Hi-Risk/Recurrent/Advanced PCa Video Chat, May 23, 2023
AnCan is grateful to the following sponsors for making this recording possible: 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: Handcuffed by HMO, making the best of it. (bn)
Topics Discussed
Memory issues, but HMO won’t allow him darolutamide — try monotherapy abi?; tumors block TURP surgery, hoping ADT will ease surgeon’s job; AnCan pushes for better Orgovyx pricing; acupuncture and hot flashes; abi first, then enzalutamide — not the reverse; doing well on daro doublet after chemo; Orgovyx probably won’t thin the fog; mulling DEXA scan report; daro monotherapy addresses heart issue; filling the need for exercise with an e-bike; how much vitamin D?; grateful after switching to a GU oncologist; keep alert to side effects in Xgeva and Prolia; AnCan’s prostate cancer forum is back (https://ancan.org/forums); Embr Wave outdoors; landing an appointment with Oliver Sartor.
Chat Log
Harry Spila · 7:58 PM gotta go, take care everyone
AnCan – rick · 7:59 PM Happy riding!
Harry Spila · 8:00 PM 🚴
Mike Yancey – Oklahoma · 8:06 PM Gotta run
julian – houston · 8:06 PM great conversation, as always. Enjoy your Memorial Weekend!
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 15, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…
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: Controversial Death with Dignity discussion starts – and Keytruda shows up more than once at the back end … after passing Dude Wipes along the way! (rd)
Topics Discussed
Talking ‘Death with Dignity’ with AnCan Advocate; urologist refuses Provenge – get a GU med onc!; pros & cons of treating the primary; timing of RT; handling multiple QBs; Bx find no NEC; salvage RT commenced; clean up with Dude Wipes; brain fog/short term memory loss – drug and non-drug remedies; Flomax and brain fog; some Gents take just 2.5mg/daily prednisone with abi; Eligard & ukuleles; another Gent looks to pembro/Keytruda; proteomics; wean off Prolia; pembro vs chemo decision
Chat Log
Ben Nathanson sent · 5:14 PM As the End Nears: Dying with Metastatic Cancer https://join.compassionandchoices.org/a/end-nears-dying-metastatic-cancer Compassion & Choices https://www.compassionandchoices.org States where medical aid in dying is authorized, and dates when it took effect: Oregon 10/27/1997 Washington 3/5/2009 Montana 12/31/2009 Vermont 5/20/2013 California 6/9/2016 Colorado 12/16/2016 Washington, D.C. 2/18/2017 Hawai‘i 1/1/2019 New Jersey 8/1/2019 Maine 9/19/2019 New Mexico 6/20/2021
Joe Comanda (Philadelphia) sent · 5:21 PM I don’t want to cause trouble, but I am troubled by the advocacy of Compassionate Choices, formerly the Hemlock Society. I would hope that men would not take that way out.
Len Sierra sent · 5:23 PM Everyone has to make that decision for themselves. No one else should make it for them.
rd sent · 5:24 PM We think it’ s each person to his own… AnCan believes everyone has a choice, Joe.
Jim B sent · 5:36 PM Hi Bob, I just had a Pluvicto treatment this morning. No side effects so far but I’m sure that dry mouth, nausea and slight fatigue will continue. How is your WBC coming along?
Joe Gallo sent · 5:47 PM Genito Urinary (GU) Oncologist Dr. Eleni Efstathiou
Peter K sent · 6:37 PM I have had 3 med oncs for over a year now. 2 up to a year ago. They are all valuable and I keep them all informed and they all have vaulable input
rd sent · 6:38 PM MDA – maybe the best cancer hospital … but not the best prostate cancer hospital
Peter K sent · 6:42 PM They are doing MRidian SBRT with View Rayt in Michigan- low toxicity in trials
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 9, 2023
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: Rural denovo metastatic man 6 years out thrives with high PSA … but needs a GU med onc all the more! (rd)
Topics Discussed
Denovo Mx man thrives for 6 years with high double digit PSA; post-ADT, the T’s coming back!; small PSA increase on Pluvicto doesn’t mean failure; single session palliative spot RT + Bx to check disease; T slowly rising on mono daro; starting Xofigo to combat PSMA +/- PCa; what does Dr. A have in store for our BRAF man?; Mayo man moves to Sartor; hard to come by PSMA scan deferred until PSA rises; TMB vs PSMA vs PSA; can you start HT on mono daro?; quick review of CancerABCs conference.
