Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023

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

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.

Apologies to all who attended live last night! GoTo issued a massive update over the weekend and did not advise their customers. Some folks couldn’t even open their rooms – in our case we lost video. Citrix support was less than honest, causing even more grief. As you saw we had to shut down the room and restart after they reset our settings. It put me in a very grumpy mood … :-(( – apologies if I offended anyone!

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: I could go for the very end with ice cream and Capt Joe’s tips on koi – BUT how about somatic testing?! It’s so important, many docs don’t test, and when they do, forget to repeat!

Topics Discussed

Dx at a young 80, denovo Nx; time to switch from the VA?; Gents wants to add abi but doc reluctant; chemo fails – nothing sticks… what next but somatic testing!; multiple treatment modes at one time;…and another without answers who needs testing and a GU med onc; retention issues from RT damage – back to rad onc; our foamy gland guy holds steady; switching to Metformin for diabetes … and cutting out the ice cream!; all you ever wanted to know about keeping koi!

Chat Log

rd sent · 5:31 PM DELMARVA gents… organize a lunch!!!

rd sent · 5:48 PM somatic testing

Julian – Houston sent · 6:31 PM good evening everyone – see you next week! Thanks!!!

TonyFig sent · 6:53 PM https://www.urmc.rochester.edu/people/31825023-peter-van-veldhuizen

Peter sent · 7:09 PM Good night gents!

Steve Schuler sent · 7:22 PM Thanks folks, have to go

Mike Yancey – Oklahoma sent · 7:26 PM Great Meeting. Early morning of more treatments. Gotta drop

Chip & Jane sent · 7:29 PM G’Nite Gents. THANK YOU! Seems I found a ” home” here . Much appreciated.

Frank Fabish Columbus OH sent · 7:37 PM I’m off. Thanks guys.

Jack G. sent · 7:37 PM Good night and thanks. See you next week. Jack G.

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 23, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 23, 2023

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix

AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://ancan.org/herbert-herb-miles-geller-phd-1945-2023/ 

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: Handcuffed by HMO, making the best of it. (bn)

Topics Discussed

Memory issues, but HMO won’t allow him darolutamide — try monotherapy abi?; tumors block TURP surgery, hoping ADT will ease surgeon’s job; AnCan pushes for better Orgovyx pricing; acupuncture and hot flashes; abi first, then enzalutamide — not the reverse; doing well on daro doublet after chemo; Orgovyx probably won’t thin the fog; mulling DEXA scan report; daro monotherapy addresses heart issue; filling the need for exercise with an e-bike; how much vitamin D?; grateful after switching to a GU oncologist; keep alert to side effects in Xgeva and Prolia; AnCan’s prostate cancer forum is back (https://ancan.org/forums); Embr Wave outdoors; landing an appointment with Oliver Sartor.

Chat Log

Harry Spila · 7:58 PM gotta go, take care everyone
AnCan – rick · 7:59 PM Happy riding!
Harry Spila · 8:00 PM 🚴
Mike Yancey – Oklahoma · 8:06 PM Gotta run
julian – houston · 8:06 PM great conversation, as always. Enjoy your Memorial Weekend!

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 15, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 15, 2023

AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix

AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…

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: Controversial Death with Dignity discussion starts – and Keytruda shows up more than once at the back end … after passing Dude Wipes along the way! (rd)

Topics Discussed

Talking ‘Death with Dignity’ with AnCan Advocate; urologist refuses Provenge – get a GU med onc!; pros & cons of treating the primary; timing of RT; handling multiple QBs; Bx find no NEC; salvage RT commenced; clean up with Dude Wipes; brain fog/short term memory loss – drug and non-drug remedies; Flomax and brain fog; some Gents take just 2.5mg/daily prednisone with abi; Eligard & ukuleles; another Gent looks to pembro/Keytruda; proteomics; wean off Prolia; pembro vs chemo decision

