Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 6, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
Dr. Mark Scholz revisited his indictment of prostate cancer overtreatment in our recent webinar, “Invasion of the Prostate Snatchers – 13 Years later!” The recording is still in post-production with PCRI and will be posted asap. Please follow YouTube – AnCan or sign up to our blog https://ancan.org/blog/ to receive notice when posted.
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: If you shortchange your treatment, you may live to regret it … plus more anxiety issues (rd)
Topics Discussed
Remote UCLA facility may provide 2nd rate care; gent resistant to do what it takes; don’t worry about post-Pluvicto until you’ve completed it; win-win trial but anxious; AnCan’s PPI message carreid back to Myovant in person; stay off ladders!; pulmonary/carotid lymph node to be biopsied; prerquisites for Pluvicto; starting Orgovyx; low level recurrence – when to intervene?; do Variants of Unknown Significance become significant?
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 24, 2023
Dr. Mark Scholz revisits his indictment of prostate cancer overtreatment in next Monday’s webinar, “Invasion of the Prostate Snatchers – 13 years later!” He’ll also field questions about all stages of prostate treatment — send questions now to Joe Gallo, joeg@ancan.org. Jan 30, 8.00 pm Eastern; register at https://bit.ly/3jN3wAk. Registrants will also get a link to the recording.
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: Radiation, surgery — or none of the above? (bn)
Topics Discussed
Gleason 9 at age 82, and both surgery and radiation look hazardous; cooling doc’s jets on immediate treatment; “triplet” therapy has a piece missing; do mets show up on PSMA PET even at low PSA?; UCSD or UCSF for Palm Springs resident?; biopsy for “unimpressive” lung nodule?; Crohn’s plus radiation therapy ends in severe rectal damage; triple good news on iron, neuro, cardio; puzzling over “0.9” score for P53 mutation; PSMA and genetic testing seem his best options; long after prostatectomy, urinary problems; pain gone after Herb Geller’s spine surgery; which doc for blood in urine?; new genetic test from Myriad; American Cancer Society’s numbers game.
Paul Freda · 6:45 PM If anyone has had experience with a spot on their Pancreas (NOT Prostate), please contact me. Paul Freda pfreda@gmail.com Thank you.
Jim Marshall, Alexandria, VA · 6:55 PM If anyone is considering ADT, ensure you ask for and get a Baseline TESTOSTERONE number. This will be helpful for when you come off of ADT. You will know how high you hope the the level testosterone should return to.
Les Schjelderup · 6:57 PM Agree with Jim.
Joe Gallo · 6:57 PM Adding to Jim Marshall – before ADT also get a DEXA Scan (bone density scan)
Julian – Houston · 7:03 PM Totally agree! This was the protocol I followed.
Joel Blanchette, Miami Beach, FL · 7:07 PM I am at 4 on Orgovyx
Frank Fabish Columbus OH · 7:09 PM Guys I got to get going. On Sunday Gail and I will be heading to Orlando for Myovant annual meeting to present our stories as a patient ambassador and caregiver ambassador for Orgovyx. I will update all in first Zoom in February.
Alan Moskowitz · 7:10 PM I was at 15 after 2 months of Xtandi and Lupron.
Joe Gallo · 7:14 PM WEBINAR – ‘The Invasion of the Prostate Snatchers: 13 years Later’: An Evening with Dr. Mark Scholz It’s for those of us on Active Surveillance (AS), those considering AS, as well as everyone else with more advanced prostate cancer, and everyone in between. Dr. Mark Scholz, co-author of the groundbreaking 2010 book: “The Invasion of The Prostate Snatchers”, will be joining to discuss where we are 13 years later. Spoiler alert: Things are better but the invaders still are snatching and nuking large numbers of prostates unnecessarily. Join us for this fantastic evening Monday, Jan 30, 2023 8:00 PM – 9:30 PM EST Registration URL https://attendee.gotowebinar.com/register/3476369222172706645
Harrison M. (Myriad Genetics) · 7:42 PM the number is reported at around 10-15% men
Harrison M. (Myriad Genetics) · 7:44 PM Tamsulosin
Invasion of the Prostate Snatchers: An Essential Guide to Managing ProstateCancer for Patients and Their Families by Mark Scholz, MD & Ralph H. Blum (Other Press, New York; August 2021)
Summary: “Invasion of the Prostate Snatchers” is a guidebook for prostate cancer patients and their partners. It is of great interest to patients with low-risk to favorable intermediate-risk cancers considering early disease Active Surveillance (AS) since it critically evaluates types of treatment. AS is close monitoring of lower-risk prostate cancers. A patient with prostate cancer (Blum) and a medical oncologist (Scholz) present information patients can use in making key decisions in their care throughout the prostate cancer disease path.
My experience: This book was a just-in-time godsend for me. It was released in August 2010. I was in a holding pattern awaiting a follow-up biopsy at that time.I wasn’t diagnosed until Dec. 4, 2010. My cousin, Maxim Schrogin in Berkeley, California, who was diagnosed in January of that year and was on AS, told me the next day that the first thing I needed to do was get this book. I had it in hand within minutes via Kindle. I devoured “Prostate Snatchers” as I prepared for a second opinion on what, if anything, to do about this cancer.