Chat Log
Len Sierra sent · 3:09 PM Does Medicare insurance cover EMBR?
Frank Fabish Columbus OH sent · 3:09 PM I’m not sure
Vic St. Louis, MO sent · 3:10 PM I think only if prescribed by MD as medically necessary
John A sent · 3:27 PM genito-urinary medical oncologist
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 25, 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:After surgery, 15% of prostate beds are…what, exactly? (bn)
Topics Discussed
Is PSA uptick to 0.155 ripe for PSMA PET?; Keytruda patience paying off; the sweat is real as he sweats out a decision on longer ADT; bad liver enzymes on Pluvicto plus apalutamide — whodunit?; invisible on PSMA PET, he’s starting darolutamide and hoping for the best; how loved ones benefit from your germline test; doubting and defending murky claim that “15% of recurrence is in prostate bed”; PSA uptick is tiny but he hopes to be proactive; docs disagree on more radiation after PSA rise; getting genetic testing in Canada.
Erwin Zoch · 7:17 PM I’m not sure if this is applicable to the question re. recurrence in the prostate bed, but my recurrence is currently confined to the prostate gland per PSMA PET and MRI scans.
Erwin Zoch · 7:22 PM Thanks for the info. I have to leave for an appointment.
Stan Friedman· 7:42 PM Good night, everyone. It’s my birthday today and have a dinner date with my wife.
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:We are all devastated aboout Herb GRHS – it didn’t have to be this way!
Topics Discussed
Remembering Herbie; another octogenarian with mystery mets; man with a 7.5 Gleason(???) does well on recurrence; community oncologist provides sub-standard care; capaversitib trial failing – sequencing needed; chemo drops nadir – and more sequencing needed; is 8 months ADT enough for early salvage RT?; PSA drops and tumors shrink except for the new one!; Next Generation Somatic Sequencing IS available if your doc says so; monotherapy darolutamide does the trick; exercise + anxietyDr. S accepts our man and orders HT; PROMISE is the path of least resistance.
AnCan- rick sent · 5:23 PM Sponsors Bayer, Pfizer, Janssen, Myovant, Myriad, Telix, Foundation Medicine
sent · 5:36 PM What was Gleason after surgery?
Vic St. Louis, MO sent · 6:15 PM triplet therapy?????
Len Sierra sent · 6:16 PM Good call, Vic. He fits the profile for triplet therapy.
Vic St. Louis, MO sent · 6:17 PM since may 2021!!!
Larry Fish sent · 6:17 PM What kind of scans? Sounds like he may have lit up like a Christmas tree. Then there was probably something to biopsy- eg hip
Vic St. Louis, MO sent · 6:18 PM 10-4
Bob G sent · 6:22 PM Goodnight all. Thanks.
sent · 6:33 PM My name is MarkK and I just joined today. I am stage 4 to the bone and want someone like me to talk to This chat barely works so try spartybbmark@yahoo.com
sent · 6:38 PM Mark Cuban’s discount drug site sells Abbie for $145 for 120 pills. https://Costplusdrugs.com
Pat Martin sent · 6:39 PM I appreciate your input. Going to log off and get this shoe out of my butt that Rick put there See all next Tuesday
Julian – Houston sent · 6:44 PM Thanks everyone! Good discussion as always! Have a good evening.
Len Sierra sent · 6:58 PM Tony, at the site Rick sent you, look for this discussion titled: “Duration of ADT needed with salvage radiation” from Feb 2023
AnCan- rick sent · 7:29 PM Patient Assistance Foundation
