Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 27, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
In a special session before tonight’s meeting, we presented key papers from ASCO GU 2024, a major conference for doctors treating prostate cancer, and answered questions — details here.
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: PSA rising but nothing on the PET scan – the tumor was hiding behind his bladder. (bn)
Topics Discussed
After beating back his cancer many times, he’s now neuroendocrine and wonders about options besides platinum (immuno, DLL3, alpha) — Dr. Rahul Aggarwal is likely to have answers; Tylenol on top of Orgovyx and darolutamide may have been one too drug too much for his liver; struggling to work remotely with Dr. E’s office team — you’ll need “a heavy dose of patience”; after 6 unhelpful chemo rounds, now seeing a good lutetium response, but unresponding tumors may be neuroendocrine; maximum out-of-pocket expense is the important number in choosing a Medicare Part D plan; trusting a broker for Medicare selection, and are Advantage plans a bad deal for cancer patients?; despite rising PSA, PSMA scan looked clear…turned out the tumor was hiding behind the bladder; good feedback on Dr. Elisabeth Heath; 90-day Lupron break to “catch my breath” — is restarting now a lost cause?; Lupron finally over, he’s switching back to a real bike from his e-bike…but when do the hot flashes stop?
Chat Log
Jim Marshall, Alexandria, VA · 5:34 PM
we all need to be our own best advocate at all times
Jim Marshall, Alexandria, VA · 6:05 PM
on a Macbook, I see all the names. without hovering
Len Sierra · 7:05 PM
Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, synaptophysin and DLL3 (Delta-like Ligand 3) is positive in 76% of NEPC.
AnCan – rick · 7:06 PM
Contact: Garrett Crook 424-314-0745 Garrett.Crook@cshs.org Principal Investigator: Kanya Sankar, MD
AnCan – rick · 7:07 PM
DLL3 NCT04471727 https://classic.clinicaltrials.gov/ct2/show/NCT04471727?term=HPN328&cond=Prostate+Cancer&draw=2&rank=1
AnCan – rick · 7:14 PM
HPN328 is the DLL3 drug
AnCan – rick · 7:38 PM
Solo Arts Heal TOMORROW NIGHT rd + MARK KISSIN FRCS check https://ancan.org/solo-arts-heal/ for links to The Marsh page and join us on Zoom or YouTube
Thomas Matica · 7:54 PM
Did Rick say that there is video discussion on the insurance issues? I can’t find anything. Thanks.
AnCan – rick · 7:55 PM
Tom – search for Triage Cancer on our site
AnCan – rick · 7:56 PM
Here you go….. https://ancan.org/webinar-lets-talk-medicare-2024/
Patient Highlights from the 2024 ASCO GU conference
In a 75-minute “pre-game” before the 2/27/2024 meeting of the high-risk/recurrent/advanced prostate cancer group, moderators John, Rick, Ben, and Len discussed highlights from the just-concluded ASCO GU conference, a major meeting for genitourinary cancer specialists. They selected from hundreds of papers on prostate cancer presented in sessions and posters. We closed with a 30-minute audience Q&A.
What we covered:
Abi boosts olaparaib for BRCA
After triplet therapy, what next?
Less treatment, same cancer-fighting power
Trial of a neuroendocrine PCa drug
Prostate cancer and suicide
Germline & somatic testing is too infrequent
What treatments work after Pluvicto
Pluvicto flare largely lasts only one treatment
Community providers do poor job treating mCSPC men
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, Feb 13, 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/
Editor’s Pick: A penile prosthesis, and a lot of new hips. (bn)
Topics Discussed
Back on ADT, and now clobbered by fatigue — we suspect enzalutamide; exercise when walking’s too tough; he’s considering Pluvicto — but where’s the concordance scan?; FDG PET at low PSA?; when scanned, get the image CDs; new medonc OK’s ADT drug holiday at two years; more good reports on Dr. Bilusic; when dropping abi, taper prednisone cautiously; penile prosthesis surgery a success; insurance for yearly DEXA scans; urologists who don’t counsel on sexual dysfunction; making radiation a day at the beach; getting the word out on AnCan; hip issues and radiation; concerned about blood counts; shortness of breath and Flomax; drop abi, keep Lupron — or vice versa?; Peter K’s next move.
Chat Log
Alan Babcock · 7:21 PM
I have another meeting I have to attend. Hope to see everyone on Thursday.
Frank Fabish Columbus OH · 7:29 PM
has any read any information about the test trial of Anvirzel?
AnCan – rick · 7:35 PM
I know nothing about Anvirzel – but hopefully the Brains Trust can follow up
Frank Fabish Columbus OH · 7:37 PM
right. I think it is in Phase 1. not sure about PC trial. Hope to find out more info.
Len Sierra · 8:02 PM
For Frank Fabish: Anvirzel is a brand name for an aqueous extract of the plant Nerium oleander. Anvirzel contains two toxic cardiac glycosides, oleandrin and oleandrigenin. oleander is likely unsafe to take by mouth. It can cause a burning sensation in the mouth, nausea, vomiting, diarrhea, weakness, headache, stomach pain, serious heart problems, and many other side effects. Taking the oleander leaf, oleander leaf tea, or oleander seeds has led to deadly poisoning.
Frank Fabish Columbus OH · 8:03 PM
so I read about the extract
Frank Fabish Columbus OH · 8:14 PM
a friend of mine who had stage 4 metastatic PC with lesions on the brain. a brain bleed killed him Sunday. he was approved for this drug.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 5, 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/
Join our other free and drop in groups: Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/ Veterans Healthcare Navigation… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/
Are eye issues related to hormone therapy?; Orgovyx AND Lupron vs Orgovyx OR Lupron?; Pluvicto may be in his future; time for PSMA scan and possible end to 6 yrs HT free; exercise guidance; awaiting PSA; next steps post chemo; monotherapy darolutamide; somatic testing; bulging disc gets in the way of exercise
