Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 28, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Advocating for what you want may not be advocating for what’s best for you. (bn)
Topics Discussed
PSA in the 60s, but Gleason 3+4 — time for a PSMA scan; SUV maxes of FDG PET and PSMA PET are unrelated and can’t be compared; don’t underestimate the chills and aches when starting zoledronic acid; Keytruda surpasses his expectations — a Christmas miracle? — but another man fails to respond; surprisingly good response after switching from daro to abi; docs agree to drop ADT — but advocating for what you want may not be advocating for what’s best for you; ADT is an easier ride when you’re knowledgeable and prepared; reminder: no cold turkey with prednisone; could monotherapy be a safer choice than ditching hard-to-tolerate ADT?; doc balks at genetic testing that could uncover therapy options
Chat Log
Richard Wassersug (Vancouver) · 6:09 PM
Myovant is now Sumitomo Pharma
AnCan – rick · 6:14 PM
Gleason Grade, right group????
Julian – Houston · 6:14 PM
I did read that Myovant got bought out!
Peter Kafka – Maui · 6:14 PM
He probably should be in the Low and Intermediate group.
Steven Friedman · 6:31 PM
stevenfriedman55@yahoo.com
AnCan – rick · 6:36 PM
peterk@ancan.org
Peter Kafka – Maui · 6:37 PM
peterk@ancan.org
Peter Kafka – Maui · 6:44 PM
Sounds similar to Len’s experience recently.
Len Sierra · 6:44 PM
Almost identical to me.
Unknown · 6:44 PM
My wife Ellen had the same response she like you and Len
J. Ward · 6:59 PM
I made it an hour, gents, and wanted everyone to know about the Reclast side effects. I’m going to take Dr. John’s advice and hop off the call to get rest. Good night!
Len Sierra · 7:15 PM
From RADICALS-HD trial: After a median follow-up of 9 years, the study investigators found that 24 months of ADT were superior to 6 months (HR 0.77, 95% CI [0.61, 0.97]; 72% vs 78% at 10 years) with respect to the primary endpoint of metastasis-free survival (MFS).
Unknown · 7:20 PM
Why not try mono therapy first with Dara?
Larry Fish · 7:26 PM
please spell this drug-suppliment
AnCan – rick · 7:26 PM
fenbendazole
Jim Marshall, Melbourne, FL on Vac · 7:26 PM
I managed my ADT + Abi for 5 years and it did not slow me down. Being diagnosed at 73 and now 79 has slowed me down more. Aerobic Exercise has been the key even when my body said it was exhausted, will power got me on the bike which promoted recovery. jim
AnCan – rick · 7:48 PM
Elizabeth Heath Karmanos
AnCan – rick · 7:48 PM
https://www.karmanos.org/karmanos/karmanos-physician-directory/heath-elisabeth-8225
Frank Fabish Columbus OH · 8:00 PM
See you guys. good session.
Steve Roux, MI · 8:07 PM
Guys, really need some dinner; see you next meeting. Great session and thanks to all of you!
Len Sierra · 8:07 PM
BXCL701 showed good results when used with Keytruda in both enzalutamide resistatnt mCRPC and with small cell neuroendocrine cancer.
Len Sierra · 8:09 PM
Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, they are synaptophysin positive
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 24, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
UPCOMING WEBINAR – Let’s talk Medicare 2024!Monday, Oct 30 8.00 pm Eastern Register at http://tinyurl.com/ancanmedicare . We plan NOT to make this scary!!!
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Facing the future as a three-year drug holiday falters. (bn)
Topics Discussed
Smooth recovery for kidney transplant patient who chose surgery over radiation; beginning of the end for a three-year drug holiday; turning to Pluvicto after chemo failure — which treatment is worse?; what it’s like undergoing Pluvicto therapy yet again; off ADT for 18 months, but now unexplained fatigue as PSA rises; controversy over Jonathan Epstein; prophylaxis for ADT bone loss; when triplet therapy makes sense; putting out the welcome mat for questions.
Chat Log
Peter Kafka – Maui · 7:20 PM
How much radiation from Pluvicto can a person safely have if multiple cycles are involved?
Al L · 7:26 PM
i didn’tmention it but I talk to Dr Scholz next week as well. He has patients that have had more Pluvicto sessions than I have had. I will be asking him about tolerating multiple rounds.
Peter Kafka – Maui · 7:33 PM
Has Marc had previous PSMA scans? Have they shown up stuff? Just wondering with low PSA profile.
Rick Davis · 7:45 PM
The Active Surveillor
Gary P · 7:52 PM
Here is the WP article:
Gary P · 7:54 PM
https://www.washingtonpost.com/health/2023/10/22/johns-hopkins-jonathan-epstein-pathology/
APOLOGIES – No recording for 3/6/23 HiRisk/Rec/Adv Group!!
5 Moderators + some highly vigilant participants all forgot to record last night’s virtual video support group. We blew it, so to our regulars, please accept our apologies.
Amongst the topics, we dicussed an unusual type of foamy gland prostate cancer linked to a recent Epstein article in the Chat. The Group also spoke at length about the mutation SPOP, that we will be sure to cover again another time. And an old chestnut discussed many times before – remedies for hot flashes.
Here’s the Chat Log:
Me to Everyone 06:51 PM Our AS group is only early; possible cure if a true 3+3
Len Sierra to Organizer(s) only 06:51 PM I’d say he’s cured. He probably never needed any therapy as a 3+3
Henry to Everyone 07:07 PM I’ve got SPOP and PTEN; Dr. E indicated to me that SPOP responds better to abi; PTEN not as good.
