Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 24, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 24, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 24, 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

Buy AnCan swag at https://ancan.org/shop/ …. T-shirts and sweatshirts!

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/

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… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/

Editor’s pick: Facing the future as a three-year drug holiday falters. (bn)

Topics Discussed

Smooth recovery for kidney transplant patient who chose surgery over radiation; beginning of the end for a three-year drug holiday; turning to Pluvicto after chemo failure — which treatment is worse?; what it’s like undergoing Pluvicto therapy yet again; off ADT for 18 months, but now unexplained fatigue as PSA rises; controversy over Jonathan Epstein; prophylaxis for ADT bone loss; when triplet therapy makes sense; putting out the welcome mat for questions.

Chat Log

Peter Kafka – Maui · 7:20 PM
How much radiation from Pluvicto can a person safely have if multiple cycles are involved?

Al L · 7:26 PM
i didn’tmention it but I talk to Dr Scholz next week as well. He has patients that have had more Pluvicto sessions than I have had. I will be asking him about tolerating multiple rounds.

Peter Kafka – Maui · 7:33 PM
Has Marc had previous PSMA scans? Have they shown up stuff? Just wondering with low PSA profile.

Rick Davis · 7:45 PM
The Active Surveillor

Gary P · 7:52 PM
Here is the WP article:

Gary P · 7:54 PM
https://www.washingtonpost.com/health/2023/10/22/johns-hopkins-jonathan-epstein-pathology/

Julian – Houston · 7:54 PM
check this article out: https://www.sportskeeda.com/pop-culture/news-why-jonathan-epstein-placed-leave-johns-hopkins-pathologist-addresses-alleged-misdiagnosis-leading-patient-s-bladder-removal?&p2=%5EEQ%5Edec21%5E&prod=HP&cmpgn=dec21&annot=false&sameTabLaunch=false&o=APN12179&installSource=direct&geo=en_US&browser=firefox&darkMode=false&ueid=003fc064-7553-4a55-b6ea-be63cd29de9e&doi=2021-12-26

Peter Kafka – Maui · 7:56 PM
NY Post article from 10-23-23

Peter Kafka – Maui · 7:56 PM
https://nypost.com/2023/10/23/news/johns-hopkins-doctor-allegedly-bullied-staff-to-match-his-wifes-diagnoses-improperly-removed-bladder-report/

Rick Davis · 8:03 PM
Howard’s blog is at https://howardwolinsky.substack.com/

Peter Kafka – Maui · 8:17 PM
What is Chucklet therapy

Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 24, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 10, 2023

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

Buy AnCan swag at https://ancan.org/shop/ …. T-shirts and sweatshirts!

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/

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… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/

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.
  • TonyFigsent · 4:00 PM
    Brandan Guercio, MD. GU Medical oncologist at Strong. https://www.urmc.rochester.edu/people/26819600-brendan-j-guercio
  • TonyFigsent · 4:01 PM
    Ask to be assigned to him. Harvard Medical degree, MSK Fellowship
  • “Thomas” Maticasent · 4:10 PM
    Where are these “protocols” and/or “guidelines” that Rick mentions?
  • sent · 4:16 PM
  • AnCan – ricksent · 4:37 PM
    Interval workouts, Gents …. I’m standing in for Jimmy. I do them on the rowing machine. eg 2 min on, 2 min off.
  • Geoffsent · 4:40 PM
    Can Jack throw out a couple of lit. references for us?
  • AnCan – ricksent · 4:45 PM
    Here you go Geoff… A Masterclass on Reversing Visceral Fat to Increase Longevity and Reduce Chronic Disease https://podcasts.apple.com/us/podcast/a-masterclass-on-reversing-visceral-fat-to-increase/id1381257272?i=1000629888710&ign-itscg=30440&ign-itsct=catchall_podcast_ep
  • Jeff G.sent · 4:45 PM
    I eat it with date syrup or pomegranate molasses, or maple syrup or honey. Sometimes I add roasted almond slivers, and raisins.
  • Geoffsent · 4:46 PM
    Thanks for the link!
  • Jim Marshall, Alexandria, VAsent · 4:53 PM
    STEVE -Say the Somatic test is REQUIRED for treatment to proceed.
  • Herb Courtney, Oak View, CAsent · 4:59 PM
    Gotta go. Thanks all. Another good learning experience.
  • sent · 5:08 PM
    Thank you all, need to sign off
  • Julian – Houstonsent · 5:16 PM
    Need to go! Thanks!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 24, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 2, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 2, 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.

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

Buy AnCan swag at https://ancan.org/shop/ …. T-shirts and sweatshirts!

