Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 28, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
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: Picky treatments like partial salvage radiation and HIFU may come back to haunt you. (bn)
Topics discussed
Hanging tough on Keytruda and seeing where it goes; after crossing the globe for Pluvicto, back to cabazitaxel and and hunting for options; a pill that makes leg cramps vanish; why Erleada when there’s Nubeqa?; atrial fibrillation; tissue staining to detect PSMA avidity; twice treated with HIFU and PSA is going up; risks vs benefits of pelvic girdle salvage radiation; despair turns to hope after an encounter with psilocybin
Ben Nathanson · 7:19 PM I was going to say that Dr A has commented on who’s right for Keytruda…the symptoms of microsatellite instability high, high mutation burden, and mismatch-repair deficiency are all related, but you don’t always see all three. He says: So, when you see all three, a loss of function — mismatch repair mutation — and a high TMB, and the microsatellite instability, you begin to believe that this is a true pembrolizumab-sensitive tumor. Oftentimes you get tricked and you see one of the three or two of the three, and then you are kind of stuck because you sort of want to give pembrolizumab, but you don’t know if that patient is going to respond.
Joe · 7:39 PM on a happy note I’m 6+ years out from Gleason 9s, failing Nov 2016 surgery, mets to lungs and hip, 6 rounds of docetaxel, ever since undetectable…got over my depression, lost 26 lbs since November 2022, on purpose and feel pretty good, also did a meaningful psilocybin ceremony in Nov which helped me reset my outlook…used to be pissed off and sad when I got my less-than 0.01 quarterly…go figure, best to all
Joe · 7:42 PM ohhh sorry on Lupron+Abi ever since docetaxel back in March of 2017, forgot that part hahahahaha
Len Sierra · 7:43 PM Joe, would you like to talk to us about your psilocybin experience?
Joe · 7:47 PM Len yes I’d be happy to if there is time, changed my life 0/1 night/day catatonic/functional
Steve Schuler · 7:58 PM Mine is going to be 38x for total of 68Gy. Whole pelvic + nodes
Steve Schuler · 7:59 PM A complication of mine, is my hip replacement, so the planning needed to work around that. Not sure if that impacts the number vs. intensity
Steve Schuler · 8:00 PM Only 1 for me
Jack · 8:02 PM A good read “A Salamander’s Tale” by Paul Steinberg, MD …a story of 35 plus years of surviving prostate cancer.
Alan Moskowitz · 8:05 PM Need to leave now. thanks guys.
AnCan – rick · 8:18 PM https://ancan.org/joe-boardman-comes-to-terms-with-life/
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, Sep 27, 2022
Our Sept. 28 Solo Arts Heal will feature AnCan arts instructor Hannah Garrison — she’ll paint on a canvas while she’s being interviewed on how she’s used her art to heal herself and heal others — should be a great show. The recording will be available afterward on our Solo Arts Heal page.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Under-60 newcomer looks for views on triplet therapy after bad advice from urologist sees PSA jump from 2 to 15 to 33 to 111. (bn)
Topics discussed
Passing of AnCan participant Steve Saft; 53-year-old newcomer with small prostate tumor but widespread mets asks about triplet therapy; good news marks 3rd year of treatment; first Keytruda infusion goes smoothly; after years on darolutamide the pills are now “like lead sinkers”; feeling good on Orgovix and flying to meet Dr. E; check for up-to-date radiation technology before treatment; how much radiation for gynocomastia?; heavy rectal bleeding a year after therapy; 6th Pluvicto complete, rechallenge later?; PSMA avidity unclear — try Axumin?
Chat Log
AnCan – rick (to Organizer(s) Only): 6:03 PM: Len – John Madden is the guy we missed last week. I expect you realized.
Len Sierra (to Organizer(s) Only): 6:04 PM: yep
Joe Gallo (to Organizer(s) Only): 6:07 PM: I have to leave at 7 for a 50 Vets meeting
George Rovder, Arlington VA (to Everyone): 6:13 PM: https://obits.levinefuneral.com/stephen-r-saft-saft
Jim Ward (to Everyone): 6:15 PM: Could someone please spell Steve’s last name?
