Hi-Risk/Recurrent/Advanced PCa Video Chat, July 11, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
NOTE: August Schedule Change for Tuesday meeting only – Tuesday, Aug 1 and 15
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Abiraterone can have significant cardio comorbidities (rd)
Topics discussed
Immediate recurrence following RP; older Gent seeks GU med onc after 12 years; PSA fluctuates during Pluvicto; no more Pluvicto problems – maybe thanks to AnCan!; GU med onc in Toronto – but is it needed?; abi +meddling with dosage may have lead to heart issues; older Gent continue Pluvicto; HT therapy does what it should – to the concern of this physician patient; doc raises darolutamide monotherapy; upcoming webinar and August calendar change
Chat Log
Neil Brandom sent · 3:23 PM Note to self : GU Medical oncologist Mathew Rettic UCLA Rana McKay UCSD
Len Sierra sent · 4:59 PM Jack et al., This is why you want to take darolutamide even with a low T level: Nubeqa (darolutamide) is an androgen receptor inhibitor. Darolutamide competitively inhibits androgen binding, AR nuclear translocation, and AR-mediated transcription
Alan Babcock sent · 5:02 PM That makes my wife happy. bye
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 23, 2023
AnCan is grateful to the following sponsors for making this recording possible: 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: Handcuffed by HMO, making the best of it. (bn)
Topics Discussed
Memory issues, but HMO won’t allow him darolutamide — try monotherapy abi?; tumors block TURP surgery, hoping ADT will ease surgeon’s job; AnCan pushes for better Orgovyx pricing; acupuncture and hot flashes; abi first, then enzalutamide — not the reverse; doing well on daro doublet after chemo; Orgovyx probably won’t thin the fog; mulling DEXA scan report; daro monotherapy addresses heart issue; filling the need for exercise with an e-bike; how much vitamin D?; grateful after switching to a GU oncologist; keep alert to side effects in Xgeva and Prolia; AnCan’s prostate cancer forum is back (https://ancan.org/forums); Embr Wave outdoors; landing an appointment with Oliver Sartor.
Chat Log
Harry Spila · 7:58 PM gotta go, take care everyone
AnCan – rick · 7:59 PM Happy riding!
Harry Spila · 8:00 PM 🚴
Mike Yancey – Oklahoma · 8:06 PM Gotta run
julian – houston · 8:06 PM great conversation, as always. Enjoy your Memorial Weekend!
Last month’s Under 60 Stage 3 & 4 Prostate Cancer meeting was small, intimate and produced a true gem from Down Under to benefit all AnCan’rs …
For the life of me, I forget what raised the topic … maybe a Death with Dignity discussion – but Aussie AnCan’r, Steve Cavill told us about the ICE “In Case of Emergency” Checklist Document that he and his wife Leonie, who occasionally attends our Care Partners Group, have both completed. Steve and Leonie reside in the suburbs of Melbourne and are currently heading towards mid-Winter.
This ICE Checklist takes much, if not all, the difficulty out of placing your key information in one place. Like your vital passwords to your laptop, phone or bank accounts; names of key individuals in your life and more. You know .. all that information making it possible for someone to piece your life together if you’re suddenly no longer with us.
Frankly it’s information we should all compile no matter how old. With this checklist guide at hand to march us through it, there can be few excuses. Just remember, this version of the ICE checklist was created in Oz, so it may not be fully applicable Stateside. If one of our US volunteers has time to ‘Americanize’ it, I feel sure it will be greatly appreciated – we have very few solicitors in the US and a few too many attorneys!
Here’s the checklist document in Word format ICE Document Template Now do your part …. and a BIG THANK YOU, Steve Cavill!!
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
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.
