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 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!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 3, 2022
Here’s to a healthy 2022 for all – to learn more about what AnCan has achieved in the past 12 months, please visit https://mailchi.mp/ancan/ancans-year-… We also learned recently that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time on our YouTube Channel – THANK YOU! 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/
This meeting was a little different to normal with more than 50 participants carried over from the PCF Retreat session https://www.youtube.com/watch?v=eoFWeGbeGUA We gave time to new participants, then opened the floor.
Editor’s Pick: It can be really tough getting good care in Canada. We also examine intraductal issues.(rd)
Topics Discussed
‘Young’ man with low level recurrence 4 years after RP; NJ gent needs to find a GU med onc; getting treated for progressive PCa in Canada is much tougher; younger man with intraductal Dx needs better guidance; intraductal conversation gets expanded; long-term chemo continues to hold the beast at bay!; reading PSMA scans can be challenging – but leads to a result.
Chat Log
Michael Chandler (to Everyone): 6:21 PM: what does chemical recurrence mean?
Pat Martin (to Everyone): 6:21 PM: how often is he getting his PSA checked? t
John Antonucci (to Everyone): 6:22 PM: it means your PSA comes back up Michael
Pat Martin (to Everyone): 6:22 PM: That would help you determine PSADT
Ben Nathanson (to Everyone): 6:23 PM: @Michael Chandler –‘chemical recurrence’ or ‘biochemical recurrence’ just means that your PSA, after having gone low, has risen again past a specified level
Len Sierra (to Everyone): 6:26 PM: Biochemical recurrence is defined as a rise in PSA to 0.2 ng/mL and a confirmatory value of 0.2 ng/mL or greater following radical prostatectomy
Stephen Saft (to Everyone): 6:36 PM: I am going to say good night. My son is staying at my house tonight and I am going to hang out with him for a bit. Thanks
Jake Hannam (to Organizer(s) Only): 6:37 PM: anomaly? get rechecked
Peter Kafka (to Everyone): 6:38 PM: He should see a Med Onc right away, perhaps at MSKCC. My 2 cents.
Bill Franklin (to Organizer(s) Only): 6:39 PM: I agree, in my opinion his doctor should order a recheck anyway. I know I would ask for one.
Joe Gallo (to Organizer(s) Only): 6:39 PM: NJU is primarily a radiation facility
Bill Franklin (to Everyone): 6:41 PM: If he got rechecked and the PSA went down again on treatment then maybe a scan is in order.
Stan Friedman (to Everyone): 6:42 PM: where in New Jersey does he live?
Rick Davis (to Everyone): 6:46 PM: joeg@ancan.org
Peter Kafka (to Everyone): 6:50 PM: If he complains of arthritis and back pain, all the more important to get a psma scan. Just in case….
John Antonucci (to Everyone): 6:51 PM: good point Peter
Peter Kafka (to Everyone): 6:58 PM: Is HIFU covered by Canadian Medicine? Is it considered Standard of care in Canada? I have been anemic due to ADT for 8 years. My Hemoglobin is in the low 9’s. Eleven is pretty good . I have not been on Lupron for 5 months now. So I think Nubeqa causes it.
Stan Friedman (to Everyone): 7:29 PM: can’t he do a televisit?
Julian Morales-Houston (to Everyone): 7:29 PM: Dr E is a fantastic Medical Oncologist and works with me to guide me thru this PCa.
John Ivory (to Everyone): 7:30 PM: I agree–try to meet Dr. E by Zoom first if you can’t afford to travel
Julian Morales-Houston (to Everyone): 7:31 PM: Dr E does televisit and in this current pandemic increase – It is preferred!
Jerry Pelfrey – Mexico (to Everyone): 7:33 PM: Gentlemen, unfortunately I must leave now.
Julian Morales-Houston (to Everyone): 7:37 PM: Eleni Efstathiou, MD is at Houston Methodist Oncology Partners 713-441-9948. You can mention my name!