Joe Gallo (to Organizer(s) Only): 6:39 PM: Except for 2 days before PSA
AnCan – rick (to Everyone): 6:42 PM: https://www.houstonmethodist.org/doctor/eleni-efstathiou/?inm=vfad Dr. Eleni Efsathiou
Dennis Correia (to Everyone): 6:49 PM: A Dexa scan for bone density should also be considered.
Joe Gallo (to Organizer(s) Only): 6:56 PM: Off to the Vets.
John Madden (Hou) (to Everyone): 7:01 PM: Kwon (chemo 1st followed by 2nd gen) https://youtu.be/IEToOBuca1Q?t=652
TonyFig – NYS (to Everyone): 7:04 PM: There was some discussion about nutrient interaction with drugs. Here is a data base link as a tool to search potential interactions. I check it prior to using any vitamins/minerals/supplements against any prescribed drugs http://naturaldatabaseconsumer.therapeuticresearch.com/nd/Search.aspx?cs=KAISER~CEPDA&s=NDC&rli=1&ufpl=1
Ravi (to Everyone): 7:04 PM: so is there an interaction between keytruda and darulatamide
TonyFig – NYS (to Everyone): 7:18 PM: Under what general guidelines would triple therapy be suggested.
Peter Kafka – MN (to Everyone): 7:20 PM: No interaction btwn Daroludamide and Keytruda that I am aware of. I am being treated at the moment at the Univ. of MN and they are pretty thorogh
Herbert Geller (to Everyone): 7:22 PM: The ARASENS and PEACE-1 trials supported the use of triple therapy in newly diagnosed hormone-sensitive disease:
Smith MR, Hussain M, Saad F, Fizazi K, Sternberg CN, Crawford ED, Kopyltsov E, Park CH, Alekseev B, Montesa-Pino Á, Ye D, Parnis F, Cruz F, Tammela TLJ, Suzuki H, Utriainen T, Fu C, Uemura M, Méndez-Vidal MJ, Maughan BL, Joensuu H, Thiele S, Li R, Kuss I, Tombal B; ARASENS Trial Investigators. Darolutamide and Survival in Metastatic, Hormone-Sensitive Prostate Cancer. N Engl J Med. 2022 Mar 24;386(12):1132-1142. doi: 10.1056/NEJMoa2119115. Epub 2022 Feb 17. PMID: 35179323.
Herbert Geller (to Everyone): 7:23 PM: Fizazi K, Foulon S, Carles J, Roubaud G, McDermott R, Fléchon A, Tombal B, Supiot S, Berthold D, Ronchin P, Kacso G, Gravis G, Calabro F, Berdah JF, Hasbini A, Silva M, Thiery-Vuillemin A, Latorzeff I, Mourey L, Laguerre B, Abadie-Lacourtoisie S, Martin E, El Kouri C, Escande A, Rosello A, Magne N, Schlurmann F, Priou F, Chand-Fouche ME, Freixa SV, Jamaluddin M, Rieger I, Bossi A; PEACE-1 investigators. Abiraterone plus prednisone added to androgen deprivation therapy and docetaxel in de novo metastatic castration-sensitive prostate cancer (PEACE-1): a multicentre, open-label, randomised, phase 3 study with a 2 × 2 factorial design. Lancet. 2022 Apr 30;399(10336):1695-1707. doi: 10.1016/S0140-6736(22)00367-1. Epub 2022 Apr 8. PMID: 35405085.
Ravi (to Everyone): 7:32 PM: There was a researcher who actually spoke to this group about using estrogen
AnCan – rick (to Everyone): 7:33 PM: Webinar w. Wassersug https://ancan.org/estrogen-based-hormone-therapy-treating-prostate-cancer/
Herbert Geller (to Everyone): 7:34 PM: Tamoxifen — Tamoxifen can be taken along with the hormonal anti-prostate cancer treatment (androgen deprivation or antiandrogen monotherapy). Tamoxifen must be taken every day for the duration of antiandrogen treatment. In one study, only 8 percent of men who took an antiandrogen plus tamoxifen developed gynecomastia (compared with 68 percent of men who took the antiandrogen alone) [2].
