Hi-Risk/Recurrent/Advanced PCa Video Chat, June 13, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant & Telix
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: Prostatectomy after 70. Also: Pluvicto wiped out 99% of his cancer — time for a jig! (bn)
Topics Discussed
Metformin’s faded glory in PCa treatment; grateful for heads-up on Xgeva with radium-223; statins and PCa — still anybody’s guess; darolutamide monotherapy might cut fatigue; curious about new hot-flash drug for women; experience with Onco360 pharmacy; when will white blood cells rebound from radiation; bike seats and PCa; seeing metastasis in lymph nodes that radiation skipped; dry mouth and depression overshadow wild Pluvicto success; too old for prostatectomy?; Keytruda and more Keytruda.
Chat Log
Steve in MI · 6:09 PM
Suttons Bay is nice; my wife has a few properties she manages up there. We get to Interlochen at least 2 or 3 times during the summer for concerts. Styx is the next one.
Steve in MI · 6:13 PM
There is a few up around here in the summer: Charlevoix, Fish Town, Elk Rapids. Ours is in August I think.
Julian – Houston · 6:18 PM
stopped taking because it made my bones ache!
Gary P · 6:20 PM
While not actually diabetic, I was put on Metformin after my blood sugar levels went up significantly on Abiraterone.
Julian – Houston · 6:24 PM
Same here, Gary. Took for awhile and my A1C came down.
AnCan – rick · 7:33 PM
“Patients received Pluvicto 7.4 GBq (200 mCi) every 6 weeks for up to a total of 6 doses plus BSoC or BSoC alone.”
BSoC = best standard of care
Tom Maloney · 7:34 PM
The recommended Pluvicto dose is 7.4 GBq (200 mCi) intravenously every 6 weeks for up to 6 doses, or until disease progression or unacceptable toxicity.
Tom Maloney · 7:34 PM
up to 6 doses, not requiring 6 doses.
AnCan – rick · 7:34 PM
The trials all gave 6 doses
Len Sierra · 7:36 PM
Tom, the dry mouth usually resolves by itself soon after your treatment is complete.
AnCan – rick · 7:38 PM
We do not know anyone who did less than 5 doses by choice. Doesn’t mean there aren’t any. However your doc is recommending you finish up.
AnCan – rick · 7:39 PM
We’ve seen less than 6 doses but only where blood counts or other markers have been compromised.
AnCan – rick · 7:45 PM
Xgeva = denosumab
Steve in MI · 7:52 PM
Keep coming back Spencer.
? · 7:52 PM
Thank you to everyone for excellent advise.
Joe (Dubois WY) · 7:59 PM
keytruda
Julian – Houston · 7:59 PM
Keytruda
Julian – Houston · 8:00 PM
Thanks guys. Another great session.
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant & Telix
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.
Apologies to all who attended live last night! GoTo issued a massive update over the weekend and did not advise their customers. Some folks couldn’t even open their rooms – in our case we lost video. Citrix support was less than honest, causing even more grief. As you saw we had to shut down the room and restart after they reset our settings. It put me in a very grumpy mood … :-(( – apologies if I offended anyone!
Editor’s Pick: I could go for the very end with ice cream and Capt Joe’s tips on koi – BUT how about somatic testing?! It’s so important, many docs don’t test, and when they do, forget to repeat!
Topics Discussed
Dx at a young 80, denovo Nx; time to switch from the VA?; Gents wants to add abi but doc reluctant; chemo fails – nothing sticks… what next but somatic testing!; multiple treatment modes at one time;…and another without answers who needs testing and a GU med onc; retention issues from RT damage – back to rad onc; our foamy gland guy holds steady; switching to Metformin for diabetes … and cutting out the ice cream!; all you ever wanted to know about keeping koi!
Chat Log
rd sent · 5:31 PM DELMARVA gents… organize a lunch!!!
rd sent · 5:48 PM somatic testing
Julian – Houston sent · 6:31 PM good evening everyone – see you next week! Thanks!!!
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 9, 2023
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: Rural denovo metastatic man 6 years out thrives with high PSA … but needs a GU med onc all the more! (rd)
Topics Discussed
Denovo Mx man thrives for 6 years with high double digit PSA; post-ADT, the T’s coming back!; small PSA increase on Pluvicto doesn’t mean failure; single session palliative spot RT + Bx to check disease; T slowly rising on mono daro; starting Xofigo to combat PSMA +/- PCa; what does Dr. A have in store for our BRAF man?; Mayo man moves to Sartor; hard to come by PSMA scan deferred until PSA rises; TMB vs PSMA vs PSA; can you start HT on mono daro?; quick review of CancerABCs conference.
Chat Log
Len Sierra sent · 3:09 PM Does Medicare insurance cover EMBR?
Frank Fabish Columbus OH sent · 3:09 PM I’m not sure
Vic St. Louis, MO sent · 3:10 PM I think only if prescribed by MD as medically necessary
John A sent · 3:27 PM genito-urinary medical oncologist
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 3, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
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: Hang in to the end when we have a good discussion around BCR – biochemical recurrence. (RD)
Topics Discussed
Update on Professor Herb; recurrence in BRCA+ man reluctant to undergo salvage RT; firsthand experience with pelvic floor therapy; how does testosterone recover post HT; more chemo vs worsening side effects as PSA plateaus around nadir; what type of RT is being used for salvage?; with Pluvicto shortage, maybe Xofigo first?; Pluvicto triage update; T comes back and PSA moves a tad post treatment; deciding whether to complate Pluvicto cycle; when to intervene post RP as PSA inches upwards; what constitutes biochemical recurrence?;
Ben sent · 5:55 PM An important element of EMBARK was that study treatment was suspended once the PSA was less than 0.2 or if it was less than 0.2 at week 36 and then restarted when the PSA was greater than or equal to five for those without prior radical prostatectomy and greater than or equal a two with those who had received primary prostatectomy.
