Hi-Risk/Recurrent/Advanced PrCa Video Chat, Dec 9, 2025
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
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Alexander Lalov, Pendleton, IN
sent: 4:13 PM
Is the recording going to be made public?
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Eric James; Tyler TX
sent: 4:13 PM
yes, on Youtube
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AnCan – rick
sent: 4:14 PM
All our Recordings are posted on YuTube – over 700
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Larry (Veteran, Alaskan)
sent: 4:16 PM
Check your camera shutter at the top of your screen
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AnCan – rick
sent: 4:19 PM
877 582 7011 GoTo
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Jeff Marchi – San Francisco
sent: 4:28 PM
free genetic testing PROMISE PCa Germline Project
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AnCan – rick
sent: 4:31 PM
Tx Jeff – Doug has germline already
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Jeff Marchi – San Francisco
sent: 4:32 PM
ok i hear you
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Alexander Lalov, Pendleton, IN
sent: 4:34 PM
As far as I know PROMISE do Hereditary Cancer Test Only.
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AnCan – rick
sent: 4:35 PM
Yes Promise is only germline
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AnCan – rick
sent: 4:35 PM
Gents – I have poor bandwidth today . There’s an interent issue here.
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AnCan – rick
sent: 4:47 PM
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Jim Marshall, Veteran, Alexandria, VA
sent: 4:59 PM
When you ask for the Promise test, do not specify any doctor. It is between you and Promise. Jim
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Jay in MN
sent: 5:10 PM
👍
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AnCan – rick
sent: 5:15 PM
Dr. Jonathan Epstein – https://advanceduropathology.com/ Tel: 516-760-2037 jepstein@imppllc.com
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AnCan – rick
sent: 5:16 PM
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.
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Alexander Lalov, Pendleton, IN
sent: 5:27 PM
Bary, would you post the web address, please
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Alexander Lalov, Pendleton, IN
sent: 5:28 PM
Oh, Withing is the name. Thnx!
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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.
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Larry (Veteran, Alaskan)
sent: 5:28 PM
YMCA “Livestrong” program is designed for cancer survivors. Look it up
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Larry (Veteran, Alaskan)
sent: 5:29 PM
Government funded, so it is free and includes YMCA membership for the 12 week duration,
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AnCan – rick
sent: 5:29 PM
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Eric James; Tyler TX
sent: 5:30 PM
Yes, muscle mass may be increased, if you haven’t already been doing resistance training.
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Larry (Veteran, Alaskan)
sent: 5:32 PM
Lupron has been demonstrated to cause weight gain. I am not sure about lymphedema, though.
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Larry (Veteran, Alaskan)
sent: 5:33 PM
Ask about going on an ADT “Vacation”. Stop the ADT and closely observe the PSA response.
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AnCan – rick
sent: 5:34 PM
rick rd@ancan.org dr. john dr.john@ancan.org
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Larry (Veteran, Alaskan)
sent: 5:34 PM
If you go on ADT vacation, do it with the supervision of your oncologist.
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AnCan – rick
sent: 5:35 PM
Larry – he needs to find a new oncologist
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Eric James; Tyler TX
sent: 5:49 PM
Did Dr. Epstein provide any other details? % 4 vs %3? Invasion, intraductal, etc.?
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AnCan – rick
sent: 5:56 PM
Check Prostox test’ also watch our Prostox webinar. https://ancan.org/event/special-presentation-what-if-you-could-predict-the-risk-of-radiation-effects-prostox-and-beyond/
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AnCan – rick
sent: 5:58 PM
RT machine is MR-Linac
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Steve Roux, North Michigan
sent: 6:07 PM
sorry guys – I need to bug out.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Nov 3, 2025
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)
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AnCan – rick
sent: 6:13 PM
877 852 7011 GoTo help
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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.
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Jeff Marchi – San Francisco
sent: 6:23 PM
Jay from Miami raised his hand about intraductal
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Jim K
sent: 6:23 PM
Thumbs up.
No. Vietnam started to wind down by the time I hit 18, if I recall correctly.
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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
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Jim K
sent: 6:25 PM
Yes, no mic, but can hear the members.
