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 28, 2023
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
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
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: Genetic test detects a rare mutation — with a treatment — showing the value of somatic testing. (bn)
Topics Discussed
AnCan’s proposals on the Pluvicto shortage get the FDA’s ear; new man hopes for support as salvage winds up; ultrasensitive PSA creeping up — time to worry?; PSA kicks down after darolutamide; is abi “shortage” real?; treading carefully before radiotherapy due to colitis; PSA rising despite Pluvicto — are some metastases non-avid?; PSA OK after run-in with Covid; atrial fibrillation complicates his treatment choices; what’s the story with BAT?; genetic test turns up BRAF mutation, rare in prostate cancer; update on Herb.
Chat Log
AnCan- rick · 6:09 PM WEBINAR tomorrow night …. What’s a Pelvic Floor Therapist …and why you need one! REGISTER HERE https://tinyurl.com/4sdhzucf
Julian – Houston · 6:08 PM I am registered!
Len Sierra · 6:15 PM CDER =Center for Drug Evaluation and Research
AnCan- rick · 6:22 PM WEBINAR tomorrow night …. What’s a Pelvic Floor Therapist …and why you need one! REGISTER HERE https://tinyurl.com/4sdhzucf
David Muslin · 6:39 PM The following are GU Med Ons at OHSU
David Muslin · 6:39 PM Jacqueline Vuky, M.D. Associate Professor of Medicine, School of Medicine ExpertiseCancerCancer and Blood Disorders Special focusBladder
CancerBlood DiseasesBreast CancerColorectal CancerGenitourinary CancersKidney CancerProstate CancerTestis Cancer
David Muslin · 6:40 PM To schedule call 503-346-1500
AnCan- rick · 7:27 PM bicalutamide
John A · 7:35 PM SNMMI just came out with GU guidelines in January–does anyone know what they said about concordance checking?
AnCan- rick · 7:41 PM Life on ADT …. Richard W’s website
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
APOLOGIES – No recording for 3/6/23 HiRisk/Rec/Adv Group!!
5 Moderators + some highly vigilant participants all forgot to record last night’s virtual video support group. We blew it, so to our regulars, please accept our apologies.
Amongst the topics, we dicussed an unusual type of foamy gland prostate cancer linked to a recent Epstein article in the Chat. The Group also spoke at length about the mutation SPOP, that we will be sure to cover again another time. And an old chestnut discussed many times before – remedies for hot flashes.
Here’s the Chat Log:
Me to Everyone 06:51 PM Our AS group is only early; possible cure if a true 3+3
Len Sierra to Organizer(s) only 06:51 PM I’d say he’s cured. He probably never needed any therapy as a 3+3
Henry to Everyone 07:07 PM I’ve got SPOP and PTEN; Dr. E indicated to me that SPOP responds better to abi; PTEN not as good.
Len Sierra to Organizer(s) only 07:16 PM Henry, talk to your doc about ipatasertib. It has some activity against PTEN in the IPATENTIAL clinical trial.
Len Sierra to Everyone 07:16 PM Henry, talk to your doc about ipatasertib. It has some activity against PTEN in the IPATENTIAL clinical trial.
Pat Martin to Everyone 07:19 PM What kind of chemo did you go through?
Henry to Everyone 07:23 PM Len — thanks so much for that lead. Once again demonstrating how awesome this group is.
Henry to Everyone 07:26 PM flexeril
Me to Everyone 07:27 PM Embr Wave
Me to Everyone 07:27 PM Red clover.
Frank Fabish Columbus OH to Everyone 07:27 PM Pat it was 6 treatments of docetaxel Jan 21 to Apr 22
Joe Gallo to Everyone 07:27 PM embrlabs.com
Me to Everyone 07:28 PM ANCAN50
Frank Fabish Columbus OH to Everyone 07:28 PM I am determined to be positive and thankful for each day
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 28, 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: Picky treatments like partial salvage radiation and HIFU may come back to haunt you. (bn)
Topics discussed
Hanging tough on Keytruda and seeing where it goes; after crossing the globe for Pluvicto, back to cabazitaxel and and hunting for options; a pill that makes leg cramps vanish; why Erleada when there’s Nubeqa?; atrial fibrillation; tissue staining to detect PSMA avidity; twice treated with HIFU and PSA is going up; risks vs benefits of pelvic girdle salvage radiation; despair turns to hope after an encounter with psilocybin
Ben Nathanson · 7:19 PM I was going to say that Dr A has commented on who’s right for Keytruda…the symptoms of microsatellite instability high, high mutation burden, and mismatch-repair deficiency are all related, but you don’t always see all three. He says: So, when you see all three, a loss of function — mismatch repair mutation — and a high TMB, and the microsatellite instability, you begin to believe that this is a true pembrolizumab-sensitive tumor. Oftentimes you get tricked and you see one of the three or two of the three, and then you are kind of stuck because you sort of want to give pembrolizumab, but you don’t know if that patient is going to respond.
Joe · 7:39 PM on a happy note I’m 6+ years out from Gleason 9s, failing Nov 2016 surgery, mets to lungs and hip, 6 rounds of docetaxel, ever since undetectable…got over my depression, lost 26 lbs since November 2022, on purpose and feel pretty good, also did a meaningful psilocybin ceremony in Nov which helped me reset my outlook…used to be pissed off and sad when I got my less-than 0.01 quarterly…go figure, best to all
Joe · 7:42 PM ohhh sorry on Lupron+Abi ever since docetaxel back in March of 2017, forgot that part hahahahaha
Len Sierra · 7:43 PM Joe, would you like to talk to us about your psilocybin experience?
Joe · 7:47 PM Len yes I’d be happy to if there is time, changed my life 0/1 night/day catatonic/functional
Steve Schuler · 7:58 PM Mine is going to be 38x for total of 68Gy. Whole pelvic + nodes
Steve Schuler · 7:59 PM A complication of mine, is my hip replacement, so the planning needed to work around that. Not sure if that impacts the number vs. intensity
Steve Schuler · 8:00 PM Only 1 for me
Jack · 8:02 PM A good read “A Salamander’s Tale” by Paul Steinberg, MD …a story of 35 plus years of surviving prostate cancer.
Alan Moskowitz · 8:05 PM Need to leave now. thanks guys.
AnCan – rick · 8:18 PM https://ancan.org/joe-boardman-comes-to-terms-with-life/
