What ASCO is to cancer doctors, AACR (American Association for Cancer Research) is to cancer researchers. When AACR held its annual convention in April, a small number of patient advocates were invited to participate as part of AACR’s Scientist-Survivor Program.
Representing AnCan, I was one of 42 advocates chosen from more than 200 applicants. The AACR has long recognized the need for patient involvement in cancer research — the SSP program began 28 years ago.
It’s a convention within a convention. Every day we heard from lucid and charismatic speakers, some of them presenting slides that they would later present at the convention. Talks included
State of the Art of Precision Oncology – Edward Kim, a chief physician at City of Hope
Very Early Cancer Detection Assays – Caris Life Sciences president David Spetzler
Drug Discovery and Development – Paul Workman, of the Institute of Cancer Research in London
Evolution of Resistance – Carlo Maley of Arizona State University
Each talk was inspiring, but my favorite was Workman’s. A legendary figure in cancer drug discovery, he argued that by probing deeply into how a drug works before clinical trials, researchers can identify in advance which patients are most likely to benefit. Many drugs written off as failures actually work remarkably well for a small subset of patients. Yet those patients will never get the treatment, because the drug was judged on its lack of effect in the wider population.
We were split into 6-person groups, each assigned a mentor scientist. In my group, that was Jeremy Mason, a young computational biologist at UCLA.
Advocates were required to present a poster at one of the general poster sessions. Mine showed AnCan’s unique benefit to cancer patients and others with chronic illness. Anchoring the poster was a quote from Dr. Paul Schellhammer, AnCan-er and past president of the American Urological Association:
I will comment that the level of diligence, expertise, and discussion rises to the level of an academic GU cancer conference / tumor board.
Most overwhelming for me was the passion and hard work of my fellow advocates, whose efforts included raising millions of dollars for research funding, helping create a research institute for a rare cancer, harnessing programming skills to codevelop AI with a cancer researcher, and initating an early-detection campaign for gay men at risk of anal cancer.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 18, 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/
Editor’s Pick: Confirm PSMA signs in esophagus are prostate cancer before starting hormone therapy (rd)
Topics Discussed
Active and healthy 85 yr old asks how to best manage recurrence; bladder neck involvement from surgery may complicate matters; Pluvicto in store fo foamy gland Gent; addressing neuropathy; waiting on test results to confirm small cell trial; anxiety is crippling; blood thinners may explain RT cystitis/proctitis; starting salvage RT; addressing osteoporosis during advanced treatment; RB mutation may invoke adtional chemo agent; check out PSMA signs in esophagus before starting HT for PrCa; following recurrence up to PSA of 1.0; holding a coupl eof Pluvicto sessions in reserve??
Thanks gents for another excellent group mtg… I have to check-out now.
Alain sent: 6:57 PM
I have to go guys, many thanks for a great meeting, I can present my update next time.
Gary V Portland, Oregon sent: 6:59 PM
Jeff thanks for all the suggestions these last 2+years .. You gave me the strength to fight to get Nubeqa and Orgovyx and you tied me up with AnCan.. you made a difference
Ed L sent: 7:11 PM
Thanks for the advice. Good night all time for bed.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 12, 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/
Editor’s Pick: You’re not alone if you have lungs-only metastasis. (bn)
Topics Discussed
He’s responding to ADT, but we keep wondering about the “neuroendocrine hyperplasia” found in his lung; salvage radiation is recommended, but mom’s bad radiation experience leaves him fearful; even with cribriform, Gleason 4+3 puts him in the low/intermediate group; the word is “debulking” for giving prostate radiation after de novo metastasis; low-PSA-producer sees a doubling in 3 months, but it’s from 0.016 to 0.032 — is that worrisome?; with new oligomets, he wonders if he should get chemo now and be done with it; minimal cancer found in his blood test and negative PSMA — he’s celebrating; abi patient gets facial swelling — is the physician assistant handling it properly, and why wasn’t he warned against stopping prednisone too quickly?; swimming through bureaucratic murk to see a radonc.
Chat Log
Ancan – Bill · 6:36 PM
Jim, Bravo Zulu for the referral award tonight!
AnCan – rick · 6:43 PM
I think Prostox may now be available.
Steve Roux, North Michigan · 6:45 PM
PROSTOX, a genetic test designed to help prostate cancer patients minimize the risk of radiation toxicity, is available to patients in the USA, with the exception of New York State residents.
Steve Roux, North Michigan · 6:49 PM
A list of Early Access Providers who offer PROSTOX testing can be found on the MiraKind website. These providers include institutions like the Mayo Clinic, UCLA, and UCSF Radiation Oncology.
Jim Marshall, Veteran, Alexandria, VA · 6:56 PM
Orgovyx is the pill. versus Lupron
AnCan – rick · 7:00 PM
In no circumstances a 6-mo DEPOT.
Jon McPhe · 7:03 PM
Anyone got a short version of why Orgovyx and not Lupron? I ,ay have to make a choice tomorrow.
Steve Roux, North Michigan · 7:04 PM
I did not tolerate Lupron well at all.
Steve Roux, North Michigan · 7:05 PM
I saw a GU Oncologist who put me on Orgovyx which is a pill and easy to take. Very much less side effects.
Julian – Houston · 7:05 PM
I was on Lupron then got switched over to Orgovyx and Nubeqa.
Steve Roux, North Michigan · 7:07 PM
Gerry / Cynthia – if you are on medicare, the new max out-of-pocket for drugs is reduced now to only 2,500.00 per year. That makes Orgovyx very affordable.
RJ Smith (Seattle) · 7:07 PM
Orgovyx you can stop taking the daily pills, and testosterone will come back much quicker. Multi-month Lupron will keep on going, and doesn’t stop completely on the last day of the month.
