Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 21, 2022
HAPPY THANKSGIVING TO ALL -… we have much gratitude at AnCan – especially for the love and support from our participants! All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: What’s the right type of radiation therapy? And you gotta love our live interaction to help Dr. Jack decide! (rd)
Topics Discussed
chemo causes minor BP/heart issues; off again, on again pembro to be resumed; MMR and HRR mutations defined; AnCan advises against self-dosing; bladder Botox and hematuria; starting IHT; GU med onc offers 3 treatment options … AnCan’rs opine; more IHT starting; RT treatment to commence- but is the right type of radiation?; Bayer approves darolutamide support; HT kicks in for another happy Dr. E camper; Herb experiences pain, but is it cancer realted?; are we seeing more or less telemed visits?
Chat Log
Frank Fabish Columbus OH to Everyone 06:02 PM Have my two month follow up and blood draw with my oncologist at the James tomorrow afternoon. Looking for good results.
Dennis McGuire to Everyone 06:05 PM Rick, Like the Background !
Joe Gallo to Organizer(s) only 06:42 PM SHARED Decision making
Me to Everyone 06:59 PM desmopressin – ‘Nocturna’
AL L Ft Lauderdale to Everyone 07:07 PM Just saw the bill for the first Docetaxel infusion. List prices. Docetaxel $4141. Neulasta $46749. Really? Haven’t seen what the approved by Medicare amounts are yet. Total $60000. Neulasta is really that expensive?
Me to Everyone 07:08 PM Yes Al …. and a lot of hospitals won’t give it or use a generic.
Alan Moskowitz to Everyone 07:09 PM nocturna is a brand name for a quick dissolve desmopressin tablet. More expensive and may not be covered by insurance. The generic tablet is very inexpensive.
Aaron Wertlieb DC to Everyone 07:18 PM Thanks guys have a good night
Peter Kafka – MAUI to Everyone 07:20 PM I just looked up my Medicare billing for 2020 which covered my Chemo treatment reimbursements. This was here in Hawaii, but my Nulasta was billed at $19,445. per shot. Medicare paid $2,226.91 and my secondary plan covered $556.73 Strange that you are seeing $60,000 bills. I guess that is why I don’t live in Florida. Correction: I see your Nulasta is only $46,749. But again, mine was only $20,000 in 2020.
Len Sierra to Everyone 07:23 PM Peter, I think he was including the cost of the chemo in addition to the Neulasta.
Me to Everyone 07:21 PM How do you all like the interactive?
Norm Pollock to Everyone 07:22 PM Yes
Len Sierra to Me 07:22 PM Fun!
Frank Fabish Columbus OH to Everyone 07:23 PM like the interactive
Steve Roux, Elk Rapids, MI to Everyone 07:23 PM Interactive is great
James Davidson (Houston) to Everyone 07:24 PM Interactive is engaging and entertaining
jeff wood to Everyone 07:27 PM I have to go early. Happy TG to all
Alan Moskowitz to Everyone 07:28 PM Guys, need to leave now. Happy Thanksgiving to all.
Joel Blanchette Reston, VA to Everyone 07:33 PM I talked with Dr. E today and she said that she had just returned from Canada lecturing on the FDG PET and the PSMA from some research done by the Aussies. Does anyone know where she was in Canada and is it available on You Tube or someplace else?
TonyFig to Everyone 07:42 PM What is the name of the recommended radiation? SDRT?
AL L Ft Lauderdale to Everyone 07:43 PM Thanks to all. I need to leave tonight. Happy T Day!
Jim B to Everyone 07:44 PM SBRT – stereotactic beam radiation therapy
Frank Fabish Columbus OH to Everyone 07:51 PM got to leave guys. Happy Thanksgiving all.
Steve Roux, Elk Rapids, MI to Everyone 07:58 PM Got to get some sleep for early morning EBRT. Have a Happy Thanksgiving all!
Julian Morales – Houston to Everyone 07:58 PM Happy Thanksgiving to ALL!
James Davidson (Houston) to Everyone 07:59 PM Happy Thanksgiving!
Robert G (Colorado) to Everyone 07:59 PM Happy Thanksgiving!
Bill H to Everyone 08:04 PM Happy Thanksgiving to all. GN
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 15, 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: Severe side effects – a “Lupron Frankenstein” and an abdomen swollen by chemo – plus a surprise case of shingles. (bn)
Topics Discussed
Newcomer from northern Michigan finds he’s 5+4; shingles brought on by ADT?; end of radiation and a steak dinner; benefits of pelvic floor therapy; Lupron turns a newcomer’s life upside down; are Orgovyx and darolutamide chemotherapy? ; mini-poll on hot flashes: who uses what?; putting chemo on pause after success; self-advocating finally gets him Pluvicto; “what is chemo?” revisited; funny-smelling stool following chemo; chemo abdominal swelling diagnosed as ascites — he’s now on Pluvicto and improving; end-of-life discussions; gabapentin for neuropathy leaves him loopy; latest scan shows 30 bone mets gone.
