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
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 19, 2022
Are you a Vet ? – Join AnCan’s new Vet’s group to help best navigate your healthcare. It’s not about your disease – it’s about getting the best care, bennies and allowances. So please invite other Vets and Care Partners – no matter gender, condtion, or where they get care. Read more at https://ancan.org/veterans/ . Next meeting Thu, Sep 22 , free, drop-in – https://www.gotomeet.me/AnswerCancer
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: Mental health is much on AnCan’s mind right now. It’s highlighted this week by the anxiety suffered by an older gent. (rd)
Topics Discussed
Possible recurrence needs more skilled provider; denovo Mx w. no primary inervention requires a GU med onc; early report post testicualr surgery; short report on NY conference; PIK3CA; MSI-H makes gent a candidate for Keytruda; Gen. Joel needs a new QB; mice and purple tomatoes; treating gynacomastia but how much RT??; slow, creeping PSA gives rise to anxiety in older gent; is spinal pain cancer, asks long term, younger Mx gent?; Pluvicto only holds so what’s next – Jevtana?
Chat Log
Jeff Marchi, San Francisco (Private): 5:07 PM: my brother gene has been given Casodex 2 days before his first Lupron shot. isn’t 14 days the standard?
AnCan – rick (to Jeff Marchi, San Francisco): 5:10 PM: 10-15 days
Jeff Marchi, San Francisco (Private): 5:11 PM: thanks
Herbert Geller (to Everyone): 5:20 PM: Genitourinary Medical Oncologist They deal with prostate, bladder, etc.
Joe Gallo (to Organizer(s) Only): 5:21 PM: Should have had an MRI for a targeted rather than a standard BX.
Len Sierra (to Organizer(s) Only): 5:22 PM: True, Joe.
Pat Martin (to Everyone): 5:25 PM: Genetic testing?
Len Sierra (to Organizer(s) Only): 5:26 PM: This is unbelievable. At the UT website for GU oncology this is what they say: Our team treats the following conditions: (Hint – No mention of Prostate Cancer) Bladder Kidney Penis Testis Ureter Urethra
Herbert Geller (to Organizer(s) Only): 5:26 PM: Great!
George Rovder, Arlington VA (to Everyone): 6:36 PM: https://www.inova.org/doctors/jeanny-b-aragon-ching-md
Mike Yancey (to Organizer(s) Only): 6:44 PM: Early morning doc appointment, so gotta run. Thanks for another great call and discussion AnCan – rick (to George Rovder, Arlington VA): 6:45 PM: If I had to see a doc at Innova, it would be her. George Rovder, Arlington VA (to Everyone): 6:46 PM: Thanks Rick. Good if it’s a go with Dr. E. If not she’s local and more experienced than Joshua Allen. AnCan – rick (to George Rovder, Arlington VA): 6:46 PM: It’s always tough to switch docs within a practice. George Rovder, Arlington VA (Private): 6:47 PM: Of course. Richard Cramond – Oakton, VA (to Everyone): 7:06 PM: I have to go David Muslin (to Everyone): 7:16 PM: What about Dr. O? Julian Morales – Houston (to Everyone): 7:16 PM: Need to drop off. These discussions are only getting better!!! Ben Nathanson (to Organizer(s) Only): 7:18 PM: Sorry, must go — see you all next week Joe Gallo (to Everyone): 7:21 PM: David. 3 sessions 12Gy Mark Thompson (to Everyone): 7:38 PM: Thank you all. George Rovder, Arlington VA (to Everyone): 7:39 PM: Happy New Year. George Rovder, Arlington VA (to Everyone): 7:39 PM: Thanks to all.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 5, 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: Great input this week from Advisory Board Member, Richard Wassersug PhD. And right at he end – maybe a touch of African Waterways – ‘De Nile’! (rd)
Topics Discussed
Stick or twist on RT for longtime recurrent older Gent; a similar Peer Survivor comments; man with cribriform intraductal faces immediate recurrence; starting Prolia; leg pains from ADT; Theraworx; looking at IHT; steady as she goes; MSI-H man asks about Immunex test; abi added to treatment but maybe daro would work; is Clinical Trial failing or succeeding?; aggressive disease recurs on Pylarify 3yrs after Tx ends – but man asks if it’s a false positive.
Chat Log
Richard Wassersug (to Everyone): 5:18 PM: Or there were only 6 cores taken
JEFFERSON DURYEE (to Everyone): 7:00 PM: OP GU PROSTATE STUDY IGUP20133 ETRUMADENT ZIMBERELIMAB DOCETAXEL PETER JAY VAN VELDHUIZEN,MD MY CURRENT CLINICAL TRIAL TEN MONTHS THEY ADDED 3 MORE MONTHS YR OLD ORCHIECTOMY A YR A GO PSA HAS RISEN TO 7.006 TESTERONE LESS THAN 5*
Frank Fabish – Columbus OH (to Everyone): 7:04 PM: Got to go guys. Thanks for listening.
Thomas Jacobsen – CO (to Everyone): 7:05 PM: Thanks everyone. Gotta go.
Julian Morales – Houston (to Everyone): 7:07 PM: Have to drop. Another great discussion. Glad I could contribute! See you next week!
Richard Wassersug (to Everyone): 7:23 PM: Sorry all. I have to go.
Bob G. Philadelphia (to Everyone): 7:25 PM: Time for me to go. Thanks.
Ben Nathanson (to Everyone): 7:27 PM: Good night, George – good to see you again
George Rovder Arlington VA (to Everyone): 7:27 PM: Good night friends. Stay well.
JEFFERSON DURYEE (Private): 7:31 PM: TY AND GOOD NIGHT
