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, Aug 15, 2022
Check out our NEW AnCan Veterans Support Group – all conditions, all genders … with the purpose of helping Vets navigate their healthcare, benefits, and disabilties no matter their Provider! https://ancan.org/veterans/ . Next meeting Aug 26 @ 8.00 pm Eastern in the Barniskis Room. Free & drop-in.
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: Gynacomastia rarely gets discussed, so we put that right this week (rd)
Topics Discussed
Experience with Pluvicto; just started Keytruda/pembrolizumab; genomic testing can fall out of network without patient guidance; determining the low threshold for PSMA imaging; PSMA imaging cost; chemo may be working but considering next treatment; more Pluvicto experience; are occasional intense fevers associated with AUS?; how to deal with gynacomastia; doc misses sepsis and participant hospitalized; switching docs; holding steady; staph incfection lands another Gents in hospital; is PALB2 actionable; treating depression and anxiety; 3rd chemo session brings doc discussing what’s next; uretral stent removal delays Pluvicto start; treatment selction for older Gent with slow recurrence over many years.
Chat Log
Pat Martin (to Everyone): 8:11 PM: what is Provicto?
Paul Freda Lake Worth FL (to Everyone): 8:13 PM: Yes, what is Provicto ??
George Rovder Arlington VA (to Everyone): 8:13 PM: Above is link to Pluvicto
Pat Martin (to Everyone): 8:13 PM: Thanks
Alan Babcock (to Everyone): 5:46 PM: I am confused. My PSA is 0.21 and Dr. Wong & Dr. Geynisman fron Fox Chase said I cannot wait for radiation and ADT.
Jeff Marchi, San Francisco (to Everyone): 5:47 PM: PSA IS ONLY ONE FACTOR; how much cancer, has it spread
Alan Babcock (to Everyone): 5:50 PM: How much does a PSMA cost?
Alan Babcock (to Everyone): 6:03 PM: I must leave. Thank you for all the information.
Herb Geller (to Everyone): 6:25 PM: Nystatin
Bob G. Philadelphia (to Everyone): 6:25 PM: Nystatin powder
Herb Geller (to Everyone): 6:25 PM: Its and antifungal agent
Jimmy Greenfield (to Everyone): 6:28 PM: Thanks guys
George A Southiere Jr (to Everyone): 6:37 PM: sorry to hear Linda. Hang in there
Jeff Preston (to Everyone): 7:02 PM: Thanks to all tonight, great to be with you.
George A Southiere Jr (to Everyone): 7:03 PM: Goodnight all! good seeing you all
John Antonucci–CT (to Everyone): 7:07 PM: There’s a PALB2 website/interest group. https://palb2.org. Mostly breast Ca
Julian Morales – Houston (to Everyone): 7:10 PM: Need to leave – I will Dr E your best and a bottle of Greek Olive Oil! Thanks for the great converstation as always.
John Antonucci–CT (to Everyone): 7:11 PM: gtg goodnight
George Rovder Arlington VA (Private): 7:11 PM: How much B6 daily Rick?
Richard Cramond, Oakton, VA (to Everyone): 7:15 PM: Good night
ALFRED LATIMER (to Everyone): 7:16 PM: Another informative meeting. Must go . Good night
Glenn -Minnesota (to Everyone): 7:22 PM: Thanks for the conversation and suggestions. Good night
Carlos Huerta (to Everyone): 7:32 PM: thanks for the input.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 9, 2022
AnCan APOLOGIZES FOR ANY INCONVENIENCE FROM DOWNTIME ON OUR WEBSITE AT THE END OF JULY. AS A RESULT WE ARE NOW SWITCHING THE HOST.
Check out our NEW AnCan Veterans Support Group – all conditions, all genders … with the purpose of helping Vets navigate their healthcare, benefits, and disabilties no matter their Provider! https://ancan.org/veterans/
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: Libido … from a Care Partners pespective – and lots about Pluvicto (rd)
Topics Discussed
BRCA Newbie overly concerned about cachexia; combining institutions for Tx; Pluvicto supply issues … again!; does Pluvicto obscure X-rays?; Pluvicto side effects; blood thinning problem; Ports – Y/N; bone density on ADT; ONJ; not so quiet on the Eastern Front; reading PSMA scans; after a spike, abi continues to work; Provenge reconsidered … and pursued; relugolix + darolutamide combo; libido – from carepartners PoV; PSMA screening threshold
Chat Log
Mike Yancey (to Everyone): 3:04 PM: I enjoyed speaking with you too. Had by Pluvicto this morning…….
Rich Jackson (to Everyone): 3:06 PM: https://ancan.org/veterans/
Russ Strehlow (to Everyone): 4:10 PM: How do you spell that? * bone strengthener
Ben Nathanson (to Everyone): 4:11 PM: Denosumab
Len Sierra (to Everyone): 4:21 PM: XGEVA® is a 120-mg SC injection administered once every 4 weeks 1 The mean elimination half-life of XGEVA® was 28 days. Having said that, I believe most medoncs give Xgeva once every 3 months.
George Rovder Arlington VA (to Everyone): 4:31 PM: 🙂
Bob G. Philadelphia (to Everyone): 4:59 PM: According to the literature, half life of Xgeva may be 28 days, but the drug stays in the body for 140 days. So, I guess every 3 mo. would work, at least in the beginning.
Ancan – rick (to Everyone): 5:03 PM: Saving Your Sex LIfe
Joe Gallo (to Everyone): 5:04 PM: by john mulhall @ MSKCC; on Amazon
Herb Geller (to Everyone): 5:04 PM: doi: 10.1097/SPC.0000000000000190. Maintaining intimacy for prostate cancer patients on androgen deprivation therapy Richard J Wassersug 1
Herb Geller (to Organizer(s) Only): 5:14 PM: Gotta go. Sorry!
