Get ready for a very painterly painting; We’ll squish some paint around to create a very abstracted water lily pond scene based on Claude Monet’s very famous water lilies. We’re looking for very brushy brush strokes! (say that 3 times fast!) The beauty of our virtual art classes is that they can be done anywhere, including for myself on the road in Arizona!
What you’ll need:
Canvas – 9in x 12in or larger
Acrylic paints – blue / brown / white / green / yellow / optional purple or any other color for water lilies
Brushes- flat 3/4in or similar / round size 6 or 8 / round size 4 or anything you consider tiny
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
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
Claire is a poet who has published five volumes of poetry since 1998, most recently Ismene’s Survivable Resistance in 2021. (If you remember the Greek tragedy of Antigone, Ismene is the sister who was left behind to remember the trauma of it all). Claire has been a creative writing teacher and mentor for more than 30 years. She teaches not only at the university level but also dedicates herself to helping students at community centers to use writing to process trauma. In addition, she collaborated on an innovative research project, “Left / Write // Hook,” that uses writing and non-contact boxing to process trauma and led to her co-editing an anthology of participants’ writings. Claire’s work is rooted in her own trauma, which began in childhood, and experiences with physical ailments, which include “keyhole” surgery to mend a broken heart.
Claire read her poetry, which provides her with a survival tool to both navigate and move past experiences of abuse and disempowerment. It explored how survivors’ voices can enter public discourse and instigate lasting social and cultural change. People who have been traumatized may not have a linear narrative. Poetry is a means to integration through the placement of fragments, allusion, association and evocation. Poetry can hold what is too intense to keep internalized.
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
FDA Approves Briumvi (Ublituximab) for Relapsing Multiple Sclerosis
In case you haven’t heard the news by now, the FDA recently approved Briumvi (Ublituximab), by TG Therapeutics, for the treatment of relapsing-remitting Multiple Sclerosis.
The drug is now the 3rd CD20 anti-b-cell therapy on the market for Multiple Sclerosis. Up until now, Ocrevus (ocrelizumab) and Kesimpta (ofatumumab) were the only B-cell targeting drugs available on the market.
This is great news, because B-cell therapies, such as the drugs named above, have all been proven highly effective as disease-modifying therapies for MS.
Given as a twice-yearly infusion, Briumvi is currently available for Relapsing-remitting MS (RRMS), Clinically-Isolated Syndrome (CIS), and Secondary-progressive MS (SPMS).
According to the MS News Today article below, “Briumvi was engineered to be more potent than other anti-CD20 therapies, allowing for lower doses and shorter infusion times.”
MS is a disease of the central nervous system that specifically targets the myelin sheath in the brain and spinal cord. Any time those with MS can get a new medication available to them on the market, it’s a huge victory in the fight against a disease that can take away almost every function in the human body.
If you’re one of us in the MS “club”, join us every 2nd and 4th Tuesdays of the month for our MS group meeting here
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: Is AnCan onto yet another largely unreported side effect – Pluvicto & myopathy (muscle wasting)? And 20% of mHSPC men show progression w/o PSA rise (ARCHES trial)!! (rd)
Topics Discussed
Brainstorming hot flashes – from acupuncture to Megace; pain management; Pluvicto and myopathy; Pluvicto availability poses tx dilemma; more pain management re. Pluvicto; logistics of a Pluvicto session; urine stream and advanced PCa; upcoming Sholz webinar; better evidence from testicular PCa Mx could offer next tx guidance; sleep apnea; Payer attitude to repeat PSMA scans; what sequencing, PSMA and pathology offer; 20% of men on LHRH don’t show PSA rise with radiographic progression (see Len’s Chat post below); next step – BAT
Chat Log
Jim B · 8:17 PM Hi Bob, I am feeling pretty good all around. Finally I am in FL and getting settled in. On my first day here I was able to get a lot more exercise than up in the cold weather. How’s your WBC coming along?
AnCan – rick · 10:06 PM @JeffW .. from Telix – “Medicare typically reimburses one scan for suspected metastases prior to definitive treatment, and scans after definitive treatment (biochemical recurrence) are not limited to a number, but all must meet medical necessity. Commercial payors typically have similar policies, but there are so many different plans that the answer can vary. Almost all commercial payors require prior authorizations so the patient should know if the scan will be reimbursed before arriving for the test.” Hope this helps.
Len Sierra · 10:08 PM Armstrong recommends imaging every 3 months in mHSPC. From the ASCO 2022 Annual Meeting: See yellow highlights below. https://dailynews.ascopubs.org/do/10.1200/ADN.22.200934/full/?cid=DM10522&bid=171588107 ARCHES Analysis Underscores Importance of Regular Imaging to Detect Progression in Patients With mHSPC Receiving Potent AR Inhibitors May 26, 2022 Dr. Andrew J. Armstrong Key Points: • Post hoc analysis of the ARCHES trial identified frequent discordance between radiographic progression and prostate-specific antigen (PSA) progression among patients with metastatic hormone-sensitive prostate cancer (mHSPC) receiving enzalutamide. • The results suggest that regular radiographic imaging, rather than serial PSA testing, is the preferred method for monitoring disease progression in patients with mHSPC receiving a potent androgen receptor inhibitor.
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.
In case you haven’t heard the news by now, the FDA recently approved 