Ancan would like your input on its future planning and academic research. Please take a few minutes to complete The 2024 AnCan Survey which is at thislink.
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: Prognostic tools are a good starting point for discussing treatment options with your doctors. (bj)
Topics Discussed
Online resources to compare multiple prognostic tools (e.g., nomograms, PSMA, NCCN) to diagnose our disease; initial considerations for treatment decisions, such as: some urologists view younger men as better candidates for surgery — be careful of this bias when considering your treatment options; PROSTOX saliva swab for germline DNA testing and avoiding toxicity from radiation therapy; getting the right information so you can make an informed decision; post SBRT urination problems include: frequency, urgency, and discomfort (burning, stinging, tingling); clarification on SBRT (a treatment) and Meridian (a radiation machine); urgency and incontinence; active surveillance; RTIRE trial acceptance; AnCan survey emailed to you — let us know what you think; a little humor with emotional support llamas; Happy Veterans Day.
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: Counseling hope to a sports hero who fears the worst (bn)
Topics Discussed
High-profile British cyclist Chris Hoy fears the worst — Rick wants him to know there’s hope; ADT doesn’t just give you reasons to be sad, it physically causes depression — and if you don’t treat it, everything else gets worse; jury’s been out a long time on ADT and dementia; ADT side effects don’t wear off, as with other drugs — they get worse; on a drug holiday, his PSA has stayed undetectable — but not so fast: it only counts if testosterone is going up; drug holidays can’t come right away — they have to be earned; PSA rises, rises, rises, after he’s taken off Lupron, but Kaiser doc hasn’t acted; VA may be his way out of the Kaiser trap; after hating it twice before, darolutamide now suits him well; that lead box is a clue he’s not about to get the FDG PET he needs for his non-avid lesions; whirlwind of confusion over the new Part D rules and the magic $2,000 number; now that radiation treatments are over, when should he get a PSMA PET scan?; off Lupron and on darolutamide monotherapy, he feels about the same — does that make sense?; he’s already doing what his intraductal diagnosis suggests he do; doc who says no to everything should be saying yes to PSMA PET
Chat Log
Jim Marshall, Alexandria, VA · 6:29 PM
On ADT & Abiraterone for 5 years,stayed active, volunteering, bike rides even when fatigued, keepig my mind active doing research on PC and Veterans Affairs. No time to feel sorry for myself. Jim Marshall, USAF(Ret)
Steve L · 6:37 PM
I was classified low volume metastatic even with 12 of 12 cores positive because I have only 2 bone mets. Does the seem right?
AnCan – rick · 6:47 PM
$@Steve L-ID-400003$… low volume Mx is different from low volume Biopsy. Very different kettles of fish
Jim Marshall, Alexandria, VA · 6:48 PM
Been on Monthly PSA & testosterone blood tests since the beginning. Jim Marshall
Steve L · 6:49 PM
No Decipher. Gleason of 4 plus 5.
Steve L · 6:51 PM
Great that Bruce has had extended non-detectable PSA
AnCan – rick · 6:55 PM
I would disagree with @Jeff M. A Deicpher test at this point is not going to tell you much. It is designed to predict recurrence. 4+5 tells you all you and your med onc need to know.
Steve L · 6:59 PM
My treatment is ADT(lupron), Abi (now with Dexamethasone}. Also had Provenge in June/July.
Steve L · 7:12 PM
Jeff, After 2 years of undetectable, PSA started increasing in January and I was classified castrate resistant. No radiation nor surgery except turp. Denovo Mets. Most recent PSA 0.59
Doug D · 7:34 PM
Unfortunately, I need to leave early for an appointment. I will be attending these sessions regularly. I really appreciate your help, guidance, and time. Thank you very much.
Steve L · 7:51 PM
I recently proposed circulating tumor DNA test,
PSMA scan, and radiation to primary and mets with negative response. Any recommendations for a second opinion? Perhaps MD Anderson or ????? I am in Seattle area.
AnCan – rick · 7:55 PM
Steve – this a big question that should be posed to the group. Too much to handle via Chat window.
Steve L · 8:01 PM
Okay, I will try next meeting if no time today.
Thomas M · 8:04 PM
Good night , Gents,,,,,,,Thomas
dan: alexandria, virginia · 8:12 PM
I have to leave… thanks for advice, Gents. Night, dan
Low/Intermediate Prostate Cancer Video Support Group, Oct 21, 2024
Low/Intermediate Prostate Cancer Support Video Support Group, Oct 21, 2024
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: A second opinion from a creditable source is a good way to verify an initial diagnosis. (bj)
Topics Discussed
New diagnosis researching HiFu and TulsaPro; PROMISE Study for genetic testing; focal treatment limitation; Interpreting nomogram results to choose between surgery or radiation; importance of getting a second opinion; dealing with anxiety as part of the decision process; helpful tip — build a list of questions before seeing your doctor(s); understanding radiation treatment options — SBRT, Cyber Knife, etc.; Are rectum spacers still needed for radiation treatments; overcoming analysis paralysis; nadir outcomes for radiation treatment; decision regret following prostatectomy; transitioning from active surveillance to a definitive treatment; SBRT experience update; Prostox (cheek swab) for DNA/genetic testing; Decipher testing for DNA/genetic testing; low dose brachytherapy.
Chat Log
AnCan – rick
Promise study https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
Low/intermediate Prostate Cancer Video Support Group, Oct 7, 2024
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: A careful review of treatment options can help you avoid decision regret. (bj)
Topics Discussed
New prostate cancer diagnosis — how do I avoid decision regret?; prostate cancer treatment considerations — surgery vs radiation; using nomograms to predict likelihood of recurrence; PROMISE research study and germline DNA testing; decipher test; external beam radiation; cyber knife; somatic DNA testing; catheter; Gleason score; TULSA Pro; electroporation; kegel exercises; Prostate Cancer Research Institute (PCRI); RTIRE trial update; COVID and PSA spikes; High-Intensity Focused UltraSound (HIFU) and other focal treatment options; applying study results to your situation.
Chat Log
AnCan – rick
http://nomograms.mskcc.org/Prostate/index.aspx
George Toronto
I have a question for Michael
George Toronto
cancel my question please
Causley
Michael – this is Causley E. I’m in the group with you. I had surgery 2 years ago and can share my experiences with you when time permits.
Boykin Jordan (DC Metro)
PCRI – https://pcri.org/
Boykin Jordan (DC Metro)
PCRI (YouTube) – https://www.youtube.com/c/thepcri
AnCan – rick
PROMISE test – free trial by mail. https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
AnCan – rick
Dr. Ming Zhou https://profiles.mountsinai.org/ming-zhou
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!
