Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 12, 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 respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
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/
Editors pick: His growing prostate tumor causes pain, but he’s “too old” for treatment. (bn)
Topics Discussed
At the end of his treatment road, a spirited Carl Forman speaks to us from home hospice — “it’s almost like a spa”; prostatectomy at age 49, recurrence at 58, now on ADT and feeling “like a Mack truck hit me”; PSA stops creeping higher and stands still; high fever, swollen groin keep returning — is it his artificial sphincter?; radiology report suggests he’s developing MS — why’d medonc say nothing?; growing tumor causes prostate pain, but docs keep ruling out treatments; a month after ADT, testosterone is up tenfold; managing uncharacteristic low spirits after surgery; safe to walk the streets near Penn?; weighing a 20% fracture risk from spine radiation against the benefits; Myovant sold; mutations spring up out of nowhere in new somatic report; update on AnCan’s Great Nonprofits ranking; we’re no stranger to palliative care.
Chat Log
AnCan – rick · 6:12 PM
Forman – over 5 years… Sep 2018
Unknown · 6:17 PM
Carl Forman carl.forman@gmail.com
AnCan – rick · 6:35 PM
Gents – please be aware that AnCan has spoken often about end-of-life options and hospice.
AnCan – rick · 6:38 PM
We actually had an amazing session with Prof Bill GRHS that I think is accessible on our website. I will see it.
AnCan – rick · 6:56 PM
Prof Bill Burhans GRHS discusses hospice and end-of-life https://ancan.org/20064-2/ …..
AnCan – rick · 7:20 PM
cabazitaxel (Jevtana) vs docetaxel (Taxotere)
Alan Babcock · 7:21 PM
I have another meeting. See y’all next wek.
AnCan – rick · 7:24 PM
Suprapubic catheter is a tube above the prostate to the bladder that exits to a bag.
Len Sierra · 7:46 PM
Prostate-Specific Antigen Level at the Time of Salvage Therapy After Radical Prostatectomy for Prostate Cancer and the Risk of Death Derya Tilki , MD1,2,3; Ming-Hui Chen , PhD4; Jing Wu, PhD5; Hartwig Huland, MD1; Markus Graefen, MD1; Osama Mohamad , MD, PhD6; Janet E. Cowan , MA7; Felix Y. Feng , MD6; Peter R. Carroll, MD, MPH7; and Anthony V. D’Amico , MD, PhD8
AnCan – rick · 7:48 PM
Tx Len
Neil Sundstrom · 7:50 PM
someone is breathing heavily and it is hard to hear. Please mute
AnCan – rick · 7:50 PM
It’s John Kish who is speaking
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 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 respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
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: Five of our Regulars wrestle with recurrence this week; and one more is his own best advocate to get a scan(rