Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 2023

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, 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’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: Five of our Regulars wrestle with recurrence this week; and one more is his own best advocate to get a scan(rd)

Topics Discussed

Eminent internist handles Gleason 4+5 diagnosis well; recurrence points to doublet therapy; abiraterone can result in cardio/BP issues; innovative GU med onc addresses lung spots with switching meds before trying RT; Gent finds his own NIH trial to his doc’s chagrin; T. flows back well post Orgovyx; PSMA scan shows oligoMx recurrence – AnCan reassures anxious Gent; with too many lesions, spot RT may yield to chemo; finally feeling better post prednisone; enzalutamide makes another man dizzy; doc agrees on FDG PET for concordance with PSMA but shies away for Payer reasons; neuroendocrine blood markers; Jimmy G remembers Jimmy B. – and Gent shares his Merkel Cell history.

Chat Log

  • AnCan – rick sent · 5:35 PM
    Embr Labs
  • AnCan – rick sent · 6:06 PM
  • Len Sierra sent · 6:19 PM
    Hi Jeff,
  • Gary P sent · 7:05 PM
  • Frank Fabish Columbus OH sent · 7:07 PM
    Thanks guys. Got to go. See you next Tuesday.
  • Geoff sent · 7:17 PM
    Thanks for those private messages to me about being afraid. I can’t seem to reply privately so thanks everyone!
  • Len Sierra sent · 7:18 PM
    According to Dr. Karim Fizazi, Darolutamide was not associated with a higher incidence of seizures, falls, fractures, cognitive disorder, or hypertension than placebo.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 21, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 21, 2023

AnCan is grateful to the following sponsors for making this recording possible:

Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.

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: Giving medical advice vs providing information (as AnCan does)… it’s a delicate balance that one Gent doesn’t want to hear. (rd)

Topics Discussed

docetaxel + Pluvicto trial; PALB2 actionable; spot RT to L4; need a GU med onc NOT uro at SF-VA; FDG scan largely confirms PSMA; coming off prednisone; ACTH test; KP Maui gent needs Dr. Harzstark for IHT discussion; soursop/graviola may help but talk to HCP; post Pluvicto, check concordance; using metformin; blood counts; healthy prostate tissue may muddy the waters; 7 years on abi carries risk of morphing – but Gent doesn’t want to her that; time for IHT??; PSA testing frequency Chat Log

Chat Log

Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 17, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 17, 2023

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

NOTE: August Schedule Change for Tuesday meetings only – Tuesday, Aug 1 and 15

UPCOMING WEBINAR: What’s Inside the Black Box? -How & Why PCa Genomic Tests Work Register at https://tinyurl.com/ancanpcagenwebinar

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… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/

Editor’s Pick: Worth waiting until the end to hear our sonorous tones on the Eastern Front relate liver marker issues during Pluvicto… but maybe down to gabapentin?? (rd)

Topics Discussed

New sponsor Blue Earth and Posluma; younger man (55) reports successful treatment; denovo Mx gent needs GU med onc; drug financial subsidies help- one of our gents; hypertension and abiraterone; neurological symptoms; lodging suggestions during treatment; cancer returns to prostate bed; 2nd series of Pluvicto treatments; what to do when PSA makes tiny move off insignificant; ALT & AST swing during Pluvicto – could it be an unrelated drug?; gabapentin issues

Chat Log

AnCan – rick sent · 5:34 PM Dr. Andrea Harzstark

AnCan – rick sent · 5:38 PM rd@ancan.org

Jim Marshall, Alexandria, VA sent · 5:59 PM Zytiga is also called Abiraterone It is generic.

Jim Marshall, Alexandria, VA sent · 6:03 PM Genitourinary Medical Oncologist

AnCan – rick sent · 6:13 PM Elisabeth Heath MD https://www.karmanos.org/karmanos/karmanos-physician-directory/heath-elisabeth-8225

AnCan – rick sent · 6:14 PM Karmanos

Rich Jackson sent · 6:19 PM Zytiga is also called Abiraterone It is generic.

Julian – Houston sent · 6:24 PM https://ancan.org/

sent · 6:29 PM No I am not a veteran.

Julian – Houston sent · 6:30 PM Dr. E is awesome!!!

AnCan – rick sent · 6:39 PM Who in Houston would talk to me about where to stay when going to MD Anderson. Can you say?

Matt Krieger sent · 6:41 PM What is pluvecto (spelling?)?

Peter Kafka – Maui sent · 6:41 PM Most centers have a sheet with places to stay that work with the hospital. Call your doc’s receptionist

AnCan – rick sent · 6:42 PM Pluvicto

Joe Gallo – Bucks Cty PA sent · 6:45 PM One of our AS moderators Hugh Idstein is a Houston resident if you want any help beyond the hospital list.

Richard Tolbert sent · 6:47 PM I live in the Houston area and can provide some hotel options near M.D. Anderson. (contact rd@ancan.org for Richard’s email)

AnCan – rick sent · 6:48 PM Another question to me from John Babb: As a disabled veteran which base or post would the best to try for housing while I am at MD Anderson?

Matt Krieger sent · 6:49 PM I nap every day at 55 if I can find a way!!

Don Needham – Bend, Or sent · 6:50 PM I nap every day after my walk and weights.

Julian – Houston sent · 6:50 PM Naps are good – I try to take one every mid-afternoon.

Matt Krieger sent · 6:58 PM It seems like everyone here is having PSA tests that have a sensitivity down to like .01, whereas the Kaiser tests I get just say ‘less than .06’ if it’s below that level. Should I be pushing for a more sensitive test, does that have value?

