Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 7, 2025
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 7, 2025
RECORD SETTER – 58 GENTS
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 Picks: Small cell morphing comes up twice in record setting group.(rd)
Topics Discussed
Hawaiian denovo Nx man finds Mack Roach; is the cancer morphing into small cell?; meta-study on early chemo not relevant if high PSA on Dx ; nevermind repeat PSMA – how about a PSA test?; another post-Pluvicto Gent whose cancer appears to morph; intraductal man is offered focal therapy – hello??; treatment success; UCSD team thinks suspicious local/distant Mx bogus – proceeds with simple RT; recurrence in Canada always poses treatment problems; zoledronic acid (Zometa) or denosumab (Xgeva) derivatives for osteoporosis?; does HT with salvage RT require abi?; Kwon’s doublet upgraded to triplet; what’s wrong with SoC options for man offered trials; another Mayo man needs GU MO Heath before proceeding.
Jeff Marchi – San Francisco sent: 6:29 PM Neuroendocrine trials From: MSKCC TargetDonc onclive ascopubs There are several ongoing clinical studies targeting DLL3 in neuroendocrine prostate cancer (NEPC): • Memorial Sloan Kettering Cancer Center (MSK) is opening a clinical trial testing a radioactive ligand that targets DLL3 in people with metastatic NEPC. Patients will first be screened for DLL3 expression and, if eligible, will receive the targeted therapy. • The SKYBRIDGE trial (NCT05652686) is a phase 1/2 study evaluating peluntamig (PT217), which targets DLL3 and CD47, in patients with DLL3-expressing neuroendocrine carcinomas, including NEPC. • A phase 1b study of tarlatamab, a DLL3-targeted bispecific T-cell engager, is ongoing in patients with metastatic NEPC, showing manageable safety and encouraging anti-tumor activity in DLL3-positive cases (NCT04702737). • Other agents like HPN328, another DLL3-targeted T-cell engager, are also being tested in neuroendocrine prostate cancer. These studies reflect a strong research focus on DLL3 as a therapeutic target for NEPC.
Alain sent: 7:16 PM Thanks guys, see you next time!
Doug D sent: 7:18 PM Thanks all. See you next time.
Wes – San Diego sent: 7:19 PM To all. Your great advice over the past 6 months helped me immensely in finding and getting great care, and a treatment plan that matched my goals.
George (Chicago) sent: 7:27 PM Thank you, gentlemen. Very helpful.
Bob Schwartz, USN, Venice FL sent: 7:35 PM Good mtg., got to go.
Thomas M sent: 7:37 PM Thank you all for your help. Thomas.
Jon McPhee Toronto sent: 7:37 PM Thanks. Goodnight.
Steve White sent: 7:44 PM Thanks so much for your help tonight. Goodnight.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, June 24, 2025
Remember — no meeting next week! Next meeting is July 7.
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 Picks: Gleason 10 learns his doc stopped testing his PSA; active surveillance patient starts treatment too late. (bn)
Topics Discussed
Reports of Dr. Snuffy Myers’s death are greatly exaggerated, as Paul Schellhammer can confirm; doc silently dropped PSA from Alaska newcomer’s yearly blood test in 2011 — now he’s Gleason 10; active surveillance patient’s PSA passes 4 without treatment and it’s 435 now; “Orgovyx? No, you don’t want that,” he’s told; PSA falls from double-digits to undetectible in two months with help from brachy, IMRT, and hormone therapy; a lot of anemia symptoms, but his blood work doesn’t show it — might it be something else?; to see Dr. Antonarakis, he needs to be sicker; hints of a trial that targets foamy gland prostate cancer; NCCN guidelines say added abi is an option for very high risk patients getting ADT with primary radiation; newcomer is 4+3 but he’s got ductal — should he be with us or Low/Intermediate?; no meeting next week — see you July 7.
Chat Log
John A · 6:48 PM
Stage IIIc
Karl Sullivan · 6:58 PM
unable to get audio
AnCan Barniskis Room · 7:00 PM
Karl – call 877 582 7011 for suppport. Have you selcte teh right speaker in the Settings?
AnCan Barniskis Room · 7:16 PM
Dr. John Antonucci dr.john@ancan.org
Karl Sullivan · 7:18 PM
Thank you. I have audio but NOW, not my camera. This IS my first sign in. Very impressed with the conversation.
Ben Nathanson · 7:23 PM
Going off camera a sec, still listening
dan, alexandria · 7:39 PM
👍
AnCan Barniskis Room · 7:41 PM
Ember device https://embrlabs.com/
dan, alexandria · 7:42 PM
Another good meeting, guys. Thanks…. I have to leave.
