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.
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 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/
Editor’s Pick: Conflict of Interest …. we are all too familiar with community docs with another agenda. But what about Center of Excellence practitioners who push to fill their trials? (rd)
Topics Discussed
Disease recurs some 10 yrs after PBRT Tx; IHT and heart issues; drug insurance appeals by your doc; general med onc reacts too slowly; clinical trial conflict of interest; ABC man caves to chemo; PSMA scans and concordance w. FDG; 3000 PSA at Dx and still undetectible; statins make a difference; once finally found, RT nukes the spot.
Chat Log
Larry Fish (to Everyone): 6:31 PM: who tells him this – what a dummy doctor
Alan Moskowitz (to Everyone): 6:38 PM: Is Embr covered by Medicare? Or is it still in clinical trial?
James Barnes (to Everyone): 6:41 PM: I received a Embr for Xmas and I am now a fan!
Len Sierra (to Everyone): 6:46 PM: Alan, as far as I can tell, it is not covered by Medicare, but one of the many guys in our group who has one should answer this question for you!
Jeff Marchi (to Everyone): 6:53 PM: I have 2 Embr devices and have gone from 8+ hot flashes a day to 0 or 1 a day
Len Sierra (to Everyone): 6:54 PM: Jeff, does Medicare cover it?
Jeff Marchi (to Everyone): 6:54 PM: not as far as I know
Alan Moskowitz (to Everyone): 6:56 PM: Jeff, thank you.
George Rovder, Arlington VA (to Everyone): 7:09 PM: Dr. Paul Leger, GU Medical Oncologist at Georgetown Lombardi Center of Excellence is solid.
Mike (to Everyone): 7:14 PM: Thank you
Ted Healy- Portland, OR. (to Everyone): 7:14 PM: Could Peter’s insurance cancel his policy if they did not approve the meds?
AnCan Herb (to Everyone): 7:24 PM: People are suggesting Germany for lutetium and I am certainly aware of it. Howard Scher says he has set people there. And the cost is not prohibitive.
Len Sierra (to Organizer(s) Only): 7:27 PM: Herb, before you do that, get a PSMA scan and an FDG scan here in the U.S. to see if you are a good candidate for Lu-177. Technetium 99M
AnCan – rick (to Organizer(s) Only): 7:29 PM: We’ve been trying to get him to Elizabeth Guancial for 12 months.
Len Sierra (to Organizer(s) Only): 7:31 PM: Rick, unfortunately, she has moved away from GU for men over to GU oncology for women. She wanted to set me up with a new PA so I went to Dr. Oh via Telehealth. I hate to lose her. I thought she was super.
AnCan – rick (to russell hoover hudson florida): 7:37 PM: Russ – Guancial no longer seeing GU men; only GU women. Len just told me. Focus on Moffitt
Jim Greenfield (to Everyone): 7:46 PM: Thanks George! Wasn’t she great?
Frank Fabish (to Everyone): 7:46 PM: Got to go. Goodnight.
John Birch (to Everyone): 7:55 PM: Thanks everyone, need to go. Keep fighting!
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
