Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 30, 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:Do T3c men (seminal vesical invasion) need a 2nd line anti-androgen? (rd)
Topics Discussed
T3c Newbie more concerned about heart than remaining above the grass; KP Newbie struggles to get SoC; yet another young denovo Mx Newbie; 4 years out, denovo Mx Newbie is still with clueless uro; daro causes enormous fatigue and brain fog – maybe slight improvement on enz; GU med onc drops ARSI for T3c man and doesn’t replace it – should she? Dr, Larry Fong move to UDub; how do we keep the cancer unstable for men on long-term HT?
Chat Log
dennis carden
sent: 5:49 PM
ty!! definitely will! What time does it normally start?
Jim Marshall, Alexandria, VA
sent: 5:49 PM
Next Tuesday at 06:00pm ET. Jim
dennis carden
sent: 5:50 PM
ah excellent, ok! ty!!
Jim Marshall, Alexandria, VA
sent: 5:50 PM
1st & 3rd Mondays at 08:00pm ET, 2nd & 4th Tuesdays at 06:00pm ET.
dennis carden
sent: 5:51 PM
ah, will make a note of this, ty!!!
dennis carden
sent: 5:53 PM
no..and i’m 62 recently retired..so too early for medicare unfortunately..have aetna
John A
sent: 5:55 PM
Dr. Andrea Harzstark
John A
sent: 5:58 PM
Somatic mutations (as opposed to germline mutations)
Keith Lawrenz
sent: 6:06 PM
Zometa
Steve Roux, MI
sent: 6:18 PM
Love you guys but the Detroit Lions need my attention. LOL. Goodnight!
John A
sent: 6:25 PM
Regarding Len’s question…if necessary he could ditch RT in favor of chemo–??
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 24, 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:Docs finally solve his post-prostatectomy urination ordeal: a surgical clip left in by mistake (bn)
Topics Discussed
Tips to prepare for his first visit to a GU oncologist; choosing between radoncs who disagree on hormone therapy; don’t wait beyond a 0.25 PSA to get a scan; scan first, zap later — not the reverse; his terrible post-prostatectomy urination problems finally explained: a plastic surgical clip got left in after the surgery; after his first Pluvicto round, less bone pain, but middle-of-the-night vomiting; reminder that not everyone needs 6 Pluvicto rounds; his Embr Wave works great — though it didn’t for the fellow AnCan’er who gave it to him; on a trial, he’ll be getting up-front PARP inhibitor along with the ADT for his BRCA mutation — what side effects can he expect?; “tremendous aches throughout my entire body” after second shot of Prolia, and docs saying it’s normal — maybe he doesn’t need the drug so often; good news from an MRI — suspected liver mets are a false alarm.
Chat Log
Michael McCabe · 6:22 PM
Hello everyone!
Jim Marshall, Alexandria, VA · 6:25 PM
Some offlabel info in case you are watching huuricanes and weather. They is a weather model called Ventusky out of the Czech Republic. It has been very accurate, invoke www.ventusky.com it is marvelous. Jim Marshall
Julian – Houston · 6:28 PM
thank you!
Joel Blanchette, Reston, VA · 6:37 PM
Dr. Eblan is my Radiation Oncologist
? · 6:40 PM
PROMISE germline test https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
Joel Blanchette, Reston, VA · 6:58 PM
Dr. Josh Allen is also one of my GU Medical Oncologist
Jim Marshall, Alexandria, VA · 7:17 PM
ORGOVYX.
? · 7:18 PM
Orgovyx (relugolix)
Steve Collins · 7:20 PM
stevecollinsteam@comcast.net
? · 7:23 PM
🎂 🎂🎂 – happy b-day, Bill
Julian – Houston · 7:25 PM
check out https://www.orgovyx.com/
? · 7:31 PM
I can wait to talk if time is short.
Richard Tolbert · 7:33 PM
Thanks everyone, I have to leave the meeting.
