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
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
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!
Editor’s Pick: Being younger doesn’t mean a prostatectomy is your best treatment option. (bj)
Topics Discussed Intraductal Carcinoma of the Prostate (IDC-P) needs treatment and you shouldn’t delay; the traditional approach to IDC-P is surgery and it is unclear how well new treatment options will work; with IDC-P consider germline (e.g. PROMISE) and somatic genetic testing (e.g. DECIPHER); what is the relationship between IDC-P and cribriform; get a second opinion on the biopsy; if you are 72 or older a prostatectomy is not advisable; just because you are younger doesn’t mean that surgery is your best treatment option; we have a tendency to hang onto to each PSA test, but we need to remember that the trend is our friend.
Chat Log
AnCan Barniskis – rick
How Citizen Scientists are Using AI to Guide Their Testing and Treatment Decisions w. Russ Hollyer Wed Jul 9, 2025 at Noon Eastern Navigating complex cancer care—choosing tests, interpreting results, and planning treatment. Learn how to use AI to navigate the process https://community.cancerpatientlab.org/c/events/how-citizen-scientists-are-using-ai-to-guide-their-testing-and-treatment-decisions-russ-hollyer?mc_cid=a493cef7cf&mc_eid=838454d636
AnCan Barniskis – rick
Dr. Epstein https://advanceduropathology.com/
AnCan Barniskis – rick
Dr. Zhou https://profiles.mountsinai.org/ming-zhou
Stuart
ming.zhou@mountsinai.org
AnCan Barniskis – rick
Dr. Christian Pavlovich , Johns Hopkins https://profiles.hopkinsmedicine.org/provider/christian-pavlovich/2703813
AnCan Barniskis – rick
What if You Could Predict the Risk of Radiation Effects – Prostox and Beyond https://ancan.org/event/special-presentation-what-if-you-could-predict-the-risk-of-radiation-effects-prostox-and-beyond/
“Someone I once loved gave me a box of darkness” –Mary Oliver
I was at a 12-Step-oriented workshop about grief recently, and it made me think about Men Speaking Freely (MSF). We are vaguely aware of grief in all MSF groups, it hangs over us, and we have at times focused on some specific griefs/losses, such as vitality, or a longer life. It is commonly thought that not thinking about a loss, not talking about it is the manly thing to do. Here in MSF we get relief by sharing our common losses with each other.
The presenter of that workshop, Marcia C., had some ways to specifically talk about grief that were new to me. She gave me permission to use some of her material here. She pointed out some types of losses that I hadn’t realized. For example, the loss of who I would have been if cancer didn’t happen, the grief of estrangement, loss of work, of status, of friendship; the loss of never having had something, that of aging, of trust, or of giving up something.
She said there is “unacknowledged grief” when such losses are never fully brought to consciousness. When I looked at her long list of examples I saw many that I have. We ought to watch for unacknowledged grief.
She described “non-finite” grief, which has no end-point other than death. Ours could be in that category, since as time goes by our loss increases instead of lessens.
Marcia said, ‘’Sharing your grief is a way to receive validation and compassionate witnessing. It can help you begin a path to healing and/or finding a way to live with grief.
Consider the questions below:
1. Are there griefs you haven’t realized you have or have been afraid to face?
2. Are there griefs about which you’d like to share?
3. Do you have grief practices that might be helpful to others?
4. Make a list of griefs you’ve experienced.
5. Choose a tool from the list that might help you process your grief.”
That list of “tools” was long; it included things like: write a letter or poem describing our loss…Create a ritual of letting go…Share with others who have had similar losses…Visit a place that is meaningful…Make or buy a talisman that helps you feel protected…Dance, run, yell to get your feelings out of your body…Plant something in remembrance or as a new beginning…Start a new tradition…Do an intentional funeral… These are ways to bring acknowledged, unacknowledged, and non-finite grief out for a conscious conversation. Moving from covert to overt, with the goal of making a relationship with the loss, and getting rid of the unconscious silent prolonged scream that I, for example, think I harbor.
We think of grief as emotional, but in “Dealing With the Physical Impact of Intense Grief” by Batya Swift Yasgur, the author describes the variety of physical reactions to grief. Ranging from elevated blood pressure to takotsubo cardiomyopathy — sometimes called “broken heart syndrome” — which is a “stress response that balloons the heart.” We often wonder about the reaction on our immune system, and its implications to our overall survival. In fact, probably nearly all our systems react to grief in some way.
There is a fairly new grief-related diagnosis in the Diagnostic and Statistical Manual and the International Classification of Diseases, describing a “persistent and pervasive grief response” that goes on longer than a year., and is now called Prolonged Grief Disorder. In order to be diagnosed with Prolonged Grief Disorder, a person must experience at least three of eight additional symptoms that include “disbelief, intense emotional pain, feeling of identity confusion, avoidance of reminders of the loss, feelings of numbness, intense loneliness, meaninglessness, or difficulty engaging in ongoing life” according to Columbia University’s Center for Prolonged Grief. For an adult to meet the criteria for a PGD diagnosis, the death of a loved one must have occurred at least one year ago, and the symptoms must be present most days since the loss and nearly every day for at least the last month.
Our situation is different from losing a loved one (although it includes that) and waiting for the grief to go away. Instead of a major loss which goes farther and farther into the past, our major loss is in the future. We have sort of a reverse Prolonged Grief Disorder. For instance, I expect my losses to get worse and worse until death.