Gary V Portland, Oregon · 7:53 PM
Good evening gents thanks for all the information…
Steve Roux, North Michigan · 7:57 PM
Have a great week and weekend guys! GREAT meeting once again!
Richard Tolbert · 8:00 PM
Ben, thanks for moderating. Great meeting!
Thomas M · 8:26 PM
Got to bounce, gentlemen. Thanks for a great meeting.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, June 10, 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: Does a “tricky” cancer merit two chemotherapies at once? (bn)
Topics Discussed
Urged by Alexa’s mom to check their PSA, 3 discover de novo metastasis; we’re not spokespersons or shills for any pharma company; doc piles it on with two chemo drugs and they’re hitting him hard — does he really need both; his tricky intraductal diagnosis demands top-notch docs; Eggner, Liao, and Szmulewitz are “the A team”; PSA risen to 0.4 doesn’t mean “see you in 3 months”; after a “mismash” of treatment, Tanya Dorff may give clarity; plan to use focal therapy raises eyebrows; sharing details of a cardio-oncologist visit; are more Pluvicto rounds really needed for a super-responder?; pace yourself when working to regain muscle; scary dental side effects from a bone strengthener; Hope Lodge visit was “an amazing experience”; former Moffitt patient’s advice: go elsewhere; his tricky radiation looks like it hit the mark; trouble with gynecomastia; feeling better after 5 rounds of chemo; treating the prostate after de novo metastasis — radiation or surgery?
Chat Log
AnCan Barniskis – rick · 6:30 PM
dr.john@ancan.org
Len Sierra · 6:41 PM
This comes from GU ASCO 2024: Site of Metastatic Disease Median OS HR 95% CI P value Bone 59.4 m Ref Lung 82.2 m HR 0.6108, 95% CI: 0.47- 0.7988, p,0.001 LN 66.6 m HR 0.845, 95% CI: 0.7435-0.9875, p= 0.018 Liver 45.3 m HR 1.58, 95%
AnCan Barniskis – rick · 6:50 PM
davidm@ancan.org
AnCan Barniskis – rick · 6:51 PM
David Muslin
DJFairbanks · 6:58 PM
Our PSAM PET showed lung nodules at 0.36
Gary V Portland, Oregon · 7:18 PM
You are all wonderful really appreciate all of your knowledge just incredible…See you all in 2 weeks..
DJFairbanks · 7:19 PM
THank you everyone – I look forward to learning more from you all.
AnCan Barniskis – rick · 7:24 PM
Elisabeth Heath https://www.mayoclinic.org/biographies/heath-elisabeth-i-m-d/bio-20576547
Len Sierra · 7:25 PM
Sartor left Mayo this year.
AnCan Barniskis – rick · 7:27 PM
Forget Sartor
Len Sierra · 7:30 PM
AstaBio, a biopharmaceutical company developing next‑generation targeted cancer radiotherapies, today announced the appointment of Oliver Sartor, MD to its Medical Advisory Board.
Alfredo in Houston · 7:31 PM
SpaceOAR, Barrigel, BioProtect are the three products that create space between rectum and prostate
Steve Roux, North Michigan · 7:42 PM
This group is awesome – I’ll see you next week gang!
Alfredo in Houston · 7:43 PM
I have to run. Bye for now. Thanks for all the good information tonight. Good health to all!
DJFairbanks · 7:44 PM
Ooh, I want a tshirt – 🙂
AnCan Barniskis – rick · 7:45 PM
Here’s where you get a T-shirt … or sweatshirt. https://ancan.org/shop/
dan, alexandria · 7:45 PM
Another great session… but I do have to scoot. Thanks All….
DJFairbanks · 7:46 PM
@Bob Schwartz, USN, Venice FL Bob – What chemo did you have?
AnCan Barniskis – rick · 7:48 PM
G-d bless you, Lee
George (Chicago) · 7:58 PM
Thank you, gentlemen. Much learned, much to be learned.
Steven T · 8:03 PM
Thanks everyone. Have a great evening!
George (Chicago) · 8:03 PM
Thanks very much, Ben. A pleasure meeting you in person for sure. Yes, we’ll stay in touch. Do you think this is the right group for me?
Alan Babcock · 8:05 PM
On exercising find something you love and do it
AnCan Barniskis – rick · 8:08 PM
https://flcancer.com/en/physician/elizabeth-guancial-md/ Elizabeth Guancial
“…messaging by prostate cancer support groups and foundations lacks all credibility because they receive significant sponsorship and support from Big Tech and those in the business of prostate cancer.”
When Bert Vorstman MD chose the byline Is the cure worse than the disease? in his recent The Active Surveillor article discussing his perceived truth about prostate cancer, it raised a huge red flag for us at AnCan. If you live with anything more than Gleason 3+3 disease, there is no cure. And doctors who speak about cure will invariably backtrack and agree that they should be speaking about a durable and contnuing remission, a phrase coined by the late Dr. Snuffy Myers.
