Hi-Risk/Recurrent/Advanced PrCa Video Chat, Dec 23, 2025
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AnCan thanks the following sponsors for making this recording possible: 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
HEADSUP – long session
Editor’s Pick: AFib may dictate use of ARSI – 2nd line anti-androgen
Topics Discussed
Dublin EI Newbie needs a GU MO; … and so does 85 yr old from Eau Claire, WI who’s Mayo doc has lost the way; roller coaster metastatic Gent starting with Kishan at UCLA; almost through RT, and finds germline CHEK2; doing well and very thankful to AnCan; germline BRCA2 man not gettiing SoC in Mississippi; great chemo results – now explore debulking; should a man with Afib be on abiraterone?; waiting for PSMA scan after 3x Pluvicto; fatigue & brain fog from abi doublet; avoid 6-month depot LHRH; Dr. Szmulewicz recommends debulking; Florida vacay interferes with treatment plan; 2nd opinion on Bx required; SBRT vs IMRT for man with urinary issues
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
Jeff Marchi – San Francisco sent: 6:49 PM
Gotta run. Merry Christmas and happy new year to all.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Dec 15, 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: Finishing 10x Pluvicto; and, following up post-surgery for BRCA germline Gent
Topics Discussed
Endorsing AnCan; 10 rounds of Pluvicto – with a break after 6; low dose estrigen enquiry; Newbie want to know when to intervene on recrrence post-surgery; Tempus report shows PTEN and more; cribriform favors radiation over surgery; time for another PSMA scan; IHT or mono daro – beware of gynecomastia; can reduciing daro dose loer fatigue?; more on cribriform and RT; debulking primary tumor post chemo; BRCA germline Gent wondes when to intervene with RT post RP – and if to include HT
Chat
Jeff Marchi – San Francisco
sent: 6:12 PM
friday this week
Thomas Matica
sent: 6:14 PM
Glad to hear Peter Kafka is doing well.
Stan Friedman
sent: 6:29 PM
after 5 sessions, my psa is now undetectable
Mark N
sent: 6:30 PM
What is the drug that was just discussed?
Larry Schuller – Alaska
sent: 6:31 PM
Mark, Pluvicto work the same way imaging for PSMA-PET scans do. Instead of just giving an image of where the cancer is, it delivers a higher dose that is therapeutic
Mark N
sent: 6:31 PM
Thanks!
AnCan–John A
sent: 6:33 PM
Lee–still undetectable psa?
Larry Schuller – Alaska
sent: 6:34 PM
Many side effecs of standard ADT is actually caused by estradiol deficiency (which is caused by the absence of testosterone). This deficiency is the same as what causes osteopoosis in post-menopausal women.
Larry Schuller – Alaska
sent: 6:35 PM
Men normally have between 15 and 50 levels of estradiol
Larry Schuller – Alaska
sent: 6:36 PM
Breast growth and nipple sensitivity is a side effect of standard ADT too, but at a lower incidence than with estradiol.
Jerry G, Brighton, MI
sent: 6:39 PM
I’ll add support for higher dose estradiol, for me in the absence of testosterone. My osteopenia cleared up, and I am now in the normal range for bone density. I have been on permanent ADT for almost 7 years now, and estradiol for just over 6. My PSA is still undetectable
Larry Schuller – Alaska
sent: 6:49 PM
Tom Miller’s Lymph nodes?
Lee Baylin, Baltimore
sent: 6:52 PM
Dr. John, I’m still undectable.
AnCan – rick
sent: 6:59 PM
Curtis DeVille an Channing Paller at Sibley
Bob Schwartz U.S.N. Venice, FL.
sent: 7:00 PM
Once again, many thanks to the Unknown Anonymous Benefactor, who is matching donations to AnCan. Please know that your kindness is very much appreciated. Good meeting as usual, unfortunately have to go early.
