Hi-Risk/Recurrent/Advanced PCa Video Chat, May 16, 2022
Two upcoming events to mention first ….. Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer with Drs. Stacy Loeb (NYU) and Justin Gregg, Tue, May 31 @ 8.00 pm Eastern. Register at https://register.gotowebinar.com/register/4324977789022538512
It Ain’t Your Grandpa’s BPH with Dr. Steve Kaplan (Mt. Sinai, NYC) Wed, June 1 at 8.00 pm No registration required – just join live https://www.gotomeet.me/AnswerCancer We’ll be talking all issues around frequency, urgency, nocturia and more. Send your questions to joeg@ancan.org
AND – if you’re a Vet, watch this space. AnCan will be launching a new Vets Group to help navigate medical care. It is not exlclusively prostate cancer, so tell Vet friends. 4th Thursday starting June. If you want to sign up please write Group Leader Joe Gallo joeg@ancan.org.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings 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: Lotsa folks and topics – but save the best til last when a Care Partner gives her perspective(rd)
Topics Discussed
Denovo Mx G5+5 calls for triple line attack; handling a recent hi-risk Dx; PSA rise leads to consult with Dr. E; blood clots in bladder down to RT cystitis?; Mod’s lung nodules need Bx; starting IHT after 4 yrs; abi should not prevent Provenge; letting PSA rise for PSMA scan; do low dose steroids impact muscle strength?; darolutamide approved by Bayer; Ac225+Lu177 started; PSA eventually turns down post spot RT; post Brachy +IMRT maybe a PSMA?; enlarged gland post SBRT??; Care partner offers her perspective
Chat Log
Peter Kafka – Maui (to Organizer(s) Only): 5:23 PM: I spoke to Blue Earth a month ago or so and they did not offer Axumin on the Islands at that time. The Ga68 “kit” just came to Honolulu but it is not yet up to speed in terms of reading results according to my oncologist.
AnCan – rick (to Organizer(s) Only): 5:27 PM: Peter – that can’t be correct. There is software immediately available to read the Pylarify scan now.
Peter Kafka – Maui (to Organizer(s) Only): 5:29 PM: That is what my local oncologist told me last week when I met with him. Also my local Rad onc said it is only the Ga68 scan and that is very recent.
Ravi (to Everyone): 5:33 PM: how come no one is talking of radiation
Stephen Saft (to Everyone): 5:34 PM: Isn’t the most urgent thing for Bruce to do is to see a GU oncologist
Jeff Marchi, San Francisco (to Everyone): 5:35 PM: PROMISE is Open to All Prostate Cancer Patients Patients in any stage of treatment or survivorship are invited to join PROMISE.
AnCan – rick (to Everyone): 5:35 PM: Ravi – He’s denovo metastatic …… and he is being seen by a urologist. Radiation should follow ….
eric (to Everyone): 5:35 PM: It was alot of info for bruce make sure he can review this call
Jeff Marchi, San Francisco (to Everyone): 5:36 PM: that quote is from the promise site https://prostatecancerpromise.org for free dna test for prostate cancer to find dna problems
Henry (to Everyone): 5:43 PM: have to run; thanks everyone
AnCan – rick (to Herb Geller): 5:43 PM: mostly BRCA 2 actually Herb
Ori (Private): 6:03 PM: What is the name of the drug that you mentioned which is used to treat people with the BRCA gene
AnCan – rick (to Ori): 6:06 PM: the drug class is PARP-I; there are several drugs – olaparib, rucaparib, niraparib,talozaparib and more.
Stephen Saft (to Everyone): 6:08 PM: I have a friend who has several had UTI as well as 2 clots. I think he was diagnosed in 2018.
John Ivory (to Everyone): 6:12 PM: I had blood in my urine 1.5 – 2 years after 40 rounds of radiation, but it only lasted for a day or two. Cystoscopy showed nothing. Haven’t had it again. No pain in urination for me.
AnCan – rick (to Everyone): 6:14 PM: Must have happened to me at lest 5 or 6 times post RT – some at least 5 + yrs out. No pain
AnCan – rick (to Everyone): 6:17 PM: Wed June 1, 8.00 pm Eastern Dr. Steve Kaplan, AnCan Barniskis Room. We’ll be talking BPH, urgency, frequency. Bring your questions.
Joe Gallo (to Organizer(s) Only): 6:18 PM: It’s a drop-in First Wednesday meeting at 8 p.m. EST on Wednesday, June 1. Go here for directions to the Barniskis Room to attend the free program, featuring BPH guru, Dr. Steven Kaplan: https://ancan.org/groups/joining-instructions/ Mark it on your calendar.