Julian Morales – Houston (to Everyone): 5:15 PM: Thanks everyone – Talk to all next week!
Bob G. Philadelphia (to Everyone): 5:19 PM: Thanks
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 1, 2022
AnCan APOLOGIZES FOR ANY INCONVENIENCE FROM DOWNTIME ON OUR WEBSITE AT THE END OF JULY. AS A RESULT WE ARE NOW SWITCHING THE HOST.
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: Crossing international borders when you’re ‘hot’; and watch your statins on Nubeqa (rd)
TopicsDiscussed
Recurrence after 19 years???; crossing the Border on Pluvicto; delayed PSA response to Pluvicto; throat side -effects; drug holiay approved; reduced darolutamide dosage; statins and darolutamide; debating Provenge – abscopal effect with spot RT; overreading G68 PSMA scans; chemo must precede Pluvicto; why hot flashes persist with no LHRH; adding abi to adjuvant RT; treating PCa testicular spread; FMI report reveals TP53; dealing with chemo
Chat Log
Frank Fabish – Columbus OH (to Organizer(s) Only): 5:16 PM: No update from me tonight. My next checkup and blood draw is Tuesday 8/23. Leaving for Cabo San Lucas on 8/4 for two weeks. A little bit of beach therapy.
Peter Kafka – Maui (to Everyone): 5:27 PM: Is this really advanced disease? Or even recurrent yet?
Bill Franklin – Sunny Florida (to Everyone): 5:28 PM: When all you have is a hammer…
C Huerta (to Everyone): 5:58 PM: Got to get to a Board Meeting. Next time …
AnCan – rick (to Everyone): 5:58 PM: Carl you have to tell me that upfront
john antonucci–CT (to Everyone): 5:59 PM: Lu177 half life 6.7 d. decays to stable hafnium 177 via beta radiation
Ken (to Everyone): 6:01 PM: thanks John
Jim Marshall, Alexandria, VA (to Everyone): 6:06 PM: John, ask him if he is on Medicare Advantage,Part C or Medicare, Part B. The Advantage provider may be the one denying. Jim
Stephen Saft (to Everyone): 6:28 PM: From google Adverse Reactions: The most common adverse reactions reported in clinical trials (≥ 15% of patients receiving PROVENGE) were chills, fatigue, fever, back pain, nausea, joint ache, and headache.
GEORGE ROVDER Arlington VA (to Everyone): 6:28 PM: Thanks
Steve. Peter Kafka – Maui (to Everyone): 6:35 PM: Gotta go = see y’all next week.
Frank Fabish – Columbus OH (to Everyone): 6:54 PM: Gotta go guys. Thanks for the info.
Stephen Saft (to Everyone): 7:04 PM: I am going to say goodnight. Tommorrow is 3 weeks since surgery. I need some time to prepare to get bed. Thanks everyone for sharing.
Jerry Pelfrey – Mexico (to Everyone): 7:10 PM: Time, have to go now. Thanks to everyone.
David Muslin (to Everyone): 7:14 PM: Dr Russell Szmulewitz New nurse January 2022 – Meghan Catenacci meghan.catenacci@uchospitals.edu
Julian Morales – Houston (to Everyone): 7:17 PM: Have to leave. Thanks for the great advice and c onversation! See y’all next Tuesday.
Stan Friedman – Stamford (to Everyone): 7:20 PM: Good night guys. Have an early morning start.
GEORGE ROVDER Arlington VA (to Everyone): 7:33 PM: Embr Wave
Bob G. Philadelphia (to Everyone): 7:34 PM: Thanks everyone. Have a good night
AND – if you’re a Vet, watch this space. AnCan will be launching a new Vets Group to help navigate medical care. It is not exlclusively prostate cancer, so tell Vet friends. 4th Thursday starting June. If you want to sign up please write Group Leader Joe Gallo joeg@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/
Editor’s Pick: Prostate Cancer can occur in the testes!! And plenty of Provenge(rd)
Topics Discussed– long session this week with 2 newbies and 12 folks needing time!
Recurrent PCa does not respond to intermittent cycles; confined recurrence of focally treated high risk PCa; keeping the cancer offguard; Provenge – 2nd time today and not the last; IHT starting; Dr. E prescribes Pluvicto; Trimix experience; darolutamide beter than enz; remembering Hawaian Bob Smith; peritoneal implants (lesions) return; testicualr PCa lesion; UCLA refunds PSMA cost; lo-dose abi with food; pros & cons of self-cathetering; when to move on from chemo; morning fatigue and adjusting darolutamide dose; Provenge tips – again/finally!
Stephen Saft (to Everyone): 6:34 PM: I am going to say goodnight. Thanks
Joe Gallo (to Everyone): 6:43 PM: Vets interested can send me an email or drop in. Joeg@ancan.org
John Birch (to Everyone): 6:58 PM: Need to sign off, appreciate the discusssions tonight.
Frank Fabish – Ohio (to Everyone): 7:04 PM: thanks guys allowing me to give an update. Can’t make it next Tuesday.
Pat Martin (to Everyone): 7:07 PM: I’ll catch you next Tuesday. Good meeting
Mike Yancey (to Everyone): 7:15 PM: Got an early morning, so need to drop before we complete tonite. Lots of good discussion.
Julian Morales – Houston (to Everyone): 7:26 PM: need to drop off – another great meeting, Glad to be able to relate my experience to this community. All the best to everyone!