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Jim Marshall, Veteran, Alexandria, VA
sent: 6:26 PM
Think Jim K mike may work. Jim M
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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.
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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
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Len Sierra
sent: 6:32 PM
Steve R. reports this: Urology Times has a brief video on diagnosis and treatment of Intraductal. https://www.urologytimes.com/view/dr-miron-on-the-treatment-of-intraductal-carcinoma-of-the-prostate
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Jeff Marchi – San Francisco
sent: 6:38 PM
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AnCan–John A
sent: 6:41 PM
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AnCan – rick
sent: 6:51 PM
Jim Marshall, Veteran, Alexandria, VA
sent: 7:06 PM
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
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Frank Ciambra
sent: 7:06 PM
good night
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Mark N
sent: 7:12 PM
Dr. John, I just sent you Dr. Epstein’s biopsy results. Thank you
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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
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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.
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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
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Steve R.
sent: 7:18 PM
Also per AI, MSI High can be detected by liquid biopsy https://pmc.ncbi.nlm.nih.gov/articles/PMC10098262/
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Len Sierra
sent: 7:20 PM
Concordance between liquid TMB and tissue TMB can vary if tumor is not shedding into the blood.
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Gary Martin
sent: 7:23 PM
Thank you very helpful information.
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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
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Jon McPhee Toronto
sent: 7:31 PM
What duration of doublet is recommended?
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Jim Marshall, Veteran, Alexandria, VA
sent: 7:32 PM
Amount of time answer …. It Depends on many factors.
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Bob Schwartz U.S.N. Venice, FL.
sent: 7:35 PM
Congrats Capt. Jim, 39+ months is GREAT!
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Jim Marshall, Veteran, Alexandria, VA
sent: 7:37 PM
Eligard & Lupron is the exact same drug with a different method of delivery. Jim
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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!!
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AnCan – rick
sent: 7:42 PM
Orgovyx
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Hank Zajic Springfield VA
sent: 7:48 PM
I have to go. Thank you everyone.
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dan-s
sent: 7:51 PM
I have to go Gents… thanks for another great session
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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.
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Bruce Schrimpf
sent: 7:59 PM
Must run. Thanks for a great session! I will see Capt. Jim tomorrow.
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Joe Comanda (Philadelphia)
sent: 8:00 PM
Need to take off. Will hold my question for another time.
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Eric Curtis
sent: 8:05 PM
Gotta run. Appreciate the info
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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.
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Thomas Matica
sent: 8:08 PM
Thanks, gents. Good night, sleep tight.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 12, 2025
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/
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: 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
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
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Scott Romsos – Ely, NV sent: 5:14 PM
It is all good Mr Nathanson, no worries.
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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.
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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.
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Ben Nathanson sent: 5:38 PM
John G — Having a list of exercises can help. “Exercise Recommendations for Prostate Cancer” from Fred Hutch: https://www.fredhutch.org/content/dam/www/research/institute-networks-ircs/institute-for-prostate-cancer-research/Exercise-Recommendations-for-Prostate-Cancer-English.pdf
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David Muslin sent: 5:53 PM
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.
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Richard Wassersug (Vancouver) sent: 6:03 PM
Sorry, got to go. richard.wassersug@ubc.ca
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Frank Ciambra sent: 6:04 PM
goodnight sorry
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Julian – Houston sent: 6:22 PM
goodnight all
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rd sent: 6:24 PM
Hi Folks…. tech issues and VSS obligations.
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Ancan – Bill sent: 6:24 PM
Nice to see you again RD.
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rd sent: 6:36 PM
Mark Finn GRHS tried for AMG509
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dan, alexandria sent: 6:48 PM
Is there a time limit if you are on Reclast?
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John A sent: 6:49 PM
same drug, Dan, zoledronic acid
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AnCan – rd sent: 6:50 PM
Probably the same 5 years
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Jack sent: 6:59 PM
That relieves me. Thanks David!
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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.
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Thomas M sent: 7:22 PM
The zoledronic acid vs denosumab discussion was right on point for me. Thanks for everyone’s input.
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David Muslin sent: 7:25 PM
I have to go. Thanks all
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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.