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.
Come float away with us, as we create colorful butterflies in this art class! Watercolor pencils can be found at Dollar Tree, Michaels, Hobby Lobby, any craft supply store. You can also use regular watercolor paints, crayons, and colored pencils. Don’t feel like you need to go out and purchase an entirely new set of supplies!
What you’ll need
Paper – watercolor paper if you are using watercolor pencils or paints
Art medium of your choice – watercolor pencils, watercolor paints, crayons, or colored pencils (if using watercolor pencils or paint)
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?
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
