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
Empowered Patient Podcast: Virtual Support Groups Remove Barriers Encourage Sharing Honest Experiences to Fight Misinformation with Rick Davis, AnCan
AnCan founder, Rick Davis, was recently featured in the Empowered Patient Podcast with Karen Jagoda. This show explores the cutting edge of healthcare, highlighting innovations in generative AI and the latest breakthroughs in therapeutics and vaccines, and explores a shifting landscape where providers, pharma, and payers are prioritizing patient empowerment.
Rick explains, “The mission is to make each person and each patient a better advocate for themselves. That’s really what we try to do, and we do that through empowering patients with peer knowledge. We introduce patients to other peers who have been through what these people are facing right now, not only patients, but also their care partners, and through their experience, we hope that these patients and care partners will become more expert in managing their own situation.”
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)
AnCan – rick
sent: 6:13 PM
877 852 7011 GoTo help
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.
Jeff Marchi – San Francisco
sent: 6:23 PM
Jay from Miami raised his hand about intraductal
Jim K
sent: 6:23 PM
Thumbs up.
No. Vietnam started to wind down by the time I hit 18, if I recall correctly.
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
Jim K
sent: 6:25 PM
Yes, no mic, but can hear the members.
Jim Marshall, Veteran, Alexandria, VA
sent: 6:26 PM
Think Jim K mike may work. Jim M
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.
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
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
Frank Ciambra
sent: 7:06 PM
good night
Mark N
sent: 7:12 PM
Dr. John, I just sent you Dr. Epstein’s biopsy results. Thank you
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
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.
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
Concordance between liquid TMB and tissue TMB can vary if tumor is not shedding into the blood.
Gary Martin
sent: 7:23 PM
Thank you very helpful information.
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
Jon McPhee Toronto
sent: 7:31 PM
What duration of doublet is recommended?
Jim Marshall, Veteran, Alexandria, VA
sent: 7:32 PM
Amount of time answer …. It Depends on many factors.
Bob Schwartz U.S.N. Venice, FL.
sent: 7:35 PM
Congrats Capt. Jim, 39+ months is GREAT!
Jim Marshall, Veteran, Alexandria, VA
sent: 7:37 PM
Eligard & Lupron is the exact same drug with a different method of delivery. Jim
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!!
AnCan – rick
sent: 7:42 PM
Orgovyx
Hank Zajic Springfield VA
sent: 7:48 PM
I have to go. Thank you everyone.
dan-s
sent: 7:51 PM
I have to go Gents… thanks for another great session
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.
Bruce Schrimpf
sent: 7:59 PM
Must run. Thanks for a great session! I will see Capt. Jim tomorrow.
Joe Comanda (Philadelphia)
sent: 8:00 PM
Need to take off. Will hold my question for another time.
Eric Curtis
sent: 8:05 PM
Gotta run. Appreciate the info
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.
CNTV’s recent video features an interview with AnCan founder, Rick Davis. He explains that he started AnCan after his own diagnosis in 2007, after realizing inadequate support options, especially for those in remote areas. AnCan aims to eliminate barriers to entry for its various support groups, which range from cancer to chronic diseases. AnCan empowers patients to “Be your own best advocate” by providing them with the knowledge to speak confidently with their healthcare providers and offering peer-to-peer support.
NEW monthy GAY & BISEXUAL MEN’S Prostate Cancer Group starting Tue, Oct 14.
Sign up at https://ancan.org/contact-us/
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: What’s the right group for me? (rd)
Topics Discussed
Older Newbie on longer term HT is concerned about bone health; post-RRP Gent at high risk considers preemptive radiation; a ‘regular’ preparing to complete HT wonders which group he belongs to; balancing estradiol and testosterone levels; reluctantly considering intermittent hormone therapy; challenges with an out-of-state GU med onc; treatment update and AnCan gratitude; chemo contunues with tests and GU MO encouraging; Gent takes AnCan advice switching to MSKCC.
Chat Log
Steve L
sent: 5:23 PM
No response needed but I want to share that I have lost 18 pounds since my pulmonary embolism cleared. Unfortunately I had gained 48 pounds during the nearly 12 months it took to clear. So 30 plus to go.
Larry (Alaska)
sent: 5:26 PM
Bone strengthening: Bone loss on ADT is considered to be because of too-low estradiol level (same reason post-menopausal women) caused by depression of estradiol that accompanies suppressing testosterone. A man needs a certain level of estradiol which can be supplemented by patches or gel taken through the skin. Standard-of-Care bone strengtheners have side effect that estradiol does not.
Good input, Larry. I agree completely. Lots of docs pitch a fit about it, often based on very old work with non-bioidentical estrogens, orally administered.
Larry (Alaska) sent: 5:42 PM
Look up the “PATCH” study which compared E2 to Lupron over 15 years time
Jeff Marchi – San Francisco sent: 5:44 PM
UCSF bone health seminar May 2025 Therapy – for all men on hormonal therapy • Calcium 1200mg daily • Vitamin D 400 units daily • Denosumab or Zoledronic Acid for mCRPC or Osteoporosis
Thomas Matica sent: 5:49 PM
K2 works in conjunction with vitamin D (D3 preferred) aiding with absorption of the vitamin D. Good idea to take both.
Larry (Alaska) sent: 5:50 PM
AND weight-bearing exercise strengthens bones. Take it as seriously as you take your other medications!!!!!!
Jim Marshall, Veteran, Alexandria, VA sent: 5:51 PM
Vitamin K is great except for those of us on Blood Thinners. Jim M
Brian Haack – Eagle, ID sent: 5:54 PM
Gotta run. Great discussion!
Lee Baylin, Baltimore sent: 6:08 PM
good night all
Steve L sent: 6:12 PM
My radiation was not an initial treatment but 42 months after my De novo diagnosis and after numerous treatments. My prostate had been substantially reduced in size prior to the radiation.
Steve White sent: 6:16 PM
Need to run. Thanks for the discussion
Jim Akin, Bradenton, FL sent: 6:26 PM
Larry, try using app ChatGPT in your research. That is an AI app.
Jeff Marchi – San Francisco sent: 6:28 PM
At U of Chicago Russell Szmulewitz, MD – UChicago Medicine Or at Northwestern David J VanderWeele :
Larry (Alaska) sent: 6:30 PM
Jim, I have used the heck out of AI, especially “Perplexity” and extensively studied the source materials it cites. A number os AI engines are very good. Check out also David Diaz’s book “How to use AI to fight your prostate cancer” available through AMAZON Thanks for the suggestion, Jim.
