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

AnCan Friends Art Class – April Edition!

Hello friends! In case you missed April’s AnCan Friends Art Class, we wanted to share the recording with our amazing community. This project uses both crayons and watercolors for a crayon wax resist effect! Check it out below:

 

 

You’ll need crayons, watercolors, mixed media paper or watercolor paper, and either a round brush or a flat brush. I happened to use a size # 8 round brush.

In case you’re having trouble figuring out what colors to use, you’ll see a few different examples of paintings I’ve done in the past. Mostly I just had fun experimenting with the colors, and I hope you can do the same, too! We’re always so proud of the work that comes out of this class. Happy painting!!!

If you’d like to see past artworks from past art classes, check out the gallery here

Hannah,

AnCan Art Class Instructor

 

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

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

Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 11, 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: We are all devastated aboout Herb GRHS – it didn’t have to be this way!

Topics Discussed

Remembering Herbie; another octogenarian with mystery mets; man with a 7.5 Gleason(???) does well on recurrence; community oncologist provides sub-standard care; capaversitib trial failing – sequencing needed; chemo drops nadir – and more sequencing needed; is 8 months ADT enough for early salvage RT?; PSA drops and tumors shrink except for the new one!; Next Generation Somatic Sequencing IS available if your doc says so; monotherapy darolutamide does the trick; exercise + anxietyDr. S accepts our man and orders HT; PROMISE is the path of least resistance.

Chat Log

CF sent · 5:19 PM We will miss him.

rd sent · 5:20 PM Thank you for observing the silence. Herb details …. Hope you can open this …. https://mailchi.mp/ancan/remembering-herbert-geller?e=[UNIQID]

AnCan- rick sent · 5:23 PM Sponsors Bayer, Pfizer, Janssen, Myovant, Myriad, Telix, Foundation Medicine

sent · 5:36 PM What was Gleason after surgery?

Vic St. Louis, MO sent · 6:15 PM triplet therapy?????

Len Sierra sent · 6:16 PM Good call, Vic. He fits the profile for triplet therapy.

Vic St. Louis, MO sent · 6:17 PM since may 2021!!!

Larry Fish sent · 6:17 PM What kind of scans? Sounds like he may have lit up like a Christmas tree. Then there was probably something to biopsy- eg hip

Vic St. Louis, MO sent · 6:18 PM 10-4

Bob G sent · 6:22 PM Goodnight all. Thanks.

sent · 6:33 PM My name is MarkK and I just joined today. I am stage 4 to the bone and want someone like me to talk to This chat barely works so try spartybbmark@yahoo.com

sent · 6:38 PM Mark Cuban’s discount drug site sells Abbie for $145 for 120 pills. https://Costplusdrugs.com

Pat Martin sent · 6:39 PM I appreciate your input. Going to log off and get this shoe out of my butt that Rick put there See all next Tuesday

Julian – Houston sent · 6:44 PM Thanks everyone! Good discussion as always! Have a good evening.

AnCan- rick sent · 6:56 PM Allen Edel https://pcnrv.blogspot.com/

Len Sierra sent · 6:58 PM Tony, at the site Rick sent you, look for this discussion titled: “Duration of ADT needed with salvage radiation” from Feb 2023

AnCan- rick sent · 7:29 PM Patient Assistance Foundation

AnCan- rick sent · 7:31 PM PROMISE Trial https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar

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

Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 28, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 28, 2023

 

UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one
Wed, 3/39 8pm Eastern
Dr. Rachel Rubin + Pelvic PT Tracy Sher
Register https://tinyurl.com/4sdhzucf

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

Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix

IF YOU HAVE NOT YET WRITTEN TO THE FDA ABOUT THE PLUVICTO SHORTAGE – PLEASE DO.
DIDN’T RECEIVE OUR REQUEST … LMK rd@ancan.org

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: Genetic test detects a rare mutation — with a treatment — showing the value of somatic testing. (bn)

Topics Discussed

AnCan’s proposals on the Pluvicto shortage get the FDA’s ear; new man hopes for support as salvage winds up; ultrasensitive PSA creeping up — time to worry?; PSA kicks down after darolutamide; is abi “shortage” real?; treading carefully before radiotherapy due to colitis; PSA rising despite Pluvicto — are some metastases non-avid?; PSA OK after run-in with Covid; atrial fibrillation complicates his treatment choices; what’s the story with BAT?; genetic test turns up BRAF mutation, rare in prostate cancer; update on Herb.

Chat Log

AnCan- rick · 6:09 PM WEBINAR tomorrow night …. What’s a Pelvic Floor Therapist …and why you need one! REGISTER HERE https://tinyurl.com/4sdhzucf

Julian – Houston · 6:08 PM I am registered!

Len Sierra · 6:15 PM CDER =Center for Drug Evaluation and Research

AnCan- rick · 6:22 PM WEBINAR tomorrow night …. What’s a Pelvic Floor Therapist …and why you need one! REGISTER HERE https://tinyurl.com/4sdhzucf

AnCan- rick · 6:37 PM Dr. Jaqueline Vuky OHSU https://www.ohsu.edu/providers/jacqueline-vuky-md

David Muslin · 6:39 PM The following are GU Med Ons at OHSU

David Muslin · 6:39 PM Jacqueline Vuky, M.D. Associate Professor of Medicine, School of Medicine ExpertiseCancerCancer and Blood Disorders Special focusBladder
CancerBlood DiseasesBreast CancerColorectal CancerGenitourinary CancersKidney CancerProstate CancerTestis Cancer
David Muslin · 6:40 PM To schedule call 503-346-1500

AnCan- rick · 7:27 PM bicalutamide

John A · 7:35 PM SNMMI just came out with GU guidelines in January–does anyone know what they said about concordance checking?

AnCan- rick · 7:41 PM Life on ADT …. Richard W’s website

AnCan- rick · 7:42 PM https://www.lifeonadt.com/

AnCan- rick · 7:54 PM Here’s the BAT paper …. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9313844/

Kirt Schaper · 7:57 PM Dabrafdnib

John A · 7:58 PM dabrafenib

David Muslin · 8:07 PM I have to roll guys. See you next week.

Frank Fabish Columbus OH · 8:08 PM see you guys

Julian – Houston · 8:08 PM see you guys next week!