Herbert Geller (to Everyone): 7:35 PM: Gynecomastia that has already developed can be treated with higher radiation doses and may improve pain. However, when given after breasts have already developed, radiation is not very effective at reducing breast size.
Alan Babcock (to Everyone): 7:50 PM: I must go. See y’all next week.
AnCan – rick (to Organizer(s) Only): 7:53 PM: You have until 5.15 Len
Len Sierra (to Organizer(s) Only): 7:54 PM: Oh, ok, I thought we had to quit by 5pm
Frank Fabish – Columbus OH (to Everyone): 7:55 PM: Got to go guys. Great conversations. RIP Steven.
AnCan – rick (to Organizer(s) Only): 7:55 PM: The next group starts at 5.30 pm
AnCan – rick (to Organizer(s) Only): 8:01 PM: Same lab??
Peter Kafka – MN (to Everyone): 8:02 PM: psma scan?
AnCan – rick (to Everyone): 8:03 PM: D. Jack does not show on PSMA …. we don’t know if he’s avid
Norm Pollock (to Everyone): 8:07 PM: can you spell that scan
John Madden (Hou) (to Everyone): 8:07 PM: Mei saw this article, super early, isn’t even peer-reviewed yet, but this guy claims to be working on a test materially more accurate than psma, ..looks promising but probably pretty far off: https://www.eurekalert.org/news-releases/947867
Len Sierra (to Everyone): 8:08 PM: Norm, I think you want the spelling of Axumin.
Norm Pollock (to Everyone): 8:08 PM: thanks
Herbert Geller (to Organizer(s) Only): 8:09 PM: Sorry guys, gotta eat. See you next week.
Herbert Geller (to Everyone): 8:10 PM: See you next week.
David Muslin (to Everyone): 8:10 PM: Got to go men. See you next Monday
Jeff Wood (to Everyone): 8:12 PM: Got to go, goodnight
Julian Morales – Houston (to Everyone): 8:13 PM: see you guys next week!
AnCan – rick (to Everyone): 8:14 PM: https://ramparthealth.com
Peter Kafka – MN (to Everyone): 8:15 PM: Good night. Good meeting Len.
Jack (to Everyone): 8:19 PM: Www.clinicaltrials.gov/ct2/show/NCT04713371
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 12, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups 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: We are talking lots of appetite, diet and exercise to manage ADT & chemo this week (rd)
Topics Discussed
Appetite issues; enz and dizzy spells; ARASENS darolutamide trial; hot flashes … again; creeping up on darolutamide ; PSA testing – to how many decimal places?; 2 men consider mitigating ADT with exercise and more; not all PCa in same man makes PSMA; Pluvicto continues to bring PSA down
Chat Log
Marc Valens (to Everyone): 3:23 PM: Try Larabars. No added sugar, just fruit and nuts
AnCan Herb (to Everyone): 3:38 PM: Enzalutamide can cause hypertension, but no information on postural hypotension
Len Sierra (to Organizer(s) Only): 3:40 PM: From RxList website: Stop using enzalutamide and call your doctor at once if you have: dizziness, spinning sensation; a seizure (black-out or convulsions);
AnCan – rick (to Organizer(s) Only): 3:43 PM: Len – that’s the concern around it causing seizure
AnCan – rick (to Everyone): 3:44 PM: ARANOTE and ARASEC
James Barnes (to Everyone): 4:43 PM: I also was on Enzalutimide and could not tolerate the anxiety and brain fog. I have been doing much better on Aberaterone for the past 6 months.
Frank Fabish – Ohio (to Everyone): 4:45 PM: Hey guys got to go. Thanks for your input. See you next Monday.
Jim Ward (to Everyone): 5:08 PM: Gotta run, gents. Good night!
Len Sierra (to Organizer(s) Only): 5:12 PM: G’night, Gents.
Peter Monaco (to Organizer(s) Only): 5:17 PM: Good evening gents!
John Birch (to Everyone): 5:17 PM: Great news on the numbers Dennis! Need to go, thanks everyone!
AnCan Herb (to Everyone): 5:18 PM: I gotta go. For those celebrating Passover, I hope you enjoy your Seder. And then for those celebrating Easter, all the best.
