Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 10, 2023
Our first Tuesday session of 2023. Happy New Year to all … may it be healthy!
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/
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Editor’s pick: A spectrum of therapies (proton beam, BAT, CAR-T, PARPi, Pluvicto) plus unanswered questions on the connections between PSA, PSMA, and CT scans. (bn)
Topics Discussed
Will proton radiation spare his colitis (aggravated by transrectal biopsy)…or make it worse?; cystitis 18 months after radiation leads to surgery and a prescription for hyperbaric oxygen — how safe?; testing after surgery shows new lesions and doubled PSA; can undetectable PSA with known mets still yield a meaningful PSMA PET?; will finding from ARCHES study persuade doc who rejects anatomical scan?; to fix low iron, stop taking so much; happy to see a lung lesion disappear; 8 days into BAT (and insurance approved it!); back surgery for Prof. Herb’s pain; no-chemo-required trial for Pluvicto; CAR-T a strong possibility as he runs low on options; platelets crashing — why so much chemo?; is “node-only” local or widespread?; good lab news on a birthday; PARP inhibitors without a mutation; preparing for scans as his low PSA moves the needle.
Chat Log
Unknown · 6:16 PM First Tuesday meeting. First meeting of year on 1/2/23
AnCan – rick · 6:36 PM Peter – can you see the hands up?
Peter Kafka-Maui, HI · 6:37 PM i cant see raised hands
John A · 6:38 PM it’s Jim Marshall with the raised hand
George Southiere · 6:38 PM can see them
Richard Wassersug · 6:42 PM I just looked in PubMed on “colitis” “proton beam therapy” and “prostate cancer”. Nothing came up. So no evidence that PBT is better or worse for colitis.
AnCan – rick · 6:47 PM @Richard – have you read the article I posted? I believe it suggests that GI side effects are worse with Proton. Not specifically related to colitis.
Pat Martin · 7:04 PM Sorry to have to leave. I’ll be back next week
Richard Wassersug · 7:07 PM I just checked on PubMed and found a couple of papers reporting several features of the visual system that are at heighten risk of oxidative injury with extensive hyperbaric oxygen exposure. But I only scanned the abstracts and I don’t know how high the risk actually is. At least we now know that there is published research on this topic!
Tonyfig · 7:43 PM There has been some studies about iron’s role with cancer. Here is a Pubmed article . https://pubmed.ncbi.nlm.nih.gov/30130469/. Tumour cells and bacteria need iron to grow, and your body tries to starve them of iron by diverting the iron from the blood to storage sites deep within the tissues. It is well known, biochemically, that if you add iron to tumour cells in cultures, they grow at a much faster rate and that breast cancer cells thrive on iron. In 1988, many studies began to surface showing that iron was indeed a risk in common cancers such as lung, colon, bladder, oesophagus, and at levels that were shockingly less than doctors had previously considered dangerous. A study in the New England Journal of Medicine (Oct 1988) by Dr Richard Stevens showed that as iron saturation levels increase, cancer rates go up. Until that time a 65% of saturation level was considered to be safe, but this study showed that at a 37% saturation level, the cancer rate started to skyrocket, and doctors began to question the levels they had previously considered safe. In January 1944, in the International Journal of Cancer, Dr Stevens reported that cancer rates were increasing at levels of only 31%.
Mark Finn · 8:01 PM Protocol number – IRB21-0411. Sponsored by Bellicum.
Joe Gallo · 8:03 PM Sorry to be late
Frank Fabish Columbus OH · 8:04 PM Got to go guys. Happy new year to all. Stay healthy.
Joe Gallo · 8:05 PM Sorry they didn’t show. I had someone over at CSC who need help
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
AnCan can’t say this enough times … nothing gives us more pleasure than when our Peeps meet up. Our survey last year found that some 35% of our participants make new and lasting friendships outside our groups. That’s our gift to you as well as to ourselves!
Late last month two of our sterling Volunteers met up. Capt. Jim Marshall (USAF) headed south from Alexandria, Virginia to spend a month in Melbourne, Florida, home of our Active Surveillance Prostate Cancr Moderator, Garry Tosca. Here’s what Captain Jim had to say about their lunch meeting:
During my visit down in the Melbourne, FL area in November I got to meet up with fellow AnCan Vet, Garry Tosca and his lovely partner, Trish, for lunch on the edge of the Indian River at the Old Fish House. Both of us are Vietnam Vets where my time was spent in Saigon at Tan Son Nhut Air Base in Computer Operations.
Garry did less than two years in the Army with just enough time to be in the thick of fighting in numerous locations in Vietnam. He is my hero earning the National Defense Service Medal (received by all of us just for joining or drafted & affectionately known as the “pizza stain,”), Vietnam Service Medal with a couple of Bronze Stars for fighting in Campaigns, Republic of Vietnam Campaign Medal and the prized Bronze Star.
Bronze Star Medal — a highly respected military decoration given to service members who distinguish themselves while engaged in action against a foreign force
I do understand his most coveted award is the Combat infantry Mens Badge.
The Combat Infantryman Badge (CIB) is a United States Army military decoration. The badge is awarded to infantrymen and Special Forces soldiers in the rank of Colonel and below, who fought in active ground combat while assigned as members of either an Infantry or Special Forces unit of brigade size or smaller at any time after 6 December 1941.
I did learn something I had never thought about concerning VA Disability Ratings associated with Prostate Cancer (PC). With me and the StageIV Metastatic PC plus Vietnam, it is an automatic 100% Permanently Disabled Rating; a real no brainer with a minimum of paperwork needed. Garry is on Active Surveillance now for a number of years, is also considered 100% Disabled even though he is Gleason = 6(3+3).
It now makes sense for when a Vet is undergoing treatment, he/she is rated at 100% until some kind of resolution either one way or the other. Therefore documenting in excruciating detail all that happens during Active Surveillance can be shown as undergoing treatment, actually “continual treatment“. Hopefully he will stay at 100% Temporarily Disabled for the duration even if his PC never goes beyond Gleason 6.
I want to thank Garry & Trish for being such gracious hosts and when I return in the Spring, hopefully we can get caught up on things.
Just a reminder that AnCan now runs a Veterans’ Health Navigation Support Group, attended by both Jim and Garry and expertly moderated by Capt Joe Gallo (USMC). The group includes a vast amount of experience including administrators and physicians who worked in the VA for decades. It can help with everything from ratings and benefits to treatment. We also have folks using TriCare adn Tricare for Life. Sign up to receive a Reminder at https://ancan.org/contact-us/
During my visit down in the Melbourne, FL area in November I got to meet up with fellow AnCan Vet, Garry Tosca and his lovely partner, Trish, for lunch on the edge of the Indian River at the Old Fish House. Both of us are Vietnam Vets where my time was spent in Saigon at Tan Son Nhut Air Base in Computer Operations.