Hello friends! In case you missed April’s AnCan Friends Art Class, we wanted to share the recording with our amazing community. This project uses both crayons and watercolors for a crayon wax resist effect! Check it out below:
You’ll need crayons, watercolors, mixed media paper or watercolor paper, and either a round brush or a flat brush. I happened to use a size # 8 round brush.
In case you’re having trouble figuring out what colors to use, you’ll see a few different examples of paintings I’ve done in the past. Mostly I just had fun experimenting with the colors, and I hope you can do the same, too! We’re always so proud of the work that comes out of this class. Happy painting!!!
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:We are all devastated aboout Herb GRHS – it didn’t have to be this way!
Topics Discussed
Remembering Herbie; another octogenarian with mystery mets; man with a 7.5 Gleason(???) does well on recurrence; community oncologist provides sub-standard care; capaversitib trial failing – sequencing needed; chemo drops nadir – and more sequencing needed; is 8 months ADT enough for early salvage RT?; PSA drops and tumors shrink except for the new one!; Next Generation Somatic Sequencing IS available if your doc says so; monotherapy darolutamide does the trick; exercise + anxietyDr. S accepts our man and orders HT; PROMISE is the path of least resistance.
AnCan- rick sent · 5:23 PM Sponsors Bayer, Pfizer, Janssen, Myovant, Myriad, Telix, Foundation Medicine
sent · 5:36 PM What was Gleason after surgery?
Vic St. Louis, MO sent · 6:15 PM triplet therapy?????
Len Sierra sent · 6:16 PM Good call, Vic. He fits the profile for triplet therapy.
Vic St. Louis, MO sent · 6:17 PM since may 2021!!!
Larry Fish sent · 6:17 PM What kind of scans? Sounds like he may have lit up like a Christmas tree. Then there was probably something to biopsy- eg hip
Vic St. Louis, MO sent · 6:18 PM 10-4
Bob G sent · 6:22 PM Goodnight all. Thanks.
sent · 6:33 PM My name is MarkK and I just joined today. I am stage 4 to the bone and want someone like me to talk to This chat barely works so try spartybbmark@yahoo.com
sent · 6:38 PM Mark Cuban’s discount drug site sells Abbie for $145 for 120 pills. https://Costplusdrugs.com
Pat Martin sent · 6:39 PM I appreciate your input. Going to log off and get this shoe out of my butt that Rick put there See all next Tuesday
Julian – Houston sent · 6:44 PM Thanks everyone! Good discussion as always! Have a good evening.
Len Sierra sent · 6:58 PM Tony, at the site Rick sent you, look for this discussion titled: “Duration of ADT needed with salvage radiation” from Feb 2023
AnCan- rick sent · 7:29 PM Patient Assistance Foundation
I am writing with a very heavy heart to report the death of our dear Board Member, Advisory Board Member, Moderator, Participant and my good buddy, Herb Geller PhD G-d Rest His Soul.
The loss of dear Herb z”l is already reverberating around AnCan and will undoubtedly amplify as more learn of his demise. Herb touched many well beyond his Advanced Prostate Cancer ‘Brains Trust’, Moderators, Peers and Participants. The Blood Cancer group got to know him well when he attended regularly on behalf of his brother. The Pancreatic Cancer folks met him when he showed up for his next door neighbor. Our Men Speaking Freely Group loved and respected him for sharing his fears and concerns. Members of our Advisory Board got to interact with Herb as did Medical Academics and others who participated in AnCan’s research projects.
Here are a few of the words I already see bandied around –
“kind, smart, caring, thoughtful”
“My heart is heavy and I’m at a loss for words. There is something I’m feeling that I can’t express sufficiently”
“this is the deepest hurt since we lost Dominic (2015)”
“Thanks to each of you for your loving support of him and all of us for each other.”
