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 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
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.
