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.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
Brooklyn-born, Los Angeles-raised rapper/producer Brian RiGHtSiDE’ Smith was diagnosed while in college with metastatic testicular cancer – and later, a reoccurrence of cancer in the brain, which left him with paralysis on his left side – hence the “right side” moniker.
In addition to performing original music, Brian discussed overcoming various health challenges and substance abuse, and his work supporting teens and young adults with cancer by sharing healthy and creative ways to process their emotions.
Watch this inspiring performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 1, 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.
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: Crossing international borders when you’re ‘hot’; and watch your statins on Nubeqa (rd)
TopicsDiscussed
Recurrence after 19 years???; crossing the Border on Pluvicto; delayed PSA response to Pluvicto; throat side -effects; drug holiay approved; reduced darolutamide dosage; statins and darolutamide; debating Provenge – abscopal effect with spot RT; overreading G68 PSMA scans; chemo must precede Pluvicto; why hot flashes persist with no LHRH; adding abi to adjuvant RT; treating PCa testicular spread; FMI report reveals TP53; dealing with chemo
Chat Log
Frank Fabish – Columbus OH (to Organizer(s) Only): 5:16 PM: No update from me tonight. My next checkup and blood draw is Tuesday 8/23. Leaving for Cabo San Lucas on 8/4 for two weeks. A little bit of beach therapy.
Peter Kafka – Maui (to Everyone): 5:27 PM: Is this really advanced disease? Or even recurrent yet?
Bill Franklin – Sunny Florida (to Everyone): 5:28 PM: When all you have is a hammer…
C Huerta (to Everyone): 5:58 PM: Got to get to a Board Meeting. Next time …
AnCan – rick (to Everyone): 5:58 PM: Carl you have to tell me that upfront
john antonucci–CT (to Everyone): 5:59 PM: Lu177 half life 6.7 d. decays to stable hafnium 177 via beta radiation
Ken (to Everyone): 6:01 PM: thanks John
Jim Marshall, Alexandria, VA (to Everyone): 6:06 PM: John, ask him if he is on Medicare Advantage,Part C or Medicare, Part B. The Advantage provider may be the one denying. Jim
Stephen Saft (to Everyone): 6:28 PM: From google Adverse Reactions: The most common adverse reactions reported in clinical trials (≥ 15% of patients receiving PROVENGE) were chills, fatigue, fever, back pain, nausea, joint ache, and headache.
GEORGE ROVDER Arlington VA (to Everyone): 6:28 PM: Thanks
Steve. Peter Kafka – Maui (to Everyone): 6:35 PM: Gotta go = see y’all next week.
Frank Fabish – Columbus OH (to Everyone): 6:54 PM: Gotta go guys. Thanks for the info.
Stephen Saft (to Everyone): 7:04 PM: I am going to say goodnight. Tommorrow is 3 weeks since surgery. I need some time to prepare to get bed. Thanks everyone for sharing.
Jerry Pelfrey – Mexico (to Everyone): 7:10 PM: Time, have to go now. Thanks to everyone.
David Muslin (to Everyone): 7:14 PM: Dr Russell Szmulewitz New nurse January 2022 – Meghan Catenacci meghan.catenacci@uchospitals.edu
Julian Morales – Houston (to Everyone): 7:17 PM: Have to leave. Thanks for the great advice and c onversation! See y’all next Tuesday.
Stan Friedman – Stamford (to Everyone): 7:20 PM: Good night guys. Have an early morning start.
GEORGE ROVDER Arlington VA (to Everyone): 7:33 PM: Embr Wave
Bob G. Philadelphia (to Everyone): 7:34 PM: Thanks everyone. Have a good night
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.
