Hi-Risk/Recurrent/Advanced PrCa Video Chat, Dec 9, 2025
AnCan thanks the following sponsors for making this recording possible: Bayer, 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: Lotsa confusion throughout this week! To pick just one, Signatera MRD test.
Topics Discussed
Newbie has a great HCP team – but seeking more; Mayo bamboozles this Newbie – needs more and reliable information; another Newbie chose to leave himself on ADT for 5 years – and wonders about fatigue and weight gain he’s now shed w. GLP; muscle mass with low T; Regular finds Signatera MRD test – but it’s not yet FDA approved for prostate cancer… & Dr. Jack’s been following this test a long time; Epstein downgrades Gent from 4+5 to 4+3 – Kishan & MR Linac next; elevated liver enzymes after chemo; steady as he goes with 0.03 rise; what’s pituitary’s role for testosterone; PSA testing during Pluvicto
Chat
Alexander Lalov, Pendleton, IN
sent: 4:13 PM
Is the recording going to be made public?
Eric James; Tyler TX
sent: 4:13 PM
yes, on Youtube
AnCan – rick
sent: 4:14 PM
All our Recordings are posted on YuTube – over 700
Larry (Veteran, Alaskan)
sent: 4:16 PM
Check your camera shutter at the top of your screen
Dr. Ming Zhou Mount Sinai Health System Department of Pathology, Box 1194 Annenberg Bldg. 15th FL 1468 Madison Ave New York, NY 10029 Email: Ming.zhou@mountsinai.org Telephone: (212)241-8881
Jay – those are the 2 pathologists for a 2nd opinion.
Alexander Lalov, Pendleton, IN
sent: 5:27 PM
Bary, would you post the web address, please
Alexander Lalov, Pendleton, IN
sent: 5:28 PM
Oh, Withing is the name. Thnx!
John G.
sent: 5:28 PM
https://www.youtube.com/watch?v=Ado6dItMebE Yes, even on androgen deprivation therapy (ADT) with testosterone suppressed to near-zero (castration levels), you can increase muscle mass and strength through resistance training, though gains are typically modest and focused on counteracting atrophy rather than dramatic hypertrophy.[1][3] ## Evidence from Studies Multiple clinical trials show prostate cancer patients on ADT gaining muscle mass and fiber size after 12–20 weeks of supervised resistance training, including compound lifts like squats and presses, performed 2–3 times weekly. Progressive overload—gradually increasing weights—prevents fiber size decline in both type I and II muscles and boosts capillarization for better performance. These adaptations occur via mechanical loading and protein synthesis pathways independent of testosterone, such as IGF-1 signaling.
Larry (Veteran, Alaskan)
sent: 5:28 PM
YMCA “Livestrong” program is designed for cancer survivors. Look it up
Larry (Veteran, Alaskan)
sent: 5:29 PM
Government funded, so it is free and includes YMCA membership for the 12 week duration,
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Nov 3, 2025
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: High volume de novo metastatic diagnosis calls for triplet therapy.
Topics Discussed
Newbie with IDC-P (intraductal ) graduates from Low/Intermediate to High Risk Group; … and this Newbie goes the other way; last Newbie’s in the right group – denovo Mx & triplet Tx; wait on debulking treatment; 6 mo. doublet may not have been enough – discuss resumption w. Rettig; restart that prednisone ASAP; what to watch out for starting chemo – Neulasta, freeze packs et al; surgery removes cystitis tissue and finds no cancer
Chat (unabridged)
AnCan – rick
sent: 6:13 PM
877 852 7011 GoTo help
Jim K
sent: 6:18 PM
Yes, my med onc suggested that I check out AUS bcz of my incontinence.
I’d like to see if anyone in the group has had the artificial sphincter put in.
I used to attend X (?) years ago, and stay in touch with Rick, and read the emails. I’ve been undetectable since June 2019, after a recurrence and radiation, after a Rad Pros in Aug 2017.