Chat Log
Richaed Wassersug to Everyone 6:36 PM
Herb,
Richaed Wassersug to Everyone 6:36 PM
Can you put the ADT and Herpes ref here?
Herbert Geller to Everyone 6:37 PM
Andrologia . 2018 Mar;50(2). doi: 10.1111/and.12863. Epub 2017 Aug 8. Increased risk of a herpes zoster attack in patients receiving androgen deprivation therapy for prostate cancer F J Wu 1, L T Kao 2, S Y Sheu 1, H C Lin 3 4, S D Chung 4 5 6
Bob G to Everyone 6:37 PM
I had shingles at age 30 due to stress.
Paul Freda Lake Worth FL to Everyone 6:41 PM
Stan How is everything going with you ? Any new treatments ? PSA stable ? I am smae except for a spot on my Pancreas. Doc says its stable and not likley to become cancerous. Hope he is right. Paul Freda AEPi 1969
Steve Roux, Elk Rapids, MI to Everyone 6:44 PM
Hey guys, here is the clinical trial info – NCT#04513717 Cancer Research Consortium of West Michigan NRG-GU009, “Parallel Phase III Randomized Trials for high risk prostate cancer evaluating intensification of concurrent therapy for higher genomic risk with radiation”
Herbert Geller to Everyone 6:54 PM
Here is more information on the trial by the NRG:Parallel Phase III Randomized Trials For High Risk Prostate Cancer Evaluating De-Intensification For Lower Genomic Risk and Intensification of Concurrent Therapy for Higher Genomic Risk with Radiation (Predict-RT*) *Prostate RNA Expression/Decipher To Individualize Concurrent Therapy with Radiation Principal Investigator Paul L. Nguyen, MD, Co-Principal Investigator(s) A. Oliver Sartor, MD
Steve Roux, Elk Rapids, MI to Everyone 7:07 PM
My brother David, with ALS, was given a weekly ADT shot, NOT Lupron, which gave him these same symptoms I hear him saying. David quit the weekly shots just to have some level of normal quality of life.
Joe Gallo to Everyone 7:12 PM
len@ancan.org
Joe Gallo to Everyone 7:12 PM
embrwave
Bob G to Everyone 7:13 PM
I have a question, but have to step out for 5 – 10 min.
Steve Roux, Elk Rapids, MI to Everyone 7:14 PM
Guys, THANK YOU for allowing me to sit in for this. I will be back for future meetings! But I need to go attend another meeting!
Julian Morales – Houston to Everyone 7:38 PM
And many more!!!!
AnCan – rick to Everyone 7:40 PM
Thank you all
AnCan – rick to Everyone 7:50 PM
Beginners Guide to the End, BJ Miller MD and Shoshana Berger
Frank Fabish Columbus OH to Everyone 7:56 PM
Got to go guys. Thanks for the updates. I see my Doc next Tuesday for Labs and Exam.
Editor’s Pick:Whether the word’s concordant or congruent, if your PSMA and CT scans don’t match up, talk carefully with your Provider if you’re a good candidate for Pluvicto! (rd)
Topics Discussed
Make sure your PSMA and Full CT scans are concordant .. or is it congruent??; new lesions appear in Pluvicto follow-up scans; is BAT an option to follow Pluvicto?; when best to start Tx on recurrence; starrting IHT; liver cyst shows up on an Axumin scan; tear duct issues from chemo; Pluvicto availability; does ADT control DHT – dihyydrotesterone?
Chat Log
Jim Marshall, Melbourne, FL to Everyone 06:28 PM Concordance – Agreement or consistency
Bob G to Everyone 06:42 PM Took about 11 days before I felt back to normal. Easier how? So, I’m done (for now) with chemo. I retry abiraterone at 1/2 dose in another 10 days & will see. Scans in early Dec & then see Dr.
Jim Marshall, Melbourne, FL to Everyone 07:19 PM For you Florida guys, you can track and predict storms, hurricanes, etc with the Ventusky weather model out of the Czech Republic at. www.ventusky.com you Gulf states can use it too along with East & West Coast. It predicts weather all over the world.
Ben Nathanson to Organizer(s) only 07:31 PM mary-ellen taplin?
george rovder arlington virginia to Everyone 07:50 PM Thank you all. Good Night.
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!