Michael McCabe · 7:50 PM
take care guys gotta go…
Gene Siciliano · 8:00 PM
I didn’t realize how long these groups go, and I have to leave. Thanks everyone.
Julian – Houston · 8:09 PM
Thanks again for the great discussion and conversation!
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
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: RTIRE trial — a patient perspective (bj)
Topics Discussed
Tulsa Procedure (Tulsa Pro) questions; patient experience with RTIRE trial; types of biopsies (transrectal and transperineal); ArteraAI prostate cancer test; radiation treatment considerations when urinary conditions exist; when do I belong in AnCan’s High Risk/Recurrent/Advance Group?; interpreting prostatic capsular abutment as a risk factor; positive feedback from the 2024 PRCI Men’s Health Conference attendees; AnCan Low/Intermediate Group success stories.
Chat Log
Boykin Jordan (DC Metro)
What is the name of the trial that Stuart is referring to?
AnCan – rick
electroporation + IMRT, Boykin. Let me see if I can find name
Dennis S
Thank you. I was hoping to respond to the previous speaker
AnCan – rick
RTIRE – https://pubmed.ncbi.nlm.nih.gov/39054460/
Jim Stewart Reno, NV
good night all…grandkid duty calls!!!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 16, 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: Germline BRCA2 Dx may impact treatment decisions (rd)
Topics Discussed
Younger high risk Gent with germline BRCA; is singlet enough for T3c (SVI); retrying daro; drug holiday endures for CHEK2 Gent; FINALLY starting HT 11 yrs after RP; HT effective; persevering w. Kwon… at least until next decision point; Testosterone discussion
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 10, 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: Sounding off on Medicare Advantage’s hidden risks (bn)
Topics Discussed
What exactly do FDG PET scans show?; the skinny on fatty acid metabolism; drug holidays make sense to us; why suddenly three SBRT sessions and not two?; if you want your scan explained, make an appointment with the radiologist who took it; drug holidays have worked for him — but require steady nerves; several ideas on cutting costs of Orgovyx and abi; many of us weigh in on the hidden risks of Medicare Advantage plans; one scenario where Medicare Advantage made sense; some states are strengthening Medicare regulations to cap patient costs for oral drugs; saving on abi doesn’t require a visit to India; doublet vs triplet demands a GU oncologist’s expertise; PTEN — a new reason not to skip sequencing; he’s getting SPECT scans along with his Pluvicto treatments; a GU medonc might decide you don’t need all 6 rounds of Pluvicto if you’re doing well with fewer; Pluvicto might work better if you don’t bypass chemo; he’s recurrent — but maybe better off in our Low/Intermediate meeting; “TallAllen” Edel can help sort out treatment options in Southern California.
Chat Log
Steve L · 6:21 PM
Perhaps I do want some time or some information here. I recently requested a second opinion from another Fred Hutch provider and was turned down as a matter of policy. They don’t provide second opinions to other Fred Hutch providers. I would prefer a provider who provides more explanation and reasoning. Who are the recommended providers in Seattle both inside and outside Fred Hutch.
AnCan – rick · 6:24 PM
Very hard to get a 2nd opinion within the same institution EXCEPT Kaiser, We can discuss other alternatives.
Dr. Jeff · 6:25 PM
Fatty acids are converted to acetyl CoA, which can directly enter the Krebs cycle and subsequently oxidative phosphorylation. Each fatty acid molecule produces many acetyl CoA molecules
Steve L · 6:32 PM
My insurance covered a Bone scan and a CT even with my PSA undetectable. I mentioned to my Doc that I had some recent bone pain in my hip.
John A · 6:36 PM
thanks Steve
Len Sierra · 6:39 PM
And I have had 2 CT CAP scans approved by insurance over the past couple of years while my PSA was undetectable. I cited the ARCHES trial as the logic for doing it.
Unknown · 6:53 PM
I’d love to have a Medicare discussion at one of our meetings. I’m eligible next year and am a bit nervous about the drug coverage I should get.
