Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 21, 2025
MARKET RESEARCH STUDIES
AnCan has two new market research opportunities for you and your Care Partners with Pinpoint Patient Recruiting to earn up to $425.
Study #1
• Non-white Men &/or Carers – both can apply but with separate applications • Must be US based • Men confirmed hormone sensitive with or without mets OR castrate resistant • Active treatment is NOT required – you can be on a drug holiday
Study #2 – recruiting for survey in September • Men &/or Carers – both can apply but with separate applications • Must be US based • Men confirmed hormone sensitive with or without mets OR castrate resistant • Active treatment is NOT required – you can be on a drug holiday
$125 for a 60-minute virtual online interview with another $50 for providing evidence from your medical records of your confirmed diagnosis – screenshots suffice. If you opt in for a second interview, another $125 is available. Your Carers also have the opportunity to earn $125 for a 60 minute interview.
Please visit pinpointpatientrecruiting.com/pc-interview-ancan2025 or contact Brittany Weathersbee at brittany@pinpointpatientrecruiting.com. If you’ve already been contacted directly by Pinpoint from a prior study and accepted, please let us know at rd@ancan.org.
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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 https://ancan.org/veterans/
Editor’s Pick: Pain meds should not be a pain! (rd)
Topics Discussed
Fatigue persists despite testosterone increasing and normal cortisol levels; advanced cancer spreads including to liver; using pain meds; identify the cancer before talking treatment and trials; Chuck Ryan gets NJ gold star for holding Gent off treatment; heart issues indicate apalutamide and more cardio follow up; 2x Pluvicto drives PSA down from 0.6 to 0.2 – consider holding treatments back; recurrence 3 mos post salvage RT requires GU MO’s opinion; Newwbie – triplet therapy brings PSA from 4900 to 6 – but GU MO required as QB.
Chia seeds are a complete protein Complete proteins are those that contain all nine essential amino acids. Essential amino acids are those that our bodies cannot create and must be obtained through food. These include histidine, isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine.
John A sent: 5:36 PM
nuts and seeds also for protein
gary peters sent: 5:55 PM
The FDA approved (1/25) a new non-opioid pain medication called suzetrigine, marketed as Journavx. This medication is designed to treat moderate-to-severe acute pain in adults by targeting pain signals in the peripheral nervous system, rather than acting on the brain like opioids.
kang sent: 5:55 PM
Lorigerlimab MacroGenics
Len Sierra sent: 5:57 PM
Lorigerlimab is an investigational, bispecific antibody targeting PD-1 and CTLA-4, designed to enhance immune checkpoint blockade in the tumor microenvironment.
Ben Nathanson sent: 5:59 PM
Gary, it’s approved for specific pain that may not be applicable to cancer patients: short-term moderate-to-severe acute pain (trauma or post-op) only —not chronic pain. But it’s an interesting new approach that’s likely to get plenty of company. The benefit is that you get pain relief plus alertness.
Mike sent: 6:02 PM
psa for years between 6-10, prostate biopsy 1.5 years ago negative, just received ExoDx urine test result =53. Any suggestions? Urologist recommends 25 core biopsy. Thanks
Hi-Risk/Recurrent/Advanced PrCa Video Chat, June 10, 2025
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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: Does a “tricky” cancer merit two chemotherapies at once? (bn)
Topics Discussed
Urged by Alexa’s mom to check their PSA, 3 discover de novo metastasis; we’re not spokespersons or shills for any pharma company; doc piles it on with two chemo drugs and they’re hitting him hard — does he really need both; his tricky intraductal diagnosis demands top-notch docs; Eggner, Liao, and Szmulewitz are “the A team”; PSA risen to 0.4 doesn’t mean “see you in 3 months”; after a “mismash” of treatment, Tanya Dorff may give clarity; plan to use focal therapy raises eyebrows; sharing details of a cardio-oncologist visit; are more Pluvicto rounds really needed for a super-responder?; pace yourself when working to regain muscle; scary dental side effects from a bone strengthener; Hope Lodge visit was “an amazing experience”; former Moffitt patient’s advice: go elsewhere; his tricky radiation looks like it hit the mark; trouble with gynecomastia; feeling better after 5 rounds of chemo; treating the prostate after de novo metastasis — radiation or surgery?
Chat Log
AnCan Barniskis – rick · 6:30 PM
dr.john@ancan.org
Len Sierra · 6:41 PM
This comes from GU ASCO 2024: Site of Metastatic Disease Median OS HR 95% CI P value Bone 59.4 m Ref Lung 82.2 m HR 0.6108, 95% CI: 0.47- 0.7988, p,0.001 LN 66.6 m HR 0.845, 95% CI: 0.7435-0.9875, p= 0.018 Liver 45.3 m HR 1.58, 95%
AnCan Barniskis – rick · 6:50 PM
davidm@ancan.org
AnCan Barniskis – rick · 6:51 PM
David Muslin
DJFairbanks · 6:58 PM
Our PSAM PET showed lung nodules at 0.36
Gary V Portland, Oregon · 7:18 PM
You are all wonderful really appreciate all of your knowledge just incredible…See you all in 2 weeks..
DJFairbanks · 7:19 PM
THank you everyone – I look forward to learning more from you all.
