Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 7, 2022
It’s diet coke, spam and bacon wrapped twinkies for our meeting this week!
Next week’s meeting will be on Tue, March 21. That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights! Almost done with this crazy schedule. Come April, we are back to a normal schedule – 1st & 3rd Monday at 8pm, and 2nd & 4th Tuesdays at 6pm – all Eastern. All AnCan’s groups are free and drop-in – join us in person sometime!
Editor’s Pick: Recurring themes throughout this week – QoL and treating older Gents, heart/BP issues + old faves like Provenge, Lu177, immunotherapy and intermittent HT (rd)
Topics Discussed
Best treatment for asymptomatic 94 yr old with heavy tumor buruden; melatonin?;resumption after IHT; changing diet and exercise may have brought results; should clinical trials precede FDA approved Tx; Provenge vs newer immunotherapies; “How not to die” diet; switching HT regimen; William Hurt – alternative medicine; darolutamide/Nubeqa works; you can delay initial Tx for int/hi-risk PCa; ‘direct heart risks; more heart chat and older men discussions; are ttrial stes playing G-d with Lu177 patient selection; obtaining darolutamide … & Provenge.
Chat Log
6:08 PM Mike A to Everyone: i received the 4th covid shot in Seattle. Anyone being treated for cancer at UW hospital qualifes
6:22 PM Julian Morales-Houston to Everyone: Just saw Dr E today!
6:26 PM Joe Gallo to Everyone: Dr. Eleni Efstathiou Medical Contact details eefstathiou@houstonmethodist.org
6:29 PM Julian Morales-Houston to Everyone: her office: 346-238-4496; clinic: 713-441-9948
6:31 PM John Antonucci to Everyone: quite a few articles on melatonin and PCa actually. I haven’t read any yet
6:35 PM AnCan – rick to Everyone: Hi Gents …. am in DC to lobby for AUA. Have a reception but will be back in about 45′
6:44 PM Julian Morales-Houston to Everyone: HCTZ
6:45 PM AnCan – rick to Everyone: I could not tolerate HCTZ when they first put me on it with lisinopril. Been on lisinopril alone for more than 11 years. Very low dose.
6:46 PM AnCan – rick to Everyone: Guys …. gootta run fo rthe last 45′ of this networking reception
6:46 PM Herb to AnCan – rick: I’m having trouble with amlodipine edema.
6:46 PM Len Sierra to Organizers:m Ciao, Rick!
6:47 PM Julian Morales-Houston to Everyone: For BP I am on losartan/HCTZ 100/12.5 + Amplodine+Bystolic 10 MG
6:50 PM Mike A to Everyone:m thanks everyone, need to drop
6:56 PMLen Sierra to Everyone: MSI – Microsatellite Instability
7:00 PM Michelle G to Everyone: How do you know what biomarkers you have?
7:00 PM Len Sierra to Everyone: You ask them to do genetic testing, Michelle.
7:01 PM John Antonucci to Everyone: PSA is a biomarker. Genetic ones are detected with germline and somatic gene testing.
7:01 PM Michelle G to Everyone: Thanks Len. We had that, I believe. So if they didn’t identify one, then he doesn’t have a specific biomarker?
7:04 PM Joe Gallo to Everyone: Do you mean DNA variant(s) eg. BRCA2 vs. biomarker? Biomarkers are tests.
7:08 PM John Garbin to Everyone: Does anyone know what William Hurt prostate cancer status was when he was diagnosed in 2018? Media said it was terminal prostate cancer in 2018 and he passed away this week
7:09 PM Pat Martin to Everyone: I heard he had mets to his bones when Dxed
7:09 PM John Garbin to Everyone: thanks
7:11 PM Michelle G to Everyone: Someone had said that immunotherapy is good only if you have certain biomarkers, so I was just repeating that word
7:11 PM Carl Forman to Everyone: William Hurt was stage 4 with bone metastisis
7:12 PM: Michelle G to Everyone: William Hurt didn’t want to do traditional chemo. He did something called SEF chemo–side effect free. SEF chemo has not been peer reviewed
7:13 PM Len Sierra to Everyone: Guess it didn’t work, Michelle. : (
7:13 PM Michelle G to Everyone: Exactly
7:15 PM Michelle G to Everyone: We have to go. Thanks everyone
7:26 PM John Garbin to Everyone: Thanks Guys..have to go to meeting…Ciao
7:50 PM George Rovder Arlington VA to Everyone: Thank you Len, all Organizers, and all friends.
