Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 1, 2022
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/
Editor’s Pick: Chemo robs him of breath — but he’s determined to work through his bucket list. (bn)
Topics Discussed
PSA of 3.1 to drops to 1.5 after darolutamide; who gets darolutamide for free?; on chemo and struggling to breathe; how often should I request sequencing?; why can’t my tumor be spot-radiated?; get sequencing on a rare testicular metastasis; PSMA PET at 0.2?; establishing formal qualifications for PSMA PET interpretation; another report of major fatigue on darolutamide — but maybe it’s a drug interaction; expat’s sticker shock at U.S. drug pricing; radiation fatigue can’t stop his climbing trip; break for a little toilet humor; interpreting a p53 mutation; a pharmacy offering lower-cost drugs; is bone biopsy as painful as they say?
Chat Log
David Muslin 6:40 PM Cancer genome sequencing is the whole genome sequencing of a single, homogeneous or heterogeneous group of cancer cells. It is a biochemical laboratory method for the characterization and identification of the DNA or RNA sequences of cancer cell(s).
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 25, 2022
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/
Join our other free and drop in groups: Men (Only) Speaking Freely …1st & 3rd Thursdays @ 8.00 pm Eastern AnCan Barniskis Room Veterans Healthcare … 4th Thursday @ 8.00 pm Eastern AnCan Barniskis Room
Editor’s Pick: We hear evidence Pluvicto may be shortlived. And before you start it, be sure all your lesions express PSMA! … and higher levels of corticosteroids may reduce PSA – who knew?(rd)
Topics Discussed
How durable is Pluvicto? concordance required for Pluvicto success; incontinence during salvage radiation; are PSMA scans viable at 0.2 PSMA; Medicare covers DEXA scans; Dr. A confirms Kwon treatment – and orders NGS; extened use of prednisone may cause cataracts … or is it aging?; and that same pred may reduce your PSA!; oral pain issues from chemo.
Chat Log
Carl Forman to Everyone 03:21 PM Dr Kwon posted a video 2 weeks ago, thru PCRI, titled PSMA and LU177 in 2022 https://www.youtube.com/watch?v=bwUJJP614f8 May have useful info.
Len Sierra to Everyone 04:03 PM NCCN = National Comprehensive Cancer Network
rd to Everyone 04:26 PM From Bob McHugh …. ‘What does “avid” mean?’
Len Sierra to Everyone 04:27 PM Active lesion (Ed: Lesion expressing PSMA)
TonyFig to rd 05:07 PM I started 30 day Firmagon two weeks ago. Dr. VanV ordered monthly blood/testosterone/PSA 3 days prior to each injection. No side effects this far with Firmagon. Wondering if I should stay with Firmagon monthly or switch to Lupron. Thinking of staying with Firmagon since no adverse reactions at this time. Alan Babcock to Everyone 05:10 PM I have to go. Thanks for your help.
rd to TonyFig 05:11 PM Benefit of Lupron is that you can get a 3 or 4 month shot rather than monthly. Also some folks don’t like the belly shot.
Peter Kafka – MN to Everyone 05:13 PM Good night guys, Keep fighting the fight.
Jim Marshall, Alexandria, VA to Everyone 05:19 PM Here is the writelup I found Prednisone: It has been shown taking 10mg a day, can decrease the PSA result by more than 50% in many patients with hormone-refractory progressive Prostate Cancer. “In patients with serum testosterone castrate levels (less than 20ng/ml), hormone-refractory prostate cancer is defined as 2-3 consecutive rises in prostate-specific antigen (PSA) levels 12 obtained at intervals of greater than 2 weeks and/or documented disease progression based on findings from CT scan and/or bone scan, bone pain, or obstructive voiding symptoms.” So, getting this straight, if one does not have Prostate Cancer, then prednisone has no effect. But if Prostate Cancer is present, then the PSA test result is one half of its normal value. (Ed: not necessarily – PSA may also be half in all men taking pred, but they didn’t look at that!)
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 17, 2022
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/
Editor’s Pick: Is it prostate or lung cancer?? Plus a great discussion on Bipolar Androgen Therapy. Read Drs. Denmeade and Antonarakins BAT Patient Guide https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9313844/ (rd)
Topics Discussed
After 5 yrs on abi, consider a change in Tx and docs; 1.8 PSA nadir on abi & TAK-700 may require another Tx; PSA post RP comes back at 1.79; Dr.E gets full marks … again; Spot RT complements chemo to reduce PSA; Procrit – pros/cons; BAT to follow disappointing Pluvicto results; adjuvant RT now vs direction from scans and early salvage RT; PCa or NSCLC – confusion reins; tips on starting chemo; time for an Axumin scan; handling sciatic pain while on blood thinners.
