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, Sep 2, 2024
AnCan’s working on Labor 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!
Editors’s Pick: Staying on an uninterrupted ARSI discussed thrice this week – do you risk morphing? Plus AnCan’s a broken record… get a GU med onc! (rd)
Topics Discussed
Disease returns after gold standard treatment, and a GU med onc is called for; younger Gent with de novo Mx hears it could be time for a GU med onc; as predicted, PCa recurs after cryoablation 10 years ago; 6 months of enz is NOT extended use; after 4 years of abi, time for break; after 4 years of daro, time for a break?
Brian: Diagnosed with the same as you have, same Lymph Nodes – 2017 – did ADT + Abiraterone for 5 years, treatment holiday for 2 years but 7(3+4) , will return to treatment in the future. Jim Marshall.
Allen C, NJ
sent: 6:08 PM
lost my audio again
Allen C, NJ
sent: 6:08 PM
have video but no audio
Allen C, NJ
sent: 6:09 PM
anyone else having problems
Jim Marshall, Alexandria, VA
sent: 6:10 PM
NO AUDIO PROBLEMS. MIGHT WANT TO TURN OFF VIDEO TO BETTER UTILITIZE BANDWIDTH. JIM
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
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 19, 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: AnCan loses one Kwon patient and gains another – not for too long we hope! (rd)
Topics Discussed
Newbie treated sub-SoC by Kwon; switching docs; this man switched care and is MUCH happier; upgraded post surgical pathology may impact salvage RT; serious RT bone damage from salvage RT is a first for AnCan; making PCRI reservations can be confusing; this man had micro-Mx and waited on Tx; RIP Kwon patient, Les S; RT and osteonecrosis; expanding AnCan Vets programming
Chat Log
AnCan – rick
sent: 5:14 PM
🎂
Len Sierra
sent: 5:52 PM
Go to NCCN.org and look for patient guidelines for advanced prostate cancer
AnCan – rick
sent: 5:56 PM
Here’s the link for NCCN Adv Guidelines https://www.nccn.org/patients/guidelines/content/PDF/prostate-advanced-patient.pdf
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.
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!
Editors Pick: The passing of Jim Barnes; ADT know-how from Richard Wassersug (bn)
Topics Discussed
Passing of Jim Barnes, age 65 — his mutations (P53 and PTEN) may have made actinium/lutetium treatments ineffective; a delicate spot radiation gets moved earlier; after five years of remission, PSA drifts just high enough to be worrisome; blood clots in lungs after his final Provenge infusion — “I actually could feel bumps”; scary bright spot in his PSMA PET appears to be a prostate cyst; OK to start Casodex and Lupron at the same time?; a mini-webinar from Dr. Wassersug on ADT preparedness; Dr. W says metformin does not appear to forestall ADT-induced diabetes; and he updates us on his still-unproven but intriguing estradiol treatments — note, please, that they’re not a way to avoid ADT symptoms!; new team is eyeing PSA before starting radiation; testosterone still trailing after 2-year treatment holiday; at Carbone, we like Dr. Lang — also take advantage of Carbone’s palliative care, and be honest with them.