Gedatolisib is a PI3K/AKT/mTOR (PAM) pathway inhibitor showing promising early results in clinical trials for metastatic castration-resistant prostate cancer (mCRPC), often combined with AR inhibitors like darolutamide, targeting the PI3K pathway which is frequently altered in advanced prostate cancers, especially with PTEN loss, to control cell growth and survival, with studies aiming to find optimal doses and demonstrate improved survival and response rates.
Larry Schuller – Alaska
sent: 7:26 PM
Get a baseline bone density, too
Larry Schuller – Alaska
sent: 7:29 PM
Exercise program. A healthy body withstands the rigors of treatment better
RJ Smith (Seattle)
sent: 7:30 PM
Along with all the other tests, PROSTOX might help to know if you are prone to long-term side effects from the radiation. Most people aren’t. Like Rick said, though, if you’ve decided on radiation–might just take go for it. 😉
Steve L
sent: 7:44 PM
By the way, My immunotherapy induced Pulmonary embolism cleared this summer after about 12 months. I started feeling better immediately. They have pulled me off Eliquis. I am back to scuba diving. Currently feeling very good.
AnCan–John A
sent: 7:46 PM
Noted, Steve. that’s good
Bruce Schrimpf
sent: 7:55 PM
Again A very good discussion! Should I not see you before, Merry Christmas!
Re: Second reads on PSMA-PET scan. I had a scan at Fred Hutch Cancer Center and the report was MUCH MORE detailed than the scan I had at my local imaging center. So, Second reads on the original scan imaging is valuable, in my opinion.
Larry Schuller – Alaska
sent: 8:17 PM
On top of that, the written report is only words. Actually showing the imaging to my surgeon saved me an extra surgery. Not mentioned on the report’s text wat that a reservoir from a prior surgery would complicate a robotic prostatectomy. It turns out that if a robotic had been started, it would have had to have been aborted, necessitating a subsequent open procedure.
Larry Schuller – Alaska
sent: 8:18 PM
Show your original imaging to your doctors, especially if approaching surgery
dan-s
sent: 8:21 PM
Thanks all for another great mtg – I have to leave (up early tomorrow)
AnCan – rick
sent: 8:22 PM
Gents – long posts in the Chat poses a problem when we write up these meetings. There is a limit in You Tube on what we can paste.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Nov 25, 2025
Happy Thanksgiving to all our AnCan particpants, especially if not on our mailing list. We’d have to ask why not, when you can sign up at https://ancan.org/contact-us/ and recive our great Newsletter/Reminder.
CORRECTION (rd)
I want to apologize and make a correction for someting I said in last Tuesday’s support group. At the end we were discussing adding a couple of Pluvicto treatments to Metastatic Directed Therapy. However this was for a man who had progressed rather than having just been diagnosed oligometastatic as in the LUNAR trial reported in the Reminder last week. I mentioned he might be eligible in the USA as Pluvicto is approved for metastatic hormone sensitive prostate cancer. This is not the case, and I misspoke. PSMAddtion was positively reported for mHSPC use at the recent ESMO conference – thank you Dr. Paul for this link. To date, it has not been FDA approved. I knew of the trial and got ahead of the game; although I was confusing it with PSMAFore.
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: Robust discussion around testoterone early on – and thoughts about combining therapies at the end.
Topics Discussed
how long to stay on HT leads to rich discussion on testosterone; did salvage cryo bring his PSA down? And he needs a GU MO QB; cupplementing T with Clomid is new to AnCan; casting around for intial treatment; ststarting Prolia that’s NO lifetime drug; tachycardia and AFib; recovering from 6x dicetaxel; b est treatment options for Stage T3 ; holding steady; allowing PSA to rise to find source of oligo-Mx; can we add Pluvicto to MDT later in the cycle?
Chat
Frank Ciambra sent: 5:10 PM
my wife is a nurse working in cardiology ,im going to share this witth her
John M – Chicago sent: 5:11 PM
Don I am doing great. Feeling stronger. Exercise is the KEY. Everything progressing according to plan. I’m going to my sons house to be with him, his wife and my grandson. What about you?
