Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 12, 2022
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: We are talking lots of appetite, diet and exercise to manage ADT & chemo this week (rd)
Topics Discussed
Appetite issues; enz and dizzy spells; ARASENS darolutamide trial; hot flashes … again; creeping up on darolutamide ; PSA testing – to how many decimal places?; 2 men consider mitigating ADT with exercise and more; not all PCa in same man makes PSMA; Pluvicto continues to bring PSA down
Chat Log
Marc Valens (to Everyone): 3:23 PM: Try Larabars. No added sugar, just fruit and nuts
AnCan Herb (to Everyone): 3:38 PM: Enzalutamide can cause hypertension, but no information on postural hypotension
Len Sierra (to Organizer(s) Only): 3:40 PM: From RxList website: Stop using enzalutamide and call your doctor at once if you have: dizziness, spinning sensation; a seizure (black-out or convulsions);
AnCan – rick (to Organizer(s) Only): 3:43 PM: Len – that’s the concern around it causing seizure
AnCan – rick (to Everyone): 3:44 PM: ARANOTE and ARASEC
James Barnes (to Everyone): 4:43 PM: I also was on Enzalutimide and could not tolerate the anxiety and brain fog. I have been doing much better on Aberaterone for the past 6 months.
Frank Fabish – Ohio (to Everyone): 4:45 PM: Hey guys got to go. Thanks for your input. See you next Monday.
Jim Ward (to Everyone): 5:08 PM: Gotta run, gents. Good night!
Len Sierra (to Organizer(s) Only): 5:12 PM: G’night, Gents.
Peter Monaco (to Organizer(s) Only): 5:17 PM: Good evening gents!
John Birch (to Everyone): 5:17 PM: Great news on the numbers Dennis! Need to go, thanks everyone!
AnCan Herb (to Everyone): 5:18 PM: I gotta go. For those celebrating Passover, I hope you enjoy your Seder. And then for those celebrating Easter, all the best.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 4, 2022
Next meeting will be on Apr 12, 2022.
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: Heads up for a marathon session this week. And we keep returning to 2 topics …. intermittent hormone therapy (IHT), and of course Pluvicto (rd)
Topics Discussed
original low Gleason progresses to advanced PCa over 21 yr period; do you buffer on resuming IHT; Epstein reclassifies 3+3 to 5+4 with treatment implications; weighing time to Pluvicto availability with a trial now; stay with chemo or shift to Pluvicto?; Herb’s last man under the wire; starting darolutamide (Nubeqa); how long before testosterone returns?; after 5 yrs it’s time for IHT; side effects from chemo; post-Pluvicto – abi, Provenge, or …? ; alternative advanced disease markers; scan concordance is important for Pluvicto; vertebral fracture with advanced PCa may have implications.
Chat Log
Peter Kafka – Maui (to Everyone): 5:23 PM: Has the doctor suggested a PSMA scan while the PSA was up?
Len Sierra (Private): 5:39 PM: Rick, I’ve actually been on complete drug holiday since Jan. 12 of this year, so almost 3 months now. No Lupron, no daro.
Stephen Saft (to Everyone): 5:42 PM: my doctor told me it wouldn’t get approved but I fought for a long time and finally got him to put it through. It was approved and I had the Pylarify PET scan on March 4.
John Birch (to Everyone): 5:58 PM: Stephen, why the the doubt on insurance approval? Thats the isssue I am running into.
Frank Fabish – Ohio (to Everyone): 6:00 PM: Amir Mortazavi at OSU James Cancer Hospital
Stephen Saft (to Everyone): 6:00 PM: That is a very good question. I don’t know. I think the old school thinks that it won’t change treatment so the oncologist doesn’t like the idea.
Len Sierra (to Everyone): 6:23 PM: Steve, the half life of Ac-225 is 10 days and it takes 5 half lives to clear 95% of a drug, so you’re looking at 50 days of washout.
George Rodriguez-Chantilly VA (to Everyone): 6:29 PM: Rick, I need to drop off. Very informative. I’ll reach out later to get some information on what to expect with hormone treatment of Yonsa w/methylprednisolne in concert with Eligard.
Frank Fabish – Ohio (to Everyone): 6:29 PM: Rick I have to go. I have my 3 month check up and blood draw tomorrow. I’ll let you know results.
Ben Nathanson (to Organizer(s) Only): 6:30 PM: Len, aren’t these different half-lives? Isn’t drug clearance a function of pharmacokinetic half-life, not radioactive half-life?
AnCan Herb (to Organizer(s) Only): 6:31 PM: The biological half life is much faster. The unbound compound is excreted, and then the bound drug disappears with its half life. It is a two compartment model
Ben Nathanson (to Organizer(s) Only): 6:31 PM: Right, so less than 50 days
Len Sierra (to Everyone): 6:32 PM: Ben, I believe the greater concern would be the radioactive half life since that is the toxic payload.
Ben Nathanson (to Organizer(s) Only): 6:32 PM: But if it’s out of the body faster than that, it doesn’t matter if it’s still radioactive
Tony D’Errico – Cornwall, Ontario (to Everyone): 6:35 PM: I will see you all soon. bye for now.
Len Sierra (to Everyone): 6:35 PM: I guess we’ll have to consult with a nuclear medicine doc on this..
Ben Nathanson (to Organizer(s) Only): 6:45 PM: Herb, this video? “Lymphocytes as a “Living Drug for the Treatment of Cancer” and Emergence of the NIH cGMP Program to Support Patient Care Innovation” from 3/30?
AnCan Herb (to Organizer(s) Only): 6:46 PM: Yes, that should be it
Ben Nathanson (to Organizer(s) Only): 6:46 PM: Thanks!
John Birch (to Everyone): 7:08 PM: Thanks to all. Need to run apparently tornados are landing in the area.
David Muslin (to Everyone): 7:12 PM: Going to bed. See ya next week.
Stan Friedman (to Everyone): 7:23 PM: Good night. See you next week.
Mark Baldridge – Seattle (to Everyone): 7:57 PM: Thank you everyone for such good information – Kathy and Mark
Len Sierra (to Organizer(s) Only): 7:57 PM: Got to go, Gents. See ya next week.
George Rovder Arlington VA (to Everyone): 7:59 PM: Thank you all. Goodnight. George
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!
On March 23rd, we had the pleasure of hosting Solo Arts Heal with special guest, Twinkle Burke!
Twinkle is an Actor/Writer from New York City. She is equally comfortable on stage and screen and writing in different genres and styles. Her work has been performed with TMI Project, The Actors Studio Playwright and Directors Workshop, Lift Every Voice: Black Women Speak Festival, and The Drawing Board to name a few. She can be seen in various independent films and on TV in various shows, including Season 3 of HBO’s SUCCESSION. She plays “Eugenia” in Colin West’s latest film, LINOLEUM premiering at the SXSW Festival in March of 2022. She is an avid proponent for using the arts to learn, heal, and grow.
In this SAH, Twinkle performed a piece telling how she used her craft of acting to sustain herself while miscarrying her child.
Watch the performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
In March, we had Dr. Pamela Munster(UCSF Helen Diller Family Comprehensive Cancer Center, and AnCan Advisory Board Member) give a talk to our AS group titled “Novel Strategies to Treat Prostate Cancer”
There were discussions about an exciting new treatment for Prostate Cancer in the works, plus hear from the AS community about anxiety, finding the right medical team, and how relationships impact stress levels in this special presentation.
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.
