Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 23, 2025
UPCOMING PRESENTATION
Dr. JONATHAN EPSTEIN IS BACK for an AnCan webinar on Tue, Sep 30 at 8.pm Eastern!
“Interpreting Prostate Needle Biopsies in Today’s World”
Bx explained from early AS to advanced Pr Ca inc. AI – with lotsa time for Q&A.
Register at https://ow.ly/PpoX50WVsJ4
NEW monthy GAY & BISEXUAL MEN’S Prostate Cancer Group starting Tue, Oct 14.
Sign up at https://ancan.org/contact-us/
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: Hiding in plain sight, a new tumor docs failed to mention. (bn)
Topics Discussed
Upcoming AnCan group; newly diagnosed with a spot on his spine — consider zapping both prostate and tumor; what’s happening with Medicare and telehealth?; a Pluvicto update after his first treatment; after focal therapy, docs kept quiet about a new tumor, and it may now be escaping the prostate; lots of metastasis, PSA in the thousands, but he got doublet therapy, not triplet; a 0.04 PSA rise isn’t worrisome; he’s offered Clomid to raise testosterone (why not just take testosterone?); massive sweating spells that far exceed hot flashes; prior mastectomy complicates planned radiation for sore nipples; thanks to John Maxwell for giving AnCan the proceeds of his poetry collection during September; great experience from Dr. Guercio in Rochester; ready to shift his care to a top NYC hospital.
Chat Log
Ben Nathanson · 6:16 PM
NY Times: In Chicago, a New Approach to Gay and Bisexual Men With Prostate Cancer https://www.nytimes.com/2021/12/07/health/prostate-gay-sex-cancer.html?unlocked_article_code=1.oE8.Ij-J.lRa7OMYAXY5h&smid=url-share Allen Edel: Gay men should never have a prostatectomy https://www.prostatecancer.news/2021/
AnCan – rick · 6:29 PM
Kevin courtney is the GU med onc
AnCan – rick · 6:29 PM
at UTSW that I ws truying to recall.
Alfredo in Houston · 6:31 PM
https://profiles.utsouthwestern.edu/profile/131906/kevin-courtney.html
Alfredo in Houston · 6:32 PM
https://www.houstonmethodist.org/doctor/eleni-efstathiou/
AnCan – rick · 6:39 PM
PROMISE Trial https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
Alfredo in Houston · 7:03 PM
https://www.uofmhealth.org/profile/2980/todd-matthew-morgan-md
AnCan – rick · 7:27 PM
Interpreting Prostate Needle Biopsies in Today’s World” with global expert Dr.Jonathan Epstein , Advanced Uropathology Register at https://ow.ly/PpoX50WVsJ4 – free.
Jim Marshall, Veteran, Alexandria, VA · 7:28 PM
https://ancan.us14.list-manage.com/track/click?u=ece3f3da90f82cb974b407396&id=9b15081950&e=7e455a27bb For Veterans Speaking Freely. Jim
Don Rogers · 8:08 PM
anastrozole 1 mg twice a week
AnCan – rick · 8:23 PM
casodex
Frank Ciambra · 8:35 PM
i just did my 7th pluvicto last wednesday i am recovering well and ave atrip planned to see my son and his family this weekend and will be jammig music tommorow night
Frank Ciambra · 8:38 PM
im going to see my son who recently retirrd from the teams in va beach mygrandsons have bb tornaments this weekend
AnCan – rick · 8:42 PM
Dr. McHugh, Dr. Rathkopf, Dr. Autio
AnCan – rick · 8:44 PM
geenitourinary (GU) medical oncologist
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 9, 2025
UPCOMING PRESENTATIONS
MRI 2nd Opinions….. ProstateID solves the challenge It’s challenging. to get MRI 2nd Opinions… ProstateID solves it. Affordable & AI-validated Wed. Sep 17th at 6.30 pm Eastern in the AnCan Barniskis Room https://www.gotomeet.me/AnswerCancer Developer, Randall Jones, PhD explains the technology and its uses.
