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.
Some of our Blog readers, have attended AnCan’s Speaking Freely virtual group. That’s our men-only meeting that talks about everything and anything EXCEPT treatment. It’s open to all men living with a chronic condition and provides a great opportunity twice a month to get things off your chest and to air issues where another perspective may help. Like all our meetings, it’s free and drop in on the 1st and 3rd Thursday of each month starting at 8.00 pm Eastern in our AnCan Barniskis Room.
December’s second meeting of the month hosted a newbie to Speaking Freely but not to our AnCan Groups. Alan Babcock has been attending our prostate cancer groups for a while; he was finally able to vacate his schedule to make a Speaking Freely group. Alan recently retired from a hugely meaningful and rewarding career where he supervised Disability Services for students at Penn State – Go Nittany Lions!! Over the years, his team enabled thousands of disabled students to graduate .
In the course of the SF group conversation, we spoke about how cancer has impacted our lives – positively and negatively. When Alan mentioned he’d be keeping track of all the gifts received from his prostate cancer experience, we immediately asked for a copy – and here it is.Thanks for sharing your vulnerabilities, Alan and for allowing others to learn and benefit! (Editor: We’ve chosen to put Prostate in parenthesis, because for the large part, we think this applies to most all cancers!! )
Gifts of (Prostate) Cancer
1. I experienced a flood of love and good wishes from family, friends, and colleagues.
2. I returned to therapy, and I deepened my self-understanding.
3. I had the opportunity to confront my mortality, which taught me to think about decisions I make day-to-day.
4. I saw my wife do battle with the medical establishment on my behalf and win.
5. My love for my wife deepened as we confronted a life crisis.
6. I watch myself travel from despair to acceptance. Once again, demonstrating my resilience to myself.
7. I was given the opportunity to learn how to love my wife in new ways.
8. For about the hundreth time, I saw my wife was a tower of strength, and I learned once again that she would always be there for me.
9. I felt my wife’s unconditional love as she held me while I cried for all of my losses.
10. I experienced what it was like to have somebody pray for me.
11. I took control of my well-being by firing my first urologist and finding better care elsewhere, which was empowering.
12. I talked to other men who had prostatectomies about highly personal subjects.
13. I started to learn how to engage in Mindfulness rather than just talking about it.
14. I experienced a high school friend showing how much he cared by not only investigating where I received treatment, but also the physician who was going to perform the prostatectomy.
15. My brother-in-law showed how much he cared by arranging a consultation with a physician at the Dana-Farber Cancer Center.
16. A professor, who I did not know well, gave me her telephone number, and told me to call any time day or night.
17. I learned what was helpful and what was unhelpful when someone was facing a life crisis.
18. I joined a support group, in which I learn much about prostate cancer and in which I receive support.
19. I am learning to accept my limitations.
20. I have helped other men, which has been rewarding
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
December’s second meeting of the month hosted a newbie to Speaking Freely but not to our AnCan Groups. Alan Babcock has been attending our prostate cancer groups for a while; he was finally able to vacate his schedule to make a Speaking Freely group. Alan recently retired from a hugely meaningful and rewarding career where he supervised Disability Services for students at Penn State – Go Nittany Lions!! Over the years, his team enabled thousands of disabled students to graduate .