Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 20, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
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:Let’s talk financial assistance … and a little mutation edcuation!! rd
Topics Discussed
PSA recurrence from mystery source; appointment made with a real GU med onc; what’s this TP53 index – allele frequency??; GU med oncs at MSKCC; chemo drives down PSA but no change in scans; buy a hard hat Dr. Kwon – Oliver Sartor’s inbound!; keep your hair with chemo; monitoring disease post salvage RT; finding financial assistance; when it comes to PSMA scans, mCRPC not the same as mHSPC; PSA up post chemo while abi challenges liver function; MPCP doesn’t provide patient feedback; PSA creeps up on IHT.
Chat Log
David Muslinsent · 6:25 PM
I did say that because he had a met in his girdle
Herb Courtney sent · 6:25 PM
Re the Axumin scan, I had a negative one at a PSA of ~6
sent · 6:30 PM
it took my brother well over a year before his post-radiation PSA started to drop
AnCan – ricksent · 6:42 PM
Bless you Norm!!!
George Rovder, Arlington VA sent · 6:54 PM
Thank you all. I have to go. George
Frank Fabish Columbus OH sent · 7:11 PM
Thanks guys for sharing. gotta go.
Herb Courtney sent · 7:16 PM
Thanks guys. Gotta go to dinner.
John A sent · 7:24 PM
Headache is getting to me so I have to go, but I want to thank everyone who wrote or called me with support since my head injury. If I wrote gibberish or wrote twice to someone sorry, I discovered I sent several emails in a blackout! If I forgot a message try again. I am slowly improving.
gary peters sent · 7:31 PM
I believe Rick may be referring to the Formula 509 trial
Don Eisner sent · 7:40 PM
Have to leave now
Phil Snyder (Houston) sent · 7:52 PM
Have to leave.
Jim – Tucson sent · 8:05 PM
Got to leave, thanks.
Richard Tolbert sent · 8:07 PM
Thanks Jim. One of my former reps works for Pfizer who markets XTANDI with Astellas is working with his leadership to see if they will provide assistance. In 2022 I had a grant from The Assistance Fund that covered both ORGOVYX. I was denied 2023 funding due to lack of funding.
Pat Martin sent · 8:17 PM
Gonna head out. See you all next week
Stan Friedman sent · 8:26 PM
Sorry, I’m fading and need to leave. Thanks for the input on possible MSK docs. Will keep you up to date.
Bob G sent · 8:31 PM
Thanks all. Gotta get up early for program where I’m matched with a cancer researcher. Going to his lab tomorrow morning.
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/
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?
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
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: 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?
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, Nov 15, 2022
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/
Editor’s Pick: Severe side effects – a “Lupron Frankenstein” and an abdomen swollen by chemo – plus a surprise case of shingles. (bn)
Topics Discussed
Newcomer from northern Michigan finds he’s 5+4; shingles brought on by ADT?; end of radiation and a steak dinner; benefits of pelvic floor therapy; Lupron turns a newcomer’s life upside down; are Orgovyx and darolutamide chemotherapy? ; mini-poll on hot flashes: who uses what?; putting chemo on pause after success; self-advocating finally gets him Pluvicto; “what is chemo?” revisited; funny-smelling stool following chemo; chemo abdominal swelling diagnosed as ascites — he’s now on Pluvicto and improving; end-of-life discussions; gabapentin for neuropathy leaves him loopy; latest scan shows 30 bone mets gone.
Chat Log
Richaed Wassersug to Everyone 6:36 PM
Herb,
Richaed Wassersug to Everyone 6:36 PM
Can you put the ADT and Herpes ref here?
Herbert Geller to Everyone 6:37 PM
Andrologia . 2018 Mar;50(2). doi: 10.1111/and.12863. Epub 2017 Aug 8. Increased risk of a herpes zoster attack in patients receiving androgen deprivation therapy for prostate cancer F J Wu 1, L T Kao 2, S Y Sheu 1, H C Lin 3 4, S D Chung 4 5 6
Bob G to Everyone 6:37 PM
I had shingles at age 30 due to stress.
Paul Freda Lake Worth FL to Everyone 6:41 PM
Stan How is everything going with you ? Any new treatments ? PSA stable ? I am smae except for a spot on my Pancreas. Doc says its stable and not likley to become cancerous. Hope he is right. Paul Freda AEPi 1969
Steve Roux, Elk Rapids, MI to Everyone 6:44 PM
Hey guys, here is the clinical trial info – NCT#04513717 Cancer Research Consortium of West Michigan NRG-GU009, “Parallel Phase III Randomized Trials for high risk prostate cancer evaluating intensification of concurrent therapy for higher genomic risk with radiation”
Herbert Geller to Everyone 6:54 PM
Here is more information on the trial by the NRG:Parallel Phase III Randomized Trials For High Risk Prostate Cancer Evaluating De-Intensification For Lower Genomic Risk and Intensification of Concurrent Therapy for Higher Genomic Risk with Radiation (Predict-RT*) *Prostate RNA Expression/Decipher To Individualize Concurrent Therapy with Radiation Principal Investigator Paul L. Nguyen, MD, Co-Principal Investigator(s) A. Oliver Sartor, MD
Steve Roux, Elk Rapids, MI to Everyone 7:07 PM
My brother David, with ALS, was given a weekly ADT shot, NOT Lupron, which gave him these same symptoms I hear him saying. David quit the weekly shots just to have some level of normal quality of life.
Joe Gallo to Everyone 7:12 PM
len@ancan.org
Joe Gallo to Everyone 7:12 PM
embrwave
Bob G to Everyone 7:13 PM
I have a question, but have to step out for 5 – 10 min.
Steve Roux, Elk Rapids, MI to Everyone 7:14 PM
Guys, THANK YOU for allowing me to sit in for this. I will be back for future meetings! But I need to go attend another meeting!
Julian Morales – Houston to Everyone 7:38 PM
And many more!!!!
AnCan – rick to Everyone 7:40 PM
Thank you all
AnCan – rick to Everyone 7:50 PM
Beginners Guide to the End, BJ Miller MD and Shoshana Berger
Frank Fabish Columbus OH to Everyone 7:56 PM
Got to go guys. Thanks for the updates. I see my Doc next Tuesday for Labs and Exam.