AnCan Foundation, the innovator of virtual support groups, is coming to our 10th Anniversary in less than 10 months. We’ve grown – about one-third of US nonprofits fail in that time, and we have flourished. Starting with 3, or was it 4, meetings, AnCan now boasts 33 virtual monthly events for 16 different conditions. If that’s not evidence enough, annually we serve around 7,000 live; approx. 33,000 through our recordings, and we have close to a half-million who make contact with the AnCan logo somehow or other annually. That’s a lot. Watch out for our new Impact Report that’s in the works.
It’s certainly more than one person can handle. In fact, it’s more than myself, a volunteer, plus 4 contract people and an outside bookkeeper can handle. I’m not the only volunteer. I am so honored and privileged to say it’s more than around 100 volunteers can handle, and we could not manage without your efforts – much gratitude.
For some time, the executive function has been too much for me to manage alone, even with the help of our volunteer Executive Board made up right now of Bill Franklin, David Muslin and Stuart Jordan – btw, we’re looking to add to that too. We’ve been looking to hire executive help and the perfect solution has presented itself.
Some of you may be aware of the term, Fractional Executives – The Charity CFO just ran a podcast. AnCan has been fortunate enough to find one who knows us intimately. Courtesy of the USAF and subsequently, extensive consulting experience at The Mitre Corporation, our Board President, Bill Franklin, is voluntarily reducing his hours at Mitre to take on a contract position of 16-20 hours a week with lil’ ol’ AnCan.
As our Board President since August 2021, Bill knows all the ins and out, he’s seen us grow, and most significantly he’s willing to work with me! Bill’s also looking to phase out of Mitre and find new challenges as he approaches retirement. AnCan provided a great solution and we welcome him as our new Chief Operating Officer.
Bill will continue as Board President as well as assuming oversight over many of the operating and administrative duties, from finance and control to insurance, compliance and many special projects – viz. the Impact Report !?! To be honest, Bill’s been doing a lot of this informally but can now spend legitimate time a couple of days a week to help us put our ship, or maybe we should say ‘our bird’, in better order.
Personally, I am thrilled and excited. There’s no one I can think I would rather work with. I welcome him sharing this job with me, and keeping me on the straight and narrow as he has done since joining the Board many years ago. One other person to thank – another aviator, Bill’s wife Misa. If she hadn’t gotten on his case for spending many volunteer hours with AnCan, Bill wouldn’t have come up with this great solution.
Welcome aboard, Sarge… or should I say, Mr. Prez! AnCan welcomes Air Relief
Hi-Risk/Recurrent/Advanced PCa Video Chat, April 14, 2025
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix, Blue Earth Diagnostic 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!
Editor’s Pick: Testosterone and estrogen return after stopping HT – and play tricks on two gents (rd)
Topics Discussed
Testosterone storms back – but so does estrogen!; Yale Smilow doc requests Dceipher test and MSKCC doc refuses; time for salvage protocol but Canadian protocols for RT and HT not exactly clear; bone biopsy may be best but least invasive method to determine if lesion is metastatic; hot flashes start with Intermittent Hormone Therapy – screwed up ‘sex’ hormones return; how many ways can we lower the HT dose?… or should we prior to at least 18 months duration.
I am really tired tonight i catch up next time thanks and Good night
John A sent: 5:43 PM
my ATM notes don’t mention RT
Michael. Denver sent: 6:00 PM
Thanks y’all. Have to leave early.
Jim Marshall, Alexandria, VA sent: 6:02 PM
Abiraterone Acetate.
AnCan – rick sent: 6:03 PM
relugolix, Orgovyx
Larry (Alaska) sent: 6:03 PM
Mechanism of action of abiraterone is different from Docetaxel. Abi is an androgen blocker. Doce interferes with cell division. (rd: not exactly – it’s more of an androgen destroyer than blocker)
Relugolix suppresses Testosterone (which signals prostate cancer dells to divide).
John A sent: 6:06 PM
562
Larry (Alaska) sent: 6:06 PM
I have my spreasheet for conversion Pmols//L to ng/mL. But I don’t have the figures we are talking about.
Len Sierra sent: 6:06 PM
Levels above 500ng/dl or 17.3358 nmol/L is considered optimal.
Gary V Portland, Oregon sent: 6:07 PM
Sorry Gents I have to leave..Thanks so much for all the information
Jim Marshall, Alexandria, VA sent: 6:08 PM
19.7 = 568. marshall’s math. who agrees
Close enough for government work
Len Sierra sent: 6:11 PM
Bravo, Jim!
Larry (Alaska) sent: 6:17 PM
Does any practice use BOTH pelvic-wide radiation in combination with focused radiation on selected spots? Or is that just never done?
Patient take charge!
Jim Marshall, Alexandria, VA sent: 6:32 PM
Bone Biopsies can be done asleep.
As I contend Hormones will do it to you every time. Jim
AnCan Foundation, the innovator of virtual support groups, is coming to our 10th Anniversary in less than 10 months. We’ve grown – about one-third of US nonprofits fail in that time, and we have flourished. Starting with 3, or was it 4, meetings, AnCan now boasts 33 virtual monthly events for 16 different conditions. If that’s not evidence enough, annually we serve around 7,000 live; approx. 33,000 through our recordings, and we have close to a half-million who make contact with the AnCan logo somehow or other annually. That’s a lot. Watch out for our new Impact Report that’s in the works.