Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 1, 2022 – Audio Only!
This is a audio only recording of the Hi-Risk/Recurrent/Advanced PCa Men & Caregivers meeting held on 2/1/2022. Apologies for this, however it was beyond our control as GoTo made changes to their platform and did not advise us. It’s also the reason the recording is posted so late ….. we couldn’t find it – literally!
The next Tuesday meeting will be on Tue, Feb 15. That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights!
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/ To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
Editor’s Pick: MDA refuses treatment because patient finds himself in trial control arm. Is this ethical? And we talk SUGAR (rd)
Topics Discussed
At 94 yrs old, next treatment step -toxicity considerations; low dose abiraterone; prednisone vs dexamethasone; Carl’s trial officially fails so what next – treatment decision by committee may not be best; spot RT after trial places gent in control arm & MDA refuses RT; Parkinson’s may impact treatment choices; chromgranin as a marker; LDH as a marker; selecting next treatment; let’s talk SUGAR; Lu177 PSMA brings success for some and delays for others
Chat Log
Carl Forman (to Everyone): 4:13 PM: So so sorry to hear about Jake, a dear friend to every one of us. May he rest in peace.
Peter Monaco (to Everyone): 4:17 PM: A really good guy. Gonna miss him for sure.
Rick Davis (to Everyone): 4:28 PM: Dr. Eleni Efstathiou ……
Jim Ward (to Everyone): 4:29 PM: Was Dr. E previously at M.D. Anderson?
Len Sierra (Private): 4:35 PM: That’s an old bio sketch, Rick. Says she’s being mentored by Logothetis as a young investigator.
Rick Davis (to Len Sierra): 4:38 PM: Everything on her is old, Len; she’s only been at Houston Methodist 3 months. Logothetis was her boss at MDA.
David Muslin (to Everyone): 4:46 PM: I got bitten up by no-seuums and have had a bad allergic reactions. Anybody on ADT experience anything similar?
Joe Gallo (to Organizer(s) Only): 4:49 PM: In addition to Orgovyx. 5 mg prednizone. I take 1000 Abi. Empty stomach (nothing 2hrs prior) Nothing to eat for 1 hr after.
Len Sierra (to Everyone): 4:49 PM: Caveat: This study was done in patients who were mCRPC. Tumor responses improved following a steroid switch from prednisone to dexamethasone in castration-resistant prostate cancer patients progressing on abiraterone: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264443/
Steven Nordstrom (to Everyone): 4:52 PM: Thanks, Len.
Cal Van Zee (Private): 4:59 PM: was Carl’s trial PSMA-Lu?
Rick Davis (to Cal Van Zee): 5:09 PM: No – one shot of Actium PSA then Pembro + enz
Julian Morales-Houston (to Everyone): 5:13 PM: Eleni Efstathiou, MD 6445 Main Street Floor 24 Houston Methodist Oncology Partners (713) 441-9948 I have a follow up with Dr E on thursday
Rick Davis (to Everyone): 5:15 PM: dexamethasone
Jim Ward (to Everyone): 5:18 PM: I need to hop off early, gents. Thanks, and good night!
Rick Davis (to Everyone): 5:21 PM: FYI everyone – Herb is an expert in neurobiology!
Len Sierra (to Everyone): 5:30 PM: Chromogranin
John Vandenberg (to Everyone): 5:31 PM: Thanks for the informative discussion. Have to drop off now, good night to all.
Len Sierra (to Everyone): 5:32 PM: Another biomarker for Neuroendocrine disease is neuron-specific enolase (NSE)
Ben Nathanson (to Everyone): 5:37 PM: Neuroendocrine isn’t associated with high PSA, though
Len Sierra (to Everyone): 5:40 PM: You’re right, Ben.
Bill Bradford (Private): 5:46 PM: Thanks for the challenges / food for thought Rick. I am going to try and get a consult with Dr. E asap before making a decision on discontinuing ADT. I do feel like I am getting conflicting information and really need a strong QB
Stephen Saft (to Everyone): 5:49 PM: My PSA was 2.5 at diagnosis with Gleason 9. My PSA is relatively high now. hovering between 127 and 140 since september. Point is it acts strange all the time, so I would like to figure out why.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 25, 2022
We’ll start by talking about NEXT week!!!
The schedule is a little strange …., Monday Jan 31, AnCan welcomes Dr. Rachel Rubin answering Jimmy G’s questions during an intimacy/sexual dysfunction webinar. It’s free but you’ll need to register at: https://register.gotowebinar.com/regi…
… AND our meeting will be on Tuesday, Feb 1 @ 6 pm Eastern . That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights!
