Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 11, 2026
Substack is coming to AnCan… or maybe AnCan is coming to Substack. We’ll be posting the best of all our Reminders. Watch our for more details.
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to rd@ancan.org.
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: Toss up between the silver lining in HT treatment, and slow T recovery.
Topics Discussed
Originally AS Newbie graduates to T3 maybe T4 treatment; mono daro working but dental issues arise; Alaska doc needs a solid GU QB; pros and cons of tolerating hormone therapy; post-RP PSA still going down; … and post RT/HT PSA declining for our Poet; whole body MRI vs PSMA scans for monitoring; still getting the runaround for GU MO at Sibley – but RO set; follow up PSMA now negative for younger Gent; leg pain and fatigue likely not from HT drugs; MRI on T10 prior to spot RT; heavy brain fog suggests switching ARSI but Pluvicto follows; T recovery slow but after 7 months – don’t panic
Chat
Steve Schuler (Seattle) sent: 3:30 PM
My Rad Onc at Fred Hutch was Jonathan Chen, and I felt like he provided competent care. My oncologist was Evan Yu; he’s been bumped up, and now it is Rajitha Sunkara. I like her.
Jim Ekrut, Ft. Worth TX sent: 3:33 PM
I recommend Biologics by McKesson or Onco360 as specialty pharmacies with access to financial aid. I received a grant from PAN through Biologics that covered all costs for one year of Orgovyx.
Steve L sent: 3:36 PM
UW Northwest is the location for Proton Therapy. They may also do other radiation treatment.
Steve Schuler (Seattle) sent: 3:45 PM
I talked to my oncologist (Rajitha Sunkara). and referenced the PATCH study.
Jim Marshall, Vet Sup Grp. Moderator sent: 3:58 PM
CASODEX = Bicalutamide Jim
Jim Ekrut, Ft. Worth TX sent: 4:12 PM
I finished eighteen months of Orgovyx June 19. It did exactly as intended alongside radiation, with my PSA <.01 and testosterone <10 for a full year. My PSA was measured Friday 8/7 , almost seven weeks post-treatment, still <.01 but testosterone has risen to 48. That said, I experienced every side effect listed on the Orgovyx website and more.
Sorry to leave, but I have another meeting commitment. Thanks for the support. All the best!
Jeffrey G sent: 4:21 PM
How old is he?
AnCan–John A sent: 4:21 PM
64
Dave Lied – Pittsburgh sent: 4:23 PM
Thank you all for the informative discussion tonight. Sorry to leave early.
Jim Marshall, Vet Sup Grp. Moderator sent: 5:12 PM
Was on ADT for 5 years, did not budge for 3+ years. Then and now less than 50, Jim
Steve Schuler (Seattle) sent: 5:15 PM
thank you for the feedback, exactly what I wanted!
Barry Blomquist sent: 5:15 PM
Thanks guys good information – next week.
Steve Schuler (Seattle) sent: 5:16 PM
I had been on Zometa when I had teeth removed, and my oral surgeon gave me Pentoxifylline 400mg + vitamin E 450mg for 60 days, which is apparently a protocol that increases blood flow (perfusion ?) and reduces risk of jaw necrosis
Jim Marshall, Vet Sup Grp. Moderator sent: 5:18 PM
When Abi caused Liver issues, I got dropped from 4 to 3 pills a day and good for the next 5years.
Steve Schuler (Seattle) sent: 5:19 PM
EMBR worked for me moderately well, but I dropped it when I started E2, which was a great help to me
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 3, 2026
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to rd@ancan.org.
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: Let’s determine if Gent really has metastatic disease before progressing with treatment.
Topics Discussed
Newbie sees disease progression and starting Pluvicto; bad pulmonary reaction to Erleada for this Newbie who’s switching to City of Hope; possible recurrence for Newbie – needs a GU MO; DeBono’s remarkable VIR5500 may be in play for Frank; determine if Gent is truly metastatic before proceeding with more treatment; starting salvage RT; nipple pain soon after starting holiday; is Dr. John’s pelvic pain PrCa, AUS or something else?; defer to your GU MO not local general MO; fatigue… when is T. replacement safe post HT; signed up for Reel recovery
PSMA PET Multifocal avidity within the prostate with highest in left PZ (SUVm 3.4). There is focal uptake with low SUVm (3.1) in the right scapula and right manubriu, (SUVm 2.9) and T5 vertebral body (SUVm 2.9)
Larry in AK sent: 7:03 PM
I hope it will be a continuing feature.
Len Sierra sent: 7:04 PM
Avery, those are all very low SUV max values. Do you know what the liver uptake was?
AnCan – rick sent: 7:04 PM
they’re all fairly low SUVs, Avery
AnCan – rick sent: 7:05 PM
we understand why they are dubious about your Mx
Avery sent: 7:07 PM
Where will i find the liver uptake in the PSMA PET?