Jeff Marchi – San Francisco
sent: 6:23 PM
Jay from Miami raised his hand about intraductal
Jim K
sent: 6:23 PM
Thumbs up.
No. Vietnam started to wind down by the time I hit 18, if I recall correctly.
AnCan–John A
sent: 6:25 PM
Jim K; So you have no mike but can hear us, right? I have had the AUS. —John A
Jim K
sent: 6:25 PM
Yes, no mic, but can hear the members.
Jim Marshall, Veteran, Alexandria, VA
sent: 6:26 PM
Think Jim K mike may work. Jim M
Jim K
sent: 6:27 PM
I’m using the browser, on Chrome, not the app, but it’s not enabling my mic. I’m on a Mac laptop.
Yeah, no discernable improvement with Kegels. I use 7 or more pads per day. Just one at night. BUT, to keep my remaining kidney in good shape, I drink 96 oz of water per day, so, lots of peeing, understandably.
Thanks, Larry, I’ll email you.
Steve R.
sent: 6:30 PM
A short video on Intraductal diagnosis and treatment from Urology Times https://www.urologytimes.com/view/dr-miron-on-the-treatment-of-intraductal-carcinoma-of-the-prostate
Will discuss it tomorrow night. Give Dr P my best. My PSA = 0.12 and I do not go back to her till it reaches PSA=0.8-1.0. Might be sometime next year. Jim
Frank Ciambra
sent: 7:06 PM
good night
Mark N
sent: 7:12 PM
Dr. John, I just sent you Dr. Epstein’s biopsy results. Thank you
Jeff Marchi – San Francisco
sent: 7:12 PM
Chicago Illinois Which one? At U of Chicago Russell Szmulewitz, MD – UChicago Medicine Or at Northwestern David J VanderWeele : Physician Profile: Robert H. Lurie Comprehensive Cancer Center of Northwestern University : Feinberg School of Medicine: Northwestern University
Jeff Marchi – San Francisco
sent: 7:15 PM
MSI (microsatellite instability) testing for prostate cancer is performed in specialized pathology laboratories using tissue samples obtained during a biopsy or surgery.
Len Sierra
sent: 7:17 PM
According to AI, Tumor Mutational Burden (TMB) can be measured in both solid tissue biopsy (tTMB) and liquid biopsy (bTMB
Concordance between liquid TMB and tissue TMB can vary if tumor is not shedding into the blood.
Gary Martin
sent: 7:23 PM
Thank you very helpful information.
Jim Marshall, Veteran, Alexandria, VA
sent: 7:30 PM
I did 60 mionths of ADT + Abi and now am 39+ months into a Treatment Holiday. Jim Marshall
Jon McPhee Toronto
sent: 7:31 PM
What duration of doublet is recommended?
Jim Marshall, Veteran, Alexandria, VA
sent: 7:32 PM
Amount of time answer …. It Depends on many factors.
Bob Schwartz U.S.N. Venice, FL.
sent: 7:35 PM
Congrats Capt. Jim, 39+ months is GREAT!
Jim Marshall, Veteran, Alexandria, VA
sent: 7:37 PM
Eligard & Lupron is the exact same drug with a different method of delivery. Jim
Jim K
sent: 7:40 PM
I have to go, but am interested in AUS surgery. My email is: jimkubat@yahoo.com, if any of you have any time to chat about it. Larry, I’ll reach out. Thanks, Rick!!
AnCan – rick
sent: 7:42 PM
Orgovyx
Hank Zajic Springfield VA
sent: 7:48 PM
I have to go. Thank you everyone.
dan-s
sent: 7:51 PM
I have to go Gents… thanks for another great session
Gary Martin
sent: 7:57 PM
I asked about getting the anti-neutropenia meds and was told they did not plan on ordering those. My blood counts have not been extremely low and I seem to be tolerating docetaxel so far thru 5 infusion, though fatigue has been increasing.
Bruce Schrimpf
sent: 7:59 PM
Must run. Thanks for a great session! I will see Capt. Jim tomorrow.
Joe Comanda (Philadelphia)
sent: 8:00 PM
Need to take off. Will hold my question for another time.
