Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 18, 2023
Once a year in December, AnCan Foundation comes to you for a donation to support our largely volunteer programs. If you’re signed up to get meeting reminders, you’ll also have seen our Annual Fundraising Letter, sent last week. If you value our recordings, please consider making a donation at https://ancan.org/donate/
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 Picks: Wrapping up (literally) a scary episode of lymphedema; after bladder complications, every step he takes could mean a hospital visit. (bn)
Topics Discussed
Specialized therapists bring his lymphedema under control; surprise prostate recurrence after high-dose brachytherapy; waiting for pain to fade after radiation for rectal tumor; runaway diarrhea with no intestinal bug in sight — was it Keytruda?; PSA inching up but PSMA PET draws a blank; after radiation to bladder, every step risks a hospital visit; doctors who turn their back on complications; parting ways with a medonc who won’t do doublet; adrenal glands won’t restart after long-term abiraterone
Chat Log
Ravi Subramaniam · 8:54 PM
sucralfate enema for radiation proctitis
Unknown · 9:01 PM
Psyllium is often helpful
Peter Kafka – Maui · 9:43 PM
Peter Kafka – peterk@ancan.org
Ravi Subramaniam · 9:44 PM
RaviS58@outlook.com
Unknown · 9:58 PM
Psyllium helps with diarrhea
Unknown · 9:59 PM
Psyllium can make constipation worse
Frank Fabish Columbus OH · 10:00 PM
Thanks guys. Catch you next week.
Thomas Matica WA · 10:03 PM
Psyllium also helps reduce blood glucose levels.
Thomas Matica WA · 10:05 PM
Great sesion. Thanks to all.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 12, 2023
Once a year in December, AnCan Foundation comes to you for a donation to support our largely volunteer programs. If you’re signed up to get meeting reminders, you’ll also have seen our Annual Fundraising Letter, sent last week. If you value our recordings, please consider making a donation at https://ancan.org/donate/
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/
Editors Pick: Boosting testosterone, feeling great — and dancing with the devil? (bn)
Topics Discussed
Insist on Orgovyx and darolutamide, or accept old standbys Lupron and Casodex?; diplomatically swapping out a urologist for an oncologist; who’s afraid of a little testosterone boost?; itching back and constipation on ADT — is it just me?; find a trainer — not a physical therapist; PSMA PET sticker shock; AnCan website needs new blood; what’s with the protons — and why not surgery?
Chat Log
David M · 6:20 PM
EVEN A SMALL DONATION is much appreciated. Your volunteers work hard for for you and all of us thet deeply depend on Ancan. THANK YOU
Jim Marshall, Alexandria, VA · 7:38 PM
If you were a Vet, one can claim “Loss of Use of Creative Organ” and collect $128.62 per month. That is how much your are worth in the boudoir.
Jay Newman · 7:48 PM
Does anybody know about the effectiveness of the Ember Wave and where I can get one?
Frank Fabish Columbus OH · 8:12 PM
got to go thanks
Julian – Houston · 8:14 PM
Thanks all, need to go.
AnCan – rick · 8:18 PM
Got to go. Thanks guys. … from Frank F
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 28, 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: Advocating for what you want may not be advocating for what’s best for you. (bn)
Topics Discussed
PSA in the 60s, but Gleason 3+4 — time for a PSMA scan; SUV maxes of FDG PET and PSMA PET are unrelated and can’t be compared; don’t underestimate the chills and aches when starting zoledronic acid; Keytruda surpasses his expectations — a Christmas miracle? — but another man fails to respond; surprisingly good response after switching from daro to abi; docs agree to drop ADT — but advocating for what you want may not be advocating for what’s best for you; ADT is an easier ride when you’re knowledgeable and prepared; reminder: no cold turkey with prednisone; could monotherapy be a safer choice than ditching hard-to-tolerate ADT?; doc balks at genetic testing that could uncover therapy options
Chat Log
Richard Wassersug (Vancouver) · 6:09 PM
Myovant is now Sumitomo Pharma
AnCan – rick · 6:14 PM
Gleason Grade, right group????
