Editor’s Pick:Whether the word’s concordant or congruent, if your PSMA and CT scans don’t match up, talk carefully with your Provider if you’re a good candidate for Pluvicto! (rd)
Topics Discussed
Make sure your PSMA and Full CT scans are concordant .. or is it congruent??; new lesions appear in Pluvicto follow-up scans; is BAT an option to follow Pluvicto?; when best to start Tx on recurrence; starrting IHT; liver cyst shows up on an Axumin scan; tear duct issues from chemo; Pluvicto availability; does ADT control DHT – dihyydrotesterone?
Chat Log
Jim Marshall, Melbourne, FL to Everyone 06:28 PM Concordance – Agreement or consistency
Bob G to Everyone 06:42 PM Took about 11 days before I felt back to normal. Easier how? So, I’m done (for now) with chemo. I retry abiraterone at 1/2 dose in another 10 days & will see. Scans in early Dec & then see Dr.
Jim Marshall, Melbourne, FL to Everyone 07:19 PM For you Florida guys, you can track and predict storms, hurricanes, etc with the Ventusky weather model out of the Czech Republic at. www.ventusky.com you Gulf states can use it too along with East & West Coast. It predicts weather all over the world.
Ben Nathanson to Organizer(s) only 07:31 PM mary-ellen taplin?
george rovder arlington virginia to Everyone 07:50 PM Thank you all. Good Night.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 1, 2022
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/
Editor’s Pick: Chemo robs him of breath — but he’s determined to work through his bucket list. (bn)
Topics Discussed
PSA of 3.1 to drops to 1.5 after darolutamide; who gets darolutamide for free?; on chemo and struggling to breathe; how often should I request sequencing?; why can’t my tumor be spot-radiated?; get sequencing on a rare testicular metastasis; PSMA PET at 0.2?; establishing formal qualifications for PSMA PET interpretation; another report of major fatigue on darolutamide — but maybe it’s a drug interaction; expat’s sticker shock at U.S. drug pricing; radiation fatigue can’t stop his climbing trip; break for a little toilet humor; interpreting a p53 mutation; a pharmacy offering lower-cost drugs; is bone biopsy as painful as they say?
Chat Log
David Muslin 6:40 PM Cancer genome sequencing is the whole genome sequencing of a single, homogeneous or heterogeneous group of cancer cells. It is a biochemical laboratory method for the characterization and identification of the DNA or RNA sequences of cancer cell(s).
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 25, 2022
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 AnCan Barniskis Room Veterans Healthcare … 4th Thursday @ 8.00 pm Eastern AnCan Barniskis Room
Editor’s Pick: We hear evidence Pluvicto may be shortlived. And before you start it, be sure all your lesions express PSMA! … and higher levels of corticosteroids may reduce PSA – who knew?(rd)
Topics Discussed
How durable is Pluvicto? concordance required for Pluvicto success; incontinence during salvage radiation; are PSMA scans viable at 0.2 PSMA; Medicare covers DEXA scans; Dr. A confirms Kwon treatment – and orders NGS; extened use of prednisone may cause cataracts … or is it aging?; and that same pred may reduce your PSA!; oral pain issues from chemo.
Chat Log
Carl Forman to Everyone 03:21 PM Dr Kwon posted a video 2 weeks ago, thru PCRI, titled PSMA and LU177 in 2022 https://www.youtube.com/watch?v=bwUJJP614f8 May have useful info.
Len Sierra to Everyone 04:03 PM NCCN = National Comprehensive Cancer Network
rd to Everyone 04:26 PM From Bob McHugh …. ‘What does “avid” mean?’
Len Sierra to Everyone 04:27 PM Active lesion (Ed: Lesion expressing PSMA)
TonyFig to rd 05:07 PM I started 30 day Firmagon two weeks ago. Dr. VanV ordered monthly blood/testosterone/PSA 3 days prior to each injection. No side effects this far with Firmagon. Wondering if I should stay with Firmagon monthly or switch to Lupron. Thinking of staying with Firmagon since no adverse reactions at this time. Alan Babcock to Everyone 05:10 PM I have to go. Thanks for your help.
rd to TonyFig 05:11 PM Benefit of Lupron is that you can get a 3 or 4 month shot rather than monthly. Also some folks don’t like the belly shot.
Peter Kafka – MN to Everyone 05:13 PM Good night guys, Keep fighting the fight.
Jim Marshall, Alexandria, VA to Everyone 05:19 PM Here is the writelup I found Prednisone: It has been shown taking 10mg a day, can decrease the PSA result by more than 50% in many patients with hormone-refractory progressive Prostate Cancer. “In patients with serum testosterone castrate levels (less than 20ng/ml), hormone-refractory prostate cancer is defined as 2-3 consecutive rises in prostate-specific antigen (PSA) levels 12 obtained at intervals of greater than 2 weeks and/or documented disease progression based on findings from CT scan and/or bone scan, bone pain, or obstructive voiding symptoms.” So, getting this straight, if one does not have Prostate Cancer, then prednisone has no effect. But if Prostate Cancer is present, then the PSA test result is one half of its normal value. (Ed: not necessarily – PSA may also be half in all men taking pred, but they didn’t look at that!)
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!
Our special October guest was fabulous Kelle Jolly!
Kelle, “The Tennessee Ukulele Lady”, is an accomplished music entertainer and educator. She shares musical stories and songs from the South. Her repertoire includes traditional African American music of blues, jazz, spirituals, and folk. Kelle is a graduate of South Carolina State University, where she studied Music Education with Concentrations in Voice. Kelle is the 2011 Mountain Soul Vocal competition winner and the Knoxville Community Shares 2013 Artist of the Year.