Eric Curtis
sent: 8:05 PM
Gotta run. Appreciate the info
Gary Martin
sent: 8:05 PM
I’ve used cryotherapy (gloves and socks) circulating ice water with Polar Products equipment (available on Amazon) Use it 15 minutes before, during, and 15 minutes after infusion. So far, it’s working to avoid/minimize neuropathy. I also got the frozen gel gloves and socks as backup. It’s a hassle but I think wellworth the effort.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 12, 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: You’re not alone if you have lungs-only metastasis. (bn)
Topics Discussed
He’s responding to ADT, but we keep wondering about the “neuroendocrine hyperplasia” found in his lung; salvage radiation is recommended, but mom’s bad radiation experience leaves him fearful; even with cribriform, Gleason 4+3 puts him in the low/intermediate group; the word is “debulking” for giving prostate radiation after de novo metastasis; low-PSA-producer sees a doubling in 3 months, but it’s from 0.016 to 0.032 — is that worrisome?; with new oligomets, he wonders if he should get chemo now and be done with it; minimal cancer found in his blood test and negative PSMA — he’s celebrating; abi patient gets facial swelling — is the physician assistant handling it properly, and why wasn’t he warned against stopping prednisone too quickly?; swimming through bureaucratic murk to see a radonc.
Chat Log
Ancan – Bill · 6:36 PM
Jim, Bravo Zulu for the referral award tonight!
AnCan – rick · 6:43 PM
I think Prostox may now be available.
Steve Roux, North Michigan · 6:45 PM
PROSTOX, a genetic test designed to help prostate cancer patients minimize the risk of radiation toxicity, is available to patients in the USA, with the exception of New York State residents.
Steve Roux, North Michigan · 6:49 PM
A list of Early Access Providers who offer PROSTOX testing can be found on the MiraKind website. These providers include institutions like the Mayo Clinic, UCLA, and UCSF Radiation Oncology.
Jim Marshall, Veteran, Alexandria, VA · 6:56 PM
Orgovyx is the pill. versus Lupron
AnCan – rick · 7:00 PM
In no circumstances a 6-mo DEPOT.
Jon McPhe · 7:03 PM
Anyone got a short version of why Orgovyx and not Lupron? I ,ay have to make a choice tomorrow.
Steve Roux, North Michigan · 7:04 PM
I did not tolerate Lupron well at all.
Steve Roux, North Michigan · 7:05 PM
I saw a GU Oncologist who put me on Orgovyx which is a pill and easy to take. Very much less side effects.
Julian – Houston · 7:05 PM
I was on Lupron then got switched over to Orgovyx and Nubeqa.
Steve Roux, North Michigan · 7:07 PM
Gerry / Cynthia – if you are on medicare, the new max out-of-pocket for drugs is reduced now to only 2,500.00 per year. That makes Orgovyx very affordable.
RJ Smith (Seattle) · 7:07 PM
Orgovyx you can stop taking the daily pills, and testosterone will come back much quicker. Multi-month Lupron will keep on going, and doesn’t stop completely on the last day of the month.
AnCan – rick · 7:12 PM
We call that debulking the primary
Jeff Marchi – San Francisco · 7:29 PM
I have been on Lupron for 7 years and Orgovyx for 2 years. After 5 months of Orgovyx the side effects are identical to Lupron
Jeff Marchi – San Francisco · 7:31 PM
Some people don’t produce PSMA, so the scan can’t find anything.
Jeff Marchi – San Francisco · 7:46 PM
First 5 months hot flashes stopped, since then as bad as Lupron 10+ a day most days
Steve Roux, North Michigan · 7:50 PM
https://www.drugs.com/compare/lupron-depot-vs-orgovyx
Steve Roux, North Michigan · 8:04 PM
Thank you to everyone especially you wonderful moderators! Time for my Orgovyx and a bowl of ice cream. Good night all!
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.
Tomorrow is the 10th Anniversary of my dear friend, Jerry Carniglia’s passing, God Rest His Soul.
