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.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 17, 2025
(Apologies for late posting… still catching up from GU ASCO25: rd)
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostic.
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!
Catch weaver, Jose Picayo speaking to AnCan’s Hannah Garrison in Solo Arts Heal about how his weaving has helped him and others heal. Next Wed, Feb 26th at 7.30 pm PACIFIC https://themarsh.org/soloartsheal
Editor’s Pick: Listen to Al L’s 30 yr survival story with a G5+4 (rd)
Topics Discussed
starting on Pluvicto; can a ctDNA test reveal disease – and how do you get it?; photon =proton; can you biopsy a rib – generally not; debulking the primary with radiation; spot RT to T10; do you have to give up alcohol on abi?; good small cell NE like markers.; 30 yr. 5+4 survivor tells his story!
Chat Log
Al L sent: 6:16 PM
biotene
AnCan – rick sent: 6:20 PM
Heh Gents… just back from SF – literally
Len Sierra sent: 6:20 PM Welcome back, Rick!
Jim Marshall, Alexandria, VA sent: 6:33 PM Internet connect tonight is BAD!!!! Will catch all on the recording
Steve L sent: 6:34 PM Compassionate Care Program If a patient is uninsured or is concerned about their ability to pay for Natera genetic testing, they can contact us at Tel:+1.650.489.9050 option 2 | oncologybilling@natera.com
Joel Blanchette, Reston, VA sent: 6:43 PM Try unplugging your headphones
Wes – San Diego sent: 6:44 PM Sorry, yes. Looks good now; question of if there is anything I do to rule out the rib, after an xray was not definitive in identifying an old break.
AnCan – rick sent: 6:57 PM FDG PET scan, Axumin scan
Steve L sent: 7:14 PM I understand that Abiraterone isn’t Chemo, however mine arrives in a bag labeled ” chemotherapy drug ”
Wes – San Diego sent: 7:25 PM No, if a drug is not on a formulary, then deduction does not apply.
Wes – San Diego sent: 7:26 PM I found Blue Cross honors my 3 expensive drugs; medicare B does not.
Dr. Jeff sent: 7:26 PM https://pmc.ncbi.nlm.nih.gov/articles/PMC11116681/ At times rib biopsy can be performed. (Ed: This citation is grossly misleading and should not be considered evidence that a rib Bx is possible in a fragile location: rd)
Len Sierra sent: 7:27 PM Medicare B does not cover any drugs
Wes – San Diego sent: 7:27 PM True, so it would be me adding B, D.
George Wesoloski sent: 7:29 PM My Alt & AST are three times normal. Believe it is due to the Rheumatoid Arthritis drugs, Methotrexate & Arava. Developed a serious body itch & now on Claritin and Zantac for the itch & ceased the Arthritis drugs. Waiting for another blood test in a month.
AnCan – rick sent: 7:30 PM As I said Dr. Jeff – anecdotally most docs will NOT biopsy a rib spot. Especially if it is round the front. It depends where the spot is. You posted a case study, so that is also anecdotal.
Len Sierra sent: 7:40 PM Neuroendocrine biomarkers: Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, synaptophysin positive. DLL3 (Delta-like Ligand 3) is positive in 76% of NEPC.
St. Pete High School’s Senior Service Project Supports AnCan
This past December, the seniors from St. Petersburg High School’s International Baccalaureate program came together to make a difference through their annual senior service project. The students organized a community run to raise funds for AnCan.
The event was a success, with over 50 participants joining in to support the cause. Together, they raised over $700 to contribute to AnCan’s mission of empowering people through connection, support, and shared experiences.
“We find pride and joy in the fact that we could bring our community together for a run and spread awareness about the great efforts of the AnCan foundation,” said one of the organizers.
AnCan is grateful to the students, participants, and everyone who contributed to this incredible effort. Initiatives like this not only provide financial support but also help spread awareness about the importance of peer-led support.
Thank you, St. Pete High School IB seniors, for your hard work, creativity, and commitment to making a difference.
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.