Julian – Houston · 6:14 PM
I did read that Myovant got bought out!
Peter Kafka – Maui · 6:14 PM
He probably should be in the Low and Intermediate group.
Steven Friedman · 6:31 PM
stevenfriedman55@yahoo.com
AnCan – rick · 6:36 PM
peterk@ancan.org
Peter Kafka – Maui · 6:37 PM
peterk@ancan.org
Peter Kafka – Maui · 6:44 PM
Sounds similar to Len’s experience recently.
Len Sierra · 6:44 PM
Almost identical to me.
Unknown · 6:44 PM
My wife Ellen had the same response she like you and Len
J. Ward · 6:59 PM
I made it an hour, gents, and wanted everyone to know about the Reclast side effects. I’m going to take Dr. John’s advice and hop off the call to get rest. Good night!
Len Sierra · 7:15 PM
From RADICALS-HD trial: After a median follow-up of 9 years, the study investigators found that 24 months of ADT were superior to 6 months (HR 0.77, 95% CI [0.61, 0.97]; 72% vs 78% at 10 years) with respect to the primary endpoint of metastasis-free survival (MFS).
Unknown · 7:20 PM
Why not try mono therapy first with Dara?
Larry Fish · 7:26 PM
please spell this drug-suppliment
AnCan – rick · 7:26 PM
fenbendazole
Jim Marshall, Melbourne, FL on Vac · 7:26 PM
I managed my ADT + Abi for 5 years and it did not slow me down. Being diagnosed at 73 and now 79 has slowed me down more. Aerobic Exercise has been the key even when my body said it was exhausted, will power got me on the bike which promoted recovery. jim
AnCan – rick · 7:48 PM
Elizabeth Heath Karmanos
AnCan – rick · 7:48 PM
https://www.karmanos.org/karmanos/karmanos-physician-directory/heath-elisabeth-8225
Frank Fabish Columbus OH · 8:00 PM
See you guys. good session.
Steve Roux, MI · 8:07 PM
Guys, really need some dinner; see you next meeting. Great session and thanks to all of you!
Len Sierra · 8:07 PM
BXCL701 showed good results when used with Keytruda in both enzalutamide resistatnt mCRPC and with small cell neuroendocrine cancer.
Len Sierra · 8:09 PM
Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, they are synaptophysin positive
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 14, 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: Full of urine and free of care (bn).
Topics Discussed
Remedies for full-bladder anxiety before radiation: Gemtesa, the Lunderg clamp, the Wiesner clamp, and the perfect glass of water; men who know less about their cancer than they should; does starting Provenge mean dropping abi?; what is Provenge?; docs OK ADT holiday after 7 months — we have our doubts; controversial off-label fenbendazole; painfully swollen leg 5 months after chemo — lymphedema or something else?; happy camper with rebounded testosterone and PSA low 9 months after radiation; struggling with rectal pain from a massive prostate tumor — a case for palliative care; he’s impatient for testosterone recovery; a doc predicts end of the road for Lupron as monotherapy becomes standard of care.
Chat Log
AnCan – rick · 6:10 PM
King Charles birthday too!
AnCan – rick · 6:17 PM
Alan B …. bet you wish you had known about that!!
AnCan – rick · 6:18 PM
Gemtesa – virbegron
AnCan – rick · 6:29 PM
Lundberg clamp; via Amazon
· 6:36 PM
Wiesner clamp also Amazon
AnCan – rick · 6:38 PM
Here’s teh study Vic referenced https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10320463/
AnCan – rick · 6:41 PM
Provenge / Sipileucel-T
todd rieke · 7:01 PM
Fenbendazole
AnCan – rick · 7:13 PM
Please run the use of any complementary or alternative medicine with your HCP!!
todd rieke · 7:13 PM
fenbenlab.com
J. Ward · 7:20 PM
Thanks. Wishing you success with Fenben and also with your consults at MDA and Guancale. I see Dr. Corn at MDA.
