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 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
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!
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!
