Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 10, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
UPCOMING WEBINAR – Let’s talk Medicare 2024!Monday, Oct 30 8.00 pm Eastern Register at http://tinyurl.com/ancanmedicare . We plan NOT to make this scary!!!
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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:Does it make sense to keep your cancer off guard?… & the Group talks A-fib! (rd)
Topics Discussed
AnCan loses two long term men on same day; Zometa side effects; 3+3 (??) newbie addresses mets after 20 years; Gent running out of options needs current sequencing … and new doc; does it make sense to keep the cancer off guard?; addressing A-fib; reducing visceral fat with exercise addresses sarcopenia; darolutamide refused so Gent starts with Orgovyx alone; Payer wrongly refusing NGS somatic testing; blood in urine could be RT cystitis – cystoscopy required; PCa recurs only within the gland.
Chat Log
Matt Kriegersent · 3:32 PM
Here are my recent PSA trends, it’s been a bit of a rollercoaster and I would appreciate any feedback. My treatment history is external radiation and HDR brachytherapy completed April 2020, and I was on 2 anti-androgens until June 2022. So 9 (Sept.)/2022 <.06, 1/2023 .06, 3/2023 .06, 6/2023 .35, 7/2023 .17, 8/23 .24, 9/2023 .07 I’m seeing my urologist tomorrow because a few weeks ago, for the only time other than the one biopsy and brachy, I had some blood in my urine – that was surprising but hasn’t happened again since.
sent · 3:35 PM
Too many things to do. You need to talk with the group. You need to make changes now.
Jim Marshall, Alexandria, VAsent · 3:44 PM
Genitourinary Medical Oncologist
John Asent · 3:48 PM
“LHRH antagonist drugs include relugolix (Orgovyx) and degarelix (Firmagon). These will suppress testosterone rapidly and don’t need the premedication with another drug.
Jim Marshall, Alexandria, VAsent · 3:50 PM
Abiraterone for Castration-Sensitive guys is 5MG of Prednisone
John Asent · 3:50 PM
Then, a second dug may be added to add to the testosterone suppression: abiraterone or darolutamide or enzalutamide.
marc valenssent · 3:56 PM
genitourinary MedOnc at Fred Hutchinson in Seattle: Petros Grivas
J. Wardsent · 4:00 PM
I need to hop off now; thanks for allowing me speak about Ken Anderson.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 2, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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 next… more Keytruda or switch to Pluvicto?? (rd)
Topics Discussed
Navigating slow-developing recurrence; early days treating denovo lymph mets; Embr to the rescue; post-RT urinary stricture creates problem; hormone therapy poses exercise issues for some of our older Gents; intermittent immunotherapy; new hip after much HT; Group suggests patience before switching therapy; older Gent favors savings to hot flashes; what next when HT does its job? – exercise and a GU med onc!
Meet 1st & 3rd Mondays 0800pm ET and 2nd and 4th Tuesday 0600pm ET . Jim
Boykin Jordan – Springfield, VAsent · 5:48 PM
Thanks Jim — I’ll update my calendar
AnCan – ricksent · 5:56 PM
Embr wave Ancan50
https://embrlabs.com/products/embr-wave-2
sent · 6:08 PM
I’m in Palatine and am always looking for people to bicycle with.
russ hooversent · 6:16 PM
holmium laser enucleation procedure
sent · 6:24 PM
773-294-4151 I’m off to AZ on the 15th for the season, let’s definitely get together in the spring
sent · 6:38 PM
Akeega contains two active substances: niraparib and abiraterone acetate.
Julian – Houstonsent · 6:39 PM
Great talk tonight again! Catch you next week. Thank you.
GARY Zsent · 6:58 PM
Gentlemen – Big thanks to all. Had Mohs outpatient surgery 730am today for basal cell on side of face…need to say goodnight for today’s forum. I look forward to our next one. Best, Gary Z.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Five of our Regulars wrestle with recurrence this week; and one more is his own best advocate to get a scan(rd)
Topics Discussed
Eminent internist handles Gleason 4+5 diagnosis well; recurrence points to doublet therapy; abiraterone can result in cardio/BP issues; innovative GU med onc addresses lung spots with switching meds before trying RT; Gent finds his own NIH trial to his doc’s chagrin; T. flows back well post Orgovyx; PSMA scan shows oligoMx recurrence – AnCan reassures anxious Gent; with too many lesions, spot RT may yield to chemo; finally feeling better post prednisone; enzalutamide makes another man dizzy; doc agrees on FDG PET for concordance with PSMA but shies away for Payer reasons; neuroendocrine blood markers; Jimmy G remembers Jimmy B. – and Gent shares his Merkel Cell history.
Thanks for those private messages to me about being afraid. I can’t seem to reply privately so thanks everyone!
Len Sierra sent · 7:18 PM
According to Dr. Karim Fizazi, Darolutamide was not associated with a higher incidence of seizures, falls, fractures, cognitive disorder, or hypertension than placebo.
You’ve heard me say it before and it never gets old… nothing gives me more pleasure than AnCan participants getting together outside our groups to meet and greet.
When a new participant in our High Risk/Recurrent/Advanced Prostate Cancer Group revealed recently he was from N. Virginia, not only was he well received by fellow locals but the cry went up for all to meet for lunch before too long. Capt. Jim Marshall led the charge by arranging a lunch in Alexandria at the end of June. I’ll let him tell you more ….