Jim Marshall, Veteran, Alexandria, VA sent: 5:27 PM
AFib – Join the club with others. Jim Marshall
Julian – Houston sent: 5:29 PM
I had AFIB then had cardiac ablation in March 25 and then it went away!
Jim Marshall, Veteran, Alexandria, VA sent: 5:30 PM
AFib is Mutually exclusive with Vitamin K. Jim Marshall;
Jim Marshall, Veteran, Alexandria, VA sent: 5:32 PM
Have AFib and take Blood Thinner, Pradaxa, Metropolol Tartrate and a Statin – Pravastatin. Jim Marshall
AnCan – rick sent: 5:33 PM
abir-A-terone
Jim Marshall, Veteran, Alexandria, VA sent: 5:34 PM
Lupron/Eligard and Abi have warnings for those who have heart issues. Jim Marshall
Alfredo in Houston, TX sent: 5:37 PM
Vitamin K potentially interferes with anticoagulants (blood thinners). And you also get vitamin K in your diet from leafy greens. Everyone please remember to discuss ALL supplements with your physician AND pharmacist.
TonyFig sent: 5:39 PM
There is a strong link between sleep apnea bringing on A-Fib.
Alfredo in Houston, TX sent: 5:41 PM
I am being called to supper now, so I must leave — but not before wishing a Happy Thanksgiving to everyone. Good night
AnCan–John A sent: 5:48 PM
stereotactic body radiation therapy
Julian – Houston sent: 5:53 PM
Happy Thanksgiving to all!!!
TonyFig sent: 5:56 PM
Blood Thinner – a naturopath approach for anticoagulation can be quite risky as it may not present consistent and reliable levels to address A-Fib episodes or other cardiac issues. I discussed this with cardiac surgeons as well as a heart biologic replacement valve supplier. I would not take the risk of naturopath solution for this application.
Nattokanese, Vit E, Ginger, Omega Oils in high dose, Cayene Pepper Tumeric, etc
John M – Chicago sent: 6:04 PM
Have a great Thanksgiving everyone!
Dennis Correia sent: 6:07 PM
Happy Thanksgiving all
Barry Blomquist sent: 6:07 PM
Have to jump – Happy Thanksgiving to everyone and thank you all!
dan-s sent: 6:09 PM
Thanks all – Happy Thanksgiving
Jerry Pelfrey sent: 6:10 PM
Time to go. Everyone have a wonderful Thanksgiving.
Larry (Alaska) sent: 6:14 PM
Suggesting Pluvicto as first-line treatment instead of ADT as first-line?
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Nov 17, 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: Assessing recurrence and IDC-P repeat this week.
Topics Discussed
Signs of recurrence after 8 years; lymphedema and RT; does Newbie understand his proposed RT – is it optimal?; signs of BRCA2 recurrence post RP; doublet or triplet for denovo Mx Gent with IDC-P; explaining types of HT treatment; likely PSMA negative Gent challenged to confirm recurrence; PSA spike & fall for IHT man; fatigue after ARSI is added; estradiol supplement experience; pushing exercise helps mitigate HT; IDC-P teatment challenge – RP vs RT; bisphosphonate vs denosumab as bone strengthener
Chat
Larry (Alaska)
sent: 6:17 PM
Was there a decipher test? indicating aggressiveness?
Larry (Alaska)
sent: 6:24 PM
I wonder how old those NIH studies Barbara and Joe are reading?
while that email may work I got a different address
Jeff Marchi – San Francisco
sent: 6:53 PM
Send an email to Ming.zhou@mountsinai.org to inquire about a second opinion and ask for his specific instructions for the process.
Jim Stewart Reno, NV
sent: 7:07 PM
have to sign off, thanks all and have a good night
Jon McPhee Toronto
sent: 7:33 PM
Have to go. Thanks for the meeting.