AnCan Barniskis – rick · 7:24 PM
Elisabeth Heath https://www.mayoclinic.org/biographies/heath-elisabeth-i-m-d/bio-20576547
Len Sierra · 7:25 PM
Sartor left Mayo this year.
AnCan Barniskis – rick · 7:27 PM
Forget Sartor
Len Sierra · 7:30 PM
AstaBio, a biopharmaceutical company developing next‑generation targeted cancer radiotherapies, today announced the appointment of Oliver Sartor, MD to its Medical Advisory Board.
Alfredo in Houston · 7:31 PM
SpaceOAR, Barrigel, BioProtect are the three products that create space between rectum and prostate
Steve Roux, North Michigan · 7:42 PM
This group is awesome – I’ll see you next week gang!
Alfredo in Houston · 7:43 PM
I have to run. Bye for now. Thanks for all the good information tonight. Good health to all!
DJFairbanks · 7:44 PM
Ooh, I want a tshirt – 🙂
AnCan Barniskis – rick · 7:45 PM
Here’s where you get a T-shirt … or sweatshirt. https://ancan.org/shop/
dan, alexandria · 7:45 PM
Another great session… but I do have to scoot. Thanks All….
DJFairbanks · 7:46 PM
@Bob Schwartz, USN, Venice FL Bob – What chemo did you have?
AnCan Barniskis – rick · 7:48 PM
G-d bless you, Lee
George (Chicago) · 7:58 PM
Thank you, gentlemen. Much learned, much to be learned.
Steven T · 8:03 PM
Thanks everyone. Have a great evening!
George (Chicago) · 8:03 PM
Thanks very much, Ben. A pleasure meeting you in person for sure. Yes, we’ll stay in touch. Do you think this is the right group for me?
Alan Babcock · 8:05 PM
On exercising find something you love and do it
AnCan Barniskis – rick · 8:08 PM
https://flcancer.com/en/physician/elizabeth-guancial-md/ Elizabeth Guancial
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 10, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
UPCOMING WEBINAR – Let’s talk Medicare 2024!Monday, Oct 30 8.00 pm Eastern Register at http://tinyurl.com/ancanmedicare . We plan NOT to make this scary!!!
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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/
Editor’s pick:Does it make sense to keep your cancer off guard?… & the Group talks A-fib! (rd)
Topics Discussed
AnCan loses two long term men on same day; Zometa side effects; 3+3 (??) newbie addresses mets after 20 years; Gent running out of options needs current sequencing … and new doc; does it make sense to keep the cancer off guard?; addressing A-fib; reducing visceral fat with exercise addresses sarcopenia; darolutamide refused so Gent starts with Orgovyx alone; Payer wrongly refusing NGS somatic testing; blood in urine could be RT cystitis – cystoscopy required; PCa recurs only within the gland.
Chat Log
Matt Kriegersent · 3:32 PM
Here are my recent PSA trends, it’s been a bit of a rollercoaster and I would appreciate any feedback. My treatment history is external radiation and HDR brachytherapy completed April 2020, and I was on 2 anti-androgens until June 2022. So 9 (Sept.)/2022 <.06, 1/2023 .06, 3/2023 .06, 6/2023 .35, 7/2023 .17, 8/23 .24, 9/2023 .07 I’m seeing my urologist tomorrow because a few weeks ago, for the only time other than the one biopsy and brachy, I had some blood in my urine – that was surprising but hasn’t happened again since.
sent · 3:35 PM
Too many things to do. You need to talk with the group. You need to make changes now.
Jim Marshall, Alexandria, VAsent · 3:44 PM
Genitourinary Medical Oncologist
John Asent · 3:48 PM
“LHRH antagonist drugs include relugolix (Orgovyx) and degarelix (Firmagon). These will suppress testosterone rapidly and don’t need the premedication with another drug.
Jim Marshall, Alexandria, VAsent · 3:50 PM
Abiraterone for Castration-Sensitive guys is 5MG of Prednisone
John Asent · 3:50 PM
Then, a second dug may be added to add to the testosterone suppression: abiraterone or darolutamide or enzalutamide.
marc valenssent · 3:56 PM
genitourinary MedOnc at Fred Hutchinson in Seattle: Petros Grivas
J. Wardsent · 4:00 PM
I need to hop off now; thanks for allowing me speak about Ken Anderson.
On March 3rd at our Active Surveillance Virtual Support Group., we had the esteemed Dr. Darryl Leong (Cardiologist and Director of the McMaster University and Hamilton Health Sciences Cardio-Oncology Program) join us.
Dr. Leong, explained to men on active surveillance that his work on men on AS makes sense because many of these men are at greater risk of dying from cardiovascular diseases—such as heart attacks and strokes—than they are to die from prostate cancer. He said there is strong evidence for the benefits of exercise to reduce CVD risk. He said the research on a diet is not as strong because there are few randomized studies. However, there is recent research from MD Anderson that the Mediterranean diet may have some benefits for men on AS. Long warned that many cardiologists are now questioning the long-accepted practice of taking one baby aspirin a day. He also answered questions about cardiovascular disease issues in men with advanced prostate cancer who are taking hormonal therapy.
We want to thank Dr. Leong for answering so many questions!
To view the slides from this presentation, click here.
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