AnCan – rick · 7:12 PM
We call that debulking the primary
Jeff Marchi – San Francisco · 7:29 PM
I have been on Lupron for 7 years and Orgovyx for 2 years. After 5 months of Orgovyx the side effects are identical to Lupron
Jeff Marchi – San Francisco · 7:31 PM
Some people don’t produce PSMA, so the scan can’t find anything.
Jeff Marchi – San Francisco · 7:46 PM
First 5 months hot flashes stopped, since then as bad as Lupron 10+ a day most days
Steve Roux, North Michigan · 7:50 PM
https://www.drugs.com/compare/lupron-depot-vs-orgovyx
Steve Roux, North Michigan · 8:04 PM
Thank you to everyone especially you wonderful moderators! Time for my Orgovyx and a bowl of ice cream. Good night all!
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 29, 2025
MARKET RESEARCH STUDIES: AnCan has a new market research opportunity for you and your Care Partners through our collaboration with Pinpoint Patient Recruiting. It’s seeking to fill 2 different studies with:
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
You’ll intially earn $125 for a 60-minute virtual online interview. Researchers want to understand your experiences living with prostate cancer and your opinions on treatment and care.
There’s another $50 if you provide 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. By our reckoning, that’s upto $425!
The researchers are particulalry interested in reaching diverse minorities – especially African Americans and Hispanics.
If you’ve already been contacted directly by Pinpoint from a prior study and been 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: Is radiation worse than surgery in intraductal? (bn)
Topics Discussed
Intraductal, but leaning toward radiation because of comorbidities and surgical risks; hot-flash news flash: a salute to Dr. Wassersug and his ADT book; cancer doc waiting for a 1.0 PSA is less scary than it seems; anyone have heart problems on abiraterone? (answer: lots of us); Marc V. awaits liver biopsy results and mulls future steps; bloodwork problems go away when he switches to one abi with a meal from two abis without; hopes for spotting recurrence early with a blood test for residual disease — but it’s still early in the pipeline; actinium trial turns him down but is vague about why; lymph nodes light up PSMA PET, but MRI says nothing’s there; liver and spleen mets appear to be a false alarm; our disagreements with Mayo’s Dr. Kwon; happy about monthly results that show his PSA still dropping; anyone know how to get back on your feet after chemo’s Mack truck takes you down?
Chat Log
Hank Zajic Springfield VA · 6:32 PM
Deville was my Radiation Oncologist. He works out of SiIbley. First rate!
Hank Zajic Springfield VA · 7:06 PM
Richard Wassersug’s book is Androgen Deprivation Therapy 3rd Edition, published in 2023. You can also find him/ his work at the website LifeonADT. I found the book (and his course) an excellent “manual” that describes the therapy approaches, side effects and practical things to help get ahead of impacts. For a novice, looking down the barrel for the first time (so to speak) I found it a terrific resource.
AnCan – rick · 7:09 PM
Dr. Javid Moslehi https://www.ucsfhealth.org/providers/javid-moslehi
Jim Marshall, Veteran, Alexandria, VA · 8:11 PM
When esophogeal cells are damaged, they are replaced by Stomach cells. Known as Barrett’s Esophagusgiving at 15% chance of developing cancer in the throat. Jim
AnCan – rick · 8:39 PM
Embr watch https://embrlabs.com/
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, July 15, 2025
Earn up to $425… but move quick!
AnCan has a new markert research opportunity for you and your Care Partners through our collaboration with Pinpoint Patient Recruiting. It’s seeking to fill 2 different studies with:
• 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
You’ll intially earn $125 for a 60-minute virtual online interview. Researchers want to understand your experiences living with prostate cancer and your opinions on treatment and care. There’s another $50 if you provide 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. By our reckoning, that’s upto $425!
There are 30 slots available so move quickly. To see if you qualify for the study or to get more information, please visit pinpointpatientrecruiting.com/pc-interview-ancan2025 or contact Brittany Weathersbee at brittany@pinpointpatientrecruiting.com. All information and responses will remain confidential. If you’ve already been contacted directly by Pinpoint from a pror study and been 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: PSMA PET finally lights up at PSA of 20 — there may be a lot it’s not showing (bn)
Topics Discussed
Exactly one lymph node removed — who does that?; worred about surgeon who shrugs off pathology findings; since prostatectomy in 2001, he’s been on and off the ADT train — time for monotherapy?; keeping extremities iced during chemo — is it effective?; PSMA PET doesn’t light up till PSA reaches 20 — could his cancer be a variant type?; what’s this rise in alkaline phosphatase — and what does the test show; with an initial PSA of 325, he did the work and is now down to 0.09
Chat Log
AnCan Barniskis – rick · 6:04 PM
Go To support 877 582 7011
AnCan Barniskis – rick · 7:04 PM
Dr. Jonathan Epstein https://advanceduropathology.com/ pathology 2nd opinion
AnCan Barniskis – rick · 7:05 PM
Dr. Ming Zhao https://profiles.mountsinai.org/ming-zhou pathology 2nd opinion
Jim Marshall, Alexandria, VA · 7:06 PM
Fairfax Hospital, VA is part of the INOVA Healthcare system.
AnCan Barniskis – rick · 7:27 PM
Was MN Onc who raised Barry to triplet, not Kwon.
Barry Blomquist · 7:29 PM
Yes I pretty sure it was Dr Antonarakis and MO after he sent them email.
AnCan Barniskis – rick · 7:45 PM
https://www.lifeonADT.com
Jim Marshall, Alexandria, VA · 7:48 PM
Leaving for the Vetrerans SUpport Group. Jim M.