Jim Marshall, Melbourne, FL · 7:42 PM
I was on ADT for 5 years and it took 9 months for the testosterone to begin.
Julian – Houston · 7:47 PM
I got off all my medications 1 year ago and testosterone is at 125 last month.
Jim Marshall, Melbourne, FL · 7:49 PM
After 15 months the testosterone has trended down from 144 for the last 3 months. Interesting.
Julian – Houston · 7:50 PM
About the same, testosterone went up to 155 and came back down to 125.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 15, 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.
Editor’s pick: All his scans are saying it: cancer doesn’t live here anymore. (bn)
Topics Discussed
Scan after scan after scan says cancer’s gone; Dr. E gets her proxy hug; no biggie if blood tests are a bit out of range; multiday fasts; recalling Mark Horn; verdicts shift on maybe-metastasis; good experiences with Dr. Singh?; clinical trial prodding from docs; Medicare’s limit on “too many” scans; MSK protection against insurance denials; pelvic floor therapy miraculous for incontinence; spurning cabazitaxel and re-upping for docetaxel; moment of truth arriving as ADT fades; putting Dr. A in the driver seat; listing all the prostate drugs out there; making the new Wassersug edition affordable; solo darolutamide in his future; hidden blessings of an unseeable cancer; docs reconsidering radiation for gyncomastia; any test for PSMA avidity?; sucking on lemons but smiling as Pluvicto drops his PSA; Keytruda’s ups and downs; no PSMA, no point in Pluvicto; husband’s mets reach liver and pancreas.
Chat Log
AnCan – rick · 6:20 PM
That’s why we pay Dr. E the Big Bucks!!!
Julian – Houston · 6:26 PM
Amen!
TonyFig · 7:21 PM
Dr. Wassersug’s book has a couple of tables listing various drugs for different stages of treatment. Since that time, there have been many new approved drugs. Is there any table or listing of the various drugs we discuss on the calls?
Richard Wassersug · 7:30 PM
-Androgen Derpivation Therapy 2023 edition. First author Richard WASSERSUG
Richard Wassersug · 7:31 PM
richard.wassersug@ubc.ca
AnCan – rick · 7:41 PM
Not for a single dose of RT, Richard according to the cariologists we’ve spoken to
Richard Wassersug · 7:41 PM
Good to hear.
AnCan – rick · 7:42 PM
Left sided BCa RT is usually a much higher dose.
Len Sierra · 7:43 PM
I agree with Rick on the breast RT issue. My understanding is that RT to breast tissue for gynecomastia prophylaxis is low dose.
Richard Wassersug · 7:45 PM
Yes, but it is indeed being done less often here in Canada.
Richard Wassersug · 7:46 PM
Meanwhile I have to go. Thank you for letting me join you today.
Len Sierra · 7:47 PM
Thanks for coming!
Peter Gudel · 7:47 PM
I have to go… thanks to all
? · 7:47 PM
If you have Gynecomastia and BRCA you probably don’t want to do radiation because if you get breast cancer, they can no longer treat you fully with radiation
? · 7:48 PM
A real gotcha
Geoff · 7:50 PM
Should we (I) routinely get a FDG scan along with a PSMA scan? Or is it only an issue for Pluvicto patients?
Julian – Houston · 7:52 PM
Thanks guys – have to go.
AnCan – rick · 7:53 PM
For Pluvicto patients – this is the same issue of concordance
AnCan – rick · 7:54 PM
From Pat M …. I use Lemonhead candies to combat dry mouth and it excites the taste buds.
Pat Martin · 8:00 PM
Good night see you next week
AnCan – rick · 8:08 PM
https://pathology.jhu.edu/patient-care/second-opinions
Wendy · 8:56 PM
Here is video on aCaregiving and Coping with Ambiguous Loss https://www.youtube.com/live/iz4NgckybeY?feature=share
