AnCan Foundation supports several conditions that compromise the pelvic floor as a result of surgery, radiation, or just side effects of the disease itself. It can impact continence and sexual function for all!
A non-interventional rehab solution is pelvic floor physical therapy – a sub-specialty in itself.
Join one of AnCan’s favorite superstars, urologist Dr. Rachel Rubin, and esteemed expert Dr. Tracy Sher. Together, shared how pelvic floor exercises can help you recover function!
You’ll also get a ton of questions answered, asked by MS Moderator Kim Stroeh, and Prostate Cancer moderator Dr. John Antonucci.
Watch here:
Special thanks to Bayer, Pfizer, Myovant Sciences, Foundation Medicine, Myriad Genetics, Janssen – Johnson & Johnson, and Telix for sponsoring this webinar.
Check back later for slides.
For information on our peer-led video chat VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 28, 2023
UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one
Wed, 3/39 8pm Eastern
Dr. Rachel Rubin + Pelvic PT Tracy Sher
Register https://tinyurl.com/4sdhzucf
AnCan is grateful to the following sponsors for making this recording posssible:
Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
IF YOU HAVE NOT YET WRITTEN TO THE FDA ABOUT THE PLUVICTO SHORTAGE – PLEASE DO.
DIDN’T RECEIVE OUR REQUEST … LMK rd@ancan.org
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: Genetic test detects a rare mutation — with a treatment — showing the value of somatic testing. (bn)
Topics Discussed
AnCan’s proposals on the Pluvicto shortage get the FDA’s ear; new man hopes for support as salvage winds up; ultrasensitive PSA creeping up — time to worry?; PSA kicks down after darolutamide; is abi “shortage” real?; treading carefully before radiotherapy due to colitis; PSA rising despite Pluvicto — are some metastases non-avid?; PSA OK after run-in with Covid; atrial fibrillation complicates his treatment choices; what’s the story with BAT?; genetic test turns up BRAF mutation, rare in prostate cancer; update on Herb.
Chat Log
AnCan- rick · 6:09 PM WEBINAR tomorrow night …. What’s a Pelvic Floor Therapist …and why you need one! REGISTER HERE https://tinyurl.com/4sdhzucf
Julian – Houston · 6:08 PM I am registered!
Len Sierra · 6:15 PM CDER =Center for Drug Evaluation and Research
AnCan- rick · 6:22 PM WEBINAR tomorrow night …. What’s a Pelvic Floor Therapist …and why you need one! REGISTER HERE https://tinyurl.com/4sdhzucf
David Muslin · 6:39 PM The following are GU Med Ons at OHSU
David Muslin · 6:39 PM Jacqueline Vuky, M.D. Associate Professor of Medicine, School of Medicine ExpertiseCancerCancer and Blood Disorders Special focusBladder
CancerBlood DiseasesBreast CancerColorectal CancerGenitourinary CancersKidney CancerProstate CancerTestis Cancer
David Muslin · 6:40 PM To schedule call 503-346-1500
AnCan- rick · 7:27 PM bicalutamide
John A · 7:35 PM SNMMI just came out with GU guidelines in January–does anyone know what they said about concordance checking?
AnCan- rick · 7:41 PM Life on ADT …. Richard W’s website
AnCan VIRTUALLY speaks to Extended Access Programs!
When AnCan Advisory Board Member, Jeff Waldron asked us to participate in a pharmaceutical industry Conference on Expanded Access Programs (EAP) in Boston at the end of March, we were only to happy to amplify the patient voice.
A couple of background factors. For those of you not aware, EAP is the name given to programs that allow needy patients access to groundbreaking drugs that have not yet received regulatory approval – in the US case, by the FDA. All of our guys who received Pluvicto (Lu177 PSMA 617) through ‘Managed Access’ last year were actually enrolled in a form of EAP. As you may recall, when the FDA approved Pluvicto, the Managed Access Program ceased to exist and patients were rapidly transferred to commercial providers.
Our good friend, Jeff Waldron, has a back ground working with both Payers and Pharma. He is one of our most well-connected Advisors, and for the past 3 years, has organized an international EAP Conference. All but the smallest pharmas have an EAP. The past two years conferences were virtual, but this year it was held live in Boston from March 21-23.
Rick Davis attended virtually on behalf of AnCan to participate in a panel moderated by Jeff entitled,“Closing the Gap of How We Reach Patients”. Ours was the sole direct patient particpation in the 2-day proceedings, and one thing was for sure – they couldn’t miss ‘rd’ as you’ll see from the photgraph alongside. Live feedback was very positive, especially from hearing the difficulties patients encounter. Perhaps the single exception.was a senior drug executive from a pharma with whom AnCan works closely. She presented for 25 minutes immediately before the Panel, finally mentioning patients in her closing sentence. When Rick pointed that out, she was none too pleased.
