Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 3, 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: Hang in to the end when we have a good discussion around BCR – biochemical recurrence. (RD)
Topics Discussed
Update on Professor Herb; recurrence in BRCA+ man reluctant to undergo salvage RT; firsthand experience with pelvic floor therapy; how does testosterone recover post HT; more chemo vs worsening side effects as PSA plateaus around nadir; what type of RT is being used for salvage?; with Pluvicto shortage, maybe Xofigo first?; Pluvicto triage update; T comes back and PSA moves a tad post treatment; deciding whether to complate Pluvicto cycle; when to intervene post RP as PSA inches upwards; what constitutes biochemical recurrence?;
Ben sent · 5:55 PM An important element of EMBARK was that study treatment was suspended once the PSA was less than 0.2 or if it was less than 0.2 at week 36 and then restarted when the PSA was greater than or equal to five for those without prior radical prostatectomy and greater than or equal a two with those who had received primary prostatectomy.
Terrill SF sent · 6:08 PM must leave early…see you all next time
Anthony Pizzoferrato sent · 6:11 PM I will listen to the video for any more information. Need to go. Thanks everyone.
Anthony Bill Franklin sent · 6:20 PM Wang Gao Shan, also, don’t worry too much about the number but more about how you feel and what you can do. Prior to my treatment my T levels were always over 600. Post treatment it never came back higher than 350 but I really can’t tell the difference. Still very active physically and sexually and no worries. It’s all how you feel.
Jack sent · 6:22 PM excessive B-6 can interfere with the effectiveness of cisplatin.
Frank Fabish Columbus OH sent · 6:31 PM Got to go. Thanks guys.
Mark Thompson, Rehoboth Beach, DE sent · 6:35 PM Thank you all for a great discussion tonight. I have several doctors appointments tomorrow so I am going to bed. Still dealing with extreme fatigue. Thank you, Mark Thompson
Bob G sent · 6:57 PM Oh! will send an email with some ideas
Julian – Houston sent · 6:59 PM Another great discussion. Thanks everyone. Good night.
sent · 7:00 PM Nice meeting everyone. Thank you for the support and constructive input. Be safe. Stay strong.
Don Eisner sent · 7:01 PM Have to leave
Ben Nathanson sent · 7:01 PM PSA persistence/recurrence after RP is defined as * failure of PSA to fall to undetectable levels (PSA persistence) or * undetectable PSA after RP with a subsequent detectable PSA that increases on 2 or more determinations (PSA recurrence) or that * increases to PSA less than 0.1 ng/mL. RTOG-ASTRO (Radiation Therapy Oncology Group – American Society for Therapeutic Radiology and Oncology) Phoenix Consensus: 1) PSA increase by 2 ng/mL or more above the nadir PSA is the standard definition for PSA recurrence after EBRT with or without HT; and 2) A recurrence evaluation should be considered when PSA has been confirmed to be increasing after radiation even if the increase above nadir is not yet 2 ng/mL, especially in candidates for salvage local therapy who are young and healthy.
John A sent · 7:10 PM sorry to leave mid discussion guys, gotta go
Joe Comanda sent · 7:13 PM What is the proper approach to ask questions in this group: 1) save them up for the next meeting or 2) send email questions or 3) put them in this chat list?
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 20, 2023
AnCan is grateful to the following sponsors for making this recording posssible:
Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
IF YOU HAVE NOT YET WRITTEN TO THE FDA ABOUT THE PLUVICTO SHORTAGE – PLEASE DO. DIDN’T RECEIVE OUR REQUEST … LMK rd@ancan.org
UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one Wed, 3/39 8pm Eastern Dr. Rachel Rubin + Pelvic PT Tracy Sher Register https://tinyurl.com/4sdhzucf
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: What’s to fear about hormone therapy when intermittent is an option? (rd)
Topics Discussed
Recurrent gent from 2013 has not yet had HT .., and fears it; successful hyperbaric Tx for RT cystitis; update on capaversitib trial; ‘young’ man starts IHT after 10 years; how many chemo cycles??; more IHT; what’s the right HT combo with heart issues? … and the right SPOT RT?; very low level recurrence after 6 years; Herb’s brief update; Next Generation Sequencing; dispelling the fear of HT
Chat Log
David Muslin sent · 5:41 PM also Joe, attending these Ancan meetings educated me enough to no longer fear our disease. We welcome your attendance.
AnCan- rick sent · 5:53 PM UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one Wed, 3/39 8pm Eastern Register https://tinyurl.com/4sdhzucf Dr. Rachel Rubin + Pelvic PT Tracy Sher Wed, Mar 29, 2023 8:00 PM – 9:30 PM EDT
AnCan- rick sent · 6:05 PM capavasertib + docetaxel
Richard Tolbert sent · 6:11 PM Jim, I was able to receive $3500 from the Co-Payment Assistance Fund which covered my Feb Orgovyx and Xtandi. Earlier today I received some fiunding support from a private healthcare company which will help. Thanks for asking Jim!
Peter Kafka-Maui sent · 6:14 PM See you all next week. Got to drive my grandchildren down to beach volleyball practice.
George Rovder, Arlington VA sent · 6:14 PM Thank you Gentlemen for your wisdom and caring. Gotta go now.
Jim B sent · 6:15 PM Great to hear that worked out for you! I think that I may have mentioned that I had success with the Mark Cuban Cost Plus web site which gave me access to medications at remarkably low costs.