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/
Editor’s Pick: how long should you stay on HT prescribed as adjuvant to radiation? This is controversial and tricky – not just your disease risk but own preferences come into play (rd)
Topics Discussed
Likely denovo Mx gent seeks guidance; how long should you stay on adjuvant HT; more on morphing; getting Provenge; TP53, PTEN and RB1 mutations; be sure to ask for NGS test results when your doc orders; enz + pembro fails; taxane and platinum based chemo; Radium223 as an option; Dr. A steps up to help; spot radiation; how well will PSMA curative Tx work?
Chat Log
John Ivory (to Everyone): 4:07 PM: PUBLIC SERVICE ANNOUNCEMENT: What would you do if you found out that you had a rare, chronic disease that affects your skin and weakens your muscles? Lisa Sniderman chose to integrate her disease into her writing and performing. Join Rick Davis as he hosts Solo Arts Heal tomorrow evening at 10:30 ET/7:30 PT https://ancan.org/solo-arts-heal/
George Rovder, Arlington VA (to Everyone): 4:19 PM: Genito-Urologic (GU ) Medical Oncologist.
John Ivory (to Everyone): 4:19 PM: Who is he seeing at UChicago?
Joe Gallo (to Organizer(s) Only): 4:31 PM: He should be careful that an administrator puts him far out on schedule
George Rovder, Arlington VA (to Everyone): 4:33 PM: PSMA Scan
Joe Gallo (to Organizer(s) Only): 4:33 PM: PSMA PET
George Rovder, Arlington VA (to Everyone): 4:33 PM: Gallium 68 or Pylarify,
Joe Gallo (to Everyone): 4:34 PM: PSMA PET
John Ivory (to Everyone): 4:35 PM: UChicago Stadler, Szmulewitz
Len Sierra (to Everyone): 4:36 PM: Dr. Russell Szmulewitz, (U Chicago)
John Ivory (to Everyone): 4:36 PM: Or at Northwestern, Vanderwheele. I’ve seen both Smulewitz and Vanderwheele–both are great docs
Larry Fish (to Everyone): 4:38 PM: I think too much detailed info – in general for new guys – focus on 3 main things to do – when guy taking complex notes will get lost later. Joe Gallo (to Everyone): 4:39 PM: cribriform intraductal
George Rovder, Arlington VA (to Everyone): 4:39 PM: Cribriform Intraductal
John Ivory (to Everyone): 4:39 PM: You can also watch the recording again on YouTube tomorrow, Tom M.
Chick Lindsay (to Everyone): 4:39 PM: Where find info on SBRT therapy, and does UMN-Mpls offer the SBRT radiation therapy?
Larry Fish (to Everyone): 4:41 PM: good to make sure guy gets 1,2,3, ABC , can’t handle too much at first – technically and emotionally…relistening may not emphasize what to do first, second and third and then do that – 1 get a good GU quarterback and see what he says, 2- get PSMA scan to find out what is going on where, 3- form a plan of action with MD , based on 1 and 2 and then “Take Action”. All the other stuff will follow …
Joe Gallo (to Everyone): 4:44 PM: Dr Mark Scholz. The Key to Prostate Cancer
Bruce Bocian (to Everyone): 5:03 PM: My PSA rose to .31 after RP 9 years ago, had a PSMA scan, nothing detected. Sought 3 opinions, all said HT not recommended under .5. I just finished Salvage Radiation, PSA dropped to .024, blew the doc away as he was expecting a smaller drop over a longer period.
Bob Smith (to Everyone): 5:57 PM: Given my rapid rise in PSA (14 to 44) in 40 days and the explosion in bone mets (approx 3-6 to about 25), am I taking excessive risk by delaying the Ra 223 while trying to get a timely ga 68 psma Pet which would require a trip to the mainland?
AnCan – rick (to Everyone): 5:58 PM: Bob …. You may be able to get an Axumin scan and maybe a Pyl scan on HI.
Mark Baldridge – Seattle (to Everyone): 5:58 PM: Is Lutetium 177 PSMA expected to be a game-changer in the future?
AnCan – rick (to Everyone): 5:59 PM: Mark … YES!
Peter Kafka – Ken Anderson (to Everyone): 6:03 PM: Pylarify is not available in Hawaii. I spoke to the company. Closest is California. Mot sure about Axumin. Might have to check their website – Blue Earth? I think.
Carl Forman (Private): 6:08 PM: I asked Tagawa about LU177, and he told me that it will not be a game changer as it will help some but not others
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!
From surviving to thriving to grieving… Award-winning artist and playwright Aoede shared stories, music and films illustrated how creating music and art has been her lifeline during her 14-year journey battling a rare chronic illness.
