Hi-Risk/Recurrent/Advanced PCa Video Chat, May 28, 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: Buzz (and cautions) on oxybutynin for hot flashes (bn)
Topics discussed
Diagnosed de novo and now crossing into hormone resistance — it’s time to update somatic tests and PSMA before new treatment; pancreatic cancer, multiple myeloma, and now a PSA uptick – but our low/intermediate group might be a better fit; his diagnosis mirrors Rick’s from 2007, as does his treatment plan — he may have Rick’s great outcome, too; don’t let weight gain get a head start on ADT; MSK’s “not so fast” disrupts treatment plan and angers his local radoc; what’s it like getting spot radiation?; surprised to hear Dr. E recommend whole-body MRI; hyperbaric oxygen for his prostatitis — what’s the cataract risk?; urine flow getting worse — suspect radiation-induced strictures; ignoring urination problems risks kidney complication; strictures have him self-catheterizing daily; hot flashes with a vengeance on Orgovyx as drug holiday ends; buzz over oxybutynin for hot flashes — but beware contraindications (including the lutamides!) and side effects; ADT fatigue mounting as the months roll on — only solution is to be strong-willed and exercise anyway; a bit of renewed discussion of the Embr Wave hot flash device; don’t overlook depression as a factor in ADT fatigue; probiotics might help mood — check your blood, too.
Chat Log
John A · 8:20 PM
odd Yezefski, patients like him, Tufts medical school, u of Washington fellowship and residency, specializes in GU
Mark Perloe, Sherman Oaks, CA · 8:48 PM
I don’t have the link, but I found a series of exercise videos on YouTube created by Hutch. They had a few that utilized bands are were quite easy to but into my regimen. I also got Peloton.
Mark Perloe, Sherman Oaks, CA · 9:22 PM
No, I’m pretty tied in to UCLA. Dr. Kishan is a leader in radiation and if planning RT, they have MRIdian SBRT. I would not advise anyone to seriously consider surgery. My bias, but I’ve spent the last three years online hearing about people with complications.
Wang Gao Shan – PANAMA · 9:25 PM
ASCO
Cheap Drug Eases Hot Flashes in Men With Prostate Cancer
— Anticholinergic oxybutynin for patients taking ADT also improved quality of life in the process
Mark Perloe, Sherman Oaks, CA · 9:25 PM
Darn 405 though.
Mark Perloe, Sherman Oaks, CA · 9:28 PM
I think MRIdian is the safest SBRT and the entire team is very experienced just doing prostates.
Mark Perloe, Sherman Oaks, CA · 9:29 PM
If you go to YouTube and search SBRT Kishan, there are numerous lectures he has recorded.
Mark Perloe, Sherman Oaks, CA · 9:31 PM
I would only go to a radiation oncologist who solely does prostate, bladder and kidney.
Frank Fabish Columbus OH · 9:35 PM
Thanks for the discussions guys. See you Tuesday.
Alan Babcock · 9:36 PM
I have to leave early
Joe Comanda (Philadelphia) · 9:40 PM
Need to leave right now. I’ll ask my question another time.
AnCan – rick · 9:40 PM
Did you ask for time??
Steve Schuler · 9:43 PM
F150 or smart car?
Adam · 9:48 PM
Gotta hit the rack guys. Thank you for the informed discussion. Remember, ANYTHING IS POSSIBLE!
Peter · 9:50 PM
Goodnight all!
Matt – Sac · 9:58 PM
Goodnight all, great info as always. Be well!
AnCan – rick · 10:08 PM
Embr Wave
AnCan – rick · 10:09 PM
From Len
AnCan – rick · 10:09 PM
https://embrlabs.com/products/embr-wave-2
Steve Schuler · 10:15 PM
Thought I’d mention, the estradiol has helped my hot flashes, with fatigue, and also my “dizziness”, which is not really dizziness but this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5732995/
Steve Schuler · 10:17 PM
Benign Paroxysmal Positional Vertigo
Norm Pollock · 10:18 PM
Life Extension: Mood Improve and L-Theanine XR. Heard a doc talking about the probiotic who said they were using it for Bipolar
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 28, 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: Hot takes on hot flashes; many thoughts on healthy eating. (bn)
Topics discussed
Mysterious hormone issue means he needs to take hydrocortisone on top of his Lupron — any problem?; off ADT, but hot flashes linger; Veozah might help, if you can get it — Dr. E is looking into a trial; tofu and ground flax tame his hot flashes; and then there’s estradiol — see our webinar with Richard Wassersug; disappointed by doc’s change of heart on a drug holiday — and her prediction that his testosterone will never exceed 100; holding off on prostatectomy while he amasses data; how to stay away from unhealthy “ultraprocessed” food; there isn’t just one healthy diet — it depends on what you need; more thoughts on a paper that appears to advocate wider chemo use; despite stellar author lists, some papers are the work of a hired medical writer; he’s on the borderline of chemo eligibility and not eager to cross over.
Chat Log
[Waiting for name] · 6:17 PM
camera won’t work now. going to try leaving and coming back
Dr. Jeff · 6:30 PM
fezolinetant
AnCan – rick · 6:32 PM
Veozah is commercial name
Jerry Grimes, Brighton, MI · 6:38 PM
low dose estradiol patches can also help reduce hot flashes, but that’s usually in the setting of very low, to no, testosterone. 0.025 to 0.05 mg/day patches. Look up Dr . Wassersug for more.
Unknown · 6:40 PM
Soy Isoflavones by Life Extension
THOMAS Matica · 6:44 PM
Sage tea (and others) for hot flashes from the Canadian College of Naturopathic Medicine https://ccnmicc.ca/hot-flash-support-prostate-cancer It does have some side effects, so do your research. Thomas
Julian – Houston · 7:03 PM
https://www.mskcc.org/nomograms/prostate
AnCan – rick · 7:04 PM
Tx Julian – you beat me to it.
Dr. Jeff · 7:15 PM
Yuka – Food & Cosmetic Scanner 4+
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Richard Fiske · 7:17 PM
Thanks.
Unknown · 7:22 PM
Hack Your Health: The Secrets of Your Gut is a great Netflix documentary
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
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.