Kelle Jolly is the host of Jazz Jam, Knoxville’s only vocal jazz radio show, on WUOT 91.9FM. She is the founder of the Women in Jazz Jam Festival and Ukesphere of Knoxville. Kelle and her saxophonist husband, Will Boyd, have served as ambassadors of jazz from Tennessee to Japan. They are Knoxville MLK Commission Artist Award recipients. In 2021, the City of Knoxville proclaimed July 21st, “Kelle Jolly and Will Boyd” Day in Knoxville, TN. Kelle Jolly is currently a graduate student in the Communication and Storytelling Studies program at East Tennessee State University, pursuing her Master of Arts degree.
Kelle told personal stories of loss and self-care. Loss: A baby story normally ends with a baby. But what happens when it doesn’t? “Losing a baby changes the story you tell about yourself as a woman. I saw myself as a sad failure. Not only did I lose a baby, I lost the ability to ever be pregnant again. My pregnancy loss left me feeling hopeless until l I was asked to conceive something else.” Self-care: Every year, the Women in Jazz Jam Festival has a theme. “I can’t always tell if the theme is a result of the festival planning experience or if the festival planning is shaped by the theme. But the year of the ‘Hearts’ theme was too relevant and real.”
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 17, 2022
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/
Editor’s Pick: Is it prostate or lung cancer?? Plus a great discussion on Bipolar Androgen Therapy. Read Drs. Denmeade and Antonarakins BAT Patient Guide https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9313844/ (rd)
Topics Discussed
After 5 yrs on abi, consider a change in Tx and docs; 1.8 PSA nadir on abi & TAK-700 may require another Tx; PSA post RP comes back at 1.79; Dr.E gets full marks … again; Spot RT complements chemo to reduce PSA; Procrit – pros/cons; BAT to follow disappointing Pluvicto results; adjuvant RT now vs direction from scans and early salvage RT; PCa or NSCLC – confusion reins; tips on starting chemo; time for an Axumin scan; handling sciatic pain while on blood thinners.
Chat Log
George Rovder Arlington VA (to Everyone): 5:27 PM: Genito-Urologic Medical Oncologist
AnCan – rick (to Organizer(s) Only): 5:43 PM: Len – what’s the TAK-700; remember from years ago
Ben Nathanson (to Organizer(s) Only): 5:43 PM: orteronel It worked, just not well enough to meet the goals
Len Sierra (to Organizer(s) Only): 5:43 PM: Yes, orteronel. It’s similar to Abi
AnCan Barniskis Room/John (to Organizer(s) Only): 5:43 PM: could he have been on placebo? was there a placebo arm?
Len Sierra (to Organizer(s) Only): 5:44 PM: I think he said he took it for 7 years, so doubtful that it was placebo.
Peter Kafka – MN (to Everyone): 5:45 PM: Under 60 group candidate
AnCan Barniskis Room/John (to Organizer(s) Only): 5:45 PM: Oh yeah–must have been given the option to continue after study ended.
Mark Thompson (to Everyone): 5:47 PM: You are not alone Aaron, I was diagnosed at the age of 47 also with bone mets.
AnCan – rick (to Ian G (AZ)): 6:15 PM: The field is moving so fast; that’s why you have to have a GU med onc!! Deciding on the best Tx is difficult.
Ian G (AZ) (Private): 6:21 PM: CCCN has a lot of MOs. Is there noone there that can fill Dr V’s shoes.
Frank Fabish Columbus OH (to Everyone): 6:22 PM: Got to go guys. Thanks for the discussions.
AnCan – rick (to Ian G (AZ)): 6:26 PM: You will need a specialty GU med onc, Ian. You are better off at a Center of Excellence not a community practitoner. Dr. V z”l was a rare exception. Tony Crispino may have confidence in someone in LV so check with him but I would strongly recommend going to a Center of Excellence.
Julian Morales – Houston (to Everyone): 6:34 PM: Need to leave – It’s been a long day for me. Will catch you next week!
Ian G (AZ) (Private): 6:35 PM: Rick, this guy at CCCN is a GU MO: Oscar B. Goodman, Jr., MD, PhD. He has really good reviews.
Carl Forman (to Everyone): 6:37 PM: Denmeade is at Johns Hopkins in Baltimore.
AnCan – rick (to Ian G (AZ)): 6:39 PM: Like I say, Ian, if me, I would go to a Center of Excellence and have them work with a local person.
Ian G (AZ) (Private): 6:45 PM: Thanks Rick, I will email Tony right away.
AnCan – rick (to Ian G (AZ)): 6:46 PM: If me, I would see Alan Bryce at Mayo along with a local person.
George A Southiere Jr (to Everyone): 6:51 PM: Good to see everyone. Very tired these days so need to sleep. Goodnight fellows
George Rovder Arlington VA (to Everyone): 6:52 PM: Thank you gents. Goodnight.
Cal Van Zee (to Everyone): 6:53 PM: I have notes from a Nov ’21 webinar on BAT. Mike Schweitzer at SCCA uses BAT and has research on it.
Joe Gallo (to Organizer(s) Only): 6:54 PM: FYI. 3 mos after stop Orgovyx T was at 122
AnCan – rick (to Everyone): 6:55 PM: https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/
Ian G (AZ) (to Everyone): 6:57 PM: Thanks for the warm welcome. Been a long day. See you next time!