Watch here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 17, 2022
This was the second of our meetings where we reported on the PCF Retreat back in Oct/Nov. Session 2 can be heard at https://www.youtube.com/watch?v=eoFWeGbeGUA, and you can learn about everything from exercise to how your gut microbiomes may impact prostate cancer treatment.
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/
To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
Editor’s Pick: Variant disease is much on my mind, and two of our guys who are likely variant, need help this week. (rd)
Topics Discussed
de novo MX currently under control; Dr. Morgental debunked; treatment controls PCa but not sciatica; cabazitaxel stabilizes disease at PSA of 120 – but is this the right Tx; just turned mCRPC so whats next for likely variant situation; abscopal effect; Provenge and 2nd line HT drugs; docetaxel as a long term option; choose a collaborative GU med onc as your QB; more Provenge – how important is tumor burden; is Quercetin something we need to know about?
Chat Log
Mark Perloe, MD Atlanta (to Everyone): 6:06 PM: Wanted to share that Northside Hospital in Atlanta has recently started Pylarify PET scans and has announced that they will have ViewRay MRI-LINAC
AnCan – rick (to Herb Geller): 6:24 PM: any abi or enz???
Peter Monaco (to Organizer(s) Only): 6:24 PM: Surprised he would get a drug holiday with bone mets present…
Robert McAleese (to Everyone): 6:43 PM: sorry I have to leave for a family emergency
AnCan – rick (to Len Sierra): 6:51 PM: Len – has cabazitaxel been shown to be non-inferior to docetaxel
Julian Morales-Houston (to Everyone): 7:03 PM: www.hopkinsconsults.org – Dr Epstein
Carlos Huerta (to Everyone): 7:04 PM: FYI, Mayo in Phoenix is now doing the PYL PET scan.
Stephen Saft (to Everyone): 7:05 PM: “Thanks for the link to Jonathan Epstein.
Len Sierra (Private): 7:06 PM: Not sure they were ever trialed Head to Head. But cabazi is only approved for 2nd line taxane where docetaxel failed. Of course, docs can prescribe off-label.
Joe Gallo (to Everyone): 7:07 PM: FYI also. Fox Chase CC in Phila is now enrolling for PSAM PET PYL
Carlos Huerta (to Everyone): 7:07 PM: I have to go. Thanks for the summaries.
Joe Gallo (to Everyone): 7:07 PM: PSMA 🙂
AnCan – rick (to Len Sierra): 7:08 PM: K …… I don’t think it is any less effective than docetaxel
Stephen Saft (to Everyone): 7:08 PM: Thanks to Joe Gallo. I knew what you meant.
Chick Lindsay (to Everyone): 7:12 PM: I need to leave tonight’s meeting. Thank you for making the time for me tonight. Thanks for the presentations, and the updates. Chick
Frank Fabish (to Everyone): 7:17 PM: Guys got to leave. This sciatica is killing me.
Len Sierra (to Everyone): 7:21 PM: https://pubmed.ncbi.nlm.nih.gov/33451978/ This is a Phase 2 study of Provenge with or without Xofigo in mCRPC. Conclusion was that the combo was superior to Provenge alone. Bonus finding: PSA50 decline was seen in 31% of patients vs. 0% in monotherapy.
Stephen Saft (to Everyone): 7:48 PM: I am going to say thank you and good night.
Gregg (to Everyone): 7:49 PM: Thanks much everyone. Have to leave. Gregg Nolting.
Michael Chandler (to Everyone): 7:53 PM: Thank you all, best health.
Len Sierra (Private): 7:54 PM: Seems to be in-vitro studies only, but is interesting. Not in the clinic.
Herb Geller (to Everyone): 7:55 PM: Those papers are not from NIH. They are from research groups in China and Atlanta. They are very basic science papers. Quercetin has been the subject of investigation for some time.
Mike Phillips & Tomi (to Everyone): 7:55 PM: Thank you!
