Hi-Risk/Recurrent/Advanced PCa Video Chat, June 25, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, 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!
Editor’s Pick: After a 10x PSA rise on Pluvicto, it’s time for new therapy — and a new genetic test (bn)
Topics Discussed
Poised to start ADT, de novo Floridian has two good choices for GU medonc; with PSA of 700 and a cancer “that’s really gotten out of hand,” he starts chemo but it sends him to the ICU; tenfold rise in PSA puts an end to his Pluvicto treatment — he needs a fresh genetic test before changing course; a go-ahead for spot therapy, so he’s headed to a free NYC hotel room; wheeze raises concern about his lung mets, but multiple tests find nothing; switching from treadmill to recumbent bike, max heart rate sags; back pain woes on Provenge; recurrence after prostatectomy but PSMA PET is giving no guidance; don’t pick a hospital, pick a doctor — and we like Dr. E; medoncs won’t talk with him because he’s not metastatic, so choose a great radonc for now.
Chat Log
Unknown · 6:16 PM
Promise study …. https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
Paul Freda Lake Worth FL · 6:29 PM
Genutourinary Medical Oncologist, Abraham Schwartzberg, Jupiter and Palm Beach Florida. I can highly recommend as I have been with him for 9 years.
Dr. Jeff · 7:06 PM
Six-transmembrane epithelial antigen of prostate 1= STEAP1
Julian – Houston · 7:07 PM
STEAP: A prostate-specific cell-surface antigen highly expressed in human prostate tumors, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC24469/
Joel Blanchette, Reston, VA · 7:19 PM
Hope Lodge
Joel Blanchette, Reston, VA · 7:20 PM
Hope lodge is in 30 cities
Geoffrey Nourse – Denver · 7:42 PM
So doctors I am meeting with over the next 3 weeks to discuss my T4N1M1 diagnosed 6/5/24.
Dr. Corbin Eule – Anschutz (Denver) 6/27
Dr. Michael Serzan – Dana Farber (Boston) 7/15
Dr. Karen Autio – MSK (NYC) 7/16
Working to get in to Dr. Eugene Kwon – Mayo (Rochester)
On Orgovyx (4 days in) and will be starting Nebeqa and xgeva (osteo).
PSA 21 –> 35 in last 30 days
Baselined all blood work – normal except PSA (35)
Genetic tests in progress.
Anyone work with these doctors and have any opinions of them?
Joel Blanchette, Reston, VA · 7:51 PM
Posluma
Frank Fabish · 8:02 PM
Thanks guys. See you Monday.
Steve Roux, MI · 8:08 PM
Thanks guys. Great Meeting! See you next time!
Unknown · 8:11 PM
Retig not taking patients w my profile rising psa post rep
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, 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!
Editor’s pick: “Do no harm” – does that also mean waiting to start HT? Good debate ensues! (rd)
Topics Discussed:
All good with The General; TP53 and radiation; best combos with which to start HT on recurrence; pre-treatment PSMA reveals Nx and changes treatment decision; stopping Orgovyx after 13 months may prove a good move; switching to 3 mo. from 6 mo. LHRH Depot; weight gain on LHRH; spot too close to bladder for safe RT – stick with HT alone; more rowers than just ardee; our mountain climber’s doing very well and happy with his GU MO; slow albeit steady climb in PSA shows no source – intervene with HT or wait?; starting HT on Lupron and testicular pain – any connection?
Chat Log
APOLOGIES but a GoTo glitch only downloaded these 2 posts – who knows why??? If anyone who attended has entire Chat transcript, please forward to rd@ancan.org
Jeff Marchi: Withings Body+ Scale. Synchs to your phone
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 11, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, 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!
Editor’s pick: Two men with metastasis sites that raise thorny questions (bn).
Topics Discussed:
His de novo metastasis was discovered less than a week ago — family rallies to his side as he weighs who to see and how to treat; midway through Provenge — leukapheresis yesterday, infusion in two days — what to expect?; radiating a spot near his clavicle means a tricky tradeoff; insurance cutover puts Orgovyx so near yet so far; will node radiation reignite bad radiation prostatitis?; at a treatment crossroads, but his spirits are too low to act; testosterone rising after ADT — why gynecomastia now?; Pluvicto’s been great and he wishes it could last.
