Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 23, 2022
AnCan’s upcoming webinar “Prostate cancer biopsies: the great debate” takes on a hot topic for anyone planning a biopsy: Should it be transrectal or transperineal? Learn what these techniques are and why the decision matters. Register at https://bit.ly/3OJ9Mmu
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Refining the fine print — making changes when you’re handed paperwork to sign (bn)
Topics Discussed
Recommending a Fox Chase doc for NJ first-timer with troubling PSMA-PET; bicyclist sees two PSA rises after radiation — time to worry?; metastasis nine years after prostatectomy, seeking a new California doc; shaken by PSA rise after salvage radiation and en route to medonc; chemo round three — “it sucks but it works” ; testicular “barrier” complicates treatment for rare metastasis to a testicle; 6 months undetectable PSA, looking forward to a holiday; recovering from infection after losing 25 pounds, and pondering a T-cell trial; fantastic Pluvicto response, hoping for additional treatments; diarrhea and fatigue coming off abi — was prednisone taper too fast?; Keytruda treatments hit roadblock after blood test; nurses look askance when he carefully reads — and modifies — a stack of paperwork before signing.
Chat Log
Bob G. Philadelphia (to Everyone): 6:01 PM: Can’t stay but wanted to let you all know about a full day virtual series of classes from Abramson Cancer Center at Penn, where I go. Titled “Focus on Prostate Cancer” Friday, October 21, 2022 7:30 am – 4:00 pm EDT Free, though they ask for a small donation. https://www.med.upenn.edu/prostate2022/agenda.html
Richie in LA (to Everyone): 6:12 PM: Have severe thunderstorms in my area right now, so if I get kicked off for loss of electricity, I will try and log back in ASAP. Thanks
Peter Kafka – MN (to Everyone): 6:14 PM: Richie: If your internet goes out you can join by phone if that doesn’t get kicked out.
Richie in LA (to Everyone): 6:14 PM: Thanks Larry Fish (to Everyone): 6:20 PM: from nadir … how often PSA rests ..how long was it rising up to now – ? why no action?
Bob McHugh (to Everyone): 6:26 PM: Dan Geynisman at Fox Chase …
Joe Gallo (to Everyone): 6:43 PM: joeg@ancan.org I am 4+5
Julian Morales – Houston (to Everyone): 6:47 PM: Genitourinary (GU): Pertaining to the genital and urinary systems.
Julian Morales – Houston (to Everyone): 6:50 PM: FYI – These meetings are archived for viewing at later times.
Jeff in CA (to Everyone): 7:23 PM: Thanks all. Have another meeting startiing now. Much appreciation for your observations and feedback.
Joe Gallo (to Everyone): 7:39 PM: The nuclear doc for PSMA I mentioned at Fox Chase Yi Li, MD, MSc.
Joe Gallo (to Everyone): 7:43 PM: better name reference Jian Q. (Michael) Yu, MD, FACNM, FRCPC Chief, Department of Diagnostic Imaging, Nuclear Medicine and PET
John Vandenberg (to Everyone): 7:44 PM: thanks – i’ll ask my primary doc next week
Ben Nathanson (to AnCan Barniskis Room): 7:49 PM: Hope surgery went well!
AnCan Barniskis Room (Private): 7:50 PM: TxBen … all good and a little advocating for myself too
Julian Morales – Houston (to Everyone): 7:58 PM: I read my mortgage papers and was accused of being a lawyer!
Pat Martin (to Everyone): 8:08 PM: How long does it take to run through your system?
