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, July 29, 2025
MARKET RESEARCH STUDIES: AnCan has a new market research opportunity for you and your Care Partners through our collaboration with Pinpoint Patient Recruiting. It’s seeking to fill 2 different studies with:
Men &/or Carers – both can apply but with separate applications
Must be US based
Men confirmed hormone sensitive with or without mets OR castrate resistant
Active treatment is NOT required – you can be on a drug holiday
You’ll intially earn $125 for a 60-minute virtual online interview. Researchers want to understand your experiences living with prostate cancer and your opinions on treatment and care.
There’s another $50 if you provide evidence from your medical records of your confirmed diagnosis – screenshots suffice.
If you opt in for a second interview, another $125 is available. Your Carers also have the opportunity to earn $125 for a 60 minute interview. By our reckoning, that’s upto $425!
The researchers are particulalry interested in reaching diverse minorities – especially African Americans and Hispanics.
If you’ve already been contacted directly by Pinpoint from a prior study and been accepted, please let us know at rd@ancan.org.
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: Is radiation worse than surgery in intraductal? (bn)
Topics Discussed
Intraductal, but leaning toward radiation because of comorbidities and surgical risks; hot-flash news flash: a salute to Dr. Wassersug and his ADT book; cancer doc waiting for a 1.0 PSA is less scary than it seems; anyone have heart problems on abiraterone? (answer: lots of us); Marc V. awaits liver biopsy results and mulls future steps; bloodwork problems go away when he switches to one abi with a meal from two abis without; hopes for spotting recurrence early with a blood test for residual disease — but it’s still early in the pipeline; actinium trial turns him down but is vague about why; lymph nodes light up PSMA PET, but MRI says nothing’s there; liver and spleen mets appear to be a false alarm; our disagreements with Mayo’s Dr. Kwon; happy about monthly results that show his PSA still dropping; anyone know how to get back on your feet after chemo’s Mack truck takes you down?
Chat Log
Hank Zajic Springfield VA · 6:32 PM
Deville was my Radiation Oncologist. He works out of SiIbley. First rate!
Hank Zajic Springfield VA · 7:06 PM
Richard Wassersug’s book is Androgen Deprivation Therapy 3rd Edition, published in 2023. You can also find him/ his work at the website LifeonADT. I found the book (and his course) an excellent “manual” that describes the therapy approaches, side effects and practical things to help get ahead of impacts. For a novice, looking down the barrel for the first time (so to speak) I found it a terrific resource.
AnCan – rick · 7:09 PM
Dr. Javid Moslehi https://www.ucsfhealth.org/providers/javid-moslehi
Jim Marshall, Veteran, Alexandria, VA · 8:11 PM
When esophogeal cells are damaged, they are replaced by Stomach cells. Known as Barrett’s Esophagusgiving at 15% chance of developing cancer in the throat. Jim
AnCan – rick · 8:39 PM
Embr watch https://embrlabs.com/
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 21, 2025
MARKET RESEARCH STUDIES
AnCan has two new market research opportunities for you and your Care Partners with Pinpoint Patient Recruiting to earn up to $425.
Study #1
• Non-white Men &/or Carers – both can apply but with separate applications • Must be US based • Men confirmed hormone sensitive with or without mets OR castrate resistant • Active treatment is NOT required – you can be on a drug holiday
Study #2 – recruiting for survey in September • Men &/or Carers – both can apply but with separate applications • Must be US based • Men confirmed hormone sensitive with or without mets OR castrate resistant • Active treatment is NOT required – you can be on a drug holiday
$125 for a 60-minute virtual online interview with another $50 for providing evidence from your medical records of your confirmed diagnosis – screenshots suffice. If you opt in for a second interview, another $125 is available. Your Carers also have the opportunity to earn $125 for a 60 minute interview.
Please visit pinpointpatientrecruiting.com/pc-interview-ancan2025 or contact Brittany Weathersbee at brittany@pinpointpatientrecruiting.com. If you’ve already been contacted directly by Pinpoint from a prior study and accepted, please let us know at rd@ancan.org.
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: Pain meds should not be a pain! (rd)
Topics Discussed
Fatigue persists despite testosterone increasing and normal cortisol levels; advanced cancer spreads including to liver; using pain meds; identify the cancer before talking treatment and trials; Chuck Ryan gets NJ gold star for holding Gent off treatment; heart issues indicate apalutamide and more cardio follow up; 2x Pluvicto drives PSA down from 0.6 to 0.2 – consider holding treatments back; recurrence 3 mos post salvage RT requires GU MO’s opinion; Newwbie – triplet therapy brings PSA from 4900 to 6 – but GU MO required as QB.
