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
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: 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/
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.
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.
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: 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, 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/
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
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 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/
Editor’s pick: Five of our Regulars wrestle with recurrence this week; and one more is his own best advocate to get a scan(rd)
Topics Discussed
Eminent internist handles Gleason 4+5 diagnosis well; recurrence points to doublet therapy; abiraterone can result in cardio/BP issues; innovative GU med onc addresses lung spots with switching meds before trying RT; Gent finds his own NIH trial to his doc’s chagrin; T. flows back well post Orgovyx; PSMA scan shows oligoMx recurrence – AnCan reassures anxious Gent; with too many lesions, spot RT may yield to chemo; finally feeling better post prednisone; enzalutamide makes another man dizzy; doc agrees on FDG PET for concordance with PSMA but shies away for Payer reasons; neuroendocrine blood markers; Jimmy G remembers Jimmy B. – and Gent shares his Merkel Cell history.
Thanks for those private messages to me about being afraid. I can’t seem to reply privately so thanks everyone!
Len Sierra sent · 7:18 PM
According to Dr. Karim Fizazi, Darolutamide was not associated with a higher incidence of seizures, falls, fractures, cognitive disorder, or hypertension than placebo.