From the Provenge website: Eat calcium-rich foods, such as dairy products and dark leafy greens, or take supplements; Eat a hearty meal within 4 hours of your appointment
AnCan – rick · 7:13 PM
Good suggestion, Dr. Jeff
AnCan – rick · 7:14 PM
But Ben has a good point too.
Ken Doyle · 7:29 PM
Prostate removed in 2009 and PSA has slowly increased to 4 but has accelerated some to about an increase of about 1 per year.
My 2018 Axumin scan showed two hotspots in prostate bed.
Then 2023 PSMA did not show hotspots due to distended bladder with tracer in it.
1. Should the scan provider have made sure that my bladder was empty and should I expect them to do a do over of the PSMA scan?
2. At age 80 and 14 years out with PSA increase of 1 per yr should I just “forget about it”?
AnCan – rick · 7:30 PM
Tx ken – for sure we’llg et to you!
Dr. Jeff · 7:31 PM
ImagingWest
Dr. Jeff · 7:31 PM
Hawthorne NY
Dr. Jeff · 7:32 PM
https://www.imagingwest.com/about
Ben Nathanson · 7:32 PM
thanks!
G – Denver · 7:34 PM
Need to drop – looking forward to our next session!
Matt M – Sac · 7:44 PM
Good evening gents! Have a great night andweek!
eric · 7:51 PM
I was going to say that there are exercises you can do from your chair.
eric · 7:52 PM
I do them expecailly when I’m in the office
AnCan – rick · 7:53 PM
He’s a big exerciser… we have to change attitudes
Adam · 7:59 PM
Gotta drop. Thanks for another great session!
Adam · 7:59 PM
You should!
Kirt Schaper · 8:07 PM
gotta drop
Steve Roux, MI · 8:11 PM
Good night gents! Time for some pills and a slice of pie. Have a GREAT week all!
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 28, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, 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!
Editor’s Pick: Buzz (and cautions) on oxybutynin for hot flashes (bn)
Topics discussed
Diagnosed de novo and now crossing into hormone resistance — it’s time to update somatic tests and PSMA before new treatment; pancreatic cancer, multiple myeloma, and now a PSA uptick – but our low/intermediate group might be a better fit; his diagnosis mirrors Rick’s from 2007, as does his treatment plan — he may have Rick’s great outcome, too; don’t let weight gain get a head start on ADT; MSK’s “not so fast” disrupts treatment plan and angers his local radoc; what’s it like getting spot radiation?; surprised to hear Dr. E recommend whole-body MRI; hyperbaric oxygen for his prostatitis — what’s the cataract risk?; urine flow getting worse — suspect radiation-induced strictures; ignoring urination problems risks kidney complication; strictures have him self-catheterizing daily; hot flashes with a vengeance on Orgovyx as drug holiday ends; buzz over oxybutynin for hot flashes — but beware contraindications (including the lutamides!) and side effects; ADT fatigue mounting as the months roll on — only solution is to be strong-willed and exercise anyway; a bit of renewed discussion of the Embr Wave hot flash device; don’t overlook depression as a factor in ADT fatigue; probiotics might help mood — check your blood, too.
Chat Log
John A · 8:20 PM
odd Yezefski, patients like him, Tufts medical school, u of Washington fellowship and residency, specializes in GU
Mark Perloe, Sherman Oaks, CA · 8:48 PM
I don’t have the link, but I found a series of exercise videos on YouTube created by Hutch. They had a few that utilized bands are were quite easy to but into my regimen. I also got Peloton.
Mark Perloe, Sherman Oaks, CA · 9:22 PM
No, I’m pretty tied in to UCLA. Dr. Kishan is a leader in radiation and if planning RT, they have MRIdian SBRT. I would not advise anyone to seriously consider surgery. My bias, but I’ve spent the last three years online hearing about people with complications.
