Hi-Risk/Recurrent/Advanced PCa Video Chat, April 23, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, April 23, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, April 15, 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!
Join our other free and drop in groups:
Editor’s Pick: What do medical medical marijuana and estradiol (E2) have in common? … cardiovascular risks (rd)
Topics Discussed
Is this Newbie getting enough radiation for his high risk situation?; darolutamide monotherapy or maybe a drug holiday?; ARX517 trial – PSMA antibody drug conjugate that carries cytotoxic payload; addressing sleep issues; otc CBN; medical marijuana comes with cardiovascular risks; switching your provider for cause; estradiol and phytoestrogens; early success with AR degrader ARV766; delaying Pluvicto #3 and considering PARP-i; is it a flare or progression?; fenbendazole
Chat Log
Hi-Risk/Recurrent/Advanced PCa Video Chat, April 23, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, April 15, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, April 15, 2024

 

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
View AnCan’s patient-centered selection of papers and presentations from ASCO GU 2024, one of the top conferences on prostate cancer treatment:  https://youtu.be/YweU8hjA0Lw 
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! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/          Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups: Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/       Veterans Healthcare Navigation… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/
Editor’s Pick: Two younger men face challenging treatment but it’s the older man with the young wife who yearns for his testosterone! (rd)
Topics Discussed
SoC not offered to ‘young’ man with recurrent disease; testosterone replacement therapy; another young Gent with mHSPC needs a GU med onc QB; blood work returning to normal; drug holiday coming up; are glucocorticoids carcinogenic in the short or long run?; high risk diagnosis needs more investigation before treatment decision; there are solutions to ED; successful Tx continues as T returns.
Chat Log
  • Richard Tolbert

    sent: 5:30 PM

    The Patient Advocate Foundation, Co-Pay Relief Fund (CPR) Prostate Cancer, Metastatic Prostate Cancer and Prostate Cancer Health Equity are now open. Contact 866.512.3861. Email for portal: The Patient Advocate Co-Pay email portal: https://copays.org/#login

    sent: 6:04 PM

    Mark. Can’t find you to reply just to you. I am in bed because I had knee replacement surgery 3 weeks ago. Much more comfortable. I actually find my bedroom is the most comfortable place for these meetings.

    Richard Tolbert

    sent: 6:09 PM

    Jeff, it’s Richard Tolbert. Don’t understand the problem. Good luck with your recovery. My wife is at a crossroads with her knee pain, bone on bone. Will need knee replacement surgery in the near future.

  • sent: 6:11 PM

    Mark asked me in a private message why I was in bed, and if it was due to painful bone metastasis.

    Adam Albarado

    sent: 6:27 PM

    Thanks for the discussion and advice guys!

    AnCan – rick

    sent: 6:30 PM

     

    sent: 6:30 PM

    We are here for you Adam

    AnCan – rick

    sent: 6:31 PM

    THOMAS Matica

    sent: 6:40 PM

    From the Prostate Cancer Foundation “How Bipolar Androgen Therapy Works” https://www.pcf.org/c/how-bipolar-androgen-therapy-works/ Quite the see-saw therapy. Has anyone heard of this or been treated with it? Thomas

    Peter Kafka – Maui

    sent: 6:49 PM

    Dr. Ming Zhou – Dept. of Anatomic & Clinical Pathology, Tufts University School of Medicine. 800 Washington St, Box 802, Boston, MA 02111 – Have the pathology slides sent there for a second opinion on pathology.

    Peter Kafka – Maui

    sent: 6:50 PM

    Johns Hopkins second opinion on pathology: pathology.jhu.edu

    AnCan – rick

    sent: 6:50 PM

     

    Adam Albarado

    sent: 7:03 PM

    ☝️

    sent: 7:04 PM

    I have my PSA test tomorrow and I feel it will be lower than the last test at 0.09.

    THOMAS Matica

    sent: 7:09 PM

    Good Night, All……………..Thomas

    Julian – Houston

    sent: 7:11 PM

    good night all – another great discussion!!!

    AnCan – rick

    sent: 7:13 PM

    He’s in Panama City, PANAMA, Adam!!!

    Adam Albarado

    sent: 7:14 PM

    Ha! Yeah…the same but different.

    Adam Albarado

    sent: 7:15 PM

    That does explain the pulsing music though.

Solo Arts Heal with Beth Horner

Solo Arts Heal with Beth Horner

AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborate every 4th Wednesday of the month for Solo Arts Heal.

 

You’ll love our March guest, Beth Horner! Noted for her vivacious stage presence, comic sensibility and warm, energetic style, Storyteller Beth possesses a repertoire of stories that has been called “heartfelt, articulate and truthful.”

 

A National Storytelling Network Circle of Excellence Oracle Award recipient, Beth is a 40-year internationally touring spoken word artist who is sought after as a Storyteller, teaching artist, consultant and narrative coach. 

 

She has performed multiple times at the National Storytelling Festival, for NASA, on Live From National Geographic, for the International Art of Storytelling Festival, the Starlight Educational Foundation of Taiwan, and for Lyrics & Lore: A Weekend with Songwriters & Storytellers at Dollywood’s DreamMore Resort.

 

She is a former Board Member of the National Storytelling Association, conducted a series of workshops for NASA Engineers and Astrobiologists in California and Washington, D.C., and served as narrative consultant for NASA/Johnson Space Center’s Story Mining project for which she collected the stories of the scientists behind the Apollo Space Missions.

Ron (Beth Horner’s partner) driving Corvette

 

Most recently, Beth presented Storytelling: A Heart to Heart Connection for the American Parkinson Disease Association’s 2024 Annual Conference. Beth’s love of all kinds of stories – traditional, literary, family, musical, historical and hysterical – makes her a joyous emissary into the world of story.

