Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 15, 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.
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.
Editor’s pick: All his scans are saying it: cancer doesn’t live here anymore. (bn)
Topics Discussed
Scan after scan after scan says cancer’s gone; Dr. E gets her proxy hug; no biggie if blood tests are a bit out of range; multiday fasts; recalling Mark Horn; verdicts shift on maybe-metastasis; good experiences with Dr. Singh?; clinical trial prodding from docs; Medicare’s limit on “too many” scans; MSK protection against insurance denials; pelvic floor therapy miraculous for incontinence; spurning cabazitaxel and re-upping for docetaxel; moment of truth arriving as ADT fades; putting Dr. A in the driver seat; listing all the prostate drugs out there; making the new Wassersug edition affordable; solo darolutamide in his future; hidden blessings of an unseeable cancer; docs reconsidering radiation for gyncomastia; any test for PSMA avidity?; sucking on lemons but smiling as Pluvicto drops his PSA; Keytruda’s ups and downs; no PSMA, no point in Pluvicto; husband’s mets reach liver and pancreas.
Chat Log
AnCan – rick · 6:20 PM
That’s why we pay Dr. E the Big Bucks!!!
Julian – Houston · 6:26 PM
Amen!
TonyFig · 7:21 PM
Dr. Wassersug’s book has a couple of tables listing various drugs for different stages of treatment. Since that time, there have been many new approved drugs. Is there any table or listing of the various drugs we discuss on the calls?
Richard Wassersug · 7:30 PM
-Androgen Derpivation Therapy 2023 edition. First author Richard WASSERSUG
Richard Wassersug · 7:31 PM
richard.wassersug@ubc.ca
AnCan – rick · 7:41 PM
Not for a single dose of RT, Richard according to the cariologists we’ve spoken to
Richard Wassersug · 7:41 PM
Good to hear.
AnCan – rick · 7:42 PM
Left sided BCa RT is usually a much higher dose.
Len Sierra · 7:43 PM
I agree with Rick on the breast RT issue. My understanding is that RT to breast tissue for gynecomastia prophylaxis is low dose.
Richard Wassersug · 7:45 PM
Yes, but it is indeed being done less often here in Canada.
Richard Wassersug · 7:46 PM
Meanwhile I have to go. Thank you for letting me join you today.
Len Sierra · 7:47 PM
Thanks for coming!
Peter Gudel · 7:47 PM
I have to go… thanks to all
? · 7:47 PM
If you have Gynecomastia and BRCA you probably don’t want to do radiation because if you get breast cancer, they can no longer treat you fully with radiation
? · 7:48 PM
A real gotcha
Geoff · 7:50 PM
Should we (I) routinely get a FDG scan along with a PSMA scan? Or is it only an issue for Pluvicto patients?
Julian – Houston · 7:52 PM
Thanks guys – have to go.
AnCan – rick · 7:53 PM
For Pluvicto patients – this is the same issue of concordance
AnCan – rick · 7:54 PM
From Pat M …. I use Lemonhead candies to combat dry mouth and it excites the taste buds.
Pat Martin · 8:00 PM
Good night see you next week
AnCan – rick · 8:08 PM
https://pathology.jhu.edu/patient-care/second-opinions
Wendy · 8:56 PM
Here is video on aCaregiving and Coping with Ambiguous Loss https://www.youtube.com/live/iz4NgckybeY?feature=share
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 7, 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 meetings only – next meeting Aug 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.
Editor’s pick: Mayo offers great docs… provided you select them. Otherwise ‘caveat emptor!’! (rd)
Topics Discussed
Recurrent VA patient lucks out at VA-SF; singlet vs doublet therapy; Dr. E gears up for The General; when to go back on HT .. and what HT exactly; PSA spikes after 2 pembros… that can happen!; Mayo fails to get it right around Pluvicto – or maybe it’s just the wrong doc; what’s the difference between LHRH/ADT drugs?; what type of RT is needed?; prostate area lights up – lungs do not??; stay away from the local uro and get back to the GU med onc
How bad is my prostate cancer??? We’ve all asked ourselves that! Today there are tests to predict its gravity early in the diagnosis and after surgery.
