Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 2, 2024
HAVE YOU COMPLETED THE ANCAN SURVEY???
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AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
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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
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: Gents compare ‘holiday’ notes. And maybe heart muscle is compromised by ADT (rd)
Topics Discussed
Newbie joins us in time for his holiday; whatever happened to ‘triplet’ therapy for high volume denovo Mx Gent; spot RT starts, daro stops and more chemo; one opinion suggests HT holiday now – is that smart?; his holiday has been good – can it continue?; don’t knock yourself out with KP/NIH when you have VA and Tricare for Life; wassup with Medicare Telehealth in 2025?; ‘Cushingoid’ moon face suggests time to drop steroids + abi.
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: He starts forgetting words in mid-sentence — is it his ADT? (bn)
Topics Discussed
Reminder to complete the AnCan survey — this includes those who watch our recordings!; entering “the most intense time of my 5 1/2 years with prostate cancer” as cancer recurs and chemo and bone radiation begin; 550 genes in his report — but not many will be actionable; close relatives have prostate cancer, but nothing shows on germline tests — perhaps it was a toxic exposure?; a colon cancer gene mutation is found to be driving his prostate cancer — does he have both?; bizarre insurance company denial has him scratching his head; don’t let VA paperwork stand in the way of a PSMA PET; platelet clumping in his blood tests isn’t likely to be disease-related; he starts forgetting words midsentence — is ADT to blame?; his doc restarts the ADT clock — this time with standard-of-care intensification; why CT and bone scan, but no PSMA PET?; doctors don’t talk to each other anymore, and patient care suffers.
Chat Log
Jim Marshall, Alexandria, VA · 6:36 PM
TCEs are known causes of Prostate. Cancer. Jim
AnCan – rick · 6:46 PM
MUTYH is the driver mutation that Joel had
AnCan – rick · 6:50 PM
Pesticides adn Prostate Cancer https://acsjournals.onlinelibrary.wiley.com/doi/abs/10.1002/cncr.35572?mc_cid=c1825f551a&mc_eid=838454d636
Jerry G, Brighton, MI · 7:19 PM
estradiol helps
Steve Roux, North Michigan · 7:24 PM
thanks! I’ll ask Dr. Fedak.
Steve L · 7:54 PM
Thanks to all. Happy Thanksgiving!
Steve L · 8:01 PM
Orca in photo was taken from my boat .
Julian – Houston · 8:08 PM
Happy Thanksgiving to ALL!!!
Steve Roux, North Michigan · 8:09 PM
This group empowers us to be our own best advocate.
J. Ward · 8:09 PM
Thankful for AnCan. Happy Thanksgiving, everyone!
Steve Roux, North Michigan · 8:10 PM
I need to sign off…..Tucker the rescue pup and my wife require my attention. HAVE AN AWESOME THANKSGIVING DAY!
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: Focal therapy delays the time for more definitive treatment options. (bj)
Topics Discussed
Long-term treatment options for post radiation urinary issues; learn the importance of getting a second opinion on a prostate biopsy – active surveillance may be an option. Getting a Decipher test — testing to determine the liklihood of cancer spreading; Prostate Cancer Research Institute (PCRI) is a valuable information source; Additional tests to screen for prostate cancer, such as: EpiSwitch PSE and ExoDx Prostate Test; Considering focal treatment options with a cribriform pattern and intraductal indications — High-Dose (HDR) Brachytherapy, High Intensity Focal Ultrasound (HIFU) and Tulsa-PRO; Prostox DNA testing to determine risk for Genitourinary (GU) toxicity.
Chat Log
AnCan – rick
unauthorized!!!
Tim in Tampa
I completed the survey yesterday!
AnCan – rick
Tx Tim….
AnCan – rick
Ming Zhou https://profiles.mountsinai.org/ming-zhou
AnCan – rick
JH 2nd opinion https://pathology.jhu.edu/patient-care/second-opinions
Causley
Boykin is the star. He is the guru with this matter.