7:51 PM Ben Nathanson to Everyone: Thank you, George
7:53 PM Frank Fabish – Ohio to Everyone: Got to go guys.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 7, 2022
(Got it out early this week, ahead of travelling!)
We’ve all been waiting for Ben’s debut, and here it is on an almost record night with 57 particpants! He does a great job, ably supported by our Moderator Team.
Next week’s meeting will be on Tue, March 15. That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights! Almost done with this crazy schedule.
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/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Using the same 2nd line anti-androgen for 3 or 4 years may be controversial; chopping and changing Tx can keep the cancer off balance (rd)
Topics Discussed
Newbie leads us to discuss long term use of 2nd line Anti-androgens; chop and change can keep cancer off guard; Medicare coverage; another low PSA, high Gleason at Dx; neurosurgery in short order puts Lu177 PSMA on hold; depression and anxiety more common than you think – best meds?; there’s a Hopkins multi-disciplianry clinic – but only for newly diagnosed seeking a treatment path; should you fast pre-chemo?; ask for Dr. Wassersug’s HT bible; new Canadian Advanced PCa Group starts soon; what’s causing weight swings; be sure to taper off steroids; Lu177 PSMA showing great results
Chat Log
William Franklin (to Everyone): 6:09 PM: Richard, we wish you and your wife the best and a speedy recovery.
AnCan – rick (to Organizer(s) Only): 6:17 PM: she’s a GU med onc
AnCan – rick (to Organizer(s) Only): 6:28 PM: Herb/Len/Peter …. is BRCA more common in African Americans??
Len Sierra (to Organizer(s) Only): 6:28 PM: Not sure.
AnCan – rick (to Organizer(s) Only): 6:36 PM: It was raised in the meeting I was in last week. Suggested that AA’s had higher incidence. I asked.
AnCan Herb (to Organizer(s) Only): 6:40 PM: This was in an ASCO abstract: In conclusion, we observed a significantly higher rate of BRCA1/2 in the African American population when compared to non-Ashkenazi Jewish Caucasians.
AnCan – rick (to Organizer(s) Only): 6:42 PM: Tx Herb
Richard Wassersug (to Everyone): 6:52 PM: Thanks!
Frank Fabish (to Everyone): 7:00 PM: Thank you guys. Got to run.
AnCan – rick (to Everyone): 7:04 PM: SVI must have been treated Richard
AnCan – rick (to Everyone): 7:07 PM: This must be our guy. What a horrible thing to happen ….. that can bring on disease for sure. Hearts go out to him.
James Miller (to Everyone): 7:16 PM: Okay
Jimmy Greenfield (to Everyone): 7:28 PM: Neither of those drugs are opiates!
C Huerta (to Everyone): 7:28 PM: Ok. Thanks for the update. Only the Xanax is a controlled substance.
AnCan – rick (to Everyone): 7:35 PM: Gents ….. FYI Dr. John is a psychiatrist …. and here as a peer.
AnCan – rick (to AnCan Herb): 7:36 PM: My peach is 75mg and the grey is 37.5
AnCan Herb (Private): 7:37 PM: According to the information I have the white is 225 extended release
Stephen Saft (to Everyone): 7:49 PM: I did a fast mimicking diet called Prolon. It worked well for me.
C Huerta (to Everyone): 8:01 PM: The “fasting”/calorie restriction before and after chemo was published by UCSF. The goal was to limit the side effects of chemo.
George Rovder Arlington VA (to Everyone): 8:01 PM:Androgen Deprivation Therapy Publisher : Demos Health
James Miller (to Everyone): 8:01 PM: I have to go now Thank you all for inviting me.
C Huerta (to Everyone): 8:02 PM: I heard about it in 2016, unfortunately after my chemo, so no anecdotal nformation from me. Got to go.
Stephen Saft (to Everyone): 8:12 PM: good night. Very tired.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 1, 2022
AnCan was honored by the GU ASCO 2022 Conference in mid-Feb, where we pesented our abstract and poster. You can see just how effective our support groups (and recordings!) truly are: https://ancan.org/ancan-recognized-by…
If you missed Dr. Rachel Rubin’s excellent webinar on Intimacy and Sexual Dysfunction, watch the recording at https://ancan.org/webinar-cancer-chro… Next week’s meeting will be on Mon, March 7. 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: Wot a session – we covered everything! You choose this week … and leave a comment (rd)
Topics Discussed
How reliable is C-11 acetate scan?; Pylarify locations; where do you find PSMA protein?; brain fog from enzalutamide; ARASENS trial; Lyrica for sciatica?;shower safety; postural hypotension; Ssign up for ZERO Summit; PROPEL trial – abi + olaparib/PARP-I; PARP vs anti-PD1; cardio-oncology issues and presentation; abscopal effect may improve PARP-I; finally something works WELL – cabazitaxel + carbo; anemia and Procrit; resuming abi may have worked; prednisone vs dex with abi
AnCan – rick (to Everyone): 4:50 PM: Postural Hypotension
Dennis Correia Arizona (to Everyone): 4:53 PM: Leaving the meeting early for another meeting this evening. Great discussion among the regulars tonight.
