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!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 27, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
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: Age 50 with BRCA2 — surgery or radiation? and what about PARPi?
Topics Discussed
Newly diagnosed with BRCA2 mutation at age 50, extracapular extension and seminal vesicle invasion – surgery or radiation? PARP inhibitor upfront?; nomograms don’t account for mutations; didn’t love daro, but he’ll give it a second chance; after radiation, recurrence in the prostate but no metastasis — brachy or cryo next?; a new treatment puts an enzalutamide right into the prostate; after 1 1/2 years of monthly Xgeva, time to get off?; Pluvicto was working, so he skipped the last two treatments; insurance coverage for a second Pluvicto treatment; computer failure sends his hospital back to paper and pencil — but he gets his Orgovyx; psst – Dr. Elisabeth Heath plans a move to Mayo; PSA of 3.75 after radiation seems really high — but we’ve seen it take years to drop; doc suggesting a holiday from his abi monotherapy; taper off prednisone slowly and carefully, monitoring blood; for estradiol questions, check out our discussion video with Richard Wassersug.
Chat Log
Darren Chervitz · 6:49 PM
Thanks for listening and for all the incredible information!
Unknown · 7:02 PM
Change of plans, I have no need for time today. Recent Provenge cause pulmonary embolism took about 4 weeks before showing improvement, moderate improvement now. Latest PSA (8-22) trended down to 0.48.
Larry Schuller · 7:05 PM
The conventional wisdom about surgery after radiation is that surgery on tissues that have been damaged by radiation is problematic and most surgeons will try to avoid it.
Larry Schuller · 7:06 PM
Localized ablation is another matter.
Unknown · 7:06 PM
Larry S. – that was the ‘old’ wisdom. It really is no longer.
Larry Schuller · 7:08 PM
Rick, I would LOVE to see that research. I had prostatectomy and am recommended salvage radiation but expect to have future surgeries and am concerned about those.
Unknown · 7:10 PM
No recommendations on avoiding blood clots side effects. Dr stated that he has many patients who have had Provenge and that I am the only patient to report blood clots.
Len Sierra · 7:13 PM
Larry Schuller, there are now surgeions who specialize in post-RT prostatectomy. Dr. Eastham at MSK is one that I know of.
Larry Schuller · 7:14 PM
But is post-radiation surgery common outside of those specialists?
Len Sierra · 7:15 PM
Not sure, probably not common.
Jim Marshall, Alexandria, VA · 7:36 PM
Cookies, to me, are a better choice to donuts. always a nice touch. Jim M
Steve Roux, MI · 7:47 PM
The order I called in to the bakery included 1/2 dozen scones too. Almost like a giant cookie?
Kirt Schaper · 7:52 PM
i have to go, thanks all
Jim Marshall, Alexandria, VA · 7:56 PM
No more worrying about turning 80 an dno longer to worry abouit dying young. Jim
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: Leverage second opinions when in decision making mode (bj)
Topics Discussed
Following PSA levels after prostatectomy — how low, how fast, how often; understanding undetectable PSA following surgery; newly diagnosed seeks second opinion; active surveillance; getting the most out of in-person medical conferences; focal vs definitive treatment; germline (inherited mutation) testing and the Promise Study; Post radiation urinary issues — irritation and flow; managing symptoms of long covid during radiation treatment; importance of getting a second opinion from a prostate cancer center of excellence; attending PCRI conference — visit AnCan
Chat Log
Boykin Jordan (DC Metro)
A lot of fun!
Jerry Grimes, Brighton, MI
Oops, I had the wrong meeting! All the best, and I’ll show myself out… 😊
AnCan – rick
Trends in Active Surveillance for Men With Intermediate-Risk Prostate Cancer https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2822716
AnCan Barniskis Room
This Weds 7:30 pm PT Kelly Spillman a comedian who does a stand-up comedy routine about living with cancer will perform online at ANCAN Solo Arts Heal. Please share this if you know someone dealing with cancer. Kelly Spillman is a psychology professor, stand-up comedian and storyteller based in Los Angeles. Kelly has performed at The Comedy Store, The Improv and many comedy festivals around the country. She is currently touring her solo show I Blame Florida which is a humorous, hopeful show about her quest to beat her stage 4 colon cancer diagnosis. To Watch: Click On :https://themarsh.org/soloartsheal/ Scroll down to mid-page where you can click to view in Zoom or YouTube
AnCan – rick
Promise study https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
AnCan – rick
Darryl – here’s our phone number to dial in 646 749 3129 #222 583 973
Jim Stewart Reno, NV
have to sign off to get grandkids, goodnight everyone
AnCan – rick
Is he new??
AnCan – rick
ancan.org
AnCan – rick
NCI Centers http://www.cancer.gov/research/nci-role/cancer-centers/find
AnCan – rick
NCCN http://www.nccn.org/members/network.aspx
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 13, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
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: Exercising when it even hurts to walk; building muscle without T (bn)
Topics Discussed
Those blahs weren’t Xtandi — they were Covid!; muscle mass without testosterone — not an exercise in futility; “Mr Hot Flash” is doing pretty well on Orgovyx; at age 59, “head-to-toe bones mets” and PSA of 1,440; PSMA scan isn’t enough before Pluvicto — get a recent somatic test; with the mets, it hurts so damn much to walk — how to exercise?; denosumab has an edge over Zometa for bone health, and Zometa monthly is too much; coming off second drug holiday, discouraging news — ; recurrence suggests he’s “castrate resistant” even though he’s getting no ADT; radium instead of Pluvicto for bone-only mets?; the new “Mr Hot Flash” learns about Embr Watch; a two-fer radiation will get both his prostate and the met on his pelvic bone; mixed feelings on rectal spacers for radiation; Dr. Chuck Ryan now at Sloan Kettering, soon accepting new patient; why all this trial information from Merck on Facebook?
Chat Log
AnCan – rick · 6:25 PM
ACSM trainer finder….. look for Certified Cancer Exercise Trainer https://certification2.acsm.org/profinder?_ga=2.139239987.1600007473.1525799292-1759941655.1523997371
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.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
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!
Newbie not sure whether to attend AS, Low/Int. or both; Post radiation/ADT treatment schedule; Comparison of radiation treatment options; SBRT and fertility; When should you get a PSMA PET scan test?; Understanding biopsy results; Preparing for IRE ( electrical focal zapping) and SBRT clinical trial – is this the best option; Pros and cons of participating in a clinical trial; PCRI Conference — largest patient centric conference in the world.
Chat Log
AnCan – rick · 8:24 PM
Gents – please feel free to share your emails with each other to follow up
AnCan – rick · 9:11 PM
IRE ???
AnCan – rick · 9:16 PM
Electroporation – electrical focal zapping
