Hi-Risk/Recurrent/Advanced PCa Video Chat, May 20, 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!
Editors Pick: Should docs prescribe chemo more often? (bn)
Topics Discussed
10 years after prostatectomy, PSMA PET finds a spot near his bladder…cancer or a surgical staple?; is a weight-loss drug like Mounjaro any good for ADT poundage?; unhappy about starting ADT as spot radiation loses effectiveness — but maybe he can wait; should docs be prescribing us chemo sooner and more often?; younger man starting enzalutamide — what to expect?; helpful conference on managing a career during cancer treatment; speaking for himself, chemo hasn’t been so bad; successfully straight-arming a rush to surgery; battling the royal runaround from Kaiser Permanente; early report: estradiol cuts hot flashes; chasing the hot-flash drug for women Veozah if you’re a man; radiation shots to prevent gynecomastia.
Chat Log
eric · 8:23 PM
joe hand his hand up
Jim Marshall, Alexandria, VA · 8:41 PM
Think about if you are reducing your food intake and doing a healther diet,suggest Blood test every 60 days to see if you are deficient in Potassiun, sodium, B12, etc. Jim Marshall
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 14, 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: Metastatic prostate cancer in addition to metastatic melanoma — at age 50 (bn)
Topics Discussed
He’s 76, hasn’t had a PSMA scan, so maybe not so fast with that surgery — plus he’s in bondage to a restrictive insurance plan; guide the surgery/radiation choice with the online MSK nomogram; treatment for his metastatic melanoma revealed metastatic prostate cancer — at age 50; low hemoglobin keeps him from a clinical trial; why’d doc prescribe Lynparza — you should always ask a doc why; bad to worse when he switches to darolutamide; Orgovyx more tolerable than Lupron?; don’t sweat a 0.01 PSA rise; PSA near zero but PSMA scan can still have value — if insurance will pay; doc balks at drug to reduce testosterone flare; women’s libido-boosting drug Vyleesi may also work for men on ADT — Dr. E putting a study together.
I ran Daniel’s nomogram with what info I have. Daniel you should do it.
Julian – Houston · 6:56 PM
https://www.mskcc.org/nomograms/prostate
Mark Thompson · 7:00 PM
Thank you all for having this support group. Unfortunately, I am dealing with sacrum pain and just fatigue this evening. Thank you. Mark Thompson Rehoboth Beach DE.
AnCan – rick · 7:15 PM
Great point, Capt!!!
Michael McCabe · 7:18 PM
so far i prefer firmagon
Matt M · 7:19 PM
Thanks guys, really appreciate the support and advice!
daniel straub · 7:32 PM
John A: This is Dan and your previous chat indicated that I “should do it”… my nomogram indicates 50-80% high grade prostrate cancer. Are you indicating I should do the surgery removal?
AnCan – rick · 7:33 PM
Daniel – please use this link for PROMISE. It is likely to be much quicker than via KP. https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
Talking Estradiol (E2) for Recurrent and Advanced Prostate Cancer: Wassersug et al
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics. Sincere apologies to all for failing to record our May 6 Group. It was totally a platform fault and not down to AnCan. As regulars are aware. this is a very rare event. AnCan hopes this session might make up for it.
Estrogen in its various forms has long been used as a primary and secondary means of managing prostate cancer. Primarily it can be used in place of an LHRH ADT drug. In its secondary capacity, it can be employed in addition to an LHRH drug to help men cope with side effects arising from lack of estrogen caused by the LHRH drug. These side effects include hot flashes and weakening bone density. Today Estradiol (E2) is considered to be a safe treatment when used as a skin patch or gel versus its original application in pill form that carried significant cardiovascular risks.
The foremost peer expert on the use of estrogen to manage prostate cancer is Richard Wassersug, Ph.D, author of Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones that is now in its 3rd Edition https://connect.springerpub.com/content/book/978-0-8261-8403-0. Richard is also an AnCan Advisory Board Member.
In this 60 +minute discussion, Dr. Wassersug talks with two patients about using estradiol. One has used for primary control for 17 years, and the other just started using an Estradiol patch to control side effects alone. He is also joined by AnCan advanced PCa peer Moderators, Dr. John Antonucci and Rick Davis.
Rechallenging advanced disease with enzalutamide after Pluvicto is mentioned towards the end. Dr. Wassersug has since clarified that he favors rechallenging advanced disease with previous therapies after some form of radiation based on the abscopal effect. The use of enzalutamide in this context is not based on trial evidence.
AnCan asks that you first read Richard Wassersug’s book before reaching out to him. AND… Dr. Wassersug urges you to spend as much time exercising today as you have taken to watch this video!
We sincerely apologize, but due to technical issues out of our control with our GoTo meeting platform this meeting did not record. We will be back next week, see you then!
Join us for this ‘ripped from the headlines’ webinar featuring a hot topic in the Active Surveillance community.
When world famous physician-scientist, leader of The Human Genome Project and former NIH Chief, Dr. Francis Collins, suddenly needs treatment for his prostate cancer that has accelerated from indolent to aggressive faster than a Formula 1 racer, many patients and medical professionals ask – whats up?
The NIH/NCI is considered one of the best medical institutions in the world. Did their active surveillance (AS) protocol fail or was Dr. Collins an anomaly? Do patients need to worry? … and is ‘cure’ really a possibility for Dr. Collins?
At short notice, AnCan Foundation, ASPI and The Active Surveillor have gathered together two world-renown urologists who curate their own AS cohorts. Drs. Peter Carroll and Laurie Klotz will discuss their views on the safety of pre-treatment AS for prostate cancer. Howard Wolinsky will moderate the discussion. AnCan’s own AS Support Group Moderators will be speaking after the presentation sharing their own thoughts
Watch here: (closed captioning is provided for this webinar, click the CC button at the bottom next to the gear.)
Special thanks to Bayer, Novartis, Johnson & Johnson, Myriad Genetics, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
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: 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
Jim Marshall, Alexandria, VA
sent: 3:23 PM
If anyone is facing Open Heart Surgery contact me and I can give you somethings the Surgeon might not mention. Jim 703-338-7341
Jim Marshall, Alexandria, VA
sent: 3:30 PM
Janssen also makes a Generic version oof Abiraterone (ZYTIGA). Have taken it as a generic
After being on Eligard + Abi for 5 years, it took 13 months to recover any testosterone after being on the 2 drugs for 5 yrs. a 90-day Eligard shot can last much more than 90 days
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/
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.
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.
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) collaborateevery 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.
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/
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.
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 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/
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
Prednisone raises neutrophils and lowers lymphocytes. Par for the course with taking prednisone. My neutrophils are high and lymphocytes are low. Still on it Been on it for 8 months. When it is stopped the numbers should return to normal
Bob G
sent: 6:28 PM
slow creep is good!
sent: 6:29 PM
Our hearts are with you Dr. Bob
Chas Ryan
sent: 6:33 PM
Thank all of you for sharing this evening. Bob G, good luck with your treatment. I have to depart the meeting. Until next week,…