John Antonucci – CT (to Everyone): 6:25 PM: 3 cm is correct
Peter Kafka – Maui (to Organizer(s) Only): 6:27 PM: My buddy Mark who was on our call 3 weeks ago or so had a lung mass show up on his CT scan. Biopsy showed “lung” cancer on top of his recently diagnosed GL-9 PCa. So he is riding the rails right now. Trying to push him off the Islands but he may stay here. Low spirits!
Ben Nathanson (to Everyone): 6:31 PM: Thanks, Frank and Alan — and Rick
Alan Moskowitz (to Everyone): 6:32 PM: Rick and others, did any of you have clots that caused a total urinary blockage, or was it just “minor’ bleeding?
AnCan – rick (to Everyone): 6:34 PM: Minor bleeeding for me
John Antonucci – CT (to Everyone): 6:35 PM: Alan, my brother had the same painful bloody blockage and clots. This was before his prostate CA diagnosis. Had 2 awful ER visits. No final explanatiion! No recurrence since–4 years. No history of radiation, though that might be the most likely for you.
Alan Moskowitz (to Everyone): 6:35 PM: Thanks John and Rick.
John Antonucci – CT (to Everyone): 6:39 PM: From my interaction checker—-prednisone decreases the effect of Provenge. not an absolute contraindication.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 26, 2022
BREAKING NEWS …. AnCan launches 2 new groups in April – Lupus and Pancreatic Cancer. Find more information on our website https://ancan.org under Groups menu tab.
And coming in May …. a Vets Prostate Cancer Group and Chronic Pain Group.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about this and our other 11 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:Perhaps enzalutamide/Xtandi is causing balance issues … sound familiar? And at the end – finding Pluvicto NOW (rd)
Topics Discussed
Peter K manages his own meds; pain issues from AUD; calcium & Vit D; Pluvicto vs Ac225+Lu177; denovo Mx man needs better guidance; balance issues & enz v daro; great report on UCSF’s GU med onc Dr. Borno; Pluvicto fails to hold chemo-naive man; long-term participant thinks about adding treatment
Chat Log
Herb : 3:24 PM: Len sent an e-mail that his eyes are dilated and filled with a dye so he can’t read the screen.
George Rovder Arlington VA (to Everyone): 4:03 PM: https://faculty.mdanderson.org/profiles/patrick_pilie.html
Peter Kafka – Maui (to Everyone): 4:04 PM: Dr. Pilie – Duke Medical school, He is a genitourinary med onc at MD Anderson
George Rovder Arlington VA (to Everyone): 4:05 PM: 2015-2018 Clinical Fellowship, Medical Oncology, The University of Texas MD Anderson Cancer Center, Houston, TX Assistant Professor, Department of Genitourinary Medical Oncology, Division of Cancer Medicine, The Univ. of Texas MD Anderson Cancer Center, Houston, TX
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
On Wednesday, March 23 of this past week, the FDA finally approved Lutetium 177 PSMA 617 for treatment of PSMA (prostate specific membrane antigen) sensitive metastatic castrate resistant prostate cancer (mCRPC). The ligand, lutetium Lu 177 vipivotide tetraxetan, has a commercial name of Pluvicto, and is made by Advanced Accelerator Applications, a subsidiary of Novartis. Novartis is an AnCan sponsor – they have not asked us to make this post.
Pluvicto delivers the radionuclide agent lutetium to cells expressing PSMA . According to Dr. Jeremie Calais at UCLA, “The PSMA-targeted radioactive agent preferentially atttaches to cancerous cells, not the normal tissues”.
You can read the Novartis press release here, and an independent review from Prostate Cancer Foundation here.
The approval left a lot of open questions, several of which AnCan was able to answer when we spoke with AAA on Friday. There are a couple of quirks in the approval and availability.
Use of Pluvicto (Lu177 PSMA 617) is post-chemotherapy
Use requires a Ga68 PSMA 11 scan – not Pylarify. AAA received a companion approval for Locametz, a kit that makes that scan widely available. It is not clear if a previous Pylarify scan will be grandfathered
There is no Medicare pricing agreement as yet
All the managed access trial sites have now been closed. Each hospital will now have to approve local use itself – Hopkins, by way of example. has indicated this could take months. AAA has suggested the following sites may be ready to treat immediately:
University of Chicago
Tulane
Mount Sinai, NYC
UCLA
In the interim AAA Patient Connect is geared up to provide financial assistance. It can be reached via the number on https://pluvicto.com 844 638 7222
For a good indicator as to where Pluvicto could soon be available, you can check the sites where AAA’s Lutathera, a lutetium treatment for certain neuroendocrine cancers, is available. https://www.lutathera.com/find-a-treatment-site/
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.