Herb passed away from advanced prostate cancer that had evidently morphed into small cell/neuroendocrine like (NEC) disease. A late diagnosis just one day before he entered the NIH, his place of work, identified this. Herb was scheduled to undergo tests for his highly elevated endocrine markers, however the source was now evident on admission. The NIH never appeared to acknowledge or treat him for this diagnosis. It finally added a neuroendocrine oncologist to Herb’s team after 21 days after repeated AnCan prodding from the date of admission. Herb underwent research procedures related to Cushing’s Disease and its symptoms. In due course, AnCan will follow up as appropriate.
Never one to give up the opportunity to sail anything from a small dinghy to an ocean-going yacht, Dr. Herb Geller was a nationally recognized expert in neuro-biology; a profile is available on the NIH site. Herbie loved a a good Scotch, in Skye or anywhere else. On his request, AnCan did its best to sneak in a wee dram just to wet his lip in the final days but the ‘powers that be’ prevented us. I’ll have one for you tonight, Herb! And, we’ll make sure both your AnCan posters get written up for submission with credit to you.
Herb is survived by his wife of 55 years, Nancy, Director of the Office of Biostatistics for the National Heart, Lung and Blood Institute at the NIH. Also his younger brother, Ken, an eminent Supreme Court Advocate kennethsgeller@gmail.com. We wish Herb’s family and many friends, especially his “AnCan Family”, much comfort. May Herb’s memory always be a blessing – it certainly will be here at AnCan.
For our Jewish readers, Herb’s z”l Hebrew name is Chanan Moshe ben Aaron v’Sara; he died on 25th Nisan.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 11, 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:Cutting-edge diagnostics guide his treatment…but didn’t stop a new tumor. (BN)
Topics Discussed
Talked into HIFU with Gleason 8; finally back to full dose of meds after financial aid; awaiting CT scans for PSA rise 18 months post-chemo; proteomics and RNA sequencing on his new non-PSMA-avid tumor; looking for GU medical oncologist in Seattle area; testosterone is back, PSA and erectile function are undetectable — “2 out of 3 ain’t bad”; red clover, red clover, send the right brand over for hot flashes — or give acupuncture a try; upturn for Professor Herb, but still pushing to connect him with appropriate care; after 40th hyperbaric treatment, cystitis is under control; MSK wants a fly-by as he prepares for SBRT; settling on a dosage tweak for darolutamide; eyeing the future after 4th cycle on BAT
Chat Log
Unknown · 6:14 PM It’s a prostate cancer patient with a family history of prostate cancer who has been treating / managing his cancer with intermittent hormone therapy for 18 years. Diagnosed at age 55. Now, obviously, 73. Says he feels as good today as he did then. Why I am more apt at this time to continue this same course and out off radiation therapy.
Unknown · 6:15 PM *put off*
Unknown · 6:16 PM What is a high flue treatment?
AnCan- rick · 6:17 PM HIFU …. high frequency ultrasound
Unknown · 6:18 PM What prompted the psma?
AnCan- rick · 6:19 PM Rising PSA
John A · 6:25 PM Dr Sheade looks like a medical heme/onc. I don’t see any GU specialty
Julian – Houston · 6:36 PM Need to leave and maybe back later.
Alan Babcock · 6:49 PM What are the possible negative consequences of the treatment you are recommending? What are
the different treatments you considered?
Richard Tolbert · 6:54 PM Patient Access Network Foundation:
Richard Tolbert · 6:55 PM Email: www.panfoundation.org
George Rovder, Arlington VA · 7:06 PM Thank you all for your caring support. See you next time. George
AnCan- rick · 7:10 PM Michael Schweitzer, Evan Yu , Heather Chang
Pat Martin · 7:10 PM Fred Hutch is very active in trials, also.
Len Sierra · 7:41 PM From Mt. Sinai, NYC: Several studies of a proprietary extract of red clover isoflavones
suggest that it may significantly reduce hot flashes in menopausal women. However, the largest study showed no effect.
