Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 27, 2022
Our only Fundraising Campaign of the year is winding up. All on the AnCan email distribution have been sent a request letter, which includes AnCan highlights from 2022. We ask you to consider a donation based on the support you’ve gotten from 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/
Editor’s pick: Unintended consequence of radiation therapy — subsequent surgeries become risky. Plus: research into mushrooms — and a fanatic who had one of us chickening out and turning tail.
Topics Discussed
Patient who got radiation now needs organ repair after a damaging kidney stone treatment — but surgeon is pessimistic because of scarring, plus a bladder growth is discovered; kidney stone sufferers feel the pain; too many mushrooms — and do they even work?; turkey tail fanatic holds Dr. A hostage; hot-flash sufferer turns successfully to acupuncture; bowel problems after radiation; Gleason 9 with PSA of 1; beware colonoscopy if there’s bowel problems; old prostatectomy and new PSA rise; how high a PSA before salvage?; types of lung biopsy; cloak of secrecy getting yanked after he tells pharma reps of side effects; doc explains ADT duration for salvage; cancer patients OK with Medicare Advantage?; paying back to AnCan. (bn)
AnCan- rick · 6:49 PM FDA approves turkey tail for certain cancer patients http://www.bastyr.edu/news/general-news/2012/11/
fda-approves-bastyr-turkey-tail-trial-cancer-patients
· 6:51 PM Host Defense Mushrooms. My Community: Comprehensive Immune Support. Buy on Amazon 120 Capsules
AnCan- rick · 6:53 PM FDA approves turkey tail for certain cancer patients … BAD LINK
Dr. E on the patient voice and thinking outside the pill
Dr. Eleni Efstathiou has a hypothetical question about your high-grade prostate cancer diagnosis that typifies her approach: You alone can answer it, and you wonder why nobody asked you before.
The straight-talking Dr. E, an AnCan advisory board member and genitourinary oncology section chief at Houston Methodist, shared her views Monday night in a conversation with our High-Risk/Recurrent/Advanced prostate cancer group, which includes several of her patients.
Medicine needs to start thinking outside the pill, she said, tackling not only development of drugs but development of therapies. How should we be deploying drugs and other interventions? What timing, combinations, and sequences will achieve highest benefit and lowest toxicity?
One target for this rethinking is localized or locally advanced prostate cancer. She’s gotten exceptional long-term results from more than two-thirds of patients by administering 3 to 6 months of ADT plus abiraterone, followed by prostatectomy.
Much of her philosophy is reflected in this work. First, therapeutic thinking led to strong results by putting drugs in a novel setting. Second, because 30% of patients don’t benefit from the treatment, biomarkers are needed to identify them and to develop treatments for them as well. Third, emphasis is needed on early-stage high-grade disease. Fourth, the patient gets a voice in whether to go forward.
She came to Monday’s meeting hoping to hear more of these voices. She asked what our own choices would be: Diagnosed with localized or locally advanced high-grade cancer, would we accept a prostatectomy in hopes of an excellent prognosis without further ADT?
Results were surprising. Half the men in the meeting still would decline the prostatectomy in favor of radiation and long-term hormones. This opened a path for future discussion — what would make prostatectomy a stronger alternative?
In the 90-minute session, Dr. E also stressed the importance of using real-world evidence in addition to randomized clinical trials where results come slowly and have narrow applicability. She described the work leading to the development of second-generation antiandrogens.
And she hinted that groundbreaking news would be coming from the GU ASCO conference in February.
An edited transcript of the talk, with slides, is available.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 19, 2022
Immediately preceding tonight’s meeting we also recorded a 90-minute discussion with one of AnCan’s favorite doctors, Eleni Efstathiou — Dr. E — worth watching! (https://youtu.be/-ssBargObwE).
Our one and only Fundraising Campaign of the year takes place this month. 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 you’ve gotten from 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/
Editor’s pick: Brokering a deal: C is ready to ditch his Embr Wave hot-flash device and P is searching for a bargain; the statins debate; many ideas on treating hip pain. (bn)
Topics Discussed
$200/hour interview available for castrate-resistant men; newcomer couple with lymph-node recurrence after prostatectomy; reminder of our caregiver and Speaking Freely groups; up-to-date treatment plan from a new radiation oncologist; good ADT response but hates hot flashes; hot flashes — what works, what doesn’t?; cutting a deal in used Embr Waves; the debate over statins; finally, the last Eligard shot; wealth of advice for hip pain that’s left doctors at a loss.
A heads-up – Dr. E will join us at the next meeting, Dec 19! We’ll start an hour early.
Calendar peculiarities make this our first Tuesday meeting in three weeks. The recording ends suddenly but it’s complete — the meeting came to an unexpected end when one of the moderators pushed the wrong button.
This month marks our only fundraising campaign of the year. All on the AnCan distribution already received our letter, which includes AnCan highlights of 2022. Please consider a donation based on what you’ve gotten from these recordings.
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: Metastasis with PSA of 1 uncovered by chance. Plus a memorable quote from Dr. Antonarakis: “Don’t remember your case? Mark, we could write a movie about your case!” (bn)
Topics discussed
Marking the passing of an on-and-off participant who had his own ideas about therapy; abdominal growth tips off primary care physican to a lymph node metastasis despite PSA of 1; strategies to fill the bladder just right for radiation; scary seizure-like episode at the wheel after chemo; reread of PSMA and Axumin scans at another hospital finds previously unrecognized lesions; “Don’t remember your case? Mark, we could write a movie about your case”; good PSA response from chemo with few side effects; a seldom-made appeal for AnCan donations; low platelets puts a pause on chemo and might preclude Pluvicto later; white blood cell count still isn’t rising; pressing Orgovix maker on PPI interactions; emancipated from ADT by Dr. E; pain-free at last; concordance scan for Pluvicto patient?; ankles swelling — why?
Chat Log
Pat Martin · 6:12 PM I really appreciate your input. I will get bone scan and whole body scan tomorrow. Next week I’ll get results
Peter Kafka – MAUI · 6:36 PM I have a general question prompted by Cliff’s story. Is it routine for tissue taken from a TURP to be analyed for pathology. Might a GL-9 been seen earlier on a lower level?
Tonyfig · 6:37 PM Is there a link for Prostate Cancer Treatment Guidelines?
Carl · 6:43 PM www.pcf.org/guide/prostate-cancer-patient-guide/
AnCan- rick · 6:54 PM For NCCN PCa Guidelines, google NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines(r)) Prostate Cancer Version 4.2022 – May 10, 2022 . I do not have the link , just the download.
David M · 6:59 PM Could have been dehydation?
David M · 6:59 PM dehydration
AnCan- rick · 7:52 PM https://www.foxchase.org/daniel-geynisman
Len Sierra · 7:57 PM Types of PPIs Omeprazole (Prilosec), also available over-the-counter (without a prescription) Esomeprazole (Nexium), also available over-the-counter (without a prescription) Lansoprazole (Prevacid), also available over-the-counter (without a prescription) Rabeprazole (AcipHex) Pantoprazole (Protonix)
Peter Kafka – MAUI · 7:57 PM Pantroprazole, generic name protonix
AnCan- rick · 7:58 PM Maria Calkins …. Myovant
Frank Fabish Columbus OH · 8:09 PM got to go. thanks for listening.
James Davidson (Houston) · 8:14 PM Gotta run – good evening, gents!
Mark Thompson, Rehoboth Beach, DE · 8:14 PM My thoughts and prayers are with you
Herb. Thanks again for all your help. Pain can really get to you.
Pat Martin · 8:15 PM Heading out. See you in a couple weeks
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