Vorstman is correct in saying that PSA is not specific to the prostate gland – the salivary glands produce it too, but it’s no ‘barefaced lie’ and raises another red flag – that further tests are needed to find out why PSA is elevated.
I am loathe to use the title Dr. when this MD claims that most published medical evidence is false. I can’t pretend to imagine the standard of his medical education in New Zealnd. But I can agree with Vorstman and his Ablin sidekick, Ron Piana, that some 3+3 prostate cancer should not be named cancer and calls for surveillance rather than surgery or radiation.
That’s about all we do agree on. Both fail to appreciate AnCan’s position that the PSA test is about information, not treatment. So discouraging PSA testing throws the baby out with the bathwater. Where are we supposed to source this headsup information elsewhere? Despite repeated request in the comments, that I urge you to read, nothing is suggested.
I had a PCP who didn’t believe in PSA testing. My PSA leapt from 2 to 10 in 2 years and had it not been for my uroogist, who I was seeing for a kidney cyst, I would now be the wrong side of the grass with no AnCan. There are many, many men like me – ask the minions of de novo metastatic men showing up in our support group weekly. Is the cure worse than the disease? is ignorant. It patently fails to acknowledge that many men with prostate cancer require treatment to avoid a prolonged and painful death.
You decide if AnCan provides a distorted message and if the prostate cancer world is one big, distorted financial scheme. Is that ‘The Great Prostate Hoax’ (Ablin & Piana) or are they the hoaxsters?
What concerns us equally at AnCan is how The Active Surveillor can publish this nonsense, followed only days later by this headline “Don’t miss your PSA screening—your life may depend upon it”. Everyone is entitled to an opinion, in fact many of you have heard the expression, “Opinions are like a**holes, everyone has one!” And I’ll add, some people confuse what comes out of one with what comes out of the other.
That said, we don’t have to provide a soap box for opinions that confuse our core audience, and even discourage them from maintaining best medical practices to addres their condition. Howard Wolinsky publishes The Active Surveillor – AnCan loves Howard the way you love that gnarly old uncle who pinches your cheek while sticking a buck in your pocket. He’s truly a treasured member of AnCan’s Advisory Board, and occasional Active Surveillance Moderator.
Raising this post in various AnCan Groups has educated me to understand that Howard’s journalist instinct encourages him to publish all sides of an issue. AnCan’s postion is that anything discouraging men from PSA testing inhibits efforts to fight prostate cancer. We are not just critical of HW; we suggest it seriously questions his credibility when he then encourages men to get tested a coupleof days later. What to believe? Don’t be an enabler.
What do you think? In the Vorstman/Piana post, Howard encorages you to let him know – please do! howard.wolinsky@gmail.com
“Someone I once loved gave me a box of darkness” –Mary Oliver
I was at a 12-Step-oriented workshop about grief recently, and it made me think about Men Speaking Freely (MSF). We are vaguely aware of grief in all MSF groups, it hangs over us, and we have at times focused on some specific griefs/losses, such as vitality, or a longer life. It is commonly thought that not thinking about a loss, not talking about it is the manly thing to do. Here in MSF we get relief by sharing our common losses with each other.
The presenter of that workshop, Marcia C., had some ways to specifically talk about grief that were new to me. She gave me permission to use some of her material here. She pointed out some types of losses that I hadn’t realized. For example, the loss of who I would have been if cancer didn’t happen, the grief of estrangement, loss of work, of status, of friendship; the loss of never having had something, that of aging, of trust, or of giving up something.
She said there is “unacknowledged grief” when such losses are never fully brought to consciousness. When I looked at her long list of examples I saw many that I have. We ought to watch for unacknowledged grief.
She described “non-finite” grief, which has no end-point other than death. Ours could be in that category, since as time goes by our loss increases instead of lessens.
Marcia said, ‘’Sharing your grief is a way to receive validation and compassionate witnessing. It can help you begin a path to healing and/or finding a way to live with grief.
Consider the questions below:
1. Are there griefs you haven’t realized you have or have been afraid to face?
2. Are there griefs about which you’d like to share?
3. Do you have grief practices that might be helpful to others?
4. Make a list of griefs you’ve experienced.
5. Choose a tool from the list that might help you process your grief.”
That list of “tools” was long; it included things like: write a letter or poem describing our loss…Create a ritual of letting go…Share with others who have had similar losses…Visit a place that is meaningful…Make or buy a talisman that helps you feel protected…Dance, run, yell to get your feelings out of your body…Plant something in remembrance or as a new beginning…Start a new tradition…Do an intentional funeral… These are ways to bring acknowledged, unacknowledged, and non-finite grief out for a conscious conversation. Moving from covert to overt, with the goal of making a relationship with the loss, and getting rid of the unconscious silent prolonged scream that I, for example, think I harbor.
