Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 28, 2026
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: Dr. Paul allowed PSA to rise to 160, and then kept 3x Pluvicto back that he now plans to use!
Topics Discussed
Newbie has local care that is not up to SoC; “Oldie” needs to replace Dr. E; how frequently and which scans when monitoring during drug holiday; successful AUS installation; Gent is successfully post RT/HT but when will T. return?; v. high cholesterol calls for statins – don’t fuss about fatigue side effects; mirabegron has few side effects for our user; clinical trial delay is a stressor; PSMA scan has great results… but cardio issues are for another group; remaining Pluvicto sessions preferred to SBRT; PSA got to 160 on drug vacation; E2 discussion featuring Dr. Paul coming soon – see Reminder;
Chat
AnCan – rick sent: 3:08 PM
The E2 Session with Dr. Paul is on Thu Aug 20. My apologies for the error.
Bob Schwartz, USN, Venice, FL. sent: 3:09 PM
No apologies necessary. Nice to see that your Human.
Jim Marshall, Vet Sup Grp. Moderator sent: 3:28 PM
Dr Channing Paller, Sibley Hospital, Johns Hopkins. Wash DC
Federal Blue Cross Insurance is top notch.
Morgan Brooke sent: 3:30 PM
Can Rick speak more about what is wrong with the 6-month Eligard shot?
I believe the Predinsone is to assist with controlling blood pressure
Jeff Marchi – San Francisco sent: 3:32 PM
the prednisone is to restore cortisol which zytiga stops production of without cortisol you have severe fatigue
Wes – San Diego sent: 3:33 PM
PSMA could have a false positive for the shoulder, but that might depend where the other sites are.
Jeff Marchi – San Francisco sent: 3:34 PM
rick does not feel the 6 month shot lasts the full 6 months (Ed: ‘may not’)
I had a 6 month shot for 6 years, had testosterone tests every month had it stayed undetectable the whole 6 months results may vary
Wes – San Diego sent: 3:38 PM
I was on federal BC/BS, and was on Orgovyx.
Bob Faulkner sent: 3:38 PM
I am a new member also Bob Faulkner
AnCan – rick sent: 3:41 PM
Bob – we can’t assure new men of time unless here in the first 5 minutes. Either we may be able to take you at the end, or we can definitely do an intake next week.
Wes – San Diego sent: 3:53 PM
Orgovyx and other ADT have potential cardio side effects, lengthened ST being one. I chose Orgovyx because I had cardio issues, and Orgovyx had fewer issues than Firmagon. Ironically, PSA did not drop sufficiently, so after about 6 weeks, I switched to Firmagon.
Rick S sent: 3:54 PM
I have a lot to learn!
Pierre D., Olean, NY sent: 3:56 PM
Another advantage of Orgovyx over the injectables is if you do develop side effects from Orgovyx you can stop it and it’l clear out of your system within weeks not months.
Wes – San Diego sent: 3:57 PM
V true; Firmagon has 1/2 life of 53 days.
Jeff Marchi – San Francisco sent: 4:03 PM
Orgovyx half life is 25 hours
AnCan – ricksent: 4:11 PM
Artificial Urinary Sphincter AUS
Morgan Brooke sent: 4:14 PM
Thank you all for your time. I need to run. I’ll to join more often.
From PCa commentary – After 3 – 9 months of ADT nearly all men fully recover by about 10 months; – After 18 – 24 months of ADT only 60% fully recover by about 3 years; and – After 36 months of ADT exposure only 50% fully recover by ~ 5 year
Wes – San Diego sent: 4:31 PM
Thanks Jeff, that conforms to my experience after 8 months on Orgovyx and Firmagon. After about 60 days being off, I felt substantially better (feel more like myself, peripheral vision is better, libido slowly coming back)
Repatha has far fewer side effects than statins. Repatha is remarkably expensive.
Alfredo in Sacramento sent: 4:33 PM
yes, my wife had bad reaction to Repatha but does fine on Praluent
Wes – San Diego sent: 4:35 PM
I had a bit of not having land legs on Repatha; not bad, but dropped LDL from 100+ to 30.