Chat Log
George Rovder Arlington VA (to Everyone): 5:27 PM: Genito-Urologic Medical Oncologist
AnCan – rick (to Organizer(s) Only): 5:43 PM: Len – what’s the TAK-700; remember from years ago
Ben Nathanson (to Organizer(s) Only): 5:43 PM: orteronel It worked, just not well enough to meet the goals
Len Sierra (to Organizer(s) Only): 5:43 PM: Yes, orteronel. It’s similar to Abi
AnCan Barniskis Room/John (to Organizer(s) Only): 5:43 PM: could he have been on placebo? was there a placebo arm?
Len Sierra (to Organizer(s) Only): 5:44 PM: I think he said he took it for 7 years, so doubtful that it was placebo.
Peter Kafka – MN (to Everyone): 5:45 PM: Under 60 group candidate
AnCan Barniskis Room/John (to Organizer(s) Only): 5:45 PM: Oh yeah–must have been given the option to continue after study ended.
Mark Thompson (to Everyone): 5:47 PM: You are not alone Aaron, I was diagnosed at the age of 47 also with bone mets.
AnCan – rick (to Ian G (AZ)): 6:15 PM: The field is moving so fast; that’s why you have to have a GU med onc!! Deciding on the best Tx is difficult.
Ian G (AZ) (Private): 6:21 PM: CCCN has a lot of MOs. Is there noone there that can fill Dr V’s shoes.
Frank Fabish Columbus OH (to Everyone): 6:22 PM: Got to go guys. Thanks for the discussions.
AnCan – rick (to Ian G (AZ)): 6:26 PM: You will need a specialty GU med onc, Ian. You are better off at a Center of Excellence not a community practitoner. Dr. V z”l was a rare exception. Tony Crispino may have confidence in someone in LV so check with him but I would strongly recommend going to a Center of Excellence.
Julian Morales – Houston (to Everyone): 6:34 PM: Need to leave – It’s been a long day for me. Will catch you next week!
Ian G (AZ) (Private): 6:35 PM: Rick, this guy at CCCN is a GU MO: Oscar B. Goodman, Jr., MD, PhD. He has really good reviews.
Carl Forman (to Everyone): 6:37 PM: Denmeade is at Johns Hopkins in Baltimore.
AnCan – rick (to Ian G (AZ)): 6:39 PM: Like I say, Ian, if me, I would go to a Center of Excellence and have them work with a local person.
Ian G (AZ) (Private): 6:45 PM: Thanks Rick, I will email Tony right away.
AnCan – rick (to Ian G (AZ)): 6:46 PM: If me, I would see Alan Bryce at Mayo along with a local person.
George A Southiere Jr (to Everyone): 6:51 PM: Good to see everyone. Very tired these days so need to sleep. Goodnight fellows
George Rovder Arlington VA (to Everyone): 6:52 PM: Thank you gents. Goodnight.
Cal Van Zee (to Everyone): 6:53 PM: I have notes from a Nov ’21 webinar on BAT. Mike Schweitzer at SCCA uses BAT and has research on it.
Joe Gallo (to Organizer(s) Only): 6:54 PM: FYI. 3 mos after stop Orgovyx T was at 122
AnCan – rick (to Everyone): 6:55 PM: https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/
Ian G (AZ) (to Everyone): 6:57 PM: Thanks for the warm welcome. Been a long day. See you next time!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 11, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Drug holiday…but what about that rising testosterone? (bn)
Topics Discussed
Longtime friend remembers John Birch; a thank-you from John’s wife; two more passings — George Degnon and Dave Myers; Dr. E patient wonders what’s next after discontinuing abi; newcomer gets care downstate when Dr. Antonarakis is in his backyard; mysterious red marks following chemo; why is genetic testing useful?; jitters as testosterone rises on a drug holiday; dosing at mealtime to economize on abi; PSMA ordered but PSA is undetectable; helping a new BRCA patient get help at UCSF.
