AnCan thanks the following sponsors for making this recording possible: Novartis, 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: Unrelated Newbies from either Coast have almost identical issues.
Topics Discussed
Our two Newbies are ‘twins’ – both denovo Mx on the cusp between high and low volume mets, and both with less experienced GU med oncs; 4x chemo down doing well with a full head of hair!; finding an exercise program; contacting NCI; Orgovyx trumps a 6-mo. depot shot; early radiation cystitis; finding Dr. E; with heart history, Orgovyx or Lupron?; discussing NCI trial & adaptive therapy
Chat
AnCan – Rick sent: 5:55 PM
Technical assistance 877 582 7011
AnCan – Rick sent: 5:56 PM
Playing the Long Game https://www.youtube.com/watch?v=v4jzyAeOtNI
Great Meeting again gang! I’m out – time to walk the dog.
michael perillo sent: 7:21 PM
Hi all, need to leave the meeting. Obviously have quite a bit of work to do re possible change to orggovyx, possible use of radiation, chemo or other triplet approach, possible somatic testing as well as second opinion. Will follw up on future meetings. Thanks Michael
AnCan–John A sent: 7:21 PM
Ok Michael, welcome
Eric James; Tyler TX sent: 7:25 PM
The weight you use is relative to your strength. Weight is usually selected based on how many reps you are to do.
Steve Schuler (Go Seahawks!) sent: 7:31 PM
Did you have doubling time data before going on the ADT?
The reason I ask is that there will be a lag after going off ADT before the DT data will be reliable
Eric James; Tyler TX sent: 7:33 PM
The NCI doc presentation has some overlap with Adaptive Therapy
Steve Schuler (Go Seahawks!) sent: 7:38 PM
Orgovyx will restore your T faster once you get off it
RJ Smith (Seattle) sent: 7:48 PM
ChatGPT, etc.) is not a GU Med Onc. Not even a urologist or MD of any kind.
Steve Schuler (Go Seahawks!) sent: 7:56 PM
gotta drop, love to hear more discussion of the NCI YT video at some point. If that happens after I drop, I’ll view the recording of this session later
Richard B, Silver Spring, MD sent: 8:02 PM
I need to step away due to an early start tomorrow morning. Nothing new to report but more assessments this week. So possible report next week. ‘Appreciate all the conversations. Good night.
dan-s alexandria sent: 8:03 PM
gotta go, gents…. good conversations.
Bruce Schrimpf sent: 8:11 PM
As always it was very informative. Thanks for being “there” for those of us struggling through!
Hi-Risk/Recurrent/Advanced PrCa Video Chat, 1/13/26
AnCan is closing out its Annual Fundraising Campaign. If you haven’t donated yet, consider the priceless value we bring . Please donate – especially if you watch our recordings and are not on our Mailchimp list. https://ancan.org/donate/
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
Editor’s Pick: Denovo metastatic BRCA2 Newbie stumps us all!
Topics Discussed
High volume denovo Mx Gent with BRCA germline can’t fiing a treatment that controls his T or his PSA; starting IMRT along with constipation; 2nd docetaxel easier with less fatigue than the first; liver returning to normal after 6x docetaxel; so back to full daro dose; T returns within 3 months of stopping 12 mo of orgovyx; BCBS turns down Prolia for -2.7 osteoprosis – did doc ask for wrong denosumab; ‘ciiling cap’ discussion; opting for new Plan Ds (drugs); Inherited Mutations discussed;
the relatively long half-life of injectable testosterone undecanoate means its effects can last for weeks, but probably not months
Jeff Marchi – San Francisco sent: 5:08 PM
has anyone had VMAT radiation?
Gary Martin sent: 5:09 PM
I had that prostate inflammation first and second round docetaxel. my oncologist did not know cause. Suggested UTI, which have the same symptom I had in round 1 and 2. I figured it was chemo working on prostate.
Julian – Houston sent: 5:13 PM
Jeff, I have had VMAT radiation.
Jeff Marchi – San Francisco sent: 5:13 PM
how well did it work? any side effects?
Jack sent: 5:14 PM
Enzalutamide blocks androgen binding which disrupts the negative feedback loop that normally supresses testosterone this leads to compensatory increases in LH and subsequent increases in testosterone
Julian – Houston sent: 5:14 PM
It worked quite well – I have been in remission for over 5 years. I am now having some radiation effects but not severe
I had insurance denial of Prolia (bone strengthening)- anyone encounter denial of Prolia?
Julian – Houston sent: 5:34 PM
Aetna no longer approves Prolia.
Larry (Alaska) sent: 5:36 PM
Bone loss is largely drivenby estradiol deficiency (just as it is in post-menopausal women). Testosterone deprivation also lowers a man’snatural estradiol. A low-dose estradiol suppement can avoid the need for bune-building agents. Agents which are expensive and bring their own set of adverese side effects.
Larry (Alaska) sent: 5:43 PM
Calcium + Magnesium:
AI Says: Why Separation Helps Competition for Absorption: High levels of calcium can block magnesium absorption in the intestines, and vice-versa. Optimizing Intake: Spacing them out (2-4 hours apart is a common suggestion) minimizes this competition, allowing your body to absorb each mineral more effectively. When It’s Okay to Take Them Together Multivitamins: If they are in smaller, balanced amounts within a multivitamin, the interaction is usually not an issue. With Food: Taking them with food can also help with absorption and reduce digestive upset.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, 1/5/26
HAPPY NEW YEAR to all AnCan’s YouTube viewers. AnCan is closing out its Annual Fundraising Campaign. If you haven’t donated yet, consider the priceless value we bring . Please donate – especially if you watch our recordings and are not on our Mailchimp list. https://ancan.org/donate/
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 – another long session!