How do these tests work?
… what’s inside the ‘black box’ that makes it an accurate crystal ball?
… and are all tests born equal?
… the test manufacturers won’t say BUT one doc who will is Dr. Todd Morgan – he’s looked inside all of them.
Dr. Morgan is Chief Urologist at the University of Michigan and leads the MUSIC* program.
He will discuss:
the difference between inherited and somatic testing
who should undergo genomic testing
how tests are able to predict
his upcoming randomized trial comparing the leading genomic tests, Decipher, Prolaris, and Oncotype DX
… and more including your questions
* Michigan Urological Surgery and Improvement Collaborative
Dr. Morgan has served on several national guideline committees, including the American Urological Association’s Advanced Prostate Cancer Guidelines, the National Comprehensive Cancer Network’s Prostate Cancer Early Detection Guidelines, the American Society for Clinical Oncology’s Localized Prostate Cancer Guidelines, and the ASCO Molecular Markers for Prostate Cancer Guidelines.
Watch here:
Special thanks to Bayer, Pfizer, Myovant Sciences, Foundation Medicine, Myriad Genetics, Janssen – Johnson & Johnson, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
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!
I had the absolute pleasure of filling in for Rick, and interviewing July’s gust Suzie Campbell!
Suzie is a single mom living in Evanston, IL with her two children and a cat named Magic. A Loyola University Chicago alum with a degree in Sociology and Women’s Studies, she now works as an IT manager for a non-profit company. She started telling stories about her life after her hysterectomy at 35 years old and has been seen at storytelling shows such as Story Colliders, Is this a thing? and Filet of Solo. Suzie shares stories that often show that reproductive journeys are not always linear, sexuality is not always straightforward, and that seeking support for mental health treatment – especially in relation to motherhood – isn’t something shameful. She believes if more people talk about these ideas openly, the stigma around them will decrease over time.
Suzie performed “Get F***ed,” a story about sexuality, dating, and her hysterectomy as a newly single mom in her mid-30s.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 1, 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.
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: Good riddance to abi, but the prednisone’s “side effects” were useful (bn)
Topics Discussed
Urgent call for AnCan’ers to help review salvage guidelines — contact Rick; triumphant 0.01 PSA after a year of drug holiday — he doesn’t miss abi, but arthritis is flaring without the prednisone; osteoarthritis from treatment or just old age?; retrying Pluvicto after chemo and side effects are roaring back; blindsided by doc’s recommendation to stand down on treatment; too early for an FDG concurrence scan; as disease worsens, choose a hospice carefully; sky-high testosterone reading while he’s still half-asleep; ED and urinary incontinence — ask radonc or medonc?; terrifying nightmares on olaparib
Chat Log
Jim Marshall, Alexandria, VA · 6:40 PM
Diclofenac Sodium Topical Gel, 1%
AnCan – rick · 7:04 PM
michael.hofman@petermac.org. Dr. Michael Hoffman
AnCan – rick · 7:06 PM
Jerry there is a group that meets in Tucson … I just got a message from them. The group is not that good.
Alan Babcock · 7:22 PM
I have another meeting at 7:30. Until next week
Jim Marshall, Alexandria, VA · 7:46 PM
Jimmy – Top down on a bicycle, try it.
TonyFig · 7:48 PM
Jimmy, Maybe there is a correlation between men having morning erections and your testosterone being up in the morning
Jim Marshall, Alexandria, VA · 7:51 PM
Julian. You actually have EM – erectile MALFUNCTION.
AnCan – rick · 7:52 PM
WE HAVE A HARD STOP in 3 min.