Len Sierra (to Everyone): 4:54 PM: Frank, I think you’ll find this little book very helpful for low back in general. It’s called, Treat Your Own Back. It’s very inexpensive.
Tumor responses improved following a steroid switch from prednisone to dexamethasone in castration-resistant prostate cancer patients progressing on abiraterone:
Conclusions: Durable PSA responses occur in up to 40% of patients following a ‘steroid switch’ for PSA progression on abiraterone and prednisone. Studies are ongoing to elucidate the mechanisms underlying this response.
Jerry Pelfrey – Mexico (to Everyone): 5:50 PM: got to go my son called
George Rovder Arlington VA (to Everyone): 5:55 PM: Thank you Peter and all
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 21, 2022
AnCan was honored by the GU ASCO 2022 Conference last week, who accepted our abstract and poster. You can see just how effective our support groups (and recordings!) truly are: https://ancan.org/ancan-recognized-by…
Next week’s meeting will be on Tue, March 1. 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: Both new men this week are under 60; listen to their stories! (rd)
Topics Discussed
Younger man with challenging disease tries to find best Tx; lung nodules pose issue for another younger man; side effects of Lu177 PSMA; germline vs Somatic testing and teh PROMISE trial (link below); IHT brings some relief; survival stats; is joint pain a comorbidity of ADT?; bone density; low T? Get a complete testosterone work up.
Chat Log
George Rovder Arlington VA (to Everyone): 6:12 PM: rd@ancan.org
John Ivory (to Everyone): 6:34 PM: PUBLIC SERVICE ANNOUNCEMENT: Our guest this month for Solo Arts Heal has played a role that will be familiar to many of you: a family caregiver. Barbara Dyskant cared for a former member of this group whom some of you might remember, her husband Barry Miller (who unfortunately passed away in 2020). Earlier, she cared for her daughter who survived two years on chemo for leukemia (now undetectable). She’ll be playing original songs; Rick Davis will host. Please join us at 10:30 p.m. ET/7:30 p.m. PT https://themarsh.org/soloartsheal/
Paul Freda Florida (Private): 6:34 PM: Ric Tall Allen has a new post that says there is data that Vitamin D6 can CAUSE make cancer MORE likely. Very unusual. You might want to check that out. … JFYI … Saw it on Healthunlocked …… “Actually, those toxicities are quite common. High Vitamin D pulls calcium out of bones and causes osteoporosis. We just saw, in the D-Health trial, there was a 24% increase in cancer among those taking high amounts of Vitamin D for years.”
AnCan – rick (to Paul Freda Florida): 6:39 PM: D3 or B6 Paul
Paul Freda Florida (Private): 6:41 PM: I believe it said just Vitamin D. He added that some dairy and a bit of sunlight is all you need to avoid ricketts.
John Ivory (to Organizer(s) Only): 6:41 PM: https://www.inova.org/doctors/jeanny-b-aragon-ching-md
Paul Freda Florida (Private): 6:43 PM: Like most things, there are limits. For example, I believe my kidney stone last year was due to my excessive consumption of Vitamin C. I follow Dr Linus Pawling’s advice. Just learned about that danger recently.
AnCan – rick (to Paul Freda Florida): 6:43 PM: Not really new news, Paul. You have to regulate your D intake to lep it at the right leve. I don’t read Health Unlocked. Not sure thre is anything here that is new to us …… check with Len. Suggest you bring it up …
Paul Freda Florida (Private): 6:45 PM: Reluctant to put a scare in to everyone with so little information. One study.
AnCan – rick (to Paul Freda Florida): 6:49 PM: allow the moderators to decide ….
AnCan – rick (to Everyone): 6:59 PM: Sean Collins at Georgetown
George Rovder Arlington VA (to Everyone): 7:00 PM: Dr. Sean Collins Website:
George Rovder Arlington VA (to Everyone): 7:01 PM: https://www.medstarhealth.org/doctors/sean-philip-collins-md-phd
Frank Fabish (to Everyone): 7:02 PM: Guys I need to cut out early. Early appt tomorrow
Pat Martin (to Everyone): 7:35 PM: How long has Sylvester been fighting the beast?
