Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 4, 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 https://ancan.org/veterans/
Editor’s Pick: Estradiol expert peers Schellhammer and Wassersug discuss ADT and use (rd)
Topics Discussed
ADT side effects and estradiol discussion; restarting monotherapy darolutamide; CT scans carry little secondary cancer risk; cancer is an aggressive variant that can’t be identified; lower back pain; starting ADT + RT for BCR; Ph. 3 AMG509 trial – xaluritamig STEAP T-cell engager; zoledronic acid (Zometa et al) vs denosumab (Xgeva et al); chemo side effects – overdosing steroids?; IDC-P (intraductal) Gent needs new doc; dialiing back IDC-P outlook a tad Chat Log
Chat Log
Scott Romsos – Ely, NV sent: 5:14 PM
It is all good Mr Nathanson, no worries.
RJ Smith (Seattle)sent: 5:18 PM
Hey Steve–so far, so good. Starting IMRT on Thursday (got my gold markers and then tatoos, so good to go). Dr. Meier is awesome, BTW. He isn’t doing my IMRT, but Dr Spiegel in Issaquah seems pretty good as well where that starts on Thurs, and then SBRT for “boost” as well as for rib met after that…. Also, when I got markers put in, they checked PSA, which is now down to 1.02 with the ADT, so definitely feeling I’m on the right path now.
Jerry Grimes, Brighton, MI sent: 5:23 PM
My bone density actually recovered to a normal range after I went on estradiol. I was on the verge of osteoporosis.
Correction, sorry. I only started pet-PSA scans once my psa started to rise…….one year after drug holiday. Then I was was doing scans every 3 months watching for Mets.
Richard Wassersug (Vancouver) sent: 6:03 PM
Sorry, got to go. richard.wassersug@ubc.ca
Frank Ciambra sent: 6:04 PM
goodnight sorry
Julian – Houston sent: 6:22 PM
goodnight all
rd sent: 6:24 PM
Hi Folks…. tech issues and VSS obligations.
Ancan – Bill sent: 6:24 PM
Nice to see you again RD.
rd sent: 6:36 PM
Mark Finn GRHS tried for AMG509
dan, alexandria sent: 6:48 PM
Is there a time limit if you are on Reclast?
John A sent: 6:49 PM
same drug, Dan, zoledronic acid
AnCan – rd sent: 6:50 PM
Probably the same 5 years
Jack sent: 6:59 PM
That relieves me. Thanks David!
AnCan – rd sent: 7:08 PM
Thomas – Sokolova is giving you the run around. If me, I’d iinsist on denosumab in an appropriate dose.
Thomas M sent: 7:22 PM
The zoledronic acid vs denosumab discussion was right on point for me. Thanks for everyone’s input.
David Muslin sent: 7:25 PM
I have to go. Thanks all
George (Chicago) sent: 7:26 PM
Thank you, gentlemen.
AnCan – rd sent: 7:08 PM Thomas – Sokolova is giving you the run around. If me, I’d iinsist on denosumab in an appropriate dose.
Thomas M sent: 7:22 PM The zoledronic acid vs denosumab discussion was right on point for me. Thanks for everyone’s input.
David Muslin sent: 7:25 PM I have to go. Thanks all
George (Chicago) sent: 7:26 PM Thank you, gentlemen.
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 16, 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: After 20 years continuously on AS, 3+3 becomes metastatic (rd)
Topics Discussed
After 20 years continuously on AS, 3+3 becomes metastatic; man with recurrence must learn to be his own best advocate; denovo Mx Alaskan needs better treatment fromf the VA; success report from PBRT; trust Dr. Zhao!; primary treatment with BPH; long term management of recurrent, oligo-MX disease; abo vs daro; infections and A-fib defer PrCa Tx.; scans show clean but HT causes sweats and fatigue; youngr Gent shows nothing on PSMA at 0.14 – needs to switch his care; HT is doing its job
Chat Log
steve cavill – Melbourne, Australia sent: 5:32 PM what pirads? That gives a good idea of grade hmm ok, biopsy would be useful !
Bob Alvord sent: 6:02 PM I download all my scans, biopsy reports and labs to Chat Gtp. Chat returns detailed interpretations after I also mention that I am not a doctor, so in plain language. I also ask Chat for relevant questions. Not a perfect way but a good way to generate questions.
Jim Marshall, Alexandria, VA sent: 6:08 PM Veterans Support Group, Tuesday at 2000ET.
Jim Marshall, Alexandria, VA sent: 6:35 PM If one takes FINASTERIDE it will artifically drop the PSA by 50%.
Russ – PCaWarrior sent: 6:50 PM NCCN Low/favorable IR: SBRT alone is acceptable; ADT is optional. Unfavorable IR: SBRT + 4–6 months ADT is recommended. High risk: SBRT + 2–3 years ADT (Category 2A). Very high risk: SBRT only in trial settings; standard is EBRT ± brachytherapy + long‑term ADT. Finasteride : PSA. Finasteride blocks 5AR type 2. That is the predominant type in the prostate and PCa cells. DHT drops. PSA drops. Androgens (e.g. T) upgregulate PSA. ARSIs (e.g. Xtandi) downregulate it. Practical solution to upregulating or downregulating is to measure PSA in the same environment.
Jim Marshall, Alexandria, VA sent: 6:56 PM Was on Eligard + ABI for 5 years and NO SWEAT with side effects and now 3 years into Treatment Holiday and counting.. Mitigated ADT + ABI with exercise every day and diet.
Richard – Virginia sent: 7:04 PM i have to leave. I will talk next week.
dan, alexandria sent: 7:06 PM Thanks all… I have to leave.
Ben Nathanson sent: 7:36 PM John G –The first of these doesn’t seem to cite any sources, meaning none of the claims can be verified by readers. I distrust that. The second is in the context of chemotherapy, and is also retrospective — not clear it’s relevant to your case. Also fwiw the work was funded by Bayer, the maker of daro.
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
“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.
