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.
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/
Editor’s Pick:This week, it’s a theme – men who are clearly their own best advocate and men who just ain’t….. and don’t let a handful of difficult customers deter you (rd)
Topics Discussed
Foundation Medicine’s Next Generation Sequencing liquid biopsy ; ‘Be You Own Best Advocate; looking to bike like Dad for another 30 yrs ….at 59 ; get best information to make intial treatment decision; everone else responsible for this man’s PCa except him; when to intorduce 2nd line anti-androgen and which one; and more … abi vs enz; finishing salvage RT; let’s talk about soy; explaining RT ligands/radionuclides; yup – that pain in the neck is PCa; cabazitaxel – hopefully the plateau before the drop; holding the course with pembro despite no result; blood pressure issues; Lu177 PSMA’s a winner for this v. grateful man; palliative care, hospice or what?
Chat Log
Joe Gallo (Private): 6:08 PM: What about SelectMDx?
AnCan – rick (to Joe Gallo): 6:09 PM: ???? – explain Joe
Joe Gallo (Private): 6:11 PM: Urine based test that confirmed the probability that I had greater than Gleason 7. Proceeded to TP. A favorite of E David Crawford
ALFRED LATIMER (Private): 6:12 PM: Rick. I forget. Who does the liquid biosy?
Jake Hannam (to Everyone): 6:13 PM: ty carl – i do have a brief update but no news
Joe Gallo (Private): 6:13 PM: Measures 2 mRNA cancer related biomarkers
AnCan – rick (to ALFRED LATIMER): 6:14 PM: Foundation Medicine
AnCan – rick (to Organizer(s) Only): 6:19 PM: He is high risk with PSA 22 but borderline
Jimmy Greenfield (Private): 6:19 PM: Thirty years! I like his optimism
Len Sierra (to Everyone): 6:19 PM: Crude incidence of individual secondary cancers ranged from 0.2% to 2.3% for patients treated with external beam radiotherapy, 0.1% to 2.1% for patients treated with brachytherapy, 0.2% to 1.7% for patients treated with brachytherapy and external beam boost, and 0.3% to 2.3% for patients not exposed to radiotherapy BMJ. 2016; 352: i851. Second malignancies after radiotherapy for prostate cancer: systematic review and meta-analysis
Warren in Edmonton (to Everyone): 6:24 PM: If Len would like to chat with me after the meeting please let me know, I can offer a great deal of information on his question
Peter Kafka (to Organizer(s) Only): 6:24 PM: He should get a second opinion on his biopsy with this one
Joe Gallo (to Everyone): 6:26 PM: Epstein Consult https://hopkinsconsults.org Eric. Just ask you urologist to send. You don’t have to track down your slides
Eric Madison, WI. (to Everyone): 6:35 PM: Have a great night, guys!
Joe Gallo (to Organizer(s) Only): 6:35 PM: He will get a good discussion when he chats with Epstein
Pat Martin (to Everyone): 6:36 PM: I was dxed and had at least 6 weeks before sugery. They gave me casodex and Lupron
Warren in Edmonton (to Everyone): 7:24 PM: I have a small emergency at home and I must leave the meeting. Merry Christmas to all.
Len Sierra (to Everyone): 7:45 PM: Soy might lower the risk of other cancers
Studies among prostate cancer survivors indicate that eating soy foods may lower PSA levels. Among men in various stages of prostate cancer, those who consumed soy milk or isolated soy isoflavones saw their PSA levels rise at a slower rate. Source for my post: www.nutritionfacts.org
Alan Moskowitz (to Everyone): 7:48 PM: Regarding Enza vs Abi – my MO at MSK said “As for abi vs enzalutamide, as we discussed, never been compared head to head though my feeling is enzalutamide is a bit more active. Though they work differently, both have very high response rates up front but much lower when the other has already been used. In “switching” trials, enza has higher response rate after abi than abi after enza. To me, this doesn’t mean starting with abi is better. It’s just consistent with enza being the more active drug (easier to become abi resistant than enza resistant). But overall, it’s a tossup and I give abi to more elderly and frail and enza to younger and healthier. Essentially no difference between enzalutamide and apalutamide.”
Alan Moskowitz (to Everyone): 7:49 PM: I have to leave, thanks for the guidance.
AnCan – rick (to Everyone): 7:49 PM: Alan – this NOT about head-to-head; it’s about sequencing
John Antonucci (to Everyone): 8:02 PM: will they give a 2nd booster?
Len Sierra (to Everyone): 8:04 PM: They will give a second booster to immunocompromised folks.
Cal Van Zee (to Everyone): 8:12 PM: My blood pressure peaked at 200/100 on prednisone on 50mg Losartan w/o diruetic. After changing to dexamethasone, BP dropped to normal and I stopped Losartan.
Cal Van Zee (to Everyone): 8:17 PM: 120/80 or below: for me it was the Prednisone, not the AbiI’m still on Abi now but my PSA is rising now at 19. Most likely starting chemo first week of Jan
Jerry Pelfrey (to Everyone): 8:19 PM: Sorry I have to leave. Have a Great Christmas!
Julian Morales-Houston (to Everyone): 8:24 PM: Merry Christmas to all!
Stan Friedman (to Everyone): 8:24 PM: Merry Christmas!
