah/fezolinetant trial open in Greater Boston; T and PSA rise during IHT – ANDROMEDA??; ARSI switch may be in order; does rationing Pluvicto sessions do the trick?; VIR5500 trialist experiences fatigue; Frank recovering and may be fit enough to consider a trial; GU MO orders confirmatory bone Bx before starting doublet; E2 preferred if HT resumes – or ANDROMEDA?; ; started Pluvicto – waiting on bone Bx result; ask for the PSMA SUV
Chat
Bruce Schrimpf sent: 5:12 PM
Army: Do not volunteer unless you can type. There is a story there! BDS
Danny Lankford (Minnesota) sent: 5:52 PM
I just started the e2 patch after months of wearing my GU oncologist down with evidence . 😉
john sent: 5:58 PM
At DEXA T=-1.3 you have osteopenia, and are at risk for further bone loss due to hormone therapy. Suggest Calcium 500mg twice daily (w/food if carbonate) and Vitamin D perhaps 800 IU/d. Discuss w/your PCP for a decision and doses. Weight bearing exercises. Repeat DEXA every 2y or according to your doctors. Consider E2 estradiol rather than an LHRH agonist; let’s ask Dr Paul in the room. I’m not sure at what point an endocrinologist is needed, but a bone strengthener needed because you also have a bone met.
I have tried to register for virtual prostate cancer conference at OHSU on October 17. I am provided a registration ID code, but not provided a link to access conference. What am I missing?
rick davis sent: 6:12 PM
Dr. Bill – I expect they’ll send a link closer to the conference
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.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 11, 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: Toss up between the silver lining in HT treatment, and slow T recovery.
Topics Discussed
Originally AS Newbie graduates to T3 maybe T4 treatment; mono daro working but dental issues arise; Alaska doc needs a solid GU QB; pros and cons of tolerating hormone therapy; post-RP PSA still going down; … and post RT/HT PSA declining for our Poet; whole body MRI vs PSMA scans for monitoring; still getting the runaround for GU MO at Sibley – but RO set; follow up PSMA now negative for younger Gent; leg pain and fatigue likely not from HT drugs; MRI on T10 prior to spot RT; heavy brain fog suggests switching ARSI but Pluvicto follows; T recovery slow but after 7 months – don’t panic
Chat
Steve Schuler (Seattle) sent: 3:30 PM
My Rad Onc at Fred Hutch was Jonathan Chen, and I felt like he provided competent care. My oncologist was Evan Yu; he’s been bumped up, and now it is Rajitha Sunkara. I like her.
Jim Ekrut, Ft. Worth TX sent: 3:33 PM
I recommend Biologics by McKesson or Onco360 as specialty pharmacies with access to financial aid. I received a grant from PAN through Biologics that covered all costs for one year of Orgovyx.
Steve L sent: 3:36 PM
UW Northwest is the location for Proton Therapy. They may also do other radiation treatment.
Steve Schuler (Seattle) sent: 3:45 PM
I talked to my oncologist (Rajitha Sunkara). and referenced the PATCH study.
Jim Marshall, Vet Sup Grp. Moderator sent: 3:58 PM
CASODEX = Bicalutamide Jim
Jim Ekrut, Ft. Worth TX sent: 4:12 PM
I finished eighteen months of Orgovyx June 19. It did exactly as intended alongside radiation, with my PSA <.01 and testosterone <10 for a full year. My PSA was measured Friday 8/7 , almost seven weeks post-treatment, still <.01 but testosterone has risen to 48. That said, I experienced every side effect listed on the Orgovyx website and more.
Sorry to leave, but I have another meeting commitment. Thanks for the support. All the best!
Jeffrey G sent: 4:21 PM
How old is he?
AnCan–John A sent: 4:21 PM
64
Dave Lied – Pittsburgh sent: 4:23 PM
Thank you all for the informative discussion tonight. Sorry to leave early.
Jim Marshall, Vet Sup Grp. Moderator sent: 5:12 PM
Was on ADT for 5 years, did not budge for 3+ years. Then and now less than 50, Jim
Steve Schuler (Seattle) sent: 5:15 PM
thank you for the feedback, exactly what I wanted!
Barry Blomquist sent: 5:15 PM
Thanks guys good information – next week.
Steve Schuler (Seattle) sent: 5:16 PM
I had been on Zometa when I had teeth removed, and my oral surgeon gave me Pentoxifylline 400mg + vitamin E 450mg for 60 days, which is apparently a protocol that increases blood flow (perfusion ?) and reduces risk of jaw necrosis
Jim Marshall, Vet Sup Grp. Moderator sent: 5:18 PM
When Abi caused Liver issues, I got dropped from 4 to 3 pills a day and good for the next 5years.
Steve Schuler (Seattle) sent: 5:19 PM
EMBR worked for me moderately well, but I dropped it when I started E2, which was a great help to me
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.