Richard Tolbert sent · 6:23 PM You did mentioned Mark Cuban Cost Plus. I checked and Orgovoyx and Xtandi are not available since there is no generic. I am also still working to gain co-payment support from Astellas and Myovant.
Henry sent · 6:38 PM What about orgovyx? Just one pill per day, + 2nd line.
Henry sent · 6:39 PM ok Hey Prof. Herb — what do you have to lose from ADT + abi? Everyone cares about you, Prof. Herb!!
AnCan- rick sent · 6:50 PM UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one Wed, 3/29 8pm Eastern Register here https://tinyurl.com/4sdhzucf
Frank Fabish Columbus OH sent · 6:52 PM Got to go guys. Praying for you Herb.
Len Sierra sent · 6:53 PM Continuous vs Intermittent ADT: https://jamanetwork.com/journals/jamaoncology/fullarticle/2436836 Conclusions and Relevance Intermittent androgen deprivation was not inferior to continuous therapy with respect to the overall survival. Some quality-of-life criteria seemed improved with intermittent therapy. Intermittent androgen deprivation can be considered as an alternative option in patients with recurrent or metastatic prostate cancer.
AnCan- rick sent · 7:00 PM peterk@ancan.org
Peter M sent · 7:02 PM Good night gents!
Bob G sent · 7:02 PM Goodnight all.
Michael Wyn, Colorado Springs sent · 7:15 PM thx. g nite
gary peters sent · 7:19 PM Thanks, guys. Take care. G
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 14, 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: Fateful turns: Belated PSA test, inappropriate focal ablation, diagnosing cancer as BPH. (bn)
Topics discussed
Bad news after 6-year pause in PSA testing; focal ablation to avoid side effects ends in regret; huge prostate but doctor keeps treating BPH; sudden passing of Dennis McGuire from brain aneurysm; taken “right to the edge” with painful BAT side effects; simultaneously treating two kinds of prostate cancer; complications (lung puncture?) after port insertion; are wild hormones signaling a neuroendocrine tumor?; how many PSMA PETs will insurance pay for?; trouble with statins and darolutamide; veteran of intermittent therapy starting ADT again; newcomer can’t find a niche in AnCan’s prostate groups.
Chat log
AnCan Barniskis Room · 6:13 PM Also Telix … who make Ga68 PSMA 11 Illucix
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 14, 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: Prostatectomy and recurrence…in a Gleason 3+3. (bn)
Topics Discussed
Rug pulled out on his Xtandi and Orgovyx financial support; two great docs to choose from in Houston; options if you’re de novo, living on Maui, and have Kaiser insurance; 2016 prostatectomy for a Gleason 6 — and now PSA is climbing; nighttime leg cramps as radiation treatments end — try Theraworx, Caleb Treeze, pickle juice; EmbrWave still hot topic; Gleason 10 a decade ago and he’s still going strong; hyperbaric chamber report — ear issues and blood pressure but cystitis is improved; still battling fatigue 9 months post-ADT, though testosterone is back and he’s active; Antanorakis OKs a 6-month ADT shot; mailman won’t stop bringing pills; bladder bleeds during clinical trial but he’s sticking it out; for neuropathy, Voltaren and/or bumpy sandals; half-gallon-a-day drinker of corn silk tea for cystitis; radiation therapy might be OK with colitis.
Chat Log
Peter Kafka-Maui HI · 6:24 PM Dr. Eleni Estathiou at Houston Methodist or Dr. Paul Corn at MD Anderson
Rick · 7:14 PM No gents …. maybe micro Mx.. Pelvic girdle RT stilstan
Rick · 7:16 PM Still Standard
Rick · 7:17 PM High volume 3+3 can warrant surgery
Peter Kafka-Maui HI · 7:19 PM Theraworx
Harry Spila · 7:20 PM therworx is great stuff
Harry Spila · 7:20 PM it’s like a foam
George Wesoloski · 7:22 PM Epson salt (Magnesium sulfate) and soak in the bathtub
Ravi · 7:23 PM I have to leave now. All I wanted to report on was regarding what I am doing for my severe radiation cystitis. I am undergoing hyperbaric oxygen therapy 2 hours every day at 2.5 atm pressure of 100% oxygen. Had 10 treatments so far, about 1.5 more months to go.
Richard Tolbert · 7:26 PM For Leg and Foot Cramps: Proven Old Amish Formula.Caleb Treeze Organic Farms. 818.247.9600. Some health food stores carry , also try amazon.
Rick · 7:34 PM Stay away from 6 month shots
Rick · 7:35 PM Just check T in last 2mo N t hs
Pat Martin · 7:39 PM Capivasertib
Jim B · 7:49 PM Pat, What was the name of the arthritic cream that you use to relieve neuropathy?
George Wesoloski · 7:49 PM I could do an update.
David Muslin · 7:50 PM Prostotectemy praa · stuh · tek · tuh · mee
Pat Martin · 7:52 PM Volteran…diclofenac sodium topical gel 1% I’ve talked with a pharmacist that has concocted up to 5%
Jim B · 7:54 PM Thanks Pat! I’ll be giving that a try for the same neuropathy issues that I’m experiencing from chemo.
Frank Fabish Columbus OH · 7:55 PM got to go guys see you next week
Pat Martin · 7:56 PM I usually get the generic, usually right beside name brand, 10% discount