Chia seeds are a complete protein Complete proteins are those that contain all nine essential amino acids. Essential amino acids are those that our bodies cannot create and must be obtained through food. These include histidine, isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine.
John A sent: 5:36 PM
nuts and seeds also for protein
gary peters sent: 5:55 PM
The FDA approved (1/25) a new non-opioid pain medication called suzetrigine, marketed as Journavx. This medication is designed to treat moderate-to-severe acute pain in adults by targeting pain signals in the peripheral nervous system, rather than acting on the brain like opioids.
kang sent: 5:55 PM
Lorigerlimab MacroGenics
Len Sierra sent: 5:57 PM
Lorigerlimab is an investigational, bispecific antibody targeting PD-1 and CTLA-4, designed to enhance immune checkpoint blockade in the tumor microenvironment.
Ben Nathanson sent: 5:59 PM
Gary, it’s approved for specific pain that may not be applicable to cancer patients: short-term moderate-to-severe acute pain (trauma or post-op) only —not chronic pain. But it’s an interesting new approach that’s likely to get plenty of company. The benefit is that you get pain relief plus alertness.
Mike sent: 6:02 PM
psa for years between 6-10, prostate biopsy 1.5 years ago negative, just received ExoDx urine test result =53. Any suggestions? Urologist recommends 25 core biopsy. Thanks
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 15, 2025
Earn up to $425… but move quick!
AnCan has a new markert research opportunity for you and your Care Partners through our collaboration with Pinpoint Patient Recruiting. It’s seeking to fill 2 different studies with:
• Men &/or Carers – both can apply but with separate applications
• Must be US based
• Men confirmed hormone sensitive with or without mets OR castrate resistant
• Active treatment is NOT required – you can be on a drug holiday
You’ll intially earn $125 for a 60-minute virtual online interview. Researchers want to understand your experiences living with prostate cancer and your opinions on treatment and care. There’s another $50 if you provide evidence from your medical records of your confirmed diagnosis – screenshots suffice. If you opt in for a second interview, another $125 is available. Your Carers also have the opportunity to earn $125 for a 60 minute interview. By our reckoning, that’s upto $425!
There are 30 slots available so move quickly. To see if you qualify for the study or to get more information, please visit pinpointpatientrecruiting.com/pc-interview-ancan2025 or contact Brittany Weathersbee at brittany@pinpointpatientrecruiting.com. All information and responses will remain confidential. If you’ve already been contacted directly by Pinpoint from a pror study and been accepted, please let us know at rd@ancan.org.
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: PSMA PET finally lights up at PSA of 20 — there may be a lot it’s not showing (bn)
Topics Discussed
Exactly one lymph node removed — who does that?; worred about surgeon who shrugs off pathology findings; since prostatectomy in 2001, he’s been on and off the ADT train — time for monotherapy?; keeping extremities iced during chemo — is it effective?; PSMA PET doesn’t light up till PSA reaches 20 — could his cancer be a variant type?; what’s this rise in alkaline phosphatase — and what does the test show; with an initial PSA of 325, he did the work and is now down to 0.09
Chat Log
AnCan Barniskis – rick · 6:04 PM
Go To support 877 582 7011
AnCan Barniskis – rick · 7:04 PM
Dr. Jonathan Epstein https://advanceduropathology.com/ pathology 2nd opinion
AnCan Barniskis – rick · 7:05 PM
Dr. Ming Zhao https://profiles.mountsinai.org/ming-zhou pathology 2nd opinion
Jim Marshall, Alexandria, VA · 7:06 PM
Fairfax Hospital, VA is part of the INOVA Healthcare system.
AnCan Barniskis – rick · 7:27 PM
Was MN Onc who raised Barry to triplet, not Kwon.
Barry Blomquist · 7:29 PM
Yes I pretty sure it was Dr Antonarakis and MO after he sent them email.
AnCan Barniskis – rick · 7:45 PM
https://www.lifeonADT.com
Jim Marshall, Alexandria, VA · 7:48 PM
Leaving for the Vetrerans SUpport Group. Jim M.
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.