Len Sierra (to Everyone): 7:37 PM: Sylvester had low risk PCa and I believe he is cured.
Sylvester Mann (to Everyone): 7:37 PM: twenty-two years.
AnCan – rick (to Pat Martin): 7:37 PM: Sylvester nailed his disease with RT on recurrence and has durable remission
Len Sierra (to Everyone): 7:38 PM: Yay Sylvester!!
John Ivory (to Organizer(s) Only): 7:39 PM: If you haven’t exercised in a while, you’re also likely to have joint pain until you’re stretched out a bit
John Ivory (to Everyone): 7:39 PM: If you haven’t exercised in a while, you’re also likely to have joint pain until you’re stretched out a bit
John Ivory (to Organizer(s) Only): 7:44 PM: Wouldn’t Men Speaking Freely be good for Tony The Boss?
John Ivory (to Everyone): 7:53 PM: https://ancan.org/men-speaking-freely/https://ancan.org/men-speaking-freely/
Rich Jackson (to Everyone): 7:54 PM: Next ‘Speaking Freely’ will be March 17, 8pm EST. To connect, use the same link as got you here. Non-Technical call, men only, any serious disease (mostly prostate cancer men show up).
Rich Jackson (to Everyone): 7:56 PM: Thank you John Ivory.
Pat Martin (to Everyone): 7:57 PM: Doesn’t BAT encourage testosterone in cycle?
Chris Carrino (to Everyone): 7:58 PM: Any one try the new Orgovyx ADT? First timer. I’ll be up and running next week with video/audio
John Ivory (to Everyone): 7:58 PM: Sorry Rich–didn’t see you among all the faces here–you would have better described your meeting!
AnCan – rick (to Everyone): 7:59 PM: Chris – we have several men on Orgovyx tonight
John Ivory (to Everyone): 7:59 PM: @Chris Carrino–I’ve been on Orgovyx for a year. Has worked as well as leuprolide and no painful injections
Joe Gallo (to Everyone): 7:59 PM: Hi Chris, I started on Orgovyx last year.
Peter Kafka (to Everyone): 8:00 PM: A number of us have tried and still using Orgovyx. Join in at the next meeting and discuss. Next meeting will be Tuesday, March 1st at 6 pm Eastern time.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 15, 2022
AnCan will remember our beloved Moderator, Tech Guru, FB Manager and buddy, Jake Hannam on Feb 20 @ 6pm EST. All are welcome – drop-in. NB It will be on Zoom not our virtual rooms – Zoom link: https://zoom.us/j/6516459299
Next week’s meeting will be on Mon, Feb 21. 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!
Editor’s Pick: Many watching this video live with disease anxiety – let’s talk about it. This will be a 2022 focus for AnCan (rd)
Topics Discussed
Second guessing your primary QB … tiime for a change?; learning about chemo; Dr.E hits another home run; where to get RT close to home – hypofractions?; diet and nutrition; let’s talk anxiety??; laxatives during chemo; is sugar really that bad …?; heart related issues during treatment; calcium levels and serum calcium. Along the way we also discuss leg cramps, opiates and sexual dysfunction.
AnCan – rick (to Everyone): 4:08 PM: Sun Feb 20 6.00 pm
AnCan – rick (to Organizer(s) Only): 4:17 PM: Another low PSA G9
AnCan – rick (to Organizer(s) Only): 4:28 PM: He was CSPC for a short ime – he got Provenge in 2016, 5 yrs ago
Carl Forman (Private): 4:31 PM: Dr Wyse at NYU Langone is his second opinion Carl Forman (Private): 4:36 PM: Sorry for the misspelling for Dr David Wise
Pat Martin (to Everyone): 5:00 PM: One big help when going thru radiation was getting nutritionist involved to help with digestive problems
Len Sierra (to Everyone): 5:01 PM: Good suggestion, Pat!
Chick Lindsay (to Everyone): 5:14 PM: Thanks for the help on selecting radiation oncologist. Most helpful.
Stan Friedman – Stamford, CT (to Everyone): 5:25 PM: sorry. I need to leave. stay safe.
Pat Martin (to Everyone): 5:28 PM: Flax meal…with a lot of water. Dried cherries is great.
Bill Bradford (to Everyone): 5:41 PM: Great meeting guys – thanks for sharing. I have to leave a bit early.