I loved this man. I found him in 2011, when my buddy Eric Schmier GRHS/z”l asked me to navigate him. That’s the same Schmier after whom we named one of our Virtual Room when his family made a very generous donation early in AnCan’s history. Jerry had been diagnosed with denovo metastatic prostate cancer and was being treated inadequately at Kaiser Permanente in Oakland, CA.
Eric was a developer in Emeryville, Caifornia, and Jerry was the ‘unofficial’ Mayor. Everybody knew him – he lived in a disused 6,000 s.f. factory turned into his living space and studio. Jerry was a general contractor, artisan woodworker with an enormous, fully equipped workshop, an artist of very large (& small) canvasses, and not least an actor. Jerry’s closest buddy from drama school at UC Berkeley school was Tony award winner, Tony Taccone, Artisitic Director at Berkeley Rep. You may be familiar with Tony’s son and Jerry’s Godson, Jorma Taccone of Lonely Island and Saturday Night Live fame (Dick in the Box).
Jerry was diagnosed with denovo metastatic prostate cancer in 2011, and we transferred his care from KP to UCSF as soon as we could under the amazing, watchful eye of Dr. Larry Fong. Larry is the Principle Investigator for Provenge and a highly respected GU medical oncologist. Jer’s prognosis was not great and we got him around 4 years.
This picture was taken on Halloween 2012 on the occasion of Jerry receiving his 3rd Provenge infusion!
Amongst other pre-‘AnCan’ directed navigation, Jerry was the first Veteran I supported. When I discovered he’d served on a Blue Water craft in the Mekong Delta. we got him over $4 Grand a month! And it was through Jerry that AnCan found our Care Partner Lead Susan Lahaie, and her late husband, Ron Silverio.
Jerry decided he wanted to document his last years. He bought a fancy camera, the softtware program First Cut that he taught himself, and started making videos. It did not hurt that he had many connections to assist him with video, audio, editing and production. In Jerry’s dear memory, I want to bring several videos to your attention that are now lodged on You Tube. You’ll find me reluctanty appearing in two of them!
Jerry Carniglia, Painter is a short video displaying his remarkable technique. I suspect, although I’m not certain, this canvas may be one of the 3 Carnigloa paintings I have hanging in my casita. Much of his work was donated to UCSF and to Larry Fong personally. He is collectable and had several shows.
Jerry Cut 3 – is an edited collage of several clips Jerry made in his own memory. He intended them to be watched as you are doing today This is Jer!!
Painting A Quiet Radical, a 5 min short, is scripted and acted by Jerry and friends who also lived with advanced prostate cancer. Other than myself, the other’s are no longer with us. His Tony award winning director friend, Tony Taccone refused to have any part of this, then showed up at the read-through and directed the whole 9-yards!
Signs is the re-enactment of a true event when Jerry went for an evening stroll along the railroad tracks close to his factory, He tripped, fell, knocked himself out and almost got run over by a train. I tracked him down several days later in the hospital. A few months later Jerry called me up one Monday morning in the Fall and told me to come by that afternoon. We were filming! I asked what – and where’s the script. He said – “Just show up wearing shorts and sandals. You don’t need a script!” Gotta love this man.
This post is a tribute to Jerry Lee Carniglia. He died on June 7, 2015 – may his memory always be a blessing. It will to me.
I loved this man. I found him in 2011, when my buddy Eric Schmier GRHS/z”l asked me to navigate him. That’s the same Schmier after whom we named one of our Virtual Room when his family made a very generous donation early in AnCan’s history. Jerry had been diagnosed with denovo metastatic prostate cancer and was being treated inadequately at Kaiser Permanente in Oakland, CA.
Jerry was diagnosed with denovo metastatic prostate cancer in 2011, and we transferred his care from KP to UCSF as soon as we could under the amazing, watchful eye of Dr. Larry Fong. Larry is the Principle Investigator for Provenge and a highly respected GU medical oncologist. Jer’s prognosis was not great and we got him around 4 years.