Bill Franklin (to Everyone): 7:38 PM:. Good night and Happy New Year to all!
Fred Stires (to Everyone): 7:39 PM: Any recommendations for a good medical oncologist in North New Jersey
Ken (to Everyone): 7:40 PM: Signed up for 12 more chemo cycles so it would take me to 43…. its possible!
John Ivory (to Everyone): 7:41 PM: Ken–you’re like the Superman of chemo–Chemoman!
Jake Hannam (to Everyone): 7:41 PM: You are my hero, Ken. Keep it up!
Len Sierra (to Everyone): 7:44 PM: Ken, time to apply to the Guinness Book of World Records — freakin’ amazing!
Jake Hannam (to Everyone): 7:47 PM: yes, great job Herb!
Len Sierra (to Everyone): 7:50 PM: Alk Phos reference range: The normal range is 44 to 147 international units per liter (IU/L) or 0.73 to 2.45 microkatal per liter (µkat/L). Normal values may vary slightly from laboratory to laboratory.
Jake Hannam (to Everyone): 7:50 PM: ALP results are reported in units per liter (U/L). For men and women older than age 18, an ALP level between 44 and 147 U/L is considered normal. The normal range for children is higher than that for adults, especially for infants and teens because their bones are growing rapidly.
Frank Fabish (to Everyone): 7:53 PM: got to go guys
Peter Monaco (Private): 7:54 PM: 5 weeks since my hip replacement surgery. Anterior method is awesome. Recovery has been a breeze!
Rick Davis (to Peter Monaco): 7:54 PM: Told ya …. ;<)))))
George Rovder, Arlington VA (to Everyone): 7:55 PM: Thank you all. George
Peter Monaco (Private): 7:55 PM: Indeed you did! Glad you were right!
don kramer (to Everyone): 7:56 PM: Thank you, Rick and Joe and all. always beneficial to get the help along this path of barbed wire and broken glass
don kramer (to Everyone): 7:56 PM: Be Well , ALL.
Pat Martin (to Everyone): 7:57 PM: See ya all next Tuesday.
Julian Morales-Houston (to Everyone): 7:59 PM: Happy New Year to all!!
Michael Chandler (to Everyone): 8:00 PM: Thank you Rick and all. Happy New Year and see you next week
Martin Wice (to Everyone): 8:01 PM: Thank you. Happy new year.
For the final webinar of 2021, we went out with a bang with “How Do You Know When to Enter Active Surveillance and When to Leave?”
Featuring Kirsten Greene, MD (Paul Mellon Professor andchair of the University of Virginia’s Department of Urology), Dr. Greene stated that the goal for most men on AS is delaying active treatment.
“Both you and your physician should know if you are on watchful waiting or active surveillance and it should be the one YOU WANT. Know your destination!”, she said. Patients and doctors should recognize that AS involves close monitoring and is different from the hand’s off approach of watchful waiting.
She shared:
• Active surveillance involves close PSA follow-up, serial biopsies, MRI, and maybe genomic testing.
• The goal of active surveillance is to safely delay treatment but preserve your option to treat for cure.
• Watchful waiting is a hands-off, approach. PSA periodically with no biopsies, no imaging.
• The goal of watchful waiting is to allow the prostate cancer to take its natural course (which means maybe spread) and to treat symptoms when they arise. No plan for curative treatment ever.
Some men with very low-risk prostate cancer may never be treated.
Dr. Greene stated that the triggers for intervention are:
• Consistent change in PSA
• Progression found on follow-up biopsy
• Patient anxiety
• Clinical or radiographic evidence of local/distant progression
• Identification of more concerning pathologic variants of prostate cancer (cribriform or intraductal patterns)
Hear all about this, and more by watching the recording:
Dr.K very generously agreed to answer addtional Q&A after the session ….. you’ll find a whole bunch more great information here – and thanks to Howard W for writing them up. Click AnCan After Hours Greene Q&A
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
