Hey Friends! If you missed last Thursday’s art class, then I have the recording for you right here! Share it far and wide, and don’t forget to email your pictures to Alexa (Alexa at AnCan.org).
Supplies:
Canvas Size 12in x 12in or similar. Feel free to use a rectangle as well
Acrylic Paints: White, Blue (or whatever other Sky & sea color you want), Orange, Yellow, optional Purple
Palette Knife
Brush: 3/4in or similar
Optional tiny brush OR tooth pick OR cotton swab for optional birds
Water
Napkins
Watch here:
Have fun with this and please don’t hesitate to reach out to Hannah@AnCan.org with any additional comments & questions. Happy painting!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 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: Fateful turns: Belated PSA test, inappropriate focal ablation, diagnosing cancer as BPH. (bn)
Topics discussed
Bad news after 6-year pause in PSA testing; focal ablation to avoid side effects ends in regret; huge prostate but doctor keeps treating BPH; sudden passing of Dennis McGuire from brain aneurysm; taken “right to the edge” with painful BAT side effects; simultaneously treating two kinds of prostate cancer; complications (lung puncture?) after port insertion; are wild hormones signaling a neuroendocrine tumor?; how many PSMA PETs will insurance pay for?; trouble with statins and darolutamide; veteran of intermittent therapy starting ADT again; newcomer can’t find a niche in AnCan’s prostate groups.
Chat log
AnCan Barniskis Room · 6:13 PM Also Telix … who make Ga68 PSMA 11 Illucix
APOLOGIES – No recording for 3/6/23 HiRisk/Rec/Adv Group!!
5 Moderators + some highly vigilant participants all forgot to record last night’s virtual video support group. We blew it, so to our regulars, please accept our apologies.
Amongst the topics, we dicussed an unusual type of foamy gland prostate cancer linked to a recent Epstein article in the Chat. The Group also spoke at length about the mutation SPOP, that we will be sure to cover again another time. And an old chestnut discussed many times before – remedies for hot flashes.
Here’s the Chat Log:
Me to Everyone 06:51 PM Our AS group is only early; possible cure if a true 3+3
Len Sierra to Organizer(s) only 06:51 PM I’d say he’s cured. He probably never needed any therapy as a 3+3
Henry to Everyone 07:07 PM I’ve got SPOP and PTEN; Dr. E indicated to me that SPOP responds better to abi; PTEN not as good.
Len Sierra to Organizer(s) only 07:16 PM Henry, talk to your doc about ipatasertib. It has some activity against PTEN in the IPATENTIAL clinical trial.
Len Sierra to Everyone 07:16 PM Henry, talk to your doc about ipatasertib. It has some activity against PTEN in the IPATENTIAL clinical trial.
Pat Martin to Everyone 07:19 PM What kind of chemo did you go through?
Henry to Everyone 07:23 PM Len — thanks so much for that lead. Once again demonstrating how awesome this group is.
Henry to Everyone 07:26 PM flexeril
Me to Everyone 07:27 PM Embr Wave
Me to Everyone 07:27 PM Red clover.
Frank Fabish Columbus OH to Everyone 07:27 PM Pat it was 6 treatments of docetaxel Jan 21 to Apr 22
Joe Gallo to Everyone 07:27 PM embrlabs.com
Me to Everyone 07:28 PM ANCAN50
Frank Fabish Columbus OH to Everyone 07:28 PM I am determined to be positive and thankful for each day
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 28, 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: Picky treatments like partial salvage radiation and HIFU may come back to haunt you. (bn)
Topics discussed
Hanging tough on Keytruda and seeing where it goes; after crossing the globe for Pluvicto, back to cabazitaxel and and hunting for options; a pill that makes leg cramps vanish; why Erleada when there’s Nubeqa?; atrial fibrillation; tissue staining to detect PSMA avidity; twice treated with HIFU and PSA is going up; risks vs benefits of pelvic girdle salvage radiation; despair turns to hope after an encounter with psilocybin
Ben Nathanson · 7:19 PM I was going to say that Dr A has commented on who’s right for Keytruda…the symptoms of microsatellite instability high, high mutation burden, and mismatch-repair deficiency are all related, but you don’t always see all three. He says: So, when you see all three, a loss of function — mismatch repair mutation — and a high TMB, and the microsatellite instability, you begin to believe that this is a true pembrolizumab-sensitive tumor. Oftentimes you get tricked and you see one of the three or two of the three, and then you are kind of stuck because you sort of want to give pembrolizumab, but you don’t know if that patient is going to respond.
Joe · 7:39 PM on a happy note I’m 6+ years out from Gleason 9s, failing Nov 2016 surgery, mets to lungs and hip, 6 rounds of docetaxel, ever since undetectable…got over my depression, lost 26 lbs since November 2022, on purpose and feel pretty good, also did a meaningful psilocybin ceremony in Nov which helped me reset my outlook…used to be pissed off and sad when I got my less-than 0.01 quarterly…go figure, best to all
Joe · 7:42 PM ohhh sorry on Lupron+Abi ever since docetaxel back in March of 2017, forgot that part hahahahaha
Len Sierra · 7:43 PM Joe, would you like to talk to us about your psilocybin experience?