Steve Roux, Up North, Michigan sent: 4:41 PM
I need to run. As usual – GREAT meeting gang! See all of you next week.
Alfredo in Sacramento sent: 4:41 PM
my wife had total cholesterol of 309 mg/dl 5 years ago (did not tolerate any of several different statins); 180 mg/dl 2 weeks ago on Praluent . we believe she has Familial (inherited) hypercholesterolemia
Jeff Marchi – San Francisco sent: 4:46 PM
I have low cholesterol and my doctor put me on a statin and it crippled me. added at least 10 years to my life while on it. Friends asked my wife if I had much more time.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 14, 2026
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: If radiation forces a catheter, do you continue with the treatments?
Topics Discussed
Newbie hangs up on us; how frequently do you need a PSMA scan’; make your personal evaporative cooler; switching to estrogen or adding patch for hot flashes; rash from apalutamide; MSKCC comes up with options – RLT, chemo or more HT; bicalutamide tides Gent over to RT + Lupron but Flomax needed; moving to 1/4 dose abi protocol; curious response to DEXA scan; PSA holding low after RP and pre RT; holding steady but more spot RT needed for shoulder; debulk RT calls for catheter after – check with GU MO before continuing
Chat
Barry Blomquist sent: 3:15 PM
How you doing?
Jeff Marchi – San Francisco sent: 3:17 PM
hey Barry, who you asking
Barry Blomquist sent: 3:26 PM
Sorry
Ancan sent: 3:26 PM
Lol
Jim Marshall, Vet Sup Grp. Moderator sent: 3:38 PM
Have a Vet retired over in Estonia, Stage IV who has been on Double Dose Bicalutamide for many years. He is happy with it, have explained the alternatives but he is happy with how he is being treated. Jim Marshall.
Jeff Marchi – San Francisco sent: 3:47 PM
I know a guy that used casodex on and off for 5 years. would stop and PSA would rise and he would go back on Eventually needed an ARPI
Jay in MN sent: 3:58 PM
I cool off by jumping in the lake in MN🤪
Steve L sent: 4:03 PM
The Armstrong Study only address patients with nmCRPC and mCRPC. I am mCRPC which is not part of the conclsion of the analysis. Are there any studies appropriate for me
correction follows
Armstrong study is of mHSPC ans nmCRPC.
Copy of Conclusion of Armstrong Study follows “Given the frequent discordance and poor prognosis of imaging-based progression in the absence of PSA changes during enzalutamide treatment in mHSPC and nmCRPC, periodic surveillance using imaging is recommended.”
I need to jump onto another Zoom session at 8p Eastern. Good night, fellas.
Wes – San Diego sent: 4:56 PM
Damn, figured this out; long time; got an update, mostly all good; maybe next week.
Wes – San Diego sent: 5:02 PM
Curious to see why radiation to help issues of bladder/colon; sounds counter-intuitive.
Bob Alvord sent: 5:12 PM
Thank you for time to discuss my situation. Gotta run now and see you next week.
phil sent: 5:16 PM
Thank you for taking time for me and good advice. Planning on getting more radiation, hopefully at least 5 more sessions on shoulder. if more needed will follow up. Thanks again. and also staying on until clean
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 6, 2026
COMING SOON… AnCan Heart Group – new support group for all things cardio and open to all!
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: Unique wearable cooling devices for those darned hot sweats
Topics Discussed
PSA reaches 0.22 6 yrs after RRP with suspicious former SVI region; this Gent starts HT treatment with mets after 9 years of AS; neck fans & other unique cooling devices; MSKCC GU med onc sleeping on the switch… again; IHT looking good but possible iliac wing fracture; stable report; Ide Brothers give grief Down Under – statins at fault? abi switch?; switch to Schweizer at Hutch; self doctoring mono daro doesn’t work – GU MO needed quickly; AnCan’r accepted for ANDROMEDA
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: 1) SUV may be key to advanced treatment 2) 7 lesions really high volume?
Topics Discussed
7 metastases should be considered high volume and may indicate triplet protocol including chemotherapy; low SUV may indicate that lesion is NOT metastatic; old GU MO and new GU MO disagree on PSMA reading and treatment; managing two doctors: does he need a PSMA scan with a PSA of 0.12?; fatigue and brain fog in younger Gent maty call for switch in HT; switching docs at Fred Hutch, UW; starting IHT, but how best to monitor; first appointment with Dr. E coming up
Chat… (shortest ever in this group!!!)
Bill Lawler sent: 5:16 PM
Left Iliac bone
AnCan – Rick sent: 5:19 PM
877 582 7011 GoTo Assistance
If you need to dial in 646 749 3129 then 222 583 973
AnCan – Rick sent: 5:32 PM
dexamethasone in place of pred.
AnCan–John A sent: 5:34 PM
Lorente, Omlin, et.al. Tumour responses following a steroid switch from prednisone to dexamethasone in castration-resistant prostate cancer patients progressing on abiraterone. BrJCancer, 2014 Oct14 doi;10.1038/bjc.2014.531
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: Many tasty tips this week… our fave – clinical trials DON’T cover all costs
Topics Discussed
Liquid biopsies and biomarkers; Bispecific T-Cell Engagers (BITE) for TP53+RB1 Gent; is it time to test for small cell? – Provider doesn’t think so; dry mouth from denosumab/Xgeva – not quite, that’s ONJ – great dental health discussion; Reel Recovery takes his mind off seeking HT break; germline negative, but should T3b Gent stop HT after 9 months; the 2 Davids discuss trials managing oligoMx lightly; clinical trials often don’t cover all costs; our first Long Game man goes onto mono daro with 6 months NCI grace; Dr. E orders more tests to guide HT treatment – and suggests Good Patch for hot flashes; don’t worry yet about ‘morphing’ tests; PPI can elevate chromogranin; hypersensitivity to docetaxel demands dose adjustment; better GU doc on Florida Gulf Coast
Chat
Larry in AK sent: 5:13 PM
I will seek circulating tumor cell analysis searching for evolutionary changes in my cancer over time. Still in its infancy as a tool
Danny Lankford (Minnesota) sent: 5:29 PM
My wife and I are using Open Evidence. https://www.openevidence.com/ but you need an NPI (provider ID) to access it. It’s been amazing to help me along on my journey.
AnCan – Rick sent: 5:44 PM
oxybutynin -ditropan
Alfredo in Wimberley sent: 5:44 PM
OXYBUTYNIN (ox i BYOO ti nin) treats symptoms of an overactive bladder, such as loss of bladder control or frequent need to urinate. It works by relaxing muscles in the bladder. It belongs to a group of medications called antispasmodics. This medicine may be used for other purposes; ask your health care provider or pharmacist if you have questions. COMMON BRAND NAME(S): Ditropan XL
Danny Lankford (Minnesota) sent: 5:45 PM
same here on the venlafaxine 37.5mg for me and my mouth is dry as can be
I’m taking 2.5 mg of oxybutynin once a day, in the evening when I take my Apalutamide. Still get warm and sweat, but has taken the intense feeling of a hot flash away.
Another good mtg., have to go, see everyone next week.
Jann Nielsen sent: 6:35 PM
Great meeting. Have to go.
Luther sent: 6:43 PM
Good thing I’m seeing her on Wed. then
Frank Ciambra sent: 6:49 PM
I didnt hear a thing larry
Larry in AK sent: 6:51 PM
There are organizations that re-distribute prescription drugs. It is illegal, but some prosecutors shy away from prosecuting humanitarian bending” of the law.
Alfredo in Wimberley sent: 6:51 PM
I have to leave, best regards to one one and all!
Matt sent: 7:01 PM
evening fella! I’ll follow up. Cheers 😉
Bruce Schrimpf sent: 7:03 PM
Thanks for the information about Dr. Stish writing an article! I have had a long day and will call it a night.