Dr. JONATHAN EPSTEIN IS BACK for an AnCan webinar on Tue, Sep 30 at 8.pm Eastern! “Interpreting Prostate Needle Biopsies in Today’s World” He’ll discuss Bx from early AS to advanced Pr Ca inc. AI – with plenty of time for Q&A. Register at https://ow.ly/PpoX50WVsJ4
NEW monthy GAY & BISEXUAL MEN’S Prostate Cancer Group starting Tue, Oct 14. Sign up at https://ancan.org/contact-us/
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
Editor’s Pick: Ice hockey Newbie wants to consider intermittent hormone therapyrd)
Topics Discussed
Does an AUS interfree with RT?; hockey player want to consider IHT; urinary issues post RT; anti-morphing strategies; PSMA helps find possible salivary tumor; constipation pain from opiates; blood transfusion helps; osteopenia may warrant Prolia; is sleep apnea the cause of cachexic symptoms?; is cycling OK during RT?; mono Nubeqa working well; B12 and magnesiun for restless leg; John Maxwell on Solo Arts Heal;
Chat Log
John Maxwell – Chicago sent: 3:11 PM
Last week I was blessed to be interviewed by Hannah on Solo Healing Arts where I discussed my prostate cancer journey and lifelong journey as a poet and my book “Hammering Nails” Find the links to the Interview and to buy my book above. All net proceeds from the sale of my book during September 2025 will be donated to ANCAN.
I’m at the start of my ADT journey. I have been on Orgovyx for 6 months. I plan to stay on for the full 24 months. When I do stop taking Orgovyx how quickly does my testosterone return?
John M — Guys on Orgovyx will recover T levels faster than those on Lupron/Eligard, etc. However, everyone is different and how fast your T levels recover will depend on your baseline T, how old you are, and how long you’ve been on Orgovyx.
AnCan – rick sent: 4:01 PM
John M …. the rule of thumb is twice the length of time you were on. It depends on age…. With orgo, it could well be shorter. It was shorter for me on Lupron – 9 mo. Should say the rule of thumb used to be…..
Paul D in Little Rock sent: 4:40 PM
Thanks everyone I have another meeting and have to sign off. See you again soon. I was able to sign up for the Promise tests, which are on the way. I appreciate the lead to that resource. Paul
sorry I had trouble logging in… another good mtg; but I have to leave as bldg is closing
Jeff Marchi – San Francisco sent: 4:59 PM
Low cortisol could cause fatigue
John M – Chicago sent: 5:09 PM
Link to my Solo Arts Heal ANCAN Podcast and biik purchase are above. Net proceeds from all book sales in September will be donated to ANCAN
AnCan – rick sent: 5:10 PM
CoQ10 for cramps Theraworx for leg cramps
AnCan Bill sent: 5:16 PM
I had a Karate Sensei that swore by mustard for cramp relief. Like the kind of mustard packets you get at a fast food joint. He recommended sucking one down when students got a cramp. He kept them in the Dojo. I don’t know if it was just the power of suggestion but it seemed to work.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 1, 2025
UPCOMING PRESENTATION MRI 2nd Opinions….. ProstateID solves the challenge
Getting 2nd opinions is critical. It’s easy to find a medical 2nd opinion, and you can get your pathology reread by the best! But MRIs – that’s been challenging. Now there’s an affordable AI-validated option that’s proven very reliable* – ProstateID Join us on Wed. Sep 17th at 6.30 pm Eastern in the AnCan Barniskis Roomhttps://www.gotomeet.me/AnswerCancer Founder and Developer, Randall Jones, PhD explains the technology and its uses. Hosted by AnCan Advisory Board Member and prostate cancer peer, Cdr. Mike Crosby *Sensitiviy and Specificity in the mid-90% range
… and hold Tuesday, Sept 30th 8 pm Eastern for Dr. Jonathan Epstein. Title TBD and webinar link to follow.
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
Editor’s Pick: recurring themes – RT cystitis, HT fatigue and a young man with hi-volume 4+5 (rd)
Apologies for the profane expletive – it was aimed at T-mobile and Verizon who kept kicking me off the meeting.
