Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 20, 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:Let’s talk financial assistance … and a little mutation edcuation!! rd
Topics Discussed
PSA recurrence from mystery source; appointment made with a real GU med onc; what’s this TP53 index – allele frequency??; GU med oncs at MSKCC; chemo drives down PSA but no change in scans; buy a hard hat Dr. Kwon – Oliver Sartor’s inbound!; keep your hair with chemo; monitoring disease post salvage RT; finding financial assistance; when it comes to PSMA scans, mCRPC not the same as mHSPC; PSA up post chemo while abi challenges liver function; MPCP doesn’t provide patient feedback; PSA creeps up on IHT.
Chat Log
David Muslinsent · 6:25 PM
I did say that because he had a met in his girdle
Herb Courtney sent · 6:25 PM
Re the Axumin scan, I had a negative one at a PSA of ~6
sent · 6:30 PM
it took my brother well over a year before his post-radiation PSA started to drop
AnCan – ricksent · 6:42 PM
Bless you Norm!!!
George Rovder, Arlington VA sent · 6:54 PM
Thank you all. I have to go. George
Frank Fabish Columbus OH sent · 7:11 PM
Thanks guys for sharing. gotta go.
Herb Courtney sent · 7:16 PM
Thanks guys. Gotta go to dinner.
John A sent · 7:24 PM
Headache is getting to me so I have to go, but I want to thank everyone who wrote or called me with support since my head injury. If I wrote gibberish or wrote twice to someone sorry, I discovered I sent several emails in a blackout! If I forgot a message try again. I am slowly improving.
gary peters sent · 7:31 PM
I believe Rick may be referring to the Formula 509 trial
Don Eisner sent · 7:40 PM
Have to leave now
Phil Snyder (Houston) sent · 7:52 PM
Have to leave.
Jim – Tucson sent · 8:05 PM
Got to leave, thanks.
Richard Tolbert sent · 8:07 PM
Thanks Jim. One of my former reps works for Pfizer who markets XTANDI with Astellas is working with his leadership to see if they will provide assistance. In 2022 I had a grant from The Assistance Fund that covered both ORGOVYX. I was denied 2023 funding due to lack of funding.
Pat Martin sent · 8:17 PM
Gonna head out. See you all next week
Stan Friedman sent · 8:26 PM
Sorry, I’m fading and need to leave. Thanks for the input on possible MSK docs. Will keep you up to date.
Bob G sent · 8:31 PM
Thanks all. Gotta get up early for program where I’m matched with a cancer researcher. Going to his lab tomorrow morning.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 14, 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: Prostatectomy and recurrence…in a Gleason 3+3. (bn)
Topics Discussed
Rug pulled out on his Xtandi and Orgovyx financial support; two great docs to choose from in Houston; options if you’re de novo, living on Maui, and have Kaiser insurance; 2016 prostatectomy for a Gleason 6 — and now PSA is climbing; nighttime leg cramps as radiation treatments end — try Theraworx, Caleb Treeze, pickle juice; EmbrWave still hot topic; Gleason 10 a decade ago and he’s still going strong; hyperbaric chamber report — ear issues and blood pressure but cystitis is improved; still battling fatigue 9 months post-ADT, though testosterone is back and he’s active; Antanorakis OKs a 6-month ADT shot; mailman won’t stop bringing pills; bladder bleeds during clinical trial but he’s sticking it out; for neuropathy, Voltaren and/or bumpy sandals; half-gallon-a-day drinker of corn silk tea for cystitis; radiation therapy might be OK with colitis.
Chat Log
Peter Kafka-Maui HI · 6:24 PM Dr. Eleni Estathiou at Houston Methodist or Dr. Paul Corn at MD Anderson
Rick · 7:14 PM No gents …. maybe micro Mx.. Pelvic girdle RT stilstan
Rick · 7:16 PM Still Standard
Rick · 7:17 PM High volume 3+3 can warrant surgery
Peter Kafka-Maui HI · 7:19 PM Theraworx
Harry Spila · 7:20 PM therworx is great stuff
Harry Spila · 7:20 PM it’s like a foam
George Wesoloski · 7:22 PM Epson salt (Magnesium sulfate) and soak in the bathtub
Ravi · 7:23 PM I have to leave now. All I wanted to report on was regarding what I am doing for my severe radiation cystitis. I am undergoing hyperbaric oxygen therapy 2 hours every day at 2.5 atm pressure of 100% oxygen. Had 10 treatments so far, about 1.5 more months to go.
Richard Tolbert · 7:26 PM For Leg and Foot Cramps: Proven Old Amish Formula.Caleb Treeze Organic Farms. 818.247.9600. Some health food stores carry , also try amazon.
Rick · 7:34 PM Stay away from 6 month shots
Rick · 7:35 PM Just check T in last 2mo N t hs
Pat Martin · 7:39 PM Capivasertib
Jim B · 7:49 PM Pat, What was the name of the arthritic cream that you use to relieve neuropathy?
George Wesoloski · 7:49 PM I could do an update.
David Muslin · 7:50 PM Prostotectemy praa · stuh · tek · tuh · mee
Pat Martin · 7:52 PM Volteran…diclofenac sodium topical gel 1% I’ve talked with a pharmacist that has concocted up to 5%
Jim B · 7:54 PM Thanks Pat! I’ll be giving that a try for the same neuropathy issues that I’m experiencing from chemo.
Frank Fabish Columbus OH · 7:55 PM got to go guys see you next week
Pat Martin · 7:56 PM I usually get the generic, usually right beside name brand, 10% discount
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