Julian – Houston · 7:57 PM
Thanks guys for the advise! I have to make dinner for the wife.
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: Bones to boners in a little under two hours. (bn)
Topics discussed
A skeleton key to bone strengtheners, plus recommendations on calcium supplements; fracture adds to blood concerns; DLL3 as the PSMA for neuroendocrine PCa; apalutamide might not be a Tweedledee; hot flashes arrive after Firmagon has left the party; you can’t split a quarterback; delayed dose opens chasm of indecision; haze to hunger to relief then back to haze — is it ADT?; penile injections move the needle (not painful, sex great); long or short ADT after salvage; we run an ED joke up the flagpole as a grizzly bear reminiscence escapes.
Chat log
Julian – Houston · 6:56 PM
Have to leave early today. Thanks!
Steve Roux – Elk Rapids, MI · 7:38 PM
Gotta Run – new rescue puppy needs my attention. Great meeting! Thanks for all the info!
Hi-Risk/Recurrent/Advanced PCa Video Chat, July 17, 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 meetings 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: Worth waiting until the end to hear our sonorous tones on the Eastern Front relate liver marker issues during Pluvicto… but maybe down to gabapentin?? (rd)
TopicsDiscussed
New sponsor Blue Earth and Posluma; younger man (55) reports successful treatment; denovo Mx gent needs GU med onc; drug financial subsidies help- one of our gents; hypertension and abiraterone; neurological symptoms; lodging suggestions during treatment; cancer returns to prostate bed; 2nd series of Pluvicto treatments; what to do when PSA makes tiny move off insignificant; ALT & AST swing during Pluvicto – could it be an unrelated drug?; gabapentin issues
Chat Log
AnCan – rick sent · 5:34 PM Dr. Andrea Harzstark
AnCan – rick sent · 5:38 PM rd@ancan.org
Jim Marshall, Alexandria, VA sent · 5:59 PM Zytiga is also called Abiraterone It is generic.
Jim Marshall, Alexandria, VA sent · 6:03 PM Genitourinary Medical Oncologist
Julian – Houston sent · 6:30 PM Dr. E is awesome!!!
AnCan – rick sent · 6:39 PM Who in Houston would talk to me about where to stay when going to MD Anderson. Can you say?
Matt Krieger sent · 6:41 PM What is pluvecto (spelling?)?
Peter Kafka – Maui sent · 6:41 PM Most centers have a sheet with places to stay that work with the hospital. Call your doc’s receptionist
AnCan – rick sent · 6:42 PM Pluvicto
Joe Gallo – Bucks Cty PA sent · 6:45 PM One of our AS moderators Hugh Idstein is a Houston resident if you want any help beyond the hospital list.
Richard Tolbert sent · 6:47 PM I live in the Houston area and can provide some hotel options near M.D. Anderson. (contact rd@ancan.org for Richard’s email)
AnCan – rick sent · 6:48 PM Another question to me from John Babb: As a disabled veteran which base or post would the best to try for housing while I am at MD Anderson?
Matt Krieger sent · 6:49 PM I nap every day at 55 if I can find a way!!
Don Needham – Bend, Or sent · 6:50 PM I nap every day after my walk and weights.
Julian – Houston sent · 6:50 PM Naps are good – I try to take one every mid-afternoon.
Matt Krieger sent · 6:58 PM It seems like everyone here is having PSA tests that have a sensitivity down to like .01, whereas the Kaiser tests I get just say ‘less than .06’ if it’s below that level. Should I be pushing for a more sensitive test, does that have value?
Peter Kafka – Maui sent · 7:00 PM You can try asking Kaiser about ultra sensitive PSA testing. But usually they only use it for guys who have had a prostatectomy as primary rather than radiation,
AnCan – rick sent · 7:01 PM Matt – My suggestion would be not to worry. You still have a prostate. I agree with Peter – not needed if you have a prostate.
