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!)
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!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 11, 2022
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: Drug holiday…but what about that rising testosterone? (bn)
Topics Discussed
Longtime friend remembers John Birch; a thank-you from John’s wife; two more passings — George Degnon and Dave Myers; Dr. E patient wonders what’s next after discontinuing abi; newcomer gets care downstate when Dr. Antonarakis is in his backyard; mysterious red marks following chemo; why is genetic testing useful?; jitters as testosterone rises on a drug holiday; dosing at mealtime to economize on abi; PSMA ordered but PSA is undetectable; helping a new BRCA patient get help at UCSF.
Chat Log
Dennis McGuire (to Everyone): 6:04 PM: she is on
AnCan – rick (to Everyone): 6:59 PM: Dr. Emanuel Antonarakis https://med.umn.edu/bio/hematology-oncology-and-transp/emmanuel-antonarakis
Jim B (to Everyone): 7:27 PM: Hi Bob, I think I am feeling much better today. BTW the chemo sores appeared almost immediately in my case and went away very soon after the steroid cream. The name of the cream is Clobetasol Propionate Cream.
Len Sierra (to Everyone): 7:37 PM: Low dose Abi reference:
Len Sierra (to Everyone): 7:37 PM: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5941614/
Herbert Geller (to Everyone): 8:00 PM: Gotta go. See you all on Monday.
AnCan – rick (to Organizer(s) Only): 8:00 PM: Great job tonight getting through everyone, Peter.
Len Sierra (to Everyone): 8:02 PM: Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, they are synaptophysin positive. DLL3 (Delta-like Ligand 3) is positive in 76% of NEPC.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 3, 2022
Dr. John jumps in with two feet for his debut … and floats beautifully!
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: Best comes late – beware of SELF-MEDICATING; and is a clinical trial preferable to Standard of Care? (rd)
Topics Discussed
John Birch dies – tribute next week; urinary block leads to posible denovo Mx Dx; bladder and bowel control during RT; Jevtana produces bloating; tamoxifen to address gynacomastia; dropping LHRH in daro monotherapy to address fatigue; Pluvicto preferred to CAR-T trial; switching QBs confuses decision; beware of self medicating; similarly, different man – Dr. A endorses self medication decision; should a PSMA be obtained at 0.38; clinical trial offered in lieu of SoC
Chat Log
Pat Martin (to Everyone): 5:06 PM: Thanks much. I’ll have my second infusion next Friday, so I’ll be looking out for it. Thanks
Joe Gallo (to Organizer(s) Only): 5:38 PM: PSMA is much more detailed than CT and Bone scans Although very desirable Brachy (boost) w IMRTmany RadOnc dont have experience Sometimes it is good to vent
Frank Fabish – Columbus OH (to Everyone): 6:01 PM: Got to leave early. Thanks guys. see you next week.
Joe Gallo (to Everyone): 6:30 PM: Just checked. treatment to prevent gynecomastia 3 sessions radiation 12 Gy total
Mark Finn (to Everyone): 6:34 PM: got to go. Thanks for conversation.
Julian Morales – Houston (to Everyone): 6:46 PM: I see Dr E and she will engage you fully as well as monitor your condition as well as your blood work. I did go to other places but glad I found Dr. E!!!
Bob G. Philadelphia (to Everyone): 7:00 PM: Enzalutamide has 6 – 8 day half life; maybe moving right from Enza to Darolutamide, still have effects of Enza to contend with.
Harry (to Everyone): 7:00 PM: gotta go everyone. thanks for the feedback
Julian Morales – Houston (to Everyone): 7:01 PM: Need to leave. Thanks guys for another great session. see you next week. Buenos noches!
Alan Moskowitz – NJ (to Everyone): 7:01 PM: bye all
Jerry Pelfrey (to Everyone): 7:03 PM: have to leave computer is dying.
Mike Yancey-Oklahoma (to Everyone): 7:04 PM: Gotta run; early appointment tomorrow
Len Sierra (to Organizer(s) Only): 7:12 PM: Definitely.
Thomas Jacobsen – CO (to Everyone): 7:18 PM: Gotta go. Thanks to everyone for your feedback and patience with the conversation.
Bob G. Philadelphia (to Everyone): 7:26 PM: Time to go. Thanks & see you all next week. Be well.
George Rovder, Arlington Virginia (to Everyone): 7:30 PM: Thank you all. Good night.
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