Editor’s Pick:Like London buses, topics come in clusters this week – post-surgery recurrence, and monotherapy daro
Topics Discussed
Recurrence 3+ months post-surgery is confusing given medical reports; sitting on hands post 2017 RRP has dire cinsequences; more rapid recurrence requires PSMA scan for younger Gent; low T post treatment raises question whether to force it castrate; oxybutinin manages hot sweats… ARSI makes no difference; Gent considers going from doublet to mono; recently diagnosed denovo Mx man learns he’s 5+4; should he keep one Pluvicto session in reserve?; get a DEXA scan before starting bone stregthener; can a layman read their PSMA scan?; is he ready for mono daro?; should a FAP (Fibroblast Activation Protein Inhibitor) scan be considered?; PSMA needed as PSA rises post IHT; connections between prostate and thyroid cancer; Gent resumes doublet but doesn’t watch PSA – more concerned with duration?!?
Chat
RJ Smith (Seattle) sent: 6:17 PM
Hey Bob! Infusion tomorrow, so today is a good day. Sucked on a lot of ice for round #2 as you recommended, so mouth/taste was fine. Proctitis (mostly damage from ton of radiation) is pain in the a**, though–quite a bit of pain this time, but no pain today, so I’ll take it!
Bayer Patient Assistance Foundation could provide free Nubeqa (darolutamide) if you qualify. https://www.patientassistance.bayer.us/en/ I am on my third year in the program.
House guest, must go. Thanks to AnCan and Rick D for referral to Dr. Guancial in Sarasota. Had great visit last week. ADT working, PSA May 4.7, today .01, no side effects, Testro 50. Orgovyx working
Larry Schuller – Alaska sent: 7:06 PM
Orgovyx/relugolix pills and Firmagon/degalarix injections are both LHRH/GnRH ANTAgonists. In my opinion, superior to LHRH agonists, Lupron/leuprolide. Bot inferior (again, my opinion and personal experience) to trans-dermal estradiol (see the web site “estradiolinitiative.org” for more information or cantact me directly at ljschulr@alaska.net.
Bob Schwartz U.S.N. Venice, FL. sent: 7:07 PM
Jeffrey Green, you can also get the Embr Wave at Amazon (my wife got mine there).
Jim Marshall, Veteran, Alexandria, VA sent: 7:08 PM
Family commitment have to sign off…Happy New Year everyone
Jim Marshall, Veteran, Alexandria, VA sent: 7:36 PM
My solution for HOT FLASHES at night has been is even if the room is 55, I have a 12″ fan blowing directly on my face. This is done year round.
Paul Schomer sent: 7:50 PM
I am not, no, Jim
RJ Smith (Seattle) sent: 7:50 PM
NTD–will update next week on how Chemo#3 goes (docetaxel infusion tomorrow, fingers crossed).
Thomas Matica sent: 8:07 PM
Leaving the meeting. Thanks to everyone. Happy New Year.
Jim Marshall, Veteran, Alexandria, VA sent: 8:11 PM
Eric – When you are fatigued, go out and exericse despite the body telling you NOT!!!!
S. Datta sent: 8:14 PM
FAPI (Fibroblast Activation Protein Inhibitor)
Larry Schuller – Alaska sent: 8:18 PM
It is not crazy to want your testosterone back. Intermittent ADT can do that and it is showing promise as a tactic. Bipolar ADT (BAT) is a little crazier, but has some promise also. If you want to go wild, check out Dr Robert Gatenby’s work at Moffit in Florida. Intersesting stuff there.
Jay Mills Chatanooga- Though I didn’t follow the whole conversation, I heard you say something to the effect of, “I may have mets all over the place, in addition to what shows on PSMA.”
Barry Blomquist sent: 8:28 PM
Have to jump – thanks everyone. Happy New Year
Eric Curtis sent: 8:30 PM
Thanks all – gotta go
Jeffrey Green sent: 8:31 PM
Got to start winding down here. Thanks for all you guys. See you next time.
Len sent: 8:34 PM
Source is AI: Bidirectional Risk: Men diagnosed with thyroid cancer have a roughly 28% to 30% higher risk of later being diagnosed with prostate cancer compared to the general population. Conversely, men with prostate cancer are more likely to be diagnosed with thyroid cancer.
Robert sent: 8:35 PM
Thanks Len. I read the same thing.
dan-s sent: 8:49 PM
Thanks all… another good session. Have to sign off for the evening. Happy New Year…
Jay T in MN sent: 8:50 PM
My hospital was charging the insurance company about $20,000.
gary peters sent: 8:50 PM
I did not know this about thyroid C and PC. Thank you.
Jon McPhee Toronto sent: 8:50 PM
Do a PSA test once a month. Cheap. PSMA/PET is expensive and harder to get.
Jay T in MN sent: 8:51 PM
I “only” had to pay $1000 for my portion of PET PMSA
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Dec 23, 2025
AnCan is in its Annual Fundraising Campaign. Please donate – especially if you watch our recordings and are not on our Mailchimp list. https://ancan.org/donate/
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.