Topics Discussed
Young man in Germany Dx with high volume 4+5; what’s the story on ‘Azo’ to control serious bladder pain?; oligo-Mx man faces upcoming SBRT on T2 and lymph nodes; will CT worsen radiation cystitis?; adaptive hormone therapy is explained and considered; fatigue resuming daro after IHT; gynecomastia after breast reduction; fatigue from orgovyx
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 26, 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/
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: Bright hopes for estradiol patches to reduce ADT effects, from Dr. Paul. (bn)
Topics Discussed
A professor’s worry about hot flashes while teaching prompts many familiar suggestions — plus an unexpected one: an illuminating discussion of estradiol by Dr. Paul, who’s serious about seeing it get wider use; Marc V., starting chemo, shares a “week that’s been one of the most challenging in my life”; PSA relapse after April’s Pluvicto leaves him wondering — more Pluvicto? xaluritamig trial? alpha trial?; wrestllng with Orgovyx side effects — on top of severe back pain, sleep apnea, and multiple sclerosis — and he’s seeing the wrong cancer specialist; new research of muscle loss in cancer; muscle loss hits a patient in his 80s harder than one in his 60s; why get two DNA tests — germline and somatic — for his RB1 gene?; he’s wondering what to expect when starting ADT — and while experiences vary, nobody here is a fan.
Chat Log
Jon McPhee Toronto · 6:26 PM
What about estrogen patches?
AnCan – rick · 6:26 PM
soy isoflavones
John A · 6:27 PM
Jon, yes that’s partly what I meant by if simple measures don’t work consider hormone treatment.
John Maxwell · 6:29 PM
HOT FLASHES: I am having good success with the Embr Wave 2 wrist band reducing, not eliminating my hot flashes, especially at night. I am very happy with it.
Alain · 6:30 PM
Thanks John!
Frank Ciambra · 6:52 PM
Xalurtamig
Len Sierra · 7:15 PM
www.mskcc.org
Charles James Ryan, MD – MSK Genitourinary Medical Oncologist
480 Red Hill Rd, Middletown, NJ 07748
Len Sierra · 7:18 PM
Phone for Ryan: Call 646-392-1746
AnCan – rick · 7:23 PM
Activin-A , Think the researcher may be David Hyman at MSKCC
AnCan – rick · 7:24 PM
first-in-human phase I study of the Activin A inhibitor, STM 434, in various solid tumors.
Jon McPhee Toronto · 7:48 PM
Question: I am going to get a shot of Zoladex (goserelin). Apparently popular in Canada, but I never see it mentioned in US. Any idea why?
What ASCO is to cancer doctors, AACR (American Association for Cancer Research) is to cancer researchers. When AACR held its annual convention in April, a small number of patient advocates were invited to participate as part of AACR’s Scientist-Survivor Program.
Representing AnCan, I was one of 42 advocates chosen from more than 200 applicants. The AACR has long recognized the need for patient involvement in cancer research — the SSP program began 28 years ago.
It’s a convention within a convention. Every day we heard from lucid and charismatic speakers, some of them presenting slides that they would later present at the convention. Talks included
State of the Art of Precision Oncology – Edward Kim, a chief physician at City of Hope
Very Early Cancer Detection Assays – Caris Life Sciences president David Spetzler
Drug Discovery and Development – Paul Workman, of the Institute of Cancer Research in London
Evolution of Resistance – Carlo Maley of Arizona State University
Each talk was inspiring, but my favorite was Workman’s. A legendary figure in cancer drug discovery, he argued that by probing deeply into how a drug works before clinical trials, researchers can identify in advance which patients are most likely to benefit. Many drugs written off as failures actually work remarkably well for a small subset of patients. Yet those patients will never get the treatment, because the drug was judged on its lack of effect in the wider population.
We were split into 6-person groups, each assigned a mentor scientist. In my group, that was Jeremy Mason, a young computational biologist at UCLA.
Advocates were required to present a poster at one of the general poster sessions. Mine showed AnCan’s unique benefit to cancer patients and others with chronic illness. Anchoring the poster was a quote from Dr. Paul Schellhammer, AnCan-er and past president of the American Urological Association:
I will comment that the level of diligence, expertise, and discussion rises to the level of an academic GU cancer conference / tumor board.
Most overwhelming for me was the passion and hard work of my fellow advocates, whose efforts included raising millions of dollars for research funding, helping create a research institute for a rare cancer, harnessing programming skills to codevelop AI with a cancer researcher, and initating an early-detection campaign for gay men at risk of anal cancer.
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.