Jim Ward (to Everyone): 8:11 PM: Gotta run. Congrats on the successul procedure, Rick!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 15, 2022
Check out our NEW AnCan Veterans Support Group – all conditions, all genders … with the purpose of helping Vets navigate their healthcare, benefits, and disabilties no matter their Provider! https://ancan.org/veterans/ . Next meeting Aug 26 @ 8.00 pm Eastern in the Barniskis Room. Free & drop-in.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Gynacomastia rarely gets discussed, so we put that right this week (rd)
Topics Discussed
Experience with Pluvicto; just started Keytruda/pembrolizumab; genomic testing can fall out of network without patient guidance; determining the low threshold for PSMA imaging; PSMA imaging cost; chemo may be working but considering next treatment; more Pluvicto experience; are occasional intense fevers associated with AUS?; how to deal with gynacomastia; doc misses sepsis and participant hospitalized; switching docs; holding steady; staph incfection lands another Gents in hospital; is PALB2 actionable; treating depression and anxiety; 3rd chemo session brings doc discussing what’s next; uretral stent removal delays Pluvicto start; treatment selction for older Gent with slow recurrence over many years.
Chat Log
Pat Martin (to Everyone): 8:11 PM: what is Provicto?
Paul Freda Lake Worth FL (to Everyone): 8:13 PM: Yes, what is Provicto ??
George Rovder Arlington VA (to Everyone): 8:13 PM: Above is link to Pluvicto
Pat Martin (to Everyone): 8:13 PM: Thanks
Alan Babcock (to Everyone): 5:46 PM: I am confused. My PSA is 0.21 and Dr. Wong & Dr. Geynisman fron Fox Chase said I cannot wait for radiation and ADT.
Jeff Marchi, San Francisco (to Everyone): 5:47 PM: PSA IS ONLY ONE FACTOR; how much cancer, has it spread
Alan Babcock (to Everyone): 5:50 PM: How much does a PSMA cost?
Alan Babcock (to Everyone): 6:03 PM: I must leave. Thank you for all the information.
Herb Geller (to Everyone): 6:25 PM: Nystatin
Bob G. Philadelphia (to Everyone): 6:25 PM: Nystatin powder
Herb Geller (to Everyone): 6:25 PM: Its and antifungal agent
Jimmy Greenfield (to Everyone): 6:28 PM: Thanks guys
George A Southiere Jr (to Everyone): 6:37 PM: sorry to hear Linda. Hang in there
Jeff Preston (to Everyone): 7:02 PM: Thanks to all tonight, great to be with you.
George A Southiere Jr (to Everyone): 7:03 PM: Goodnight all! good seeing you all
John Antonucci–CT (to Everyone): 7:07 PM: There’s a PALB2 website/interest group. https://palb2.org. Mostly breast Ca
Julian Morales – Houston (to Everyone): 7:10 PM: Need to leave – I will Dr E your best and a bottle of Greek Olive Oil! Thanks for the great converstation as always.
John Antonucci–CT (to Everyone): 7:11 PM: gtg goodnight
George Rovder Arlington VA (Private): 7:11 PM: How much B6 daily Rick?
Richard Cramond, Oakton, VA (to Everyone): 7:15 PM: Good night
ALFRED LATIMER (to Everyone): 7:16 PM: Another informative meeting. Must go . Good night
Glenn -Minnesota (to Everyone): 7:22 PM: Thanks for the conversation and suggestions. Good night
Carlos Huerta (to Everyone): 7:32 PM: thanks for the input.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 9, 2022
AnCan APOLOGIZES FOR ANY INCONVENIENCE FROM DOWNTIME ON OUR WEBSITE AT THE END OF JULY. AS A RESULT WE ARE NOW SWITCHING THE HOST.
Check out our NEW AnCan Veterans Support Group – all conditions, all genders … with the purpose of helping Vets navigate their healthcare, benefits, and disabilties no matter their Provider! https://ancan.org/veterans/
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: Libido … from a Care Partners pespective – and lots about Pluvicto (rd)
Topics Discussed
BRCA Newbie overly concerned about cachexia; combining institutions for Tx; Pluvicto supply issues … again!; does Pluvicto obscure X-rays?; Pluvicto side effects; blood thinning problem; Ports – Y/N; bone density on ADT; ONJ; not so quiet on the Eastern Front; reading PSMA scans; after a spike, abi continues to work; Provenge reconsidered … and pursued; relugolix + darolutamide combo; libido – from carepartners PoV; PSMA screening threshold
Chat Log
Mike Yancey (to Everyone): 3:04 PM: I enjoyed speaking with you too. Had by Pluvicto this morning…….