On Friday, June 30th, the DMV (District of Columbia/ Maryland/ Virginia) Brotherhood of AnCan’s High Risk/ Recurrent/ Advanced Prostate Cancer Virtual Group got together for a luncheon here in Alexandria, VA. We met at the Historic “Table Talk”Diner founded in 1976 that has changed little even in the age of rising property values and upscaling everything. On the first row of the photo L-R, is Joel Blanchette, Gary Peters and then standing L-R, myself Jim Marshall, George Rovder, Jimmy Greenfield, Cliff Collins and Richard Cramond.
It was a great opportunity to compare notes on our life situations and treatments but more important to get to know each other. It turns out I learned General Joel actually jumped out of airplanes in the younger days of his military career. Gary is a retired Federal Lawyer. George worked at the US State Dept. George’s husband is a Canadian and they are heading off camping over the 4th . Jimmy G, as we all know, is into music, can work up a real sweat (exercise) when his (new) band one gets going. In his younger days Jimmy was a full-time music teacher for kids and loved it – he still teaches young and old alike. Cliff was a Professor in the Air Force and regularly does 65-mile bike rides. Richard and I worked in close proximity in the 1970s in the forerunner of Space Force; satellites and things. As far as me, I can be found trimming a Peach Tree and also doing my daily 2-3-mile bike rides; consider I have a 15-year head start on Cliff.
We are looking forward to making this a recurring meeting during the year.
Jim Marshall
If any other AnCan’rs in any of our groups want to organize a ‘meet and greet’, please let us know and we’ll help with the contact information …. MSrs in Michigan???
Hi-Risk/Recurrent/Advanced PCa Video Chat, July 3, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan’s Prostate Cancer Forum is back https://ancan.org/forums. If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: This meeting was packed with lots of good stuff – from diabetes management on HT to the equivalency of gentle vs strenuous exercise (rd)
Topics discussed
Hormone treatment and diabetes management (see Chat); next ‘foamy gland’ treatment discussion; do I need a bone strengthener – pros & cons; does TP53 increase risk for other cancers?*; can ADT result in physical anxiety?; advanced prostate cancer management at Walter Reade Military Hospital; are scans a valid protocol to close out hormone therapy treatment?; is gentle vs strenuous exercise equivalent? * My lack of concern over TP53 is based on somatic mutations only! Germline TP53 carries risk for other cancers. (rd)
Chat Log
Ben Nathanson sent · 5:16 PM I think Jeff Marchi is right about the new video…we finally appear to have more than 25 cameras on!
Jim Marshall, Alexandria, VA sent · 5:18 PM It appears I can get up to 30 screens of people. jim Sylvester sent · 5:19 PM Sylvester has nothing tonight. I can hear this session. Thanks.
sent · 5:21 PM I can only get 8 active cameras. People go blank including me, and the 8 rotate between many people. If I pick everyone all but 8 cameras are blank, but I see 28 boxes If more than 28 here, it is now possible to slide over and see another screen of 28. That’s new
Larry Fish sent · 5:31 PM newer diabetes medications: I am on Mounjaro very effective AIC down from 8.1 to 7.1 in just 2 months; other more popular medication is Ozempic (sp?)
Steve Schuler sent · 5:53 PM Bye, have a safe 4th folks!
David Muslin sent · 6:14 PM What was that the name of the drug that Len just mentioned?
AnCan – rick sent · 6:15 PM Zometa
John A sent · 6:25 PM sorry pl defer to Dr Jack. Yes to PT and relaxation techniques. Yes to therapy for underlying fear. Can’t eliminate the cause–ADT and PCa.
David Muslin sent · 6:35 PM For what it’s worth, my Rad Onc at Northwestern stayed in touch with me for 12 months after my SBRT treatment
sent · 6:40 PM My Rad Onc is ordering a PSMA Pet scan. My Med Onc is ordering my meds.
AnCan – rick sent · 6:42 PM You need a GU med onc, Jay!
John A sent · 6:49 PM I tried that on my doc, and he was one of the authors of ARCHES. He declined to order any scans until my PSA got at least to .2.
Neil Sundstrom sent · 6:51 PM can you put that scan name in the chat?
george rovder arlington va sent · 6:52 PM https://peterattiamd.com/rajpaulattariwala/ Rajpaul Attariwala, M.D., Ph.D.: Cancer screening with full-body MRI scans and a seminar on the field of radiology
sent · 6:59 PM Diffusion weighted MRI. Dr. Raipaul Attariwala in Vancouver at AIM medical imaging
Frank Fabish Columbus OH sent · 7:01 PM Have a great 4th. See you next week.
Stan Friedman sent · 7:05 PM Len, are you on a beta blocker? I was experiencing real shortness of breadth a month ago and went to my internist. I had been taking propranolol for years to calm an essential tremor I had. He took my off the beta blocker and my short windedness disappeared and my fatigue lessened as well. Of course, my tremor is back, but I can deal with that.
Neil Sundstrom sent · 7:06 PM Gotta go. Happy 4th everyone.
David Muslin sent · 7:10 PM I have to roll gents. Have a safe 4th. Enjoy your families and be in the moment.
Cliff Collins sent · 7:11 PM I really must get some rest. I have a big bike ride in the morning. Please enjoy the 4th with family and friends.
Dennis Correia sent · 7:11 PM great discussion on exercise.
On Friday, June 30th, the DMV (District of Columbia/ Maryland/ Virginia) Brotherhood of AnCan’s High Risk/ Recurrent/ Advanced Prostate Cancer Virtual Group got together for a luncheon here in Alexandria, VA. We met at the Historic “Table Talk” Diner founded in 1976 that has changed little even in the age of rising property values and upscaling everything. On the first row of the photo L-R, is Joel Blanchette, Gary Peters and then standing L-R, myself Jim Marshall, George Rovder, Jimmy Greenfield, Cliff Collins and Richard Cramond.