AnCan Barniskis Room · 6:55 PM
abiraterone low dose with food is much cheaper and works just as well. Check GoodRX and it is free and very inexpensive.
AnCan Barniskis Room · 6:57 PM
They should be called Medicare Disavantage plan. They are perfect as long as you don’t use them.
TonyFig · 6:57 PM
There was an AnCan Medicare webinar 11/1/23 https://ancan.org/?s=medicare
Michael McCabe · 7:01 PM
I still can get under plan F because i had Medicare before 2020.
AnCan – rick · 7:02 PM
Sumitovant Pharmaceuticals
AnCan – rick · 7:02 PM
They make Orgovyx
AnCan – rick · 7:11 PM
Janssen is no longer; they’ve been folded back into JnJ
Don Rogers · 7:14 PM
Always ask any insurance agent who wants you on an advantage plan what his commission will be each year.
AnCan Barniskis Room · 7:15 PM
Brian, How many mets were seen?
John A · 7:15 PM
it was 2
Alan Babcock · 7:20 PM
I have another meeting I must go to.
Jeremy · 7:21 PM
Thankyou lads but need to run my son to baseball practice.
Don Rogers · 7:23 PM
Scriptco.com-abiraterone has been $80 per month (120-250 mg) for the last 2 yrs. $140 per years membership fee
Dr. Jeff · 7:23 PM
Scripto could save me a trip to India
Len Sierra · 7:24 PM
Yes, Dr. Jeff, and much safer!
Unknown · 7:25 PM
Costco does low cost Abbi
Steve Roux, MI · 7:27 PM
Thanks Guys! Good stuff in here!
Peter M · 7:58 PM
your place in Venice?
Brian Haack – Eagle, ID · 8:00 PM
Gotta go make some dinner. Thx for another great discussion!
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
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: The use of different labs to measure PSA, can lead to inconsistent results. CE
Special Note: Note: Rick Davis and Alexa Jett enjoyed being “live” with Dr. Mark in person for this meeting, also Andrew makes an appearance.
Topics Discussed: High PSA with biopsy; research of treatment protocols; active surveillance; MRI guided biopsy; PI-RADS 4&5 lesions; positive cores not showing up on MRI; anxiety with regards to active surveillance and treatment; elevated PSA – standing alone does not necessitate biopsy; use the same lab for better consistency in lab results; change in tumor size; diet; inflammation; IRE clinical trials; focal treatment; radical prostatectomy; cardiovascular risk factors and pacemakers; risk of infection while wearing a catheter; Decipher score; PCRI Conference; Centers of Excellence; PET scans; potential of cancer spreading outside of the prostate; abnormalities in bladder and rectal wall; SBRT; ProAct adjustable continence therapy; hyperbaric oxygen therapy and its application to prostate cancer treatment; Prostox score; reminder of the other groups such as Men Speaking Freely.
Chat
Eric M. Atlanta
Theranostics I believe is the name?
John A
Igancio, there are several ways we deal with scanxiety. Behavior: exercise, other activities ie yoga, attending groups and sharing. Cognition: distraction, cognitive therapy techniques, mindfulness, meditation. Medication: as needed short term antianxiety meds for panicky anxiety or sleep, or antidepressants which block panicky anxiety. Therapy: behavioral, psychotherapy. Time can lessen it though as rick said even us oldtimers get it, but it’s not so fresh and harsh.
Ignacio
Thank you John! Actually, I do not believe I have “scananxiety” as much as “results anxiety”, not only from scans but also from PSA tests. However, time and experience have helped quite a bit. I have accepted my situation and am willing to take actioin if needed!
Ignacio
Thank you!
John A
MedGasRes. 2018 Oct-Dec; 8(4); 167-171. doi:10.4103/2045-9912.248268 Further application of hyperbaric oxygen in prostate cancer. Lu et al
Gregg – Metro Detroit
Adios guys – gotta go!
John A
clarify spelling/pronunciation: SpaceOAR hydrogel is one brand of the 3 Mark mentioned
