Hi-Risk/Recurrent/Advanced PCa Video Chat, May 15, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…
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: Controversial Death with Dignity discussion starts – and Keytruda shows up more than once at the back end … after passing Dude Wipes along the way! (rd)
Topics Discussed
Talking ‘Death with Dignity’ with AnCan Advocate; urologist refuses Provenge – get a GU med onc!; pros & cons of treating the primary; timing of RT; handling multiple QBs; Bx find no NEC; salvage RT commenced; clean up with Dude Wipes; brain fog/short term memory loss – drug and non-drug remedies; Flomax and brain fog; some Gents take just 2.5mg/daily prednisone with abi; Eligard & ukuleles; another Gent looks to pembro/Keytruda; proteomics; wean off Prolia; pembro vs chemo decision
Chat Log
Ben Nathanson sent · 5:14 PM As the End Nears: Dying with Metastatic Cancer https://join.compassionandchoices.org/a/end-nears-dying-metastatic-cancer Compassion & Choices https://www.compassionandchoices.org States where medical aid in dying is authorized, and dates when it took effect: Oregon 10/27/1997 Washington 3/5/2009 Montana 12/31/2009 Vermont 5/20/2013 California 6/9/2016 Colorado 12/16/2016 Washington, D.C. 2/18/2017 Hawai‘i 1/1/2019 New Jersey 8/1/2019 Maine 9/19/2019 New Mexico 6/20/2021
Joe Comanda (Philadelphia) sent · 5:21 PM I don’t want to cause trouble, but I am troubled by the advocacy of Compassionate Choices, formerly the Hemlock Society. I would hope that men would not take that way out.
Len Sierra sent · 5:23 PM Everyone has to make that decision for themselves. No one else should make it for them.
rd sent · 5:24 PM We think it’ s each person to his own… AnCan believes everyone has a choice, Joe.
Jim B sent · 5:36 PM Hi Bob, I just had a Pluvicto treatment this morning. No side effects so far but I’m sure that dry mouth, nausea and slight fatigue will continue. How is your WBC coming along?
Joe Gallo sent · 5:47 PM Genito Urinary (GU) Oncologist Dr. Eleni Efstathiou
Peter K sent · 6:37 PM I have had 3 med oncs for over a year now. 2 up to a year ago. They are all valuable and I keep them all informed and they all have vaulable input
rd sent · 6:38 PM MDA – maybe the best cancer hospital … but not the best prostate cancer hospital
Peter K sent · 6:42 PM They are doing MRidian SBRT with View Rayt in Michigan- low toxicity in trials
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 9, 2023
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: Rural denovo metastatic man 6 years out thrives with high PSA … but needs a GU med onc all the more! (rd)
Topics Discussed
Denovo Mx man thrives for 6 years with high double digit PSA; post-ADT, the T’s coming back!; small PSA increase on Pluvicto doesn’t mean failure; single session palliative spot RT + Bx to check disease; T slowly rising on mono daro; starting Xofigo to combat PSMA +/- PCa; what does Dr. A have in store for our BRAF man?; Mayo man moves to Sartor; hard to come by PSMA scan deferred until PSA rises; TMB vs PSMA vs PSA; can you start HT on mono daro?; quick review of CancerABCs conference.
Chat Log
Len Sierra sent · 3:09 PM Does Medicare insurance cover EMBR?
Frank Fabish Columbus OH sent · 3:09 PM I’m not sure
Vic St. Louis, MO sent · 3:10 PM I think only if prescribed by MD as medically necessary
John A sent · 3:27 PM genito-urinary medical oncologist
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…
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: Stay alert for morphing if your PCa acts weird – and great ACS tip if you need a hotel for medical reasons.(rd)
Topics Discussed
Diagnosed 4+5 in 2009 and still going strong; probably ain’t the abi – gotta exercise !; urinary retention; holding steadyl ; snady mouth and Sjogrens could come from Keytruda; Neulasta side effects; watch for small cell and adjust treatment; lung nodule could just be liquid; 97% continent 9 mo after surgery; seeking a Center of Excellence for RT proved wise; ACS can help with hotels; HT shrinks lesions
Chat Log
Tim Valle and Jen Turner-Valle , Boulder, CO sent · 5:07 PM
It appears that prostate bed recurrence after RP + adjuvant RT is 13.3% (ok, almost 15%), after RP alone is 20.6% in the prostate bed, and after RT in-gland recurrence is 64%.
These are links for Dr. Sartor’s bio. They both have him at Tulane.
Ben Nathanson sent · 5:50 PM
If you would like to schedule an appointment to see me at Mayo, you will need to call the Medical Oncology New Registration Phone Line: 507-284-4137 Fax Line for patient records: 507-266-4973. You will need to indicate that you are a patient of mine from Tulane, and we will help coordinate your records to them. Becky and Brigitte can help with Tulane records.
eric sent · 6:23 PM Have to go, but wanted to check in. I doing well excersing everyday and coaching soccer now. I would just say to the group meditate and be active and live while you do it. Talk to you guys soon
AnCan- rick sent · 6:24 PMTx Eric – try to get by 10 minutes aftr we start so we can check in with you
Very good info. I stayed at Extended Stay America a couple of weeks agp and it cost me $200.00 for one night. When I go back I will ask for the discount. Thank you again for the info.
TonyFig sent · 7:12 PM
Many of the cancer treatment centers have social workers. If you contact the social workers, they usually have arrangements with local hotels for free rooms or discounts, plus gas cards.
Robert Glover (Colorado) sent · 7:12 PM
(contact rd@ancan.org) for Rob Glover’s email re. info on America Cancer society hotel reservation info.
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’ll love April’s guest, Tara Lazar!
Street magic performer. Hog-calling champion. Award-winning ice sculptor. These are all things Tara Lazar has never been.
Instead, she writes quirky, humorous picture books where anything is possible. Tara has been, however, a champion adult figure skater, but because of primary progressive multiple sclerosis (MS), she now walks with a walker and drives with hand controls.
She can still figuratively skate, as seen in her book, Little Red Gliding Hood; put on a pair of detective gumshoes, as she did in 7 Ate 9: The Untold Story; and trek into the world of “fun and entertaining vocabulary building” for older kids in her most recent book, Absurd Words, which won a Golden Kite award from the Society of Children’s Books and Illustrators.
She is known by other kid lit writers for her blog, Writing for Kids (While Raising Them), and for hosting her annual Storystorm challenge that attracts more than 2,000 writers to come up with thirty picture book ideas in thirty days.
Tara read from her award-winning kid literature, but let’s be honest, can be enjoyed by kids of all ages!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 25, 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:After surgery, 15% of prostate beds are…what, exactly? (bn)
Topics Discussed
Is PSA uptick to 0.155 ripe for PSMA PET?; Keytruda patience paying off; the sweat is real as he sweats out a decision on longer ADT; bad liver enzymes on Pluvicto plus apalutamide — whodunit?; invisible on PSMA PET, he’s starting darolutamide and hoping for the best; how loved ones benefit from your germline test; doubting and defending murky claim that “15% of recurrence is in prostate bed”; PSA uptick is tiny but he hopes to be proactive; docs disagree on more radiation after PSA rise; getting genetic testing in Canada.
Erwin Zoch · 7:17 PM I’m not sure if this is applicable to the question re. recurrence in the prostate bed, but my recurrence is currently confined to the prostate gland per PSMA PET and MRI scans.
Erwin Zoch · 7:22 PM Thanks for the info. I have to leave for an appointment.
Stan Friedman· 7:42 PM Good night, everyone. It’s my birthday today and have a dinner date with my wife.
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?