Chat Log

Ben Nathanson sent · 5:14 PM As the End Nears: Dying with Metastatic Cancer https://join.compassionandchoices.org/a/end-nears-dying-metastatic-cancer Compassion & Choices https://www.compassionandchoices.org   States where medical aid in dying is authorized, and dates when it took effect: Oregon 10/27/1997 Washington 3/5/2009 Montana 12/31/2009 Vermont 5/20/2013 California 6/9/2016 Colorado 12/16/2016 Washington, D.C. 2/18/2017 Hawai‘i 1/1/2019 New Jersey 8/1/2019 Maine 9/19/2019 New Mexico 6/20/2021

Joe Comanda (Philadelphia) sent · 5:21 PM I don’t want to cause trouble, but I am troubled by the advocacy of Compassionate Choices, formerly the Hemlock Society. I would hope that men would not take that way out.

Len Sierra sent · 5:23 PM Everyone has to make that decision for themselves. No one else should make it for them.

rd sent · 5:24 PM We think it’ s each person to his own… AnCan believes everyone has a choice, Joe.

Jim B sent · 5:36 PM Hi Bob, I just had a Pluvicto treatment this morning. No side effects so far but I’m sure that dry mouth, nausea and slight fatigue will continue. How is your WBC coming along?

Joe Gallo sent · 5:47 PM Genito Urinary (GU) Oncologist Dr. Eleni Efstathiou

John Madden & Meiying Hu (May) – Houston TX sent · 5:49 PM https://www.houstonmethodist.org/doctor/eleni-efstathiou/

sent · 5:49 PM Eleni Efstathiou, MD, PhD Genitourinary Medical Oncology, Medical Oncology

John Madden & Meiying Hu (May) – Houston TX sent · 6:15 PM Open/Ongoing: https://www.swog.org/clinical-trials/s1802

John A sent · 6:15 PM https://reference.medscape.com/medline/abstract/31082943?icd=login_success_email_match_norm

Henry sent · 6:15 PM https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9173627/

John A sent · 6:15 PM kinda old

sent · 6:15 PM https://www.pcf.org/c/more-evidence-for-benefits-of-radiation-therapy-in-metastatic-prostate-cancer/?utm_source=NewsPulse&utm_medium=email&utm_campaign=SEPT22NP

sent · 6:16 PM http://www.stampedetrial.org/participants/about-stampede

Henry sent · 6:19 PM https://www.sciencedirect.com/science/article/pii/S1047279723000042

Peter K sent · 6:37 PM I have had 3 med oncs for over a year now. 2 up to a year ago. They are all valuable and I keep them all informed and they all have vaulable input

rd sent · 6:38 PM MDA – maybe the best cancer hospital … but not the best prostate cancer hospital

Peter K sent · 6:42 PM They are doing MRidian SBRT with View Rayt in Michigan- low toxicity in trials

Henry sent · 6:56 PM https://dudeproducts.com/

John Madden & Meiying Hu (May) – Houston TX sent · 6:59 PM Lions Mane: https://www.amazon.com/dp/B09FD8C16B?psc=1&ref=ppx_yo2ov_dt_b_product_details

Frank Fabish Columbus OH sent · 7:04 PM Got to go guys. See you next week.

Jack sent · 7:05 PM Have to go. See you next time.

Bob G sent · 7:09 PM https://pubmed.ncbi.nlm.nih.gov/29971698/

Pat Martin sent · 7:15 PM I appreciate all you. You are great source of strength an encouragement. see you next Tuesday

Bob G sent · 7:23 PM Info on stopping Xgeva: https://www.myeloma.org/videos/it-safe-stop-xgeva-denosumab

sent · 7:32 PM Time to go. Thank you for the Good information.