So what did we say. The take- away points for pharma were:
Publcize your EAP in a way that is understandable and accessible to and for patients
Provide support to the patients’ medical team filling out the paperwork to help eliminate that as a hurdle to access
Respond quickly so patients are not hanging out waiting to hear if they can access the EAP drug
Be sure trialled drugs are available to patients benefitting from their use, if the trial is stopped and the drug has not been approved.
AnCan’rs – just another example of how we ensure your voice is being heard … we have your back!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 20, 2023
AnCan is grateful to the following sponsors for making this recording posssible:
Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
IF YOU HAVE NOT YET WRITTEN TO THE FDA ABOUT THE PLUVICTO SHORTAGE – PLEASE DO. DIDN’T RECEIVE OUR REQUEST … LMK rd@ancan.org
UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one Wed, 3/39 8pm Eastern Dr. Rachel Rubin + Pelvic PT Tracy Sher Register https://tinyurl.com/4sdhzucf
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: What’s to fear about hormone therapy when intermittent is an option? (rd)
Topics Discussed
Recurrent gent from 2013 has not yet had HT .., and fears it; successful hyperbaric Tx for RT cystitis; update on capaversitib trial; ‘young’ man starts IHT after 10 years; how many chemo cycles??; more IHT; what’s the right HT combo with heart issues? … and the right SPOT RT?; very low level recurrence after 6 years; Herb’s brief update; Next Generation Sequencing; dispelling the fear of HT
Chat Log
David Muslin sent · 5:41 PM also Joe, attending these Ancan meetings educated me enough to no longer fear our disease. We welcome your attendance.
AnCan- rick sent · 5:53 PM UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one Wed, 3/39 8pm Eastern Register https://tinyurl.com/4sdhzucf Dr. Rachel Rubin + Pelvic PT Tracy Sher Wed, Mar 29, 2023 8:00 PM – 9:30 PM EDT
AnCan- rick sent · 6:05 PM capavasertib + docetaxel
Richard Tolbert sent · 6:11 PM Jim, I was able to receive $3500 from the Co-Payment Assistance Fund which covered my Feb Orgovyx and Xtandi. Earlier today I received some fiunding support from a private healthcare company which will help. Thanks for asking Jim!
Peter Kafka-Maui sent · 6:14 PM See you all next week. Got to drive my grandchildren down to beach volleyball practice.
George Rovder, Arlington VA sent · 6:14 PM Thank you Gentlemen for your wisdom and caring. Gotta go now.
Jim B sent · 6:15 PM Great to hear that worked out for you! I think that I may have mentioned that I had success with the Mark Cuban Cost Plus web site which gave me access to medications at remarkably low costs.
Richard Tolbert sent · 6:23 PM You did mentioned Mark Cuban Cost Plus. I checked and Orgovoyx and Xtandi are not available since there is no generic. I am also still working to gain co-payment support from Astellas and Myovant.
Henry sent · 6:38 PM What about orgovyx? Just one pill per day, + 2nd line.
Henry sent · 6:39 PM ok Hey Prof. Herb — what do you have to lose from ADT + abi? Everyone cares about you, Prof. Herb!!
AnCan- rick sent · 6:50 PM UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one Wed, 3/29 8pm Eastern Register here https://tinyurl.com/4sdhzucf
Frank Fabish Columbus OH sent · 6:52 PM Got to go guys. Praying for you Herb.
Len Sierra sent · 6:53 PM Continuous vs Intermittent ADT: https://jamanetwork.com/journals/jamaoncology/fullarticle/2436836 Conclusions and Relevance Intermittent androgen deprivation was not inferior to continuous therapy with respect to the overall survival. Some quality-of-life criteria seemed improved with intermittent therapy. Intermittent androgen deprivation can be considered as an alternative option in patients with recurrent or metastatic prostate cancer.
AnCan- rick sent · 7:00 PM peterk@ancan.org
Peter M sent · 7:02 PM Good night gents!
Bob G sent · 7:02 PM Goodnight all.
Michael Wyn, Colorado Springs sent · 7:15 PM thx. g nite
gary peters sent · 7:19 PM Thanks, guys. Take care. G
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!
March’s guest was fantastic, meet Hal Walker!
Hal is a writer, musician and social media sensation from Kent, Ohio (2.3 million TikTok followers). Now mostly housebound and bed-based, over the last two years he has experienced the onset of moderately severe ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome). Hal also produces the weekly Substack publication, Living in a Body. You can learn more about him here.
Hal performed original music on musical instruments from around the world, and discussed using creativity as a survival tool for long haul illness.
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!
Rick Davis attended virtually on behalf of AnCan to participate in a panel moderated by Jeff entitled,“Closing the Gap of How We Reach Patients”. Ours was the sole direct patient particpation in the 2-day proceedings, and one thing was for sure – they couldn’t miss ‘rd’ as you’ll see from the photgraph alongside. Live feedback was very positive, especially from hearing the difficulties patients encounter. Perhaps the single exception.was a senior drug executive from a pharma with whom AnCan works closely. She presented for 25 minutes immediately before the Panel, finally mentioning patients in her closing sentence. When Rick pointed that out, she was none too pleased.