Peter M sent: 7:10 PM
Good night gents! Great meeting.
Avery sent: 7:12 PM
Liver: Stable appearance of multiple simple fluid attenuating hepatic cysts, the largest of which in right lobe measuring approximately 3.1 x 3.5 cm
“Thomas” Matica sent: 7:12 PM
Good night. Great discussion.
Lee Baylin, Baltimore sent: 7:13 PM
good night
AnCan – rick sent: 7:19 PM
From Larry in AK Sorry for coming in late. Has anyone mentioned the estradiolinitiative newsletter has published its firs volume. Read it on the estradiolinititive.org website by clicking on the menu at the top on “Resources” and find “Newsletter” near the bottom of the menu. https://estradiolinitiative.org
Bob Schwartz, USN, Venice, FL. sent: 7:22 PM
The E Newsletter was FANTASTIC! I highly encourages everyone to read it.
Barry Blomquist sent: 7:24 PM
Have to jump, next week:)
Alfredo in Sacramento sent: 7:25 PM
I have to take a call; good night to everyone 🙏
Bob Schwartz, USN, Venice, FL. sent: 7:26 PM
Good mtg., have to go.
Larry in AK sent: 7:27 PM
Last page of the newsletter has my editorial. A lot less dry than the body of the newsletter.
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: Ask for an EKG if you’re on hormone therapy – Dr. Alfredo says it’s cheap!
Topics Discussed
Newbie switches ADT after EKG; wearing a Holter patch; white diet during radiation; AnCan’r signs up for ANDROMEDA; 8 lesions but all above the pelvis call for new QB; no treatment for 12 mo. more, so why worry about what’s available; T returns and PSA says low; Axumin may find what PSMA does not; dental issue; insist on regular DEXA and PSMA scans during treatment; PTEN and TP53 somatic emerge – will it change treatment?; MSKCC doc drops the ball; steady as she goes on mono daro at 89; E2 needs name for its newsletter
Chat
Billy Ingersoll sent: 3:23 PM
QTC 482 from 420/437
Alfredo in Sacramento sent: 3:26 PM
Medicare covers 72% of the EKG (Electrocardiogram) cost. Beneficiaries should budget approximately $4 in out-of-pocket costs. EKG (Electrocardiogram) costs vary 37% across states: from $12 in Arkansas to $17 in Alaska. At $15 nationally, EKG (Electrocardiogram) is a low-cost procedure. For most Medicare beneficiaries, the coinsurance will be under $50. The patient cost of $4 is within the annual Part B deductible ($257), making this relatively affordable for Medicare beneficiaries.
Jim Marshall, Vet Sup Grp. Moderator sent: 3:46 PM
There is GOTO Help. 877-582-7011 if want to ask why. Jim
Avery Becton sent: 3:46 PM
ok. thx
Avery Becton sent: 3:51 PM
Finally I can hear the group on my PC
Bob Schwartz, USN, Venice, FL. sent: 3:58 PM
Great mtg., see everyone next mtg., have to go.
Alfredo in Sacramento sent: 3:58 PM
Gotta go now, best wishes to all.
AnCan–John A sent: 4:11 PM
next-generation sequencing or genomic or somatic test .on the biopsy sample
Jim Marshall, Vet Sup Grp. Moderator sent: 4:12 PM
Genitourinary Medical Oncologist
David D Seattle sent: 4:51 PM
I have to run to another meeting. Have a good evening all.
Alan Moskowitz sent: 4:56 PM
bye all
J. Ward sent: 4:59 PM
What was the date of Len’s write-up again, please?
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: No Newbies – but repeating topics: incontinence; heart issues; and, intermittent vs continuous hormone therapy
Topics Discussed
Foamy gland AnCan’r does well with Pluvicto but has urinary issues; incontinence issues defer salvage RT; PCPEP program solid but time consuming; AnCan’r getting AUS this week; neck fan outperforms venlafaxine for hot sweats; low T and still hot sweats; Gent on abi cuts back his prednisone and has muscle pains; are cardio issue down to oncology treatments/; after 24 mo doublet, is it time for a change?; Dr. E’s available to sort his protocol – our AnCan’r just has to call; ending HT takes time to reverse the side effects
SDHA sig for paragangliomas (noncancerous) and GI stromal tumors, and pheos. We need not be concerned it looks like
Len Sierra sent: 6:18 PM
From the AnCan website, my comments from 2024: Tumor responses improved following a steroid switch from prednisone to dexamethasone in castration-resistant prostate cancer patients progressing on abiraterone: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264443/ Conclusions: Durable PSA responses occur in up to 40% of patients following a ‘steroid switch’ for PSA progression on abiraterone and prednisone