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/

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… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/

Editor’s pick: What next… more Keytruda or switch to Pluvicto?? (rd)

Topics Discussed
Navigating slow-developing recurrence; early days treating denovo lymph mets; Embr to the rescue; post-RT urinary stricture creates problem; hormone therapy poses exercise issues for some of our older Gents; intermittent immunotherapy; new hip after much HT; Group suggests patience before switching therapy; older Gent favors savings to hot flashes; what next when HT does its job? – exercise and a GU med onc!

Chat Log

  • Gary Psent · 5:37 PM
  • GARY Zsent · 5:38 PM
    Thank you for the link, Gary P.
  • GARY Zsent · 5:38 PM
    Thank you, all
  • Boykin Jordan – Springfield, VAsent · 5:46 PM
    Do we meet every week?
  • Jim Marshall, Alexandria, VAsent · 5:47 PM
    Meet 1st & 3rd Mondays 0800pm ET and 2nd and 4th Tuesday 0600pm ET . Jim
  • Boykin Jordan – Springfield, VAsent · 5:48 PM
    Thanks Jim — I’ll update my calendar
  • AnCan – ricksent · 5:56 PM
    Embr wave Ancan50
    https://embrlabs.com/products/embr-wave-2
  • sent · 6:08 PM
    I’m in Palatine and am always looking for people to bicycle with.
  • russ hooversent · 6:16 PM
    holmium laser enucleation procedure
  • sent · 6:24 PM
    773-294-4151 I’m off to AZ on the 15th for the season, let’s definitely get together in the spring
  • sent · 6:38 PM
    Akeega contains two active substances: niraparib and abiraterone acetate.
  • Julian – Houstonsent · 6:39 PM
    Great talk tonight again! Catch you next week. Thank you.
  • GARY Zsent · 6:58 PM
    Gentlemen – Big thanks to all. Had Mohs outpatient surgery 730am today for basal cell on side of face…need to say goodnight for today’s forum. I look forward to our next one. Best, Gary Z.
  • Boykin Jordan – Springfield, VAsent · 6:58 PM
    Good night all. I’ve learned a lot.
  • Carlossent · 7:00 PM
    Thanks for the time.
  • Frank Fabish Columbus OHsent · 7:08 PM
    Got to go. Thanks all.
  • Carlossent · 7:10 PM
    Got to go, Thanks.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 24, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 26, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 26, 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.

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.

Buy AnCan swag at https://ancan.org/shop/ …. T-shirts and sweatshirts!

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/

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… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/

Editor’s pick: PSMA scan miraculously clear but they waited 2+ hours to take it — is it great news or a washed-out scan?

Topics Discussed
Lupron, radiation, and chemotherapy haven’t worked for non-PSMA-avid Vietnam vet who’s now struggling with neuropathy; kidney transplant complicates a choice between surgery and radiation; five years of ADT success despite multiple bone mets — due for a drug holiday?; metastasis is gone in his new PSMA scan — but maybe they bungled it; time to scale back from monotherapy to nothing?; check your urine before depending on calcium supplements or they might not work; Bayer won’t help pay for darolutamide — what are my options?

Chat Log

Jim B · 6:31 PM
Hello David!

AnCan – rick · 6:37 PM
Sumit Shah is a GU med onc

Jim Marshall, Alexandria, VA · 6:41 PM
Am Vietnam Vet. Marshall-James@comcast.net 703-338-7341 and a 100% Disbaled Vet

Joel Blanchette Reston, VA · 7:01 PM
Paller Channing

Matt Krieger · 7:06 PM
For Boykin, what makes a protastectomy less likely to cure, is it the evidence of vesicle invasion?

Matt Krieger · 7:09 PM
Thank youm and this sounds familiar, my nomogram had a lower likelihood of cure with protastectomy than what Boykin’s sounds like.

Jim Marshall, Alexandria, VA · 7:26 PM
Sounds like a Bone Scan is in order to find out if the Bone Meds are still active. Jim

Jim Marshall, Alexandria, VA · 7:28 PM
Abby for 5 years, 13+ months Holiday and Testosterone took 10 months to begin to recover. Then it was 113, 33, 134.

Boykin Jordan – Springfield, VA · 7:29 PM
What is oktehome?

Jim Marshall, Alexandria, VA · 7:29 PM
Castrate you like they do bulls.

Gary P · 7:29 PM
orchietomy

Jim Marshall, Alexandria, VA · 7:30 PM
Goodbye the family jewels.

Gary P · 7:30 PM
orchiectomy

Boykin Jordan – Springfield, VA · 7:30 PM
I got it now. Thanks!