Rich Jackson (to Everyone): 3:06 PM: https://ancan.org/veterans/
Russ Strehlow (to Everyone): 4:10 PM: How do you spell that? * bone strengthener
Ben Nathanson (to Everyone): 4:11 PM: Denosumab
Len Sierra (to Everyone): 4:21 PM: XGEVA® is a 120-mg SC injection administered once every 4 weeks 1 The mean elimination half-life of XGEVA® was 28 days. Having said that, I believe most medoncs give Xgeva once every 3 months.
George Rovder Arlington VA (to Everyone): 4:31 PM: 🙂
Bob G. Philadelphia (to Everyone): 4:59 PM: According to the literature, half life of Xgeva may be 28 days, but the drug stays in the body for 140 days. So, I guess every 3 mo. would work, at least in the beginning.
Ancan – rick (to Everyone): 5:03 PM: Saving Your Sex LIfe
Joe Gallo (to Everyone): 5:04 PM: by john mulhall @ MSKCC; on Amazon
Herb Geller (to Everyone): 5:04 PM: doi: 10.1097/SPC.0000000000000190. Maintaining intimacy for prostate cancer patients on androgen deprivation therapy Richard J Wassersug 1
Herb Geller (to Organizer(s) Only): 5:14 PM: Gotta go. Sorry!
Julian Morales – Houston (to Everyone): 5:15 PM: Thanks everyone – Talk to all next week!
Bob G. Philadelphia (to Everyone): 5:19 PM: Thanks
Hi-Risk/Recurrent/Advanced PCa Video Chat, July 26, 2022
AnCan APOLOGIZES FOR ANY INCONVENIENCE FROM DOWNTIME ON OUR WEBSITE THIS PAST WEEK. AS A RESULT WE ARE NOW IN THE PROCESS OF SWITCHING THE HOST.
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: No one ever asked but exactly how much chemo is required to be eligible for Pluvicto?… Jim B wants to know! And watch out for the Nurse Practitioners when your doc isn’t available(rd)
Topics Discussed
Denovo Mx Newbie experiences heart issues from treatment; when to see the NP; chemo failing – time for Pluvicto; handling anxiety; Carl’s next step – Pluvicto, rechallenging PARP, or …??; defer ADT for oligoMx spot RT; advanced PCa REQUIRES GU med onc who knows the map; how much chemo required for Pluvicto qualification; rechallenging with another radionuclide; treatments for PTEN and SPOP?
Chat Log
AnCan – rick (to Organizer(s) Only): 3:19 PM: No PTEN, TP53??
Herb Geller (to Organizer(s) Only): 3:19 PM: There must be some specific mutations
AnCan – rick (to Everyone): 3:22 PM: Great job getting your son to test, Bob!
ALFRED LATIMER (to Everyone): 3:37 PM: Bob: you have learrned an amazing amount about PCa in four months. Great job with the homework!
Len Sierra (to Organizer(s) Only): 3:44 PM: definitely!
Julian Morales – Houston (to Everyone): 3:58 PM: need to leave early tonite – catch you all next week!
Henry (Private): 4:12 PM: Hey there Rick. This is your old buddy Henry from Alabama. I joined late and so didn’t get on the list to ask questions/speak. Is there still room, or already too full for tonight? Not urgent. It’s about my PTEN SPOP deletions with low tumor mutational burden and microsatellite stability. I’ve learned from Dr. E (thanks to you hooking us up!!!!!!) that PTEN may = abiraterone resistance. This can totally wait ‘till next week or more. Thanks!!
Peter Kafka – Maui (to Organizer(s) Only): 4:17 PM: Guys: I wil be hopping off before 2pm – Got to catch an overnight flight back to Minneapolis. My first Keytruda infusion will be with Antonarakis next Tuesday. I am optimistic. Thanks for everything. I will try and catch up with some of the more recent MN guys who have popped up in recent weeks over the summer months.
David Muslin (to Everyone): 4:22 PM: Is Bob castrate resistant?