I went against my first urologist’s advice to go on AS and avoid the side effects of active treatment because AS was not the mainstream approach then. My first urologist tried to rush me into the OR though I only had a single core of less than a millimeter of very low-risk Gleason 6 cancer. That’s the lowest level of prostate cancer,
What I liked about the book: This book helped give me the courage to consider AS and go off the then unbeaten path. It helped prepare me to see Scott Eggener, MD, at the University of Chicago, he told me I didn’t need surgery and was “the poster boy for AS.” A new edition of the book, which came out in August 2021, covers these changes and more. The world has changed since 2010 as reflected in the new edition.” Now,,
multiparametric MRIs have been accepted as the first step when PSAs rise, followed by targeted biopsies. The interval between biopsies is generally longer. Genetic and genomic testing has become more common in the U.S. to help determine whether biopsies are needed and which cancers are likely to become aggressive.
Authors Ralph and Mark plus my wife Judi and cousin Maxim were my “support group” as I became an “active surveillor.” There were no support groups devoted to AS then. I would not meet another patient on AS for seven years. We now have support and educational groups devoted to AS, including those from AnCan and Active Surveillance Patients International.
AS patients are not so rare anymore. We now make up the majority of low-risk patients.
Tips from the book: The book is chock full of background on prostate cancer and actionable information. For example, Scholz weighs in on prostate-specific antigen blood testing: “A PSA is considered a ‘cancer test.’ One savvy patient’s advice is to think of PSA as a nonspecific indicator, like the ‘check engine’ light on your dashboard. An elevated PSA may be due to harmless inflammation, recent sexual activity or even a laboratory error. The first step toward investigating the cause of a high PSA is to repeat the test. If the PSA remains high, the next item to consider is that the prostate may be enlarged (BPH).” The authors point out that if PSA is rising, patients should consider multiparametric MRI and targeted biopsy. Back in 2010, those weren’t quite on the table for discussion.
Nitpicks: No book is perfect. The authors, I think, missed an important discussion on the pros and cons of transperineal vs. transrectal biopsies. Transrectal biopsies can lead to sepsis or other
infections and can miss certain areas in the prostate that may harbor cancers. Also, the authors stressed that patients should seek out MRIs with 3-Tesla magnets. To get into the weeds, some new models with 1.5-Tesla magnets can work just as well and are used routinely at the National Cancer Institute. Discuss these matters with your doctor.
In conclusion:“The Invasion of the Prostate Snatchers” provides a critical look at the prostate cancer “industry” and serves as a bible for newbies considering AS and a reminder to those of us who have been on AS for many years of just why we took the now mainstream approach to low-risk prostate cancer. You can live with these “lame” cancers and not die from them. But you need to maintain
surveillance to detect if your cancer is becoming more aggressive.
Reviewed by Howard Wolinsky, editor of TheActiveSurveillor.com and AnCan moderator
Join our other free and drop in groups: Men (Only) Speaking Freely …1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/ Veterans Healthcare … 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/
Editor’s pick: Pain … is it cancer or something else? And Prof. Herb explains proteomics (rd)
Topics Discussed
Welcome to Myriad; new man hospitalized for heart issues; capaversitib antiangiogetic trial; SBRT side effects; non PSMA sensitive lesions demand chemo; proteomics; pain – is it cancer or something else?; new PCa #s are a scandal in waiting; Brawley the bully; remembering Cal VanZee GRHS; RT proctitis/colitis causes fatigue and urgency; white counts don’t return post chemo; possible recurrence signals return to Center of Excellence GU HCPs … for TWO of our Gents!
Chat Log
Pat Martin sent · 6:31 PM capivasertib….NCT05348577
Bob G sent · 6:38 PM Doing OK – a little achy but that’s from trying Pickleball today. Visiting friends in Outer Banks. Nice to get away for a while. How are you doing?
Pat Martin sent · 6:38 PM I haven’t seen Jeff Marchi from San Francisco for a while…is he doing OK?
AnCan – rick sent · 6:39 PM Jeff is on today if you want to message him
Pat Martin sent · 6:39 PM Just checking on him.
Pat Martin sent · 6:45 PM From the hand out, “works by inhibiting the proliferation of tumor cells.”
Frank F · 6:59 PM Got to go guys. Thanks for the sharing.
John A sent · 7:00 PM goodnight Frank
Jim Marshall, Alexandria, VA sent · 7:18 PM My sister is 71 and just diagnosed with Breast Cancer.
Wang Gao Shan – Panama sent · 7:19 PM My Mom was 73 years old when she was diagnosed with Breast Cancer.
Julian – Houston sent · 7:22 PM have to go for tonight – damn good conversations!!!
Pat Martin sent · 7:30 PM I use dicyclomine
Norm Pollock sent · 7:35 PM biogenesis intestinal support complex and doctor’s best pepzingi
Pat Martin sent · 7:38 PM What kind of chemo were you on?
AnCan – rick sent · 7:39 PM I believe it was only docetaxel
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/
Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
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