Matt Krieger sent · 7:01 PM Got it, makes sense and thanks much —
Jim Marshall, Alexandria, VA sent · 7:02 PM Am using Kaiser and I get the Ultra-Sensitive every month for last year Mid Atlantic Kaiser
Frank Fabish Columbus OH sent · 7:06 PM Got to guys. Thanks guys. Stay strong.
Richard Tolbert sent · 7:07 PM Thanks everyone. Have a great week!
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
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!
We are back with Solo Arts Heal, after a month off. Welcome June’s guest, Dan Baron!
Dan has been writing about social issues that impact people in underserved communities for more than 30 years. He writes content, grant proposals, and strategic communication plans for nonprofits, universities, and public agencies. He has also worked as a journalist. His work has mostly been about listening to the stories people tell about their lives as they advocate for better schools, safer communities, jobs, health care, and many other issues—including their basic human right to just be who they are.
Wait a minute… or more… Dan also realized long ago that he has many personal stories to tell, just like everyone else on the planet. He tells his life-changing story about being a 21-year-old college student overseas who suddenly has a manic episode. Dan is part of a growing community where people share stories that aim to be poignant, funny, bizarre, challenging, and real.
Dan shared his totally unexpected, way-up, way-down, bipolar experience as a college student in the 1980s—and how he has navigated his mental health journey since.
You’ve heard me say it before and it never gets old… nothing gives me more pleasure than AnCan participants getting together outside our groups to meet and greet.
When a new participant in our High Risk/Recurrent/Advanced Prostate Cancer Group revealed recently he was from N. Virginia, not only was he well received by fellow locals but the cry went up for all to meet for lunch before too long. Capt. Jim Marshall led the charge by arranging a lunch in Alexandria at the end of June. I’ll let him tell you more ….
On Friday, June 30th, the DMV (District of Columbia/ Maryland/ Virginia) Brotherhood of AnCan’s High Risk/ Recurrent/ Advanced Prostate Cancer Virtual Group got together for a luncheon here in Alexandria, VA. We met at the Historic “Table Talk”Diner founded in 1976 that has changed little even in the age of rising property values and upscaling everything. On the first row of the photo L-R, is Joel Blanchette, Gary Peters and then standing L-R, myself Jim Marshall, George Rovder, Jimmy Greenfield, Cliff Collins and Richard Cramond.
It was a great opportunity to compare notes on our life situations and treatments but more important to get to know each other. It turns out I learned General Joel actually jumped out of airplanes in the younger days of his military career. Gary is a retired Federal Lawyer. George worked at the US State Dept. George’s husband is a Canadian and they are heading off camping over the 4th . Jimmy G, as we all know, is into music, can work up a real sweat (exercise) when his (new) band one gets going. In his younger days Jimmy was a full-time music teacher for kids and loved it – he still teaches young and old alike. Cliff was a Professor in the Air Force and regularly does 65-mile bike rides. Richard and I worked in close proximity in the 1970s in the forerunner of Space Force; satellites and things. As far as me, I can be found trimming a Peach Tree and also doing my daily 2-3-mile bike rides; consider I have a 15-year head start on Cliff.
We are looking forward to making this a recurring meeting during the year.
Jim Marshall
If any other AnCan’rs in any of our groups want to organize a ‘meet and greet’, please let us know and we’ll help with the contact information …. MSrs in Michigan???
On Friday, June 30th, the DMV (District of Columbia/ Maryland/ Virginia) Brotherhood of AnCan’s High Risk/ Recurrent/ Advanced Prostate Cancer Virtual Group got together for a luncheon here in Alexandria, VA. We met at the Historic “Table Talk” Diner founded in 1976 that has changed little even in the age of rising property values and upscaling everything. On the first row of the photo L-R, is Joel Blanchette, Gary Peters and then standing L-R, myself Jim Marshall, George Rovder, Jimmy Greenfield, Cliff Collins and Richard Cramond.