Peter Kafka – Maui (to Everyone): 4:33 PM: Good catch Dennis!
Bob McHugh (to Everyone): 4:34 PM: Many thanks to all. Good night.
Peter Kafka – Maui (to Everyone): 4:37 PM: Chemo # 5 & 6 are the worst.
Mark Finn (to Everyone): 4:47 PM: Rick – info on “weaning off” prednisone? thanks
AnCan – rick (to Everyone): 4:49 PM: SLOWLY!!!!!!!! Please speak to your docs!!
Mark Finn (to Everyone): 4:50 PM: OK – “slowly”? 5mg every other day? 2.5/day by cutting tablet? Expected side effects if go cold turkey?: I am going off prednizone and have about 10 tabs remaining.
Jim Marshall, Alexandria, VA (to Everyone): 4:53 PM: I did 2.5 prednisone for 10 days and 2.5 every other day for 10 days. Seem to work. jim marshall
AnCan – rick (to Everyone): 4:54 PM: Mark Finn …. you don’t want to go cold turkey. I know someone who lost 30# …. really screws up your adrenals.
David Muslin (to Everyone): 4:55 PM: When should Jim B check his PSA next?
Herb Geller (to Everyone): 4:56 PM: I assume they will check before the next chemo.
Jerry Pelfrey – Mexico (to Everyone): 5:14 PM: sorry I have to leave gents. Have a good week and see you next week!
Bob G (to Everyone): 5:15 PM: Have to leave. Thank you for all the great feedback & info. Will be back. Have a good night.
Kevin Bagnasco (Private): 5:17 PM. I am at a crossroad now. I have done LU-177, Actinium 8 sessions of docetaxel. Tagawa has taken me off because of the neuropathy in my fingers (nothing in toes). Scans are scheduled this Friday. I have an appointment with Tagawa on the 2nd and Petrylac on the 4th. PSA has gone from 9/9/21 (4.93 to 19.7).metastasized tumors are throughout my skeleton system.
Hi-Risk/Recurrent/Advanced PCa Video Chat, July 18, 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/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: The clear winner from this very well attended week is MENTAL HEALTH. Anxiety and depression come up multiple times. Gents – please STAY IN THE MOMENT(rd)
Topics Discussed
We welcome Dr. John as a Mod!; tiny changes in ultra, ultra sensitive PSA 7.5 yrs out make this man nervous and turn to dubious supplements; and small changes for this man 8 years post-RP are of concern; layering HT on a history of depression suggests medication; spinal reconstruction surgery appears timely and successful; PCa is stable but fevers a puzzle; blood biospsy ordered; is radaition cystitiis a concern?; UTI puts man in the ER/hospital – GU med onc fails to pay attention!; is ARASENS for me?; NGS shows trifecta of bad actor mutations; annual scans show stability; post-chemo Tx needs review for foamy gland guy; two of our Gents get mild Covid
Chat Log
Larry Fish (to Everyone): 5:57 PM: especially something for the short term at least – as effects of ADT can be so unsettling and problematic, right away.
Stan Friedman (to Everyone): 6:17 PM: Steve, our prayers are with you.
john antonucci (to Everyone): 6:39 PM: sorry guys gotta go early see you tuesday
Frank Fabish – Columbus OH (to Everyone): 6:42 PM: Got to go guys. See you next week.
Mike Yancey (to Everyone): 7:08 PM: Early appointment requiring a lot of miles tomorrow, so need to drop off a bit early. Good call. Thanks for allowing me to provide an update. See you next Tuesday
AnCan – rick (to Peter M): 7:10 PM: Peter – this is high volume mets that Richard shows!!
Stan Friedman (to Everyone): 7:15 PM: Have to go. See all of you online next Tuesday.
Julian Morales – Houston (to Everyone): 7:17 PM: Catch you guys next week – Another good!
Peter M (to Everyone): 7:20 PM: Good night gents!
Geoff (to Everyone): 7:21 PM: Must go. Thank you all!
Jerry Pelfrey – Mexico (to Everyone): 7:23 PM: Good Night Gents
