Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 19, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, 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/
darolutamide achieves undetectable status after many years; should he radiate L4 – ask his QB!; PSMA scans at low PSA levels; intermittent hormone therapy requires active surveillance… and anxiety for some; Ac225 Tx in Austria followed by Ac225+Lu177 and a PARP with no HRR mutation; another Gent remains undetectable; no evidence of PCa from scans but inferior blood counts; Newbie at the back end – 20 year survivor finally requires 2nd line anti-androgen
Even though I have been on Treatment Holiday for 21 months I still get my PSA and testosterone blood test every month. I feel like I am then proactive. jim Marshall
Jerry Grimes, Brighton, MI
sent: 6:55 PM
Hey all, gotta run. All the best!
Peter Kafka – Maui
sent: 7:08 PM
With all this movement in the nuclear medicine field, are there specialized Nuclear Oncologists now working at Centers of Excellence or is much of this being managed by GU Med Oncs or Radiation Oncs?
Len Sierra
sent: 7:09 PM
Peter, in many instances, nuclear medicine specialists are used.
Len Sierra
sent: 7:19 PM
The European Medicines Agency (EMA) is the European Union’s (EU) equivalent to the FDA. The EMA is a decentralized agency located in Amsterdam, Netherlands, that evaluates, supervises, and monitors the safety of medicines for humans and animals in the EU and the European Economic Area (EEA). The FDA and the EMA work together to streamline efforts, share best practices, and promote human and animal health.
Len Sierra
sent: 7:40 PM
From Johns Hopkins: Blood cells are made in the bone marrow. The bone marrow is the soft, spongy material in the center of the bones. It produces about 95% of the body’s blood cells. Most of the adult body’s bone marrow is in the pelvic bones, breast bone, and the bones of the spine.
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@rickd13.sg-host.com
Peter Kafka – Maui · 6:37 PM
peterk@rickd13.sg-host.com
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, Sep 12, 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/
Editors pick: His growing prostate tumor causes pain, but he’s “too old” for treatment. (bn)
Topics Discussed
At the end of his treatment road, a spirited Carl Forman speaks to us from home hospice — “it’s almost like a spa”; prostatectomy at age 49, recurrence at 58, now on ADT and feeling “like a Mack truck hit me”; PSA stops creeping higher and stands still; high fever, swollen groin keep returning — is it his artificial sphincter?; radiology report suggests he’s developing MS — why’d medonc say nothing?; growing tumor causes prostate pain, but docs keep ruling out treatments; a month after ADT, testosterone is up tenfold; managing uncharacteristic low spirits after surgery; safe to walk the streets near Penn?; weighing a 20% fracture risk from spine radiation against the benefits; Myovant sold; mutations spring up out of nowhere in new somatic report; update on AnCan’s Great Nonprofits ranking; we’re no stranger to palliative care.
Chat Log
AnCan – rick · 6:12 PM
Forman – over 5 years… Sep 2018
Unknown · 6:17 PM
Carl Forman carl.forman@gmail.com
AnCan – rick · 6:35 PM
Gents – please be aware that AnCan has spoken often about end-of-life options and hospice.
AnCan – rick · 6:38 PM
We actually had an amazing session with Prof Bill GRHS that I think is accessible on our website. I will see it.
AnCan – rick · 6:56 PM
Prof Bill Burhans GRHS discusses hospice and end-of-life https://ancan.org/20064-2/ …..
AnCan – rick · 7:20 PM
cabazitaxel (Jevtana) vs docetaxel (Taxotere)
Alan Babcock · 7:21 PM
I have another meeting. See y’all next wek.
AnCan – rick · 7:24 PM
Suprapubic catheter is a tube above the prostate to the bladder that exits to a bag.
Len Sierra · 7:46 PM
Prostate-Specific Antigen Level at the Time of Salvage Therapy After Radical Prostatectomy for Prostate Cancer and the Risk of Death Derya Tilki , MD1,2,3; Ming-Hui Chen , PhD4; Jing Wu, PhD5; Hartwig Huland, MD1; Markus Graefen, MD1; Osama Mohamad , MD, PhD6; Janet E. Cowan , MA7; Felix Y. Feng , MD6; Peter R. Carroll, MD, MPH7; and Anthony V. D’Amico , MD, PhD8
AnCan – rick · 7:48 PM
Tx Len
Neil Sundstrom · 7:50 PM
someone is breathing heavily and it is hard to hear. Please mute
AnCan – rick · 7:50 PM
It’s John Kish who is speaking
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 13, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant & Telix
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: Prostatectomy after 70. Also: Pluvicto wiped out 99% of his cancer — time for a jig! (bn)
Topics Discussed
Metformin’s faded glory in PCa treatment; grateful for heads-up on Xgeva with radium-223; statins and PCa — still anybody’s guess; darolutamide monotherapy might cut fatigue; curious about new hot-flash drug for women; experience with Onco360 pharmacy; when will white blood cells rebound from radiation; bike seats and PCa; seeing metastasis in lymph nodes that radiation skipped; dry mouth and depression overshadow wild Pluvicto success; too old for prostatectomy?; Keytruda and more Keytruda.
Chat Log
Steve in MI · 6:09 PM
Suttons Bay is nice; my wife has a few properties she manages up there. We get to Interlochen at least 2 or 3 times during the summer for concerts. Styx is the next one.
Steve in MI · 6:13 PM
There is a few up around here in the summer: Charlevoix, Fish Town, Elk Rapids. Ours is in August I think.
Julian – Houston · 6:18 PM
stopped taking because it made my bones ache!
Gary P · 6:20 PM
While not actually diabetic, I was put on Metformin after my blood sugar levels went up significantly on Abiraterone.
Julian – Houston · 6:24 PM
Same here, Gary. Took for awhile and my A1C came down.
AnCan – rick · 7:33 PM
“Patients received Pluvicto 7.4 GBq (200 mCi) every 6 weeks for up to a total of 6 doses plus BSoC or BSoC alone.”
BSoC = best standard of care
Tom Maloney · 7:34 PM
The recommended Pluvicto dose is 7.4 GBq (200 mCi) intravenously every 6 weeks for up to 6 doses, or until disease progression or unacceptable toxicity.
Tom Maloney · 7:34 PM
up to 6 doses, not requiring 6 doses.
AnCan – rick · 7:34 PM
The trials all gave 6 doses
Len Sierra · 7:36 PM
Tom, the dry mouth usually resolves by itself soon after your treatment is complete.
AnCan – rick · 7:38 PM
We do not know anyone who did less than 5 doses by choice. Doesn’t mean there aren’t any. However your doc is recommending you finish up.
AnCan – rick · 7:39 PM
We’ve seen less than 6 doses but only where blood counts or other markers have been compromised.
AnCan – rick · 7:45 PM
Xgeva = denosumab
Steve in MI · 7:52 PM
Keep coming back Spencer.
? · 7:52 PM
Thank you to everyone for excellent advise.
Joe (Dubois WY) · 7:59 PM
keytruda
Julian – Houston · 7:59 PM
Keytruda
Julian – Houston · 8:00 PM
Thanks guys. Another great session.