Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 6, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 6, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 6, 2023

AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix

Dr. Mark Scholz revisited his indictment of prostate cancer overtreatment in our recent webinar, “Invasion of the Prostate Snatchers – 13 Years later!” The recording is still in post-production with PCRI and will be posted asap. Please follow YouTube – AnCan or sign up to our blog https://ancan.org/blog/ to receive notice when posted.

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

Editor’s Pick: If you shortchange your treatment, you may live to regret it … plus more anxiety issues (rd)

Topics Discussed

Remote UCLA facility may provide 2nd rate care; gent resistant to do what it takes; don’t worry about post-Pluvicto until you’ve completed it; win-win trial but anxious; AnCan’s PPI message carreid back to Myovant in person; stay off ladders!; pulmonary/carotid lymph node to be biopsied; prerquisites for Pluvicto; starting Orgovyx; low level recurrence – when to intervene?; do Variants of Unknown Significance become significant?

Chat Log

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

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

 

Dr. Mark Scholz revisits his indictment of prostate cancer overtreatment in next Monday’s webinar, “Invasion of the Prostate Snatchers – 13 years later!” He’ll also field questions about all stages of prostate treatment — send questions now to Joe Gallo, joeg@ancan.org. Jan 30, 8.00 pm Eastern; register at https://bit.ly/3jN3wAk. Registrants will also get a link to the recording.

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

Editor’s pick: Radiation, surgery — or none of the above? (bn)

Topics Discussed

Gleason 9 at age 82, and both surgery and radiation look hazardous; cooling doc’s jets on immediate treatment; “triplet” therapy has a piece missing; do mets show up on PSMA PET even at low PSA?; UCSD or UCSF for Palm Springs resident?; biopsy for “unimpressive” lung nodule?; Crohn’s plus radiation therapy ends in severe rectal damage; triple good news on iron, neuro, cardio; puzzling over “0.9” score for P53 mutation; PSMA and genetic testing seem his best options; long after prostatectomy, urinary problems; pain gone after Herb Geller’s spine surgery; which doc for blood in urine?; new genetic test from Myriad; American Cancer Society’s numbers game.

Chat Log

Ben Nathanson · 6:15 PM For anyone interested in the trial drug Pat Martin mentioned last week (capivasertib), I’ve written about how it works: https://bennathanson.substack.com/p/caught-in-the-akt

Paul Freda · 6:45 PM If anyone has had experience with a spot on their Pancreas (NOT Prostate), please contact me. Paul Freda pfreda@gmail.com Thank you.

Jim Marshall, Alexandria, VA · 6:55 PM If anyone is considering ADT, ensure you ask for and get a Baseline TESTOSTERONE number. This will be helpful for when you come off of ADT. You will know how high you hope the the level testosterone should return to.

Les Schjelderup · 6:57 PM Agree with Jim.

Joe Gallo · 6:57 PM Adding to Jim Marshall – before ADT also get a DEXA Scan (bone density scan)

Julian – Houston · 7:03 PM Totally agree! This was the protocol I followed.

Joel Blanchette, Miami Beach, FL · 7:07 PM I am at 4 on Orgovyx

Frank Fabish Columbus OH · 7:09 PM Guys I got to get going. On Sunday Gail and I will be heading to Orlando for Myovant annual meeting to present our stories as a patient ambassador and caregiver ambassador for Orgovyx. I will update all in first Zoom in February.

Alan Moskowitz · 7:10 PM I was at 15 after 2 months of Xtandi and Lupron.

Joe Gallo · 7:14 PM WEBINAR – ‘The Invasion of the Prostate Snatchers: 13 years Later’: An Evening with Dr. Mark Scholz It’s for those of us on Active Surveillance (AS), those considering AS, as well as everyone else with more advanced prostate cancer, and everyone in between. Dr. Mark Scholz, co-author of the groundbreaking 2010 book: “The Invasion of The Prostate Snatchers”, will be joining to discuss where we are 13 years later. Spoiler alert: Things are better but the invaders still are snatching and nuking large numbers of prostates unnecessarily. Join us for this fantastic evening Monday, Jan 30, 2023 8:00 PM – 9:30 PM EST Registration URL https://attendee.gotowebinar.com/register/3476369222172706645

Harrison M. (Myriad Genetics) · 7:42 PM the number is reported at around 10-15% men

Harrison M. (Myriad Genetics) · 7:44 PM Tamsulosin

AnCan – rick · 7:44 PM tamsulosin, Flomax

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 6, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 16, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 16, 2023

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

Editor’s pick: Pain … is it cancer or something else? And Prof. Herb explains proteomics (rd)

Topics Discussed

Welcome to Myriad; new man hospitalized for heart issues; capaversitib antiangiogetic trial; SBRT side effects; non PSMA sensitive lesions demand chemo; proteomics; pain – is it cancer or something else?; new PCa #s are a scandal in waiting; Brawley the bully; remembering Cal VanZee GRHS; RT proctitis/colitis causes fatigue and urgency; white counts don’t return post chemo; possible recurrence signals return to Center of Excellence GU HCPs … for TWO of our Gents!