Wang Gao Shan – PANAMA · 9:25 PM
ASCO
Cheap Drug Eases Hot Flashes in Men With Prostate Cancer
— Anticholinergic oxybutynin for patients taking ADT also improved quality of life in the process
Mark Perloe, Sherman Oaks, CA · 9:25 PM
Darn 405 though.
Mark Perloe, Sherman Oaks, CA · 9:28 PM
I think MRIdian is the safest SBRT and the entire team is very experienced just doing prostates.
Mark Perloe, Sherman Oaks, CA · 9:29 PM
If you go to YouTube and search SBRT Kishan, there are numerous lectures he has recorded.
Mark Perloe, Sherman Oaks, CA · 9:31 PM
I would only go to a radiation oncologist who solely does prostate, bladder and kidney.
Frank Fabish Columbus OH · 9:35 PM
Thanks for the discussions guys. See you Tuesday.
Alan Babcock · 9:36 PM
I have to leave early
Joe Comanda (Philadelphia) · 9:40 PM
Need to leave right now. I’ll ask my question another time.
AnCan – rick · 9:40 PM
Did you ask for time??
Steve Schuler · 9:43 PM
F150 or smart car?
Adam · 9:48 PM
Gotta hit the rack guys. Thank you for the informed discussion. Remember, ANYTHING IS POSSIBLE!
Peter · 9:50 PM
Goodnight all!
Matt – Sac · 9:58 PM
Goodnight all, great info as always. Be well!
AnCan – rick · 10:08 PM
Embr Wave
AnCan – rick · 10:09 PM
From Len
AnCan – rick · 10:09 PM
https://embrlabs.com/products/embr-wave-2
Steve Schuler · 10:15 PM
Thought I’d mention, the estradiol has helped my hot flashes, with fatigue, and also my “dizziness”, which is not really dizziness but this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5732995/
Steve Schuler · 10:17 PM
Benign Paroxysmal Positional Vertigo
Norm Pollock · 10:18 PM
Life Extension: Mood Improve and L-Theanine XR. Heard a doc talking about the probiotic who said they were using it for Bipolar
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 28, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, 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!
Editor’s pick: Hot takes on hot flashes; many thoughts on healthy eating. (bn)
Topics discussed
Mysterious hormone issue means he needs to take hydrocortisone on top of his Lupron — any problem?; off ADT, but hot flashes linger; Veozah might help, if you can get it — Dr. E is looking into a trial; tofu and ground flax tame his hot flashes; and then there’s estradiol — see our webinar with Richard Wassersug; disappointed by doc’s change of heart on a drug holiday — and her prediction that his testosterone will never exceed 100; holding off on prostatectomy while he amasses data; how to stay away from unhealthy “ultraprocessed” food; there isn’t just one healthy diet — it depends on what you need; more thoughts on a paper that appears to advocate wider chemo use; despite stellar author lists, some papers are the work of a hired medical writer; he’s on the borderline of chemo eligibility and not eager to cross over.
Chat Log
[Waiting for name] · 6:17 PM
camera won’t work now. going to try leaving and coming back
Dr. Jeff · 6:30 PM
fezolinetant
AnCan – rick · 6:32 PM
Veozah is commercial name
Jerry Grimes, Brighton, MI · 6:38 PM
low dose estradiol patches can also help reduce hot flashes, but that’s usually in the setting of very low, to no, testosterone. 0.025 to 0.05 mg/day patches. Look up Dr . Wassersug for more.
Unknown · 6:40 PM
Soy Isoflavones by Life Extension
THOMAS Matica · 6:44 PM
Sage tea (and others) for hot flashes from the Canadian College of Naturopathic Medicine https://ccnmicc.ca/hot-flash-support-prostate-cancer It does have some side effects, so do your research. Thomas
Julian – Houston · 7:03 PM
https://www.mskcc.org/nomograms/prostate
AnCan – rick · 7:04 PM
Tx Julian – you beat me to it.
Dr. Jeff · 7:15 PM
Yuka – Food & Cosmetic Scanner 4+
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Richard Fiske · 7:17 PM
Thanks.
Unknown · 7:22 PM
Hack Your Health: The Secrets of Your Gut is a great Netflix documentary