Larry (Alaska)
sent: 7:37 PM
AI just told me that 1- micro-ultrasound does not require a contrast dye and uses equipment that is more accessible than MRI. 2- Other than that, they seem to be seen as complementary rather than competing. MRI is better at detecting some lesions and micro-ultrasound better at others.
Stan Friedman
sent: 7:48 PM
Sorry. Need to sign off. Will update on my pluvicto treatments next week. Thanks.
Jim Marshall, Veteran, Alexandria, VA
sent: 7:53 PM
Chocolate is a veggie!!!!!! Jim
TonyFig
sent: 7:53 PM
Rick will get a 3 knot boost when rowing with caffeine
St
sent: 7:56 PM
my experience has been that the fatigue comes mainly from lack of estrogen, not from the lack of T. An E2 patch helped me enormously
Bob Y. Los Angeles
sent: 7:57 PM
I had a couple of short questions, but I have to leave now. I’ve had an MRI and a biopsy, Gleason 4+5. I’m waiting to get a PET Scan on Dec 5th. I was hoping to get the PET earlier and so I made an appt with a urologic oncologist, Timothy Daskivich for a 2nd opinion on Nov 26th. Now I’ll be going to see him without being able to show him the PET results. I’m wondering if that appt is still valuable.
Barbara and Joe
sent: 7:59 PM
why do you have to take something as toxic as prednisone with abiraterone?
Don Rogers
sent: 8:00 PM
got to go
Eric James; Tyler TX
sent: 8:00 PM
Barbara and Joe: side effects of abiraterone. Your body stops producing cortisol on abiraterone so it needs to be replaced with something similar.
AnCan–John A
sent: 8:00 PM
Barbara and Joe the body absolutely needs the corticosteroid.
Jim Marshall, Veteran, Alexandria, VA
sent: 8:01 PM
Abi stops the Adrenal Glands which makes Cortisol. Presidnsone makes the Cortisol.
Jim Marshall, Veteran, Alexandria, VA
sent: 8:02 PM
One needs Cortisol. Jim Marshall
AnCan – rick
sent: 8:10 PM
Estradiol seminar w. Steve S https://ancan.org/talking-estradiol-e2-for-recurrent-and-advanced-prostate-cancer/
Keith H. (southern Oregon)
sent: 8:15 PM
thanks for all this, I got to go, but grateful for expertise and this group.
Thomas Matica
sent: 8:21 PM
Short update. Can wait till next meeting. Got to run. Thanks everyone.
Barbara and Joe
sent: 8:23 PM
I hope it’s a low dose of predisone — it just about killed my mother with her rheumatoid arthritis.
Jim Marshall, Veteran, Alexandria, VA
sent: 8:23 PM
5mg of Prednisone is used. Jim M
Jim Marshall, Veteran, Alexandria, VA
sent: 8:24 PM
Although once you stop it one still should taper off versus Cold Turkey. Jim
Steve White
sent: 8:28 PM
Have to drop…thanks again
Alfredo in Houston, TX
sent: 8:35 PM
I must drop off now, thank you everyone; stay well.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Nov 11, 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: Can abiraterone impact your hearing?
Topics Discussed
Newbie’s uro pushes surgery against the odds; abi Gent back on prednisone – no harm, no foul; bladder clots resolved and catheter removed – but watch the heavy lifting; hyperbaric treatment for RT cystitis; treatment plan is durable; more bladder clots during Pluvicto; PSA 435 to 0.12 after 6x chemo; alcohol + LHRH = liver problems; moving apalutamide from a.m. to p.pm. helps; could abi effect hearing?; triplet Gent seeks solid 2nd opinion; for how long can you take bone strengtheners?; small porotid tumor requires action; Scott Adams tries bladder cancer drug with Pluvicto
Chat
Keith sent: 4:10 PM
I’m new to this group and accessing: I’m Keith in Oregon–I can’t get my camera to work, yet. I can hear all you fine, thankyou. I will work on getting it so you can hear me and see me. thank you!