Len Sierra to Organizer(s) only 07:16 PM Henry, talk to your doc about ipatasertib. It has some activity against PTEN in the IPATENTIAL clinical trial.
Len Sierra to Everyone 07:16 PM Henry, talk to your doc about ipatasertib. It has some activity against PTEN in the IPATENTIAL clinical trial.
Pat Martin to Everyone 07:19 PM What kind of chemo did you go through?
Henry to Everyone 07:23 PM Len — thanks so much for that lead. Once again demonstrating how awesome this group is.
Henry to Everyone 07:26 PM flexeril
Me to Everyone 07:27 PM Embr Wave
Me to Everyone 07:27 PM Red clover.
Frank Fabish Columbus OH to Everyone 07:27 PM Pat it was 6 treatments of docetaxel Jan 21 to Apr 22
Joe Gallo to Everyone 07:27 PM embrlabs.com
Me to Everyone 07:28 PM ANCAN50
Frank Fabish Columbus OH to Everyone 07:28 PM I am determined to be positive and thankful for each day
To all our art enthusiasts! We have yet another art class for you TOMORROW!!
10/20/22 8pm ET / 5pm PT
Our Summer of Art classes were such a huge hit that we just had to keep them going. Though we won’t be able to send everyone free supplies this time, at least we are using some of the things we’ve used in previous classes.
All you will need for this project tomorrow is paper and markers – that’s it! Browns, yellows, oranges, purples, reds, a blue or two. I happen to use the Crayola 20pc set. You can also use colored pencils, crayons, and anything else you can think of. There are really no set rules, though. We can help you work with what you have so you won’t be left in the dark.
Please use THIS LINK HERE to register. You’ll get the Zoom link tomorrow before class!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 13, 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: No Provenge with autoimmune disease — but how about vitiligo? Dr. Larry Fong himself weighs in. (bn)
Topics Discussed
Hyperbaric chamber for radiation cystitis; docs inadequately warn gay man of prostatectomy side effects; years after prostatectomy, incontinence reappears; Provenge OK with vitiligo?; fourth and worst-yet chemo; dehydration to avoid leakage backfires at radiation simulation; avoiding leakage at work; expanded access to end for Pluvicto — no more free drug; which Medicare plan?; paused Keytruda treatments back on track; dehydration makes liquid biopsy fail; message from Dr. Larry Fong: no known Provenge problem with vitiligo
Len Sierra (to Everyone): 6:32 PM: Climacturia after definitive treatment of prostate cancerResults: Overall 412 surveys were returned and available for analysis, and of these respondents 75.2% were sexually active or experiencing orgasms. Climacturia was reported by 22.6% of these respondents, and by 28.3%, 5.2% and 28.6% of those treated with surgery, radiation, or both, respectively (p <0.001).
Bob McHugh (to Everyone): 6:37 PM: Had a Pylarify scan in May at 0.5.Showed three very small lesions which we treated with five rounds of Tomotherapy.
Bob McHugh (to Everyone): 6:40 PM: Very candidly, I haven’t had a erection since my surgery in 2015. My girlfriend said, “Bob, I don’t care if you ever have an erection again.” Changed my life!
John Antonucci–CT (to Everyone): 6:40 PM: Nothing better than a supportive partner, huh?
Julian Morales – Houston (to Everyone): 6:41 PM: you got that right Dr John
Julian Morales – Houston (to Everyone): 6:51 PM: The file will start with ChatLog Ancan Barniskis Room followed with the date of the meeting. It is an RTF file.
Bob McHugh (to Everyone): 7:16 PM: My surgeon gave me a lidocane cream. HJelpful.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 5, 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: Great input this week from Advisory Board Member, Richard Wassersug PhD. And right at he end – maybe a touch of African Waterways – ‘De Nile’! (rd)
Topics Discussed
Stick or twist on RT for longtime recurrent older Gent; a similar Peer Survivor comments; man with cribriform intraductal faces immediate recurrence; starting Prolia; leg pains from ADT; Theraworx; looking at IHT; steady as she goes; MSI-H man asks about Immunex test; abi added to treatment but maybe daro would work; is Clinical Trial failing or succeeding?; aggressive disease recurs on Pylarify 3yrs after Tx ends – but man asks if it’s a false positive.
Chat Log
Richard Wassersug (to Everyone): 5:18 PM: Or there were only 6 cores taken
JEFFERSON DURYEE (to Everyone): 7:00 PM: OP GU PROSTATE STUDY IGUP20133 ETRUMADENT ZIMBERELIMAB DOCETAXEL PETER JAY VAN VELDHUIZEN,MD MY CURRENT CLINICAL TRIAL TEN MONTHS THEY ADDED 3 MORE MONTHS YR OLD ORCHIECTOMY A YR A GO PSA HAS RISEN TO 7.006 TESTERONE LESS THAN 5*
Frank Fabish – Columbus OH (to Everyone): 7:04 PM: Got to go guys. Thanks for listening.
Thomas Jacobsen – CO (to Everyone): 7:05 PM: Thanks everyone. Gotta go.
Julian Morales – Houston (to Everyone): 7:07 PM: Have to drop. Another great discussion. Glad I could contribute! See you next week!
Richard Wassersug (to Everyone): 7:23 PM: Sorry all. I have to go.
Bob G. Philadelphia (to Everyone): 7:25 PM: Time for me to go. Thanks.
Ben Nathanson (to Everyone): 7:27 PM: Good night, George – good to see you again
George Rovder Arlington VA (to Everyone): 7:27 PM: Good night friends. Stay well.
JEFFERSON DURYEE (Private): 7:31 PM: TY AND GOOD NIGHT
