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: Toss up between ANDROMEDA trial and dormant cancer discussion
Topics Discussed
T3b Gent needs clarification on his Bx before starting treatment; how much HT before discussing intermittent; starting doublet; Nagar suggests IMRT is better for this Gent; switching HT drugs may address castrate resistance; Cialis for nocturia – maybe; potential cardio-onc in Portland, OR; Kishan’s ANDROMEDA trial attractive to men with slow recurrence; can prostate cancer cells be dormant?… follow up post-recording suggests YES.
Chat
AnCan – Rick sent: 4:58 PM
RJ – please call 877 582 7011 for HELP!!
Dial In 646 749 3129 #222 583 973
Jeff Marchi – San Francisco sent: 5:23 PM
Rajni Sethi is a Radiation Oncologist
Jim Marshall, Vet Support Grp. Moderato sent: 5:33 PM
Dr Jonathan Epstein. Advanced Uropathology of New York 700 Stewart Ave, Suite 101 Garden City, NY 11530 Hours: Monday-Friday 9:00AM – 6:00PM P: 516-760-2037 F: 516-200-3899 jepstein@imppllc.com
Jeff Marchi – San Francisco sent: 5:36 PM
orgovyx
Jeff Marchi – San Francisco sent: 5:38 PM
Ductal is very aggressive, is it really Ductal
Jeff Marchi – San Francisco sent: 5:39 PM
that would call for 2nd
Bob Schwartz, USN, Venice, FL. sent: 5:44 PM
Veterans, in Capt. Jim, We Trust!
Jim Marshall, Vet Support Grp. Moderator sent: 5:45 PM
Jim Marshall, USAF(RET), 703-338-7341. veterans@ancan.org
May be a GU cardiologist: Maros Ferencik OHSU Knight Cardiovascular Institute Cardiology Clinic, Beaverton, OR 1-503-494-1775
Jeff Marchi – San Francisco sent: 6:49 PM
Actinium major problem with dry mouth
Jeff Marchi – San Francisco sent: 6:50 PM
more according to studies
10-25%have severe dry mouth
Larry (Alaska-Estradiol as ADT monotherapy) sent: 6:52 PM
Alpha particles simply have a shorter penetration than beta particles, so cellular damage is more limited to the locations the ligand binds the radioactive material. The problem with both is that the radioactive material is placed everywhere there is uptake of the ligand.
Joseph (Sean) Siry – Laguna Woods, CA. sent: 6:52 PM
So the actinium treatment does not rely on knowing the precise location of the metastasis?
Larry (Alaska-Estradiol as ADT monotherapy) sent: 6:53 PM
Joseph/Sean, both treatments (using ligands) bind to the same cells. The ligand (sort of) “knows” where to bind.
Joseph (Sean) Siry – Laguna Woods, CA. sent: 6:59 PM
my Testosterone is in the 180 + level, would systemic treatment rule me out due to ADT is just started?
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: Pros & Cons of Estradiol (E2) as primary and complementary ADT… & mustard!
Topics Discussed
Intraductal (ICC-P) AND cribriform complicate treatment decision for younger Gent; more IDC-P & crib man recurs after RP bringing questionable treatment from Kwon; young denovo Mx BRCA2 has surgery then salvage RT and HT; knee surgery results in temporary daro suspension; mustard under the tongue; Dana Farber gives better advice and recommends GUNS RT trial; a great candidate for ‘Playing the Long game’; extensive discussion around the use of estradiol (E2), both as primary ADT and as complementary to LHRH ADT drugs
Jim Marshall, Veteran, Alexandria, VA sent: 8:12 PM
Need to ask your VA Doctor. I doubt if there is a VA policy on this, Jim Marshall
Brian Haack – Eagle, ID sent: 8:20 PM
great discussion on E2. See you next week
Bruce Schrimpf sent: 8:21 PM
AMEN!!!! It is very enjoyable to be on nothing!!!
Jeffrey G sent: 8:27 PM
To anyone: Has there been discussion of becoming castration resistant on E2?
scott b sent: 8:31 PM
thank you… great discussion!
Bruce Schrimpf sent: 8:41 PM
So why does not “medical science” search for the cause and the cure for prostate cancer? We are screwing around with surgery, radiation and hormone therapy that is not a cure for prostate cancer all the while doctors, “medical facilities,” and big pharma that cut, radiate, and pontificate make money on selling what is essentially rubbish.
(Editor’s Note: that’s exactly what pharma/biopharma is seeking, Bruce. To date we can only find drugs that manage and not cure it!)
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, 1/5/26
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.”