 

Beth will regale us with the slightly terrifying hundred mile an hour racetrack experience that sparked her revelation as a care partner (pictured): that amidst the cacophony of financial worries, doctor’s appointments, overwhelming research, deluge of therapies, legal hurdles and all other care partner jobs, it is the care of the spirit that must soar above all else. 

 

Watch here:

 

Hi-Risk/Recurrent/Advanced PCa Video Chat, April 23, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, April 9, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, April 9, 2024

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
View AnCan’s patient-centered selection of papers and presentations from ASCO GU 2024, one of the top conferences on prostate cancer treatment:  https://youtu.be/YweU8hjA0Lw 
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! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/          Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups: Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/       Veterans Healthcare Navigation… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/
Editor’s Pick: A night of abi abundance — plenty of advice and observations on abiraterone. (bn)
Topics Discussed
Going from Lupron to Orgovyx, he sees fewer hot flashes; what causes our hot flashes, anyway?; uptick in lactate dehydrogenase — should I worry?; starting abiraterone — what to look out for?;  when everything else has failed, a Hail Mary on abiraterone vs a clinical trial; ask Dr. Sartor why Pluvicto didn’t work despite loads of PSMA; we suspect the darolutamide trial he’s being offered is flawed; Jim Marshall emerges from complex heart surgery;  overseas trip for lutetium and actinium treatment ends in disappointment stateside  — might be time to look for neuroendocrine; stay vigilant with scans even if PSA is low.
Chat Log
John A · 6:40 PM
https://ancan.org/?s=dental
AnCan  – rick · 6:41 PM
Prognostic Value of Lactate Dehydrogenase in Metastatic Prostate Cancer: A Systematic Review and Meta-analysis   https://pubmed.ncbi.nlm.nih.gov/31558410/
John A · 6:43 PM
High LDH was associated with both worse OS (pooled hazard ratio [HR], 2.07; 95% confidence interval [CI], 1.75-2.44) and PFS (pooled HR, 1.08; 95% CI, 1.01-1.16). In subgroup analyses of both patients with castration-resistant prostate cancer (CRPC) and those with hormone-sensitive prostate cancer (HSPC), LDH was associated with OS (pooled HR, 2.02; 95% CI, 1.69-2.42 and pooled HR, 2.25; 95% CI, 1.78-2.84, respectively). In patients with CRPC, LDH was associated with OS in those treated with docetaxel systemic chemotherapy and androgen receptor-axis-targeting agents (pooled HR, 2.03; 95% CI, 1.37-3.00 and pooled HR, 1.79; 95% CI, 1.25-2.57, respectively). Elevated serum levels of LDH were associated with an increased risk of mortality and progression in patients with metastatic PC. LDH was independently associated with OS in both patients with CRPC and HSPC. LDH could be integrated into prognostic tools that help guide treatment strategy, thereby facilitating the shared decision-making process.
Len Sierra · 6:54 PM
Chas Ryan · 7:15 PM
God damn I love that advice!!
eric · 7:27 PM
Application No.: IRB00393729
eric · 7:38 PM
A randomized, double-blind, placebo-controlled Phase 3 study of
darolutamide plus androgen deprivation therapy (ADT)
compared with placebo plus ADT in patients with high-risk
biochemical recurrence (BCR) of prostate cancer
BAY 1841788 / 21492
eric · 7:42 PM
just sent you the file rick
AnCan  – rick · 7:43 PM
Eric – ‘m pretty sure this is the trial  about which we objected to Bayer. The Standard of Care (placebo) arm is insufficient. Please point that out to Dr. Handy.
AnCan  – rick · 7:46 PM
You need either LHRH + a 2nd line anti-androgen (like daro or abi). Don’t take the risk of only the LHRH.
AnCan  – rick · 7:47 PM
CORRECTION…. You need LHRH + a 2nd line anti-androgen (like daro or abi). Don’t take the risk of only the LHRH.
Jim Marshall, Alexandria, VA · 7:57 PM
I would think about Chloesterol testing every 6 months and even though it says 200 or below is good, down in the 160s or lower is better with acceptabh HDL & LDL.    Had no clue until I did 24 stairs.    Jim
Chas Ryan · 8:03 PM
I’m on a statin and I have read that treatment with these ADT drugs can spike your cholesterol or reduce the efficacy of the statins. I will keep an eye on it. Thx
Jim Marshall, Alexandria, VA · 8:05 PM
Do you take it a bedtime?   Liptor & Crestor was no good so I was put on Pravastatin and it kicked butt but too late.
Chas Ryan · 8:07 PM
I take atorvastatin at no particular time whenever during the day I remember to take it.
Hi-Risk/Recurrent/Advanced PCa Video Chat, April 23, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, April 1, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, April 1, 2024

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.

View AnCan’s patient-centered selection of papers and presentations from ASCO GU 2024, one of the top conferences on prostate cancer treatment: • ASCO GU 2024 conference highlights https://www.youtube.com/watch?v=YweU8hjA0Lw&t=2s

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! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/

Join our other free and drop in groups: Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/ Veterans Healthcare Navigation… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/

Editor’s Pick: Androgen Receptor degrader ARV766 arrives ahead of its webinar later this year (rd)

Topics Discussed

Diagnosed at 52 and concerned about recurrence at 61; pulse and bloods back to normal – was it the RT?; Metastatic Directed Therapy is not for everyone; starting AR degrader ARV766 trial; issues arising from RT proctitis and hemorrhoids; military vs civilian medical care; questioning pembrolizumab and its toxicity with TMB of 8.6?; abscopal effect from RT with Keytruda

Chat Log