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
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
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.
In case you haven’t heard the news by now, the FDA recently approved