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 1, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 1, 2023 

AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix

AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…

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: Stay alert for morphing if your PCa acts weird – and great ACS tip if you need a hotel for medical reasons.(rd)

Topics Discussed

Diagnosed 4+5 in 2009 and still going strong; probably ain’t the abi – gotta exercise !; urinary retention; holding steadyl ; snady mouth and Sjogrens could come from Keytruda; Neulasta side effects; watch for small cell and adjust treatment; lung nodule could just be liquid; 97% continent 9 mo after surgery; seeking a Center of Excellence for RT proved wise; ACS can help with hotels; HT shrinks lesions

Chat Log

  • eric sent · 6:23 PM Have to go, but wanted to check in. I doing well excersing everyday and coaching soccer now. I would just say to the group meditate and be active and live while you do it. Talk to you guys soon
  • AnCan- rick sent · 6:24 PMTx   Eric – try to get by 10 minutes aftr we start so we can check in with you
  • Julian – Houston sent · 6:24 PM
  • Chick sent · 6:28 PM
    Peter, thanks for this info, and hope the dry mouth will improve.
  • Joe sent · 6:30 PM
    a little dex never hurt a day
  • Michael Wyn, Colorado Springs sent · 6:35 PM
    Thank you everyone. Have to leave.
  • Joe sent · 6:49 PM
  • Bob G sent · 6:51 PM
    Got to go. Thanks and have a good night.
  • Joe sent · 7:02 PM
    Robert, where are you in CO?
  • Frank Fabish Columbus OH sent · 7:08 PM
    got to go guys. See you next week.
  • Joel Blanchette Reston, VA sent · 7:09 PM
    Very good info. I stayed at Extended Stay America a couple of weeks agp and it cost me $200.00 for one night. When I go back I will ask for the discount. Thank you again for the info.
  • TonyFig sent · 7:12 PM
    Many of the cancer treatment centers have social workers. If you contact the social workers, they usually have arrangements with local hotels for free rooms or discounts, plus gas cards.
  • Robert Glover (Colorado) sent · 7:12 PM
    (contact rd@ancan.org) for Rob Glover’s email re. info on America Cancer society hotel reservation info.
  • Pat Martin sent · 7:12 PM
    Thanks again for the great help
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 25, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 25, 2023

AnCan is grateful to the following sponsors for making this recording posssible:
Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix

AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-herbert-geller?e=838454d636

WEBINAR RECORDING: What is a Pelvic Floor Physical Therapist – & why you need one
https://ancan.org/webinar-what-is-a-p…

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: After surgery, 15% of prostate beds are…what, exactly? (bn)

Topics Discussed

Is PSA uptick to 0.155 ripe for PSMA PET?; Keytruda patience paying off; the sweat is real as he sweats out a decision on longer ADT; bad liver enzymes on Pluvicto plus apalutamide — whodunit?; invisible on PSMA PET, he’s starting darolutamide and hoping for the best; how loved ones benefit from your germline test; doubting and defending murky claim that “15% of recurrence is in prostate bed”; PSA uptick is tiny but he hopes to be proactive; docs disagree on more radiation after PSA rise; getting genetic testing in Canada.

Chat Log

AnCan- rick · 6:38 PM Dr. Channing Paller https://www.hopkinsmedicine.org/profiles/details/channing-paller

AnCan- rick · 6:42 PM AnCan’s link for Promise https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar

Erwin Zoch · 7:17 PM I’m not sure if this is applicable to the question re. recurrence in the prostate bed, but my recurrence is currently confined to the prostate gland per PSMA PET and MRI scans.

Erwin Zoch · 7:22 PM Thanks for the info. I have to leave for an appointment.

Stan Friedman· 7:42 PM Good night, everyone. It’s my birthday today and have a dinner date with my wife.

AnCan- rick · 7:47 PM Mark – here’s Schweizer’s presentation https://ancan.org/special-presentation-meds-a-potential-new-path-to-keep-men-on-as/

Mark Baldridge (Seattle area) · 7:48 PM Thank You

AnCan- rick · 8:00 PM Dr. Vapiwala https://www.med.upenn.edu/apps/faculty/index.php/g333/p2009716

Henry · 8:02 PM Regarding Allen C., did I hear correctly that a biopsy is expected? If so, could a genomic analysis drive tx decisions?

AnCan- rick · 8:03 PM Zelefsky http://www.mskcc.org/cancer-care/doctor/michael-zelefsky

AnCan- rick · 8:17 PM https://www.foundationmedicine.ca/

AnCan- rick · 8:19 PM 888-650-4835

Julian – Houston · 8:20 PM Thanks for the discussion.