Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 5, 2022
Back after a two-week holiday hiatus, and Boy – do we have a lot of good action for Recording Participants!! Listen on …
Just a heads-up everyone – mark on your calendar that Dr. E may be joining us on Dec 19 – we’ll start a little early!
December heralds our one and only Fundraising Campaign of the year. All on the AnCan distribution already received our ‘ask’ that also includes AnCan highlights from 2022. We ask you to consider a donation based on the support gained listening to these recordings. Read our letter at https://us14.admin.mailchimp.com/campaigns/show?id=7976018
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: AnCan surfaces a significant Orgovyx side effect … and what else but anxiety comes up again throughout! (rd)
Topics Discussed
Success with Keytruda/pembro; anxiety recurrence; pain, ,opiates causes question – cancer or spinal deterioration? …and more anxiety; significant Orgovyx interaction with PPI drugs; when to start RT on recurrence post RP; hot spot in gland should trigger action; ARV-766 trial vs restoring blood counts for more chemo and Pluvicto; restarting abi; all steady; hot flashes; more of Keytruda/pembro – may take time; foamy gland PCa stable
Chat Log
Peter Kafka – MAUI to Everyone 05:56 PM I can only be with you for the first hour. Sorry,
Peter Kafka – MAUI to Everyone 05:59 PM Phone in: 646-749-3129 code: 222583973##
Alan Babcock to Everyone 06:00 PM 1 866 890 8931 support number
Tom to Everyone 06:03 PM New person, thanks for hosting!
eric to Everyone 06:14 PM Hello everyone
George Rovder Arlington VA to Everyone 06:45 PM Feldenkreis, as recommended by Larry Fish https://feldenkrais.com/
Herb Geller to Everyone 06:54 PM pantoprazole
Joe Gallo to Organizer(s) only 06:57 PM Is that in the same family as Prilosec
Frank Fabish Columbus OH to Everyone 07:56 PM Thanks for hearing me. Onward and upward. See you all next week.
Tom to Everyone 08:04 PM Thanks for letting me listen in. I was diagnosed last year after months of back pain, metastatic PC with “innumerable” skeletal tumors. Degarelix worked for a few months but pain returned and PSA back up to 15+, doubling in a month or two. Next appt this week with oncology through UCLA to discuss next treatment options. Mostly focused on reducing pain.
Me to Everyone 08:04 PM Who are you seeing at UCLA?
Tom to Everyone 08:05 PM Dr melody Benjamin, out of the Ventura office
Me to Everyone 08:06 PM Is she a GU med onc?? I think not.
Tom to Everyone 08:06 PM Ok
Pat Martin to Everyone 08:07 PM Thanks for the help and input
Me to Everyone 08:07 PM Go to see Rettig at UCLA Westwood
We LOVE our Art Friends here at AnCan! Not only do we create beautiful things together, but we take the time to come together as a community. All of our “students” are learning more and more each time, and we use those skills in other classes.
We also truly care about what matters to you. In fact, this art class project was requested by AnCan Art Friend Sharon, who wants to see the northern lights in person. Do you have any ideas for future classes? Just let us know!!
For this class, you’ll need
Paper
Your choice of medium – markers, pen, pencil, colored pencils, paint, watercolor pencils, anything that can mark.
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!)