Chat Log

Pat Martin sent · 6:31 PM capivasertib….NCT05348577

Bob G sent · 6:38 PM Doing OK – a little achy but that’s from trying Pickleball today. Visiting friends in Outer Banks. Nice to get away for a while. How are you doing?

Pat Martin sent · 6:38 PM I haven’t seen Jeff Marchi from San Francisco for a while…is he doing OK?

AnCan – rick sent · 6:39 PM Jeff is on today if you want to message him

Pat Martin sent · 6:39 PM Just checking on him.

Pat Martin sent · 6:45 PM From the hand out, “works by inhibiting the proliferation of tumor cells.”

Frank F · 6:59 PM Got to go guys. Thanks for the sharing.

John A sent · 7:00 PM goodnight Frank

Jim Marshall, Alexandria, VA sent · 7:18 PM My sister is 71 and just diagnosed with Breast Cancer.

Wang Gao Shan – Panama sent · 7:19 PM My Mom was 73 years old when she was diagnosed with Breast Cancer.

Julian – Houston sent · 7:22 PM have to go for tonight – damn good conversations!!!

Pat Martin sent · 7:30 PM I use dicyclomine

Norm Pollock sent · 7:35 PM biogenesis intestinal support complex and doctor’s best pepzingi

Pat Martin sent · 7:38 PM What kind of chemo were you on?

AnCan – rick sent · 7:39 PM I believe it was only docetaxel

AnCan – rick sent · 7:41 PM Here’s a good convo on bone marrow Bx https://www.youtube.com/watch?v=2sArKYH1T7I

Bob G sent · 7:52 PM Got to go. Thanks everyone.

Geoff sent · 7:57 PM After Albert Chang was passed off to Anthony Wong at UCSF Radiation Oncology.

Sofia Sotelo sent · 8:00 PM I’ve got to jump. Thank you, have a great night

Mike Yancey – Oklahoma sent · 8:07 PM Gotta run. Great topics and discussions

Pat Martin sent · 8:09 PM Thanks much for listening and coaching

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 6, 2023

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

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

 

Happy New Year to all … may it be healthy!

Please consider a donation based on the support you’ve gotten from these recordings in 2022. Read our letter at https://us14.admin.mailchimp.com/camp…

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://www.gotomeet.me/AnswerCancer       Veterans Healthcare … 4th Thursday @ 8.00 pm Eastern https://www.gotomeet.me/AnswerCancer

Editor’s Pick: Is AnCan onto yet another largely unreported side effect – Pluvicto & myopathy (muscle wasting)? And 20% of mHSPC men show progression w/o PSA rise (ARCHES trial)!!  (rd)

Topics Discussed

Brainstorming hot flashes – from acupuncture to Megace; pain management; Pluvicto and myopathy; Pluvicto availability poses tx dilemma; more pain management re. Pluvicto; logistics of a Pluvicto session; urine stream and advanced PCa; upcoming Sholz webinar; better evidence from testicular PCa Mx could offer next tx guidance; sleep apnea; Payer attitude to repeat PSMA scans; what sequencing, PSMA and pathology offer; 20% of men on LHRH don’t show PSA rise with radiographic progression (see Len’s Chat post below); next step – BAT

Chat Log

Jim B · 8:17 PM Hi Bob, I am feeling pretty good all around. Finally I am in FL and getting settled in. On my first day here I was able to get a lot more exercise than up in the cold weather. How’s your WBC coming along?

Jimmy Greenfield · 8:26 PM BedJet3 Demo: https://youtu.be/t6i1j3tw8mQ

Peter Kafka – MAUI · 8:48 PM Organic dried prunes on a daily basis has helped me keep things moving. But strong drugs can be tough.

AnCan – rick · 9:13 PM Vets Group … https://ancan.org/veterans/

Paul Freda Lake Worth FL · 9:17 PM Where do we sign up for the Jan 30 Webinar ? Link ?

AnCan – rick · 9:20 PM Scholz webinar Scholz webinar https://attendee.gotowebinar.com/register/3476369222172706645

Bob G · 9:26 PM Testicular mets case study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209256/#:~:text=Most%20secondary%20testicular%20metastases%20originate,for%20advanced%20disease%20%5B3%5D.

Phil Snyder (Houston) · 9:42 PM Have to leave Gentlemen, thanks for listening in on the interesting exchange.

Joel Blanchette Reston, VA · 9:44 PM I researched about 6 months ago and the Inspire cost $40,000

gary peters · 9:46 PM Yikes. No wonder they are trying to market the heck out of it. I would try a lot of masks before spending that.