Joe · 7:47 PM Len yes I’d be happy to if there is time, changed my life 0/1 night/day catatonic/functional
Steve Schuler · 7:58 PM Mine is going to be 38x for total of 68Gy. Whole pelvic + nodes
Steve Schuler · 7:59 PM A complication of mine, is my hip replacement, so the planning needed to work around that. Not sure if that impacts the number vs. intensity
Steve Schuler · 8:00 PM Only 1 for me
Jack · 8:02 PM A good read “A Salamander’s Tale” by Paul Steinberg, MD …a story of 35 plus years of surviving prostate cancer.
Alan Moskowitz · 8:05 PM Need to leave now. thanks guys.
AnCan – rick · 8:18 PM https://ancan.org/joe-boardman-comes-to-terms-with-life/
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!
You’re gonna love February’s show, featuring Sasha Soreff!
Sasha is a New York City-based choreographer, empathy/movement facilitator, and certified transformational coach.
She is currently offering online workshops to support embodying, expressing, and empathizing with grief. Sasha weaves somatic movement, relational neuroscience, and transformational principles together. Through this, workshop participants experience compassionate self-connection and soulful, embodied expression.
As Artistic Director of Sasha Soreff Dance Theater (SSDT), she has been creating and sharing multigenerational, interactive work for two decades, including her signature piece, “The Dancer Who Wore Sneakers and Other Tales,” created in response to a chronic foot condition that reshaped her creative life. Her work has been seen on stages, sidewalks, and community spaces from the Ailey Citigroup Theater to the Queens Museum of Art.
Sasha has taught modern dance and student performance workshops for close to three decades. She is on faculty at NYC’s Gibney Dance and The International Partner Dance Intensive, and recently guest taught at NYU Langone’s Initiative for Women with Disabilities. She has served as a teaching assistant to kinesthetic anatomist Irene Dowd and was a founding company member of Isabel Gotzkowsky and Friends dance company. A Maine native, she graduated from high school at North Carolina School of the Arts with a concentration in modern dance and received a BA from Barnard College.
Sasha shared excerpts from the four eras of her dancing career, which was transformed by her experiences with painful neuropathy and cancer. As artistic director of Sasha Soreff Dance Theater, she created her signature piece, “The Dancer Who Wore Sneakers and Other Tales,” in response to a chronic foot condition that reshaped her creative life. Long-term experiences with neuropathy in her feet, as well as a cancer journey, have inspired her artistry and invigorated her commitment to creating communal spaces for deep empathy, embodiment, and healing.
Alexa, John, and Briaunna even joined in the fun with a dance that you can do too!
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
WEBINAR – ‘The Invasion of the Prostate Snatchers: 13 years Later’: An Evening with Dr. Mark Scholz
By Howard Wolinsky, Peter Kafka and Ben Nathanson
Dr. Mark Scholz, author of Invasion of the Prostate Snatchers, drew a record audience to his AnCan webinar on January 30, 2023.
Registration worldwide was close to 1,000 — nearly double the previous record — with more than 600 watching live.
Scholz’s talk, “Invasion of the Prostate Snatchers: 13 years later” discussed how prostate cancer treatment — and overtreatment — has progressed since the book’s original publication in 2010. The book took aim at a urological-industrial complex performing surgeries on hundreds of thousands of low-risk patients, leaving many impotent and incontinent.
Half those men, he argued, could safely have been followed without aggressive treatment. Scholz, a medical oncologist, coauthored the book with patient Ralph Blum. A new edition was issued in 2021.
While urologists today still unnecessarily “snatch” prostates, Scholz said, the number is far fewer since active surveillance was endorsed in 2007 as a safe and effective strategy. And he said radiation therapy, which he had criticized in the past, also has become safer and more effective.
Still, men come to him thinking they have only two options: surgery or radiation. In fact, they have more than a dozen options, based on the severity of their disease and their preferred balance of treatment and side effects. He urges patients to “obtain facts and apply principles” — replacing assumptions about cancer with informed decisions.
Even for the smaller, but significant segment of men diagnosed with more serious grades of prostate cancer including metastatic, Scholz explained that there has been so much progress in new treatment modalities with limited side effects that many men are living long productive lives living with their disease and not dying from prostate cancer. Dr. Scholz stressed that unlike other cancers, prostate cancer is much slower growing and the rush for treatment in most instances is not necessary.
After the talk, Scholz answered 40 minutes of audience questions.
AnCan moderator Joe Gallo produced the webinar, and moderators Peter Kafka, Howard Wolinsky, and Ben Nathanson relayed questions. Alexandra Scholz, CEO of Prostate Cancer Research Institute, the nonprofit education initiative run by Scholz, edited the video, and she and Peter Scholz lent production assistance.
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?