Chat Log
Dennis McGuire (to Everyone): 6:04 PM: she is on
AnCan – rick (to Everyone): 6:59 PM: Dr. Emanuel Antonarakis https://med.umn.edu/bio/hematology-oncology-and-transp/emmanuel-antonarakis
Jim B (to Everyone): 7:27 PM: Hi Bob, I think I am feeling much better today. BTW the chemo sores appeared almost immediately in my case and went away very soon after the steroid cream. The name of the cream is Clobetasol Propionate Cream.
Len Sierra (to Everyone): 7:37 PM: Low dose Abi reference:
Len Sierra (to Everyone): 7:37 PM: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5941614/
Herbert Geller (to Everyone): 8:00 PM: Gotta go. See you all on Monday.
AnCan – rick (to Organizer(s) Only): 8:00 PM: Great job tonight getting through everyone, Peter.
Len Sierra (to Everyone): 8:02 PM: Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, they are synaptophysin positive. DLL3 (Delta-like Ligand 3) is positive in 76% of NEPC.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 19, 2022
Are you a Vet ? – Join AnCan’s new Vet’s group to help best navigate your healthcare. It’s not about your disease – it’s about getting the best care, bennies and allowances. So please invite other Vets and Care Partners – no matter gender, condtion, or where they get care. Read more at https://ancan.org/veterans/ . Next meeting Thu, Sep 22 , free, drop-in – https://www.gotomeet.me/AnswerCancer
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Mental health is much on AnCan’s mind right now. It’s highlighted this week by the anxiety suffered by an older gent. (rd)
Topics Discussed
Possible recurrence needs more skilled provider; denovo Mx w. no primary inervention requires a GU med onc; early report post testicualr surgery; short report on NY conference; PIK3CA; MSI-H makes gent a candidate for Keytruda; Gen. Joel needs a new QB; mice and purple tomatoes; treating gynacomastia but how much RT??; slow, creeping PSA gives rise to anxiety in older gent; is spinal pain cancer, asks long term, younger Mx gent?; Pluvicto only holds so what’s next – Jevtana?
Chat Log
Jeff Marchi, San Francisco (Private): 5:07 PM: my brother gene has been given Casodex 2 days before his first Lupron shot. isn’t 14 days the standard?
AnCan – rick (to Jeff Marchi, San Francisco): 5:10 PM: 10-15 days
Jeff Marchi, San Francisco (Private): 5:11 PM: thanks
Herbert Geller (to Everyone): 5:20 PM: Genitourinary Medical Oncologist They deal with prostate, bladder, etc.
Joe Gallo (to Organizer(s) Only): 5:21 PM: Should have had an MRI for a targeted rather than a standard BX.
Len Sierra (to Organizer(s) Only): 5:22 PM: True, Joe.
Pat Martin (to Everyone): 5:25 PM: Genetic testing?
Len Sierra (to Organizer(s) Only): 5:26 PM: This is unbelievable. At the UT website for GU oncology this is what they say: Our team treats the following conditions: (Hint – No mention of Prostate Cancer) Bladder Kidney Penis Testis Ureter Urethra
Herbert Geller (to Organizer(s) Only): 5:26 PM: Great!
George Rovder, Arlington VA (to Everyone): 6:36 PM: https://www.inova.org/doctors/jeanny-b-aragon-ching-md
Mike Yancey (to Organizer(s) Only): 6:44 PM: Early morning doc appointment, so gotta run. Thanks for another great call and discussion AnCan – rick (to George Rovder, Arlington VA): 6:45 PM: If I had to see a doc at Innova, it would be her. George Rovder, Arlington VA (to Everyone): 6:46 PM: Thanks Rick. Good if it’s a go with Dr. E. If not she’s local and more experienced than Joshua Allen. AnCan – rick (to George Rovder, Arlington VA): 6:46 PM: It’s always tough to switch docs within a practice. George Rovder, Arlington VA (Private): 6:47 PM: Of course. Richard Cramond – Oakton, VA (to Everyone): 7:06 PM: I have to go David Muslin (to Everyone): 7:16 PM: What about Dr. O? Julian Morales – Houston (to Everyone): 7:16 PM: Need to drop off. These discussions are only getting better!!! Ben Nathanson (to Organizer(s) Only): 7:18 PM: Sorry, must go — see you all next week Joe Gallo (to Everyone): 7:21 PM: David. 3 sessions 12Gy Mark Thompson (to Everyone): 7:38 PM: Thank you all. George Rovder, Arlington VA (to Everyone): 7:39 PM: Happy New Year. George Rovder, Arlington VA (to Everyone): 7:39 PM: Thanks to all.