We think of grief as emotional, but in “Dealing With the Physical Impact of Intense Grief” by Batya Swift Yasgur, the author describes the variety of physical reactions to grief. Ranging from elevated blood pressure to takotsubo cardiomyopathy — sometimes called “broken heart syndrome” — which is a “stress response that balloons the heart.” We often wonder about the reaction on our immune system, and its implications to our overall survival. In fact, probably nearly all our systems react to grief in some way.
There is a fairly new grief-related diagnosis in the Diagnostic and Statistical Manual and the International Classification of Diseases, describing a “persistent and pervasive grief response” that goes on longer than a year., and is now called Prolonged Grief Disorder. In order to be diagnosed with Prolonged Grief Disorder, a person must experience at least three of eight additional symptoms that include “disbelief, intense emotional pain, feeling of identity confusion, avoidance of reminders of the loss, feelings of numbness, intense loneliness, meaninglessness, or difficulty engaging in ongoing life” according to Columbia University’s Center for Prolonged Grief. For an adult to meet the criteria for a PGD diagnosis, the death of a loved one must have occurred at least one year ago, and the symptoms must be present most days since the loss and nearly every day for at least the last month.
Our situation is different from losing a loved one (although it includes that) and waiting for the grief to go away. Instead of a major loss which goes farther and farther into the past, our major loss is in the future. We have sort of a reverse Prolonged Grief Disorder. For instance, I expect my losses to get worse and worse until death.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, June 2, 2025
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!
Editor’s Pick: Saving the best news ’til almost last – AnCan’s own walking miracle who postponed his funeral! (rd)
Topics Discussed
Community care MO is sadly clueless; more community care but GU MO available; 3rd BCR brings up trial that smacks of Academic Conflict of Interest; exhausted after 3rd Pluvicto but hisLu177 peers say hang in; more scans and bone Bx negative, but MGUS appears; perfect timing for mHSPC man wanting daro – Nubeqa approved for mHSPC ; surgery vs RT decision for high risk man who also faces academic CoI; starting Firmagon; Tumor Board dismissed for GU MO – as AnCan predicted; simple PSA test may allieve concern over lower back pain; Gent with too many mets to count NED post 6x Pluvicto; PSA remains stable with no treatment
Chat – abbreviated this week for space!
Alfredo in Houston sent: 5:20 PM I lived in East Sacramento for 20 years.
Bob Alvord sent: 5:55 PM Thank you for the information on doctors in UC
Russ – PCaWarrior sent: 6:28 PM 6. Myokine/Metastatic PCa Trial • Population: Men with mCRPC • Intervention: 6 months supervised aerobic + resistance exercise vs. self-directed exercise • Findings: • Higher serum myokine levels in supervised group • Post-exercise serum from exercisers inhibited DU145 PCa cell growth in vitro • Conclusion: Exercise may promote systemic adaptations that suppress tumor growth in mCRPC.
Matt sent: 6:37 PM Hi guys. heading out. have a great week. hope to see some of you thursday…..
Russ – PCaWarrior sent: 6:38 PM As of mid-2025, darolutamide (Nubeqa) has received **regulatory approval for use in metastatic hormone-sensitive prostate cancer (mHSPC) ** before chemotherapy, based on strong outcomes from the ARASENS trial. Here’s a summary of current approvals and guidance:
Steven T sent: 6:55 PM Thanks everyone for your input!
Russ – PCaWarrior sent: 6:55 PM I did RP. Is this primary? First line? I was biopsied 3+4. Turned out very different 4+5. If I had done RT I would have never known. 30% approx biopsies are incrorrectly graded. I forget the breakdown. Something like 18% downgrades and 12% upgrades. Many studies.
Alfredo in Houston sent: 7:01 PM Family is calling for me, so I must bid y’all a good night. Best wishes to all.
Peter M sent: 7:03 PM Good night gents. Great meeting!
Bob Alvord sent: 7:05 PM Thank you all so much! Like the terminator, “I’ll be back!”
Russ – PCaWarrior sent: 7:06 PM Nite Bob. One of my favorite movies.
Bob Alvord sent: 7:06 PM MIne too!
Michael in Denver sent: 7:07 PM Thanks. Good nite.
Bob Alvord sent: 7:07 PM Nite All. Thanks you!
John A sent: 7:07 PM goodnight gentlemen
dan, alexandri sent: 7:09 PM Night Gents… thanks for updates.
Thomas M sent: 7:14 PM Got to skoot. Thanks all for a very informative meeting. Peace.
RJ Smith (Seattle)sent: 7:28 PM NTD–Great News Frank!