Cal Van Zee (to Everyone): 7:56 PM: logging off now. Positive throughts to everyone.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 11, 2022
In 2021, almost 15,000 visitors watched 258,000 viewing minutes on AnCan’s YouTube Channel – THANK YOU! Learn more about AnCan in 2021at https://mailchi.mp/ancan/ancans-year
Savvy Co.op , a patient led research company, are seeking a very few men with metastatic, castrate resistant PCa who failed a 2nd line anti-androgen. It pays $110 for 60 min from home. For more details and to apply check https://gigs.savvy.coop/scpct/?r=ancan
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about our 11 monthly prostate cancer groups at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter at https://ancan.org/contact-us/
Editor’s Pick: We learn about a new insurance approved cancer rehab program; and we talk about how to prepare for IMRT and for Provenge. (rd)
Topics Discussed
GU med onc needed in WI area; getting germline (inherited) genetic testing; where’s Jake?; Valentine’s Intimacy Sexual Dysfunction Webinar on Jan 31; Savvy Coop needs a few good men; ReVital – a new PT rehab program; how to prepare for successful IMRT; … and to prepare for Provenge; PSMA scans; Lu177 combo treatments; HOXB13 mutation; 18 vs 24 mo. ADT; a strange abi history; ‘partial’ drug holidays and monotherapy HT
Chat Log
AnCan – rick (to Everyone): 4:21 PM: Emanuel Antonarakis, Masonic Cancer Center, U. of MN
Daniel Ford (to Everyone): 4:22 PM: Has anyone seen an instance where genetic profiling led to actionable (ideally successful) therapy?
Herb Geller (to Everyone): 4:23 PM: Abolutely. BRCA mutations can lead to treatment with PARP inhibitors.
Peter Kafka (to Everyone): 4:24 PM: I have tagged mutations and was treated with targeted therapies so far successfully. Several others on the call as well
Daniel Ford (to Everyone): 4:25 PM: So if no BRCA mutations then nothing useful? What are examples of targeted therapies?
Carl Forman (to Everyone): 4:26 PM: Genetic testing resulted in my being treated with a PARP inhibitor, Olaparib, due to my BRCA2 mutation. It kept my PSA undetectable for almost 2 years before it ran its course.
Len Sierra (to Organizer(s) Only): 4:28 PM: Dan, there are several mutations that suggest patients with PCa may respond well to immunotherapy.
Carl Forman (to Everyone): 4:30 PM: Also, genetic testing can identify whether you are MSS or MSH and have either a high or low tumor burden. If MSH and high tumor burden, use of Keytruda can be a viable option.
Cal Van Zee (to Everyone): 4:30 PM: the risk to your children is significant if you have BRCA mutations. If you have chldren you definitely want to know.
John Vandenberg (to Everyone): 4:31 PM: What is MSS and MSH?
Bill Franklin (to Everyone): 4:32 PM: Dan, Len Sierra has noted that there are several mutations that suggest patients with PCa may respond well to immunotherapy.
Carl Forman (to Everyone): 4:32 PM: microsatellite stable (MSS) or high (MSH)
George Rovder, Arlington VA (to Everyone): 4:44 PM: Genito Urinary (GU) Medical Oncologist
Alexa Jett (to Everyone): 4:56 PM: https://bit.ly/3qWKSWK Dr. Rachel Rubin Webinar – January 31st at 8 pm ET
Carl Forman (to Everyone): 5:04 PM: www.revitalcancerrehab.com
Len Sierra (to Everyone): 5:07 PM: Rehab Cancer only available in these states: Services are currently available in AZ, CA, GA, KY, MD, VA, DC, IL, ME, MN, MO, NJ, PA, TN, TX, WA, OH. Insurance coverage may vary based on provider.
Chick Lindsay (to Everyone): 5:10 PM: Thanks for this info. my brother can use this.
eric (to Everyone): 5:44 PM: Good night guy. Have to go but thanks for the knowledge, stay positive, and stay blessed. Talk to you guys next week!! We live to fight another day!!
AnCan – rick (to Everyone): 5:45 PM: right back at ya, Eric
Ben Nathanson (to Everyone): 5:45 PM: Thanks, Eric!
Chick Lindsay (to Everyone): 5:53 PM: Is Luteshim a chemotherapy?
Len Sierra (to Everyone): 5:53 PM: It’s a targeted radiotherapy. Radioligand therapy, more accurately.
Chick Lindsay (to Everyone): 5:54 PM: Thanks.
John Birch (to Everyone): 6:03 PM: Have to run. Appreciate the dialogues and info sharing tonight.
Jeff Wood (to Everyone): 6:05 PM: Good night to all.
Ken (to Everyone): 6:11 PM: Great
Chick Lindsay (to Everyone): 6:17 PM: Who is John’s Vandenberg’s doc?
AnCan – rick (to Everyone): 6:18 PM: Andrew Armstrong at Duke
Daniel Ford (to Everyone): 6:18 PM: Gotta run guys – thanks.
Cal Van Zee (to Everyone): 6:20 PM: First round chemo for me tomorrow. Trying mightily to not be afraid as I know many of you have already had the six rounds.
Len Sierra (to Organizer(s) Only): 6:23 PM: Good night, gents. Good job, Peter K!