Terrill SF sent · 6:08 PM must leave early…see you all next time
Anthony Pizzoferrato sent · 6:11 PM I will listen to the video for any more information. Need to go. Thanks everyone.
Anthony Bill Franklin sent · 6:20 PM Wang Gao Shan, also, don’t worry too much about the number but more about how you feel and what you can do. Prior to my treatment my T levels were always over 600. Post treatment it never came back higher than 350 but I really can’t tell the difference. Still very active physically and sexually and no worries. It’s all how you feel.
Jack sent · 6:22 PM excessive B-6 can interfere with the effectiveness of cisplatin.
Frank Fabish Columbus OH sent · 6:31 PM Got to go. Thanks guys.
Mark Thompson, Rehoboth Beach, DE sent · 6:35 PM Thank you all for a great discussion tonight. I have several doctors appointments tomorrow so I am going to bed. Still dealing with extreme fatigue. Thank you, Mark Thompson
Bob G sent · 6:57 PM Oh! will send an email with some ideas
Julian – Houston sent · 6:59 PM Another great discussion. Thanks everyone. Good night.
sent · 7:00 PM Nice meeting everyone. Thank you for the support and constructive input. Be safe. Stay strong.
Don Eisner sent · 7:01 PM Have to leave
Ben Nathanson sent · 7:01 PM PSA persistence/recurrence after RP is defined as * failure of PSA to fall to undetectable levels (PSA persistence) or * undetectable PSA after RP with a subsequent detectable PSA that increases on 2 or more determinations (PSA recurrence) or that * increases to PSA less than 0.1 ng/mL. RTOG-ASTRO (Radiation Therapy Oncology Group – American Society for Therapeutic Radiology and Oncology) Phoenix Consensus: 1) PSA increase by 2 ng/mL or more above the nadir PSA is the standard definition for PSA recurrence after EBRT with or without HT; and 2) A recurrence evaluation should be considered when PSA has been confirmed to be increasing after radiation even if the increase above nadir is not yet 2 ng/mL, especially in candidates for salvage local therapy who are young and healthy.
John A sent · 7:10 PM sorry to leave mid discussion guys, gotta go
Joe Comanda sent · 7:13 PM What is the proper approach to ask questions in this group: 1) save them up for the next meeting or 2) send email questions or 3) put them in this chat list?
AnCan VIRTUALLY speaks to Extended Access Programs!
When AnCan Advisory Board Member, Jeff Waldron asked us to participate in a pharmaceutical industry Conference on Expanded Access Programs (EAP) in Boston at the end of March, we were only to happy to amplify the patient voice.
A couple of background factors. For those of you not aware, EAP is the name given to programs that allow needy patients access to groundbreaking drugs that have not yet received regulatory approval – in the US case, by the FDA. All of our guys who received Pluvicto (Lu177 PSMA 617) through ‘Managed Access’ last year were actually enrolled in a form of EAP. As you may recall, when the FDA approved Pluvicto, the Managed Access Program ceased to exist and patients were rapidly transferred to commercial providers.
Our good friend, Jeff Waldron, has a back ground working with both Payers and Pharma. He is one of our most well-connected Advisors, and for the past 3 years, has organized an international EAP Conference. All but the smallest pharmas have an EAP. The past two years conferences were virtual, but this year it was held live in Boston from March 21-23.
Rick Davis attended virtually on behalf of AnCan to participate in a panel moderated by Jeff entitled,“Closing the Gap of How We Reach Patients”. Ours was the sole direct patient particpation in the 2-day proceedings, and one thing was for sure – they couldn’t miss ‘rd’ as you’ll see from the photgraph alongside. Live feedback was very positive, especially from hearing the difficulties patients encounter. Perhaps the single exception.was a senior drug executive from a pharma with whom AnCan works closely. She presented for 25 minutes immediately before the Panel, finally mentioning patients in her closing sentence. When Rick pointed that out, she was none too pleased.
So what did we say. The take- away points for pharma were:
Publcize your EAP in a way that is understandable and accessible to and for patients
Provide support to the patients’ medical team filling out the paperwork to help eliminate that as a hurdle to access
Respond quickly so patients are not hanging out waiting to hear if they can access the EAP drug
Be sure trialled drugs are available to patients benefitting from their use, if the trial is stopped and the drug has not been approved.
AnCan’rs – just another example of how we ensure your voice is being heard … we have your back!
Rick Davis attended virtually on behalf of AnCan to participate in a panel moderated by Jeff entitled,“Closing the Gap of How We Reach Patients”. Ours was the sole direct patient particpation in the 2-day proceedings, and one thing was for sure – they couldn’t miss ‘rd’ as you’ll see from the photgraph alongside. Live feedback was very positive, especially from hearing the difficulties patients encounter. Perhaps the single exception.was a senior drug executive from a pharma with whom AnCan works closely. She presented for 25 minutes immediately before the Panel, finally mentioning patients in her closing sentence. When Rick pointed that out, she was none too pleased.