Hi-Risk/Recurrent/Advanced PrCa Video Chat, 2/2/26
Hear Founder, rick davis talk about how AnCan came to be in this 20-min podcast dropped this week on Empowered Patient Radio http://empoweredpatientradio.com/virtual-support-groups-remove-barriers-encourage-sharing-honest-experiences-to-fight-misinformation-with-rick-davis-ancan
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.
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
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AnCan – Rick sent: 5:55 PM
Technical assistance 877 582 7011
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AnCan – Rick sent: 5:56 PM
Playing the Long Game https://www.youtube.com/watch?v=v4jzyAeOtNI
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Steve Roux, North Michigan sent: 6:25 PM
orgovyx
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AnCan–John A sent: 6:25 PM
aka relugolix
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Steve Roux, North Michigan sent: 6:26 PM
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Eric James; Tyler TX sent: 6:28 PM
So they were unable to find any prostate cancer within the prostate biopsies? That is strange.
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AnCan–John A sent: 6:29 PM
right, Eric
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Steve Roux, North Michigan sent: 6:29 PM
But the MRI came after the biopsy I think
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Steve Roux, North Michigan sent: 6:29 PM
?
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AnCan–John A sent: 6:30 PM
MRI 2 pelvic lesions PIRADS 4 and 5. July 2025
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AnCan–John A sent: 6:30 PM
biopsies April and August
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Steve Roux, North Michigan sent: 6:32 PM
So the 1st biopsy was a “blind” biopsy
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Len sent: 6:32 PM
Yes, Steve.
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AnCan – Rick sent: 6:34 PM
Dr. David Wise, GU Med Onc NYU Langone https://nyulangone.org/doctors/1336438258/david-r-wise
Dana Rathkopf GU MO http://www.mskcc.org/cancer-care/doctor/dana-rathkopf
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Steve Schuler (Go Seahawks!) sent: 6:46 PM
And also the bone strengtheners question
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Steve Roux, North Michigan sent: 6:56 PM
Someone from Seattle is called a Seattleite
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Steve Schuler (Go Seahawks!) sent: 6:58 PM
Someone from Michigan is a Michigander. I’m both.
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Jim Marshall, Veteran, Alexandria, VA sent: 6:59 PM
Heck, Indianians are HOOSIERS
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AnCan–John A sent: 7:04 PM
prostate anc bladder specialist
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Jim Marshall, Veteran, Alexandria, VA sent: 7:05 PM
Indeed I heart issues and Aberaterone is off the table for the future when I go back on treatment. Jim
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Jeff Marchi – San Francisco sent: 7:06 PM
no kidding Jim , abi caused me a lot of heart issues
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AnCan – Rick sent: 7:07 PM
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Steve Schuler (Go Seahawks!) sent: 7:14 PM
Have they done a DEXA (for your bone)?
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Steve Roux, North Michigan sent: 7:18 PM
Great Meeting again gang! I’m out – time to walk the dog.
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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
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AnCan–John A sent: 7:21 PM
Ok Michael, welcome
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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.
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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
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Eric James; Tyler TX sent: 7:33 PM
The NCI doc presentation has some overlap with Adaptive Therapy
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Steve Schuler (Go Seahawks!) sent: 7:38 PM
Orgovyx will restore your T faster once you get off it
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RJ Smith (Seattle) sent: 7:48 PM
ChatGPT, etc.) is not a GU Med Onc. Not even a urologist or MD of any kind.
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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
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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.
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dan-s alexandria sent: 8:03 PM
gotta go, gents…. good conversations.
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Bruce Schrimpf sent: 8:11 PM
As always it was very informative. Thanks for being “there” for those of us struggling through!
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AnCan – Rick sent: 8:12 PM
Robert Gatenby https://www.moffitt.org/providers/robert-gatenby/
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John G sent: 8:12 PM