Paul Freda Lake Worth FL · 9:49 PM https://www.easybreathe.com/Breathing-Machines/CPAPs-c832/

Joe Gallo · 9:49 PM Scholz webinar https://attendee.gotowebinar.com/register/3476369222172706645

gary peters · 9:56 PM LOL. I did not know that cost. Happy New Year

George Rovder, Arlington VA · 10:03 PM Inspire costs $1,400 with Medicare, according to Inspire website https://inspiresleep.com/ cost-and-eligibility

AnCan – rick · 10:06 PM @JeffW .. from Telix – “Medicare typically reimburses one scan for suspected metastases prior to definitive treatment, and scans after definitive treatment (biochemical recurrence) are not limited to a number, but all must meet medical necessity.   Commercial payors typically have similar policies, but there are so many different plans that the answer can vary. Almost all commercial payors require prior authorizations so the patient should know if the scan will be reimbursed before arriving for the test.”  Hope this helps.

Len Sierra · 10:08 PM Armstrong recommends imaging every 3 months in mHSPC. From the ASCO 2022 Annual Meeting: See yellow highlights below. https://dailynews.ascopubs.org/do/10.1200/ADN.22.200934/full/?cid=DM10522&bid=171588107    ARCHES Analysis Underscores Importance of Regular Imaging to Detect Progression in Patients With mHSPC Receiving Potent AR Inhibitors May 26, 2022   Dr. Andrew J. Armstrong Key Points: • Post hoc analysis of the ARCHES trial identified frequent discordance between radiographic progression and prostate-specific antigen (PSA) progression among patients with metastatic hormone-sensitive prostate cancer (mHSPC) receiving enzalutamide. • The results suggest that regular radiographic imaging, rather than serial PSA testing, is the preferred method for monitoring disease progression in patients with mHSPC receiving a potent androgen receptor inhibitor.

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 6, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 13, 2022

A heads-up – Dr. E will join us at the next meeting, Dec 19! We’ll start an hour early.

Calendar peculiarities make this our first Tuesday meeting in three weeks. The recording ends suddenly but it’s complete — the meeting came to an unexpected end when one of the moderators pushed the wrong button.

This month marks our only fundraising campaign of the year. All on the AnCan distribution already received our letter, which includes AnCan highlights of 2022. Please consider a donation based on what you’ve gotten from these recordings.

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://www.gotomeet.me/AnswerCancer
Veterans Healthcare … 4th Thursday @ 8.00 pm Eastern https://www.gotomeet.me/AnswerCancer

Editor’s pick: Metastasis with PSA of 1 uncovered by chance. Plus a memorable quote from Dr. Antonarakis: “Don’t remember your case? Mark, we could write a movie about your case!” (bn)

Topics discussed

Marking the passing of an on-and-off participant who had his own ideas about therapy; abdominal growth tips off primary care physican to a lymph node metastasis despite PSA of 1; strategies to fill the bladder just right for radiation; scary seizure-like episode at the wheel after chemo; reread of PSMA and Axumin scans at another hospital finds previously unrecognized lesions; “Don’t remember your case? Mark, we could write a movie about your case”; good PSA response from chemo with few side effects; a seldom-made appeal for AnCan donations; low platelets puts a pause on chemo and might preclude Pluvicto later; white blood cell count still isn’t rising; pressing Orgovix maker on PPI interactions; emancipated from ADT by Dr. E; pain-free at last; concordance scan for Pluvicto patient?; ankles swelling — why?

Chat Log

Pat Martin · 6:12 PM I really appreciate your input. I will get bone scan and whole body scan tomorrow. Next week I’ll get results

Peter Kafka – MAUI · 6:36 PM I have a general question prompted by Cliff’s story. Is it routine for tissue taken from a TURP to be analyed for pathology. Might a GL-9 been seen earlier on a lower level?

Tonyfig · 6:37 PM Is there a link for Prostate Cancer Treatment Guidelines?

Carl · 6:43 PM www.pcf.org/guide/prostate-cancer-patient-guide/

AnCan- rick · 6:54 PM For NCCN PCa Guidelines, google NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines(r)) Prostate Cancer Version 4.2022 – May 10, 2022 . I do not have the link , just the download.

David M · 6:59 PM Could have been dehydation?
David M · 6:59 PM dehydration

AnCan- rick · 7:52 PM https://www.foxchase.org/daniel-geynisman

Len Sierra · 7:57 PM Types of PPIs Omeprazole (Prilosec), also available over-the-counter (without a prescription) Esomeprazole (Nexium), also available over-the-counter (without a prescription) Lansoprazole (Prevacid), also available over-the-counter (without a prescription) Rabeprazole (AcipHex) Pantoprazole (Protonix)

Peter Kafka – MAUI · 7:57 PM Pantroprazole, generic name protonix

AnCan- rick · 7:58 PM Maria Calkins …. Myovant

Frank Fabish Columbus OH · 8:09 PM got to go. thanks for listening.

James Davidson (Houston) · 8:14 PM Gotta run – good evening, gents!

Mark Thompson, Rehoboth Beach, DE · 8:14 PM My thoughts and prayers are with you
Herb. Thanks again for all your help. Pain can really get to you.

Pat Martin · 8:15 PM Heading out. See you in a couple weeks