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: Don’t use a PA or NP to make treatment decisions; closely followed by – audit your medical records! (rd)
Topics Discussed
Deferring treatment on recurrence ain’t a great idea; newbie needs MSKCC referral and we personally endorse two docs; check your medical records – you might find something that never happened; exercise recs for man with heart issues; PROMISE shows no mutations; Payer forces switch of RT provider at last minute; here’s why you avoid a PA or NP if a treatment decision is next; does cribriform change treatment?; value of AI retrospective opinion – even if available; treatment veteran moves to Jevtana; why genetic counseling before germline test; abi-enz sequencing discussion
If any of you new people are Veterans, contact me at CaptJim@AnCan.Org Jim Marshall, USAF(Ret)
Luther
sent: 6:59 PM
enjoyed tonight’s Meeting and will register at conclusion of meeting
Adam
sent: 7:01 PM
Definitely wasn’t covering your ass. Thanks for another great session guys. I have to check out. Survey done!
John A
sent: 7:08 PM
thanks Adam
Steve Roux, North Michigan
sent: 7:10 PM
I visit my patient portal after every office/lab visit. There is a note at the top of the page to contact them if there are any errors. I have done that in the past to correct notes from my 1st med onc.
AnCan – rick
sent: 7:14 PM
Max heart rate – 220 minus age
Alfredo in Houston
sent: 7:16 PM
Steve, all the organizations that care for my wife and I use the same Electronic Medical Record, and they are able to share test results as well with our permission. We pay attention to our After Visit Summaries after every contact. Unfortunately, this is not true for all patients all over the USA
Julian – Houston
sent: 7:21 PM
have to leave early – Great discussion
Alfredo in Houston
sent: 7:30 PM
Agree with everything Rick just said! Unfortunately I have to go. Thanks to all y’all; See you next time.
Steve Roux, North Michigan
sent: 7:39 PM
hey guys – great meeting – I gotta run tho. See you next week!
Thomas M
sent: 8:06 PM
See you all next time, gents. Thanks.
Jim Marshall, Alexandria, VA
sent: 8:07 PM
Jim Marshall. 703-338-7341. CaptJim@ancan.org Veterans
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: 1) Pluvicto pre-chemo… maybe? 2) Agree your stage before seeking treatment– rd
Topics Discussed
New denovo Nx Gent treated at VA gets less then SoC; get all docs to accept the same staging before seeking treatment; removing the surgical clip makes him feel better; 4x Pluvicto wasn’t enough – continues but is he concordant?; natural nausea remedies; intraductal/cribriform 4+5 Gent recurs 30 months post-RRP; extensive mets creep up on a Regular – Pluvicto pre-chemo?; gratitude!
JNJ-63898081 (JNJ-081) A bispecific antibody that targets PSMA on tumor cells and CD3 on T cells. JNJ-081 is designed to promote anti-tumor activity.
AnCan – rick
sent: 5:32 PM
Tx Len
Chuck Snyder
sent: 5:32 PM
Thanks all for the suggestions!
Len Sierra
sent: 5:41 PM
Aloxi (palonosetron) is another anti-nausea medication in the same class as ondansetron and granisetron (5HT3 antagonists).
Steve Roux, North Michigan
sent: 5:46 PM
hey guys, I need to run. Great Meeting, AGAIN. Don’t forget to get that survey done. Get ‘er done!
Chuck Snyder
sent: 5:46 PM
Thanks Len.
Len Sierra
sent: 5:50 PM
This is from AI, so understand the possible errors, but here is what they say: The choice of whether to use CTCs or ctDNA in a liquid biopsy depends on the specific clinical question being asked and the stage of cancer. For example, CTCs may be more useful for detecting early-stage cancer or monitoring the response to therapy, while ctDNA may be more sensitive for detecting advanced-stage cancer or identifying resistance mechanisms.
Julian – Houston
sent: 5:52 PM
• United States +1 (646) 749-3129
AnCan – rick
sent: 5:53 PM
222-583-973
Len Sierra
sent: 6:08 PM
I agree, great job, Dr. John!
Thomas M
sent: 6:09 PM
Was it Dr. Eshana Shah, MD at Fred Hutch who was mentioned?
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.