Jack · 7:49 PM By reputation Himesha Beltran MD at Dana Farber, formerly in NYC is the neuroendocrine guru. I am
sure Rick already knows this but I have heard about her for quite a while. How to hook Herb’s treatment time up with her may be a challenge.
AnCan- rick · 7:54 PM Jack – the two docs on our list are Beltran and Aggarwal, We have direct connnections – but
we will not make them unless a responsible NEC onc is in charge.
Unknown · 7:58 PM NIH definition of Palliative care … https://www.nia.nih.gov/health/
what-are-palliative-care-and-hospice-care#palliative
AnCan- rick · 8:01 PM From the link above ….. What is palliative care? Palliative care is specialized medical
care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 3, 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: Hang in to the end when we have a good discussion around BCR – biochemical recurrence. (RD)
Topics Discussed
Update on Professor Herb; recurrence in BRCA+ man reluctant to undergo salvage RT; firsthand experience with pelvic floor therapy; how does testosterone recover post HT; more chemo vs worsening side effects as PSA plateaus around nadir; what type of RT is being used for salvage?; with Pluvicto shortage, maybe Xofigo first?; Pluvicto triage update; T comes back and PSA moves a tad post treatment; deciding whether to complate Pluvicto cycle; when to intervene post RP as PSA inches upwards; what constitutes biochemical recurrence?;
Ben sent · 5:55 PM An important element of EMBARK was that study treatment was suspended once the PSA was less than 0.2 or if it was less than 0.2 at week 36 and then restarted when the PSA was greater than or equal to five for those without prior radical prostatectomy and greater than or equal a two with those who had received primary prostatectomy.
Terrill SF sent · 6:08 PM must leave early…see you all next time
Anthony Pizzoferrato sent · 6:11 PM I will listen to the video for any more information. Need to go. Thanks everyone.
Anthony Bill Franklin sent · 6:20 PM Wang Gao Shan, also, don’t worry too much about the number but more about how you feel and what you can do. Prior to my treatment my T levels were always over 600. Post treatment it never came back higher than 350 but I really can’t tell the difference. Still very active physically and sexually and no worries. It’s all how you feel.
Jack sent · 6:22 PM excessive B-6 can interfere with the effectiveness of cisplatin.
Frank Fabish Columbus OH sent · 6:31 PM Got to go. Thanks guys.
Mark Thompson, Rehoboth Beach, DE sent · 6:35 PM Thank you all for a great discussion tonight. I have several doctors appointments tomorrow so I am going to bed. Still dealing with extreme fatigue. Thank you, Mark Thompson
Bob G sent · 6:57 PM Oh! will send an email with some ideas
Julian – Houston sent · 6:59 PM Another great discussion. Thanks everyone. Good night.
sent · 7:00 PM Nice meeting everyone. Thank you for the support and constructive input. Be safe. Stay strong.
Don Eisner sent · 7:01 PM Have to leave
Ben Nathanson sent · 7:01 PM PSA persistence/recurrence after RP is defined as * failure of PSA to fall to undetectable levels (PSA persistence) or * undetectable PSA after RP with a subsequent detectable PSA that increases on 2 or more determinations (PSA recurrence) or that * increases to PSA less than 0.1 ng/mL. RTOG-ASTRO (Radiation Therapy Oncology Group – American Society for Therapeutic Radiology and Oncology) Phoenix Consensus: 1) PSA increase by 2 ng/mL or more above the nadir PSA is the standard definition for PSA recurrence after EBRT with or without HT; and 2) A recurrence evaluation should be considered when PSA has been confirmed to be increasing after radiation even if the increase above nadir is not yet 2 ng/mL, especially in candidates for salvage local therapy who are young and healthy.
John A sent · 7:10 PM sorry to leave mid discussion guys, gotta go
Joe Comanda sent · 7:13 PM What is the proper approach to ask questions in this group: 1) save them up for the next meeting or 2) send email questions or 3) put them in this chat list?
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.
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.