Peter Kafka – Maui sent · 7:00 PM You can try asking Kaiser about ultra sensitive PSA testing. But usually they only use it for guys who have had a prostatectomy as primary rather than radiation,

AnCan – rick sent · 7:01 PM Matt – My suggestion would be not to worry. You still have a prostate. I agree with Peter – not needed if you have a prostate.

Matt Krieger sent · 7:01 PM Got it, makes sense and thanks much —

Jim Marshall, Alexandria, VA sent · 7:02 PM Am using Kaiser and I get the Ultra-Sensitive every month for last year Mid Atlantic Kaiser

Frank Fabish Columbus OH sent · 7:06 PM Got to guys. Thanks guys. Stay strong.

Richard Tolbert sent · 7:07 PM Thanks everyone. Have a great week!

Matt Krieger sent · 7:12 PM I heard it too

Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 11, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 11, 2023

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

NOTE: August Schedule Change for Tuesday meeting only – Tuesday, Aug 1 and 15

UPCOMING WEBINAR: What’s Inside the Black Box? -How & Why PCa Genomic Tests Work    Register at https://tinyurl.com/ancanpcagenwebinar

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… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/

Editor’s Pick: Abiraterone can have significant cardio comorbidities (rd)

Topics discussed

Immediate recurrence following RP; older Gent seeks GU med onc after 12 years; PSA fluctuates during Pluvicto; no more Pluvicto problems – maybe thanks to AnCan!; GU med onc in Toronto – but is it needed?; abi +meddling with dosage may have lead to heart issues; older Gent continue Pluvicto; HT therapy does what it should – to the concern of this physician patient; doc raises darolutamide monotherapy; upcoming webinar and August calendar change

Chat Log

Neil Brandom sent · 3:23 PM Note to self : GU Medical oncologist  Mathew Rettic UCLA Rana McKay UCSD

AnCan – rick sent · 4:12 PM Michael Ong  http://www.med.uottawa.ca/internalmedicine/medical%20oncology/eng/MichaelOng.html

AnCan – rick sent · 4:19 PM Neil Fleshner https://www.uhn.ca/PatientsFamilies/Search_Doctors/Pages/doctor_detail.aspx?doctor=366

Len Sierra sent · 4:59 PM Jack et al., This is why you want to take darolutamide even with a low T level: Nubeqa (darolutamide) is an androgen receptor inhibitor. Darolutamide competitively inhibits androgen binding, AR nuclear translocation, and AR-mediated transcription

Alan Babcock sent · 5:02 PM That makes my wife happy. bye

Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 27, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 27, 2022

Our only Fundraising Campaign of the year is winding up. All on the AnCan email distribution have been sent a request letter, which includes AnCan highlights from 2022. We ask you to consider a donation based on the support you’ve gotten from these recordings. Read our letter at https://us14.admin.mailchimp.com/campaigns/show?id=7976018

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://www.gotomeet.me/AnswerCancer
Veterans Healthcare … 4th Thursday @ 8.00 pm Eastern https://www.gotomeet.me/AnswerCancer

Editor’s pick: Unintended consequence of radiation therapy — subsequent surgeries become risky. Plus: research into mushrooms — and a fanatic who had one of us chickening out and turning tail.

Topics Discussed

Patient who got radiation now needs organ repair after a damaging kidney stone treatment — but surgeon is pessimistic because of scarring, plus a bladder growth is discovered; kidney stone sufferers feel the pain; too many mushrooms — and do they even work?; turkey tail fanatic holds Dr. A hostage; hot-flash sufferer turns successfully to acupuncture; bowel problems after radiation; Gleason 9 with PSA of 1; beware colonoscopy if there’s bowel problems; old prostatectomy and new PSA rise; how high a PSA before salvage?; types of lung biopsy; cloak of secrecy getting yanked after he tells pharma reps of side effects; doc explains ADT duration for salvage; cancer patients OK with Medicare Advantage?; paying back to AnCan. (bn)

Chat Log

John A · 6:25 PM 75% are calcium

AnCan- rick · 6:31 PM Turkey Tail article …. Abrams http://www.cancernetwork.com/articles/expert-panel-reviews-strategies-nutrition-and-cancer-care

AnCan- rick · 6:33 PM Dr. E recording …. https://ancan.org/dr-e-on-the-patient-voice-and-thinking-outside-the-pill/

AnCan- rick · 6:37 PM White buttom mushies and PCa. http://prostatecancerinfolink.net/2015/10/01/
white-button-mushroom-powder-and-recurrent-prostate-cancer/#comment-165416
AnCan- rick · 6:43 PM Recent (2012) Developments in Mushroom Therapy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3339609/

AnCan- rick · 6:49 PM FDA approves turkey tail for certain cancer patients http://www.bastyr.edu/news/general-news/2012/11/
fda-approves-bastyr-turkey-tail-trial-cancer-patients
· 6:51 PM Host Defense Mushrooms. My Community: Comprehensive Immune Support. Buy on Amazon 120 Capsules

AnCan- rick · 6:53 PM FDA approves turkey tail for certain cancer patients … BAD LINK

Julian – Houston · 6:54 PM try this link https://bastyr.edu/about/news/fda-approves-bastyr-turkey-tail-trial-cancer-patients

AnCan- rick · 6:55 PM Tx Julian – mine should have read turkey tail trial !!!!

AnCan- rick · 7:22 PM Frank Fabish had the procedure Dr. Jack is discussing

Alan Babcock · 7:48 PM I am unable to raise my hand.

Pat Martin · 8:01 PM Have to run