AnCan – rick · 7:32 PM
https://www.prostatecentre.com/about-…

Kirt Schaper · 7:39 PM
PYLARIFY® (piflufolastat F 18) Injection Fluorine F 18 decays by positron ,(β+) emission and has a half-life of 109.7 minutes

AnCan – rick · 7:40 PM
Elimination Half-life: 3.47 hr Excretion: Urine (~50% [first 8 hr post dose])

Kirt Schaper · 7:41 PM
elimination half-life is the length of time required for the concentration of a particular substance (typically a drug) to decrease to half of its starting dose in the body

David Muslin · 7:43 PM
Very smart to measure the time waiting and checking name on pee cup. Good lesson for us all.

AnCan – rick · 7:43 PM
LEARN MORE ABOUT HOW 18F IMPROVES IMAGE CLARITY PET/CT with 18F has higher sensitivity and better resolution than PET/CT with 68Ga, potentially facilitating more accurate interpretation and reporting of disease assessment16 18F has a longer half-life than 68Ga (110 minutes versus 68 minutes), allowing for more widespread availability as well as more convenient and flexible scheduling for patients and staff3,17 https://www.pylarify.com/pca-imaging

Bob McHugh · 7:45 PM
My PLY scan at Mtg. Sinai was performed at 76 minutes,

Unknown · 7:49 PM
Thanks all!

Unknown · 7:57 PM
Thank you, Rick, Dr. John, James M. , and everyone! I look forward to participating next week.

Jeff G · 8:15 PM
Since I started eating tofu daily and recently started soy isoflavones, my hot flashes are gone

Jeff G · 8:16 PM
IsoRel 200 mg daily ( isoflavone)

Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 24, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 12, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 12, 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.

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’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/

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… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/

Editors pick: His growing prostate tumor causes pain, but he’s “too old” for treatment. (bn)

Topics Discussed
At the end of his treatment road, a spirited Carl Forman speaks to us from home hospice — “it’s almost like a spa”; prostatectomy at age 49, recurrence at 58, now on ADT and feeling “like a Mack truck hit me”; PSA stops creeping higher and stands still; high fever, swollen groin keep returning — is it his artificial sphincter?; radiology report suggests he’s developing MS — why’d medonc say nothing?; growing tumor causes prostate pain, but docs keep ruling out treatments; a month after ADT, testosterone is up tenfold; managing uncharacteristic low spirits after surgery; safe to walk the streets near Penn?; weighing a 20% fracture risk from spine radiation against the benefits; Myovant sold; mutations spring up out of nowhere in new somatic report; update on AnCan’s Great Nonprofits ranking; we’re no stranger to palliative care.

Chat Log
AnCan – rick · 6:12 PM
Forman – over 5 years… Sep 2018

Unknown · 6:17 PM
Carl Forman carl.forman@gmail.com

AnCan – rick · 6:35 PM
Gents – please be aware that AnCan has spoken often about end-of-life options and hospice.

AnCan – rick · 6:38 PM
We actually had an amazing session with Prof Bill GRHS that I think is accessible on our website. I will see it.

AnCan – rick · 6:56 PM
Prof Bill Burhans GRHS discusses hospice and end-of-life https://ancan.org/20064-2/ …..

AnCan – rick · 7:20 PM
cabazitaxel (Jevtana) vs docetaxel (Taxotere)

Alan Babcock · 7:21 PM
I have another meeting. See y’all next wek.

AnCan – rick · 7:24 PM
Suprapubic catheter is a tube above the prostate to the bladder that exits to a bag.

Len Sierra · 7:46 PM
Prostate-Specific Antigen Level at the Time of Salvage Therapy After Radical Prostatectomy for Prostate Cancer and the Risk of Death Derya Tilki , MD1,2,3; Ming-Hui Chen , PhD4; Jing Wu, PhD5; Hartwig Huland, MD1; Markus Graefen, MD1; Osama Mohamad , MD, PhD6; Janet E. Cowan , MA7; Felix Y. Feng , MD6; Peter R. Carroll, MD, MPH7; and Anthony V. D’Amico , MD, PhD8

AnCan – rick · 7:48 PM
Tx Len

Neil Sundstrom · 7:50 PM
someone is breathing heavily and it is hard to hear. Please mute

AnCan – rick · 7:50 PM
It’s John Kish who is speaking

Julian – Houston · 8:00 PM
Orgovyx: 1-833-674-6899

Julian – Houston · 8:01 PM
Orgovyx does too!

Len Sierra · 8:04 PM
Sumitovant Biopharma, a subsidiary of Sumitomo Pharma, acquired Myovant Sciences for $1.7 billion in an all-cash deal.

AnCan – rick · 8:08 PM
Tx again Len

Julian – Houston · 8:11 PM
Thanks everyone – Got to go = See you all next week!

Peter Gudel · 8:11 PM
See you all next time..

Unknown · 8:13 PM
Myovant bought by sumitoma subsidiary sumitovant biopharma

Peter · 8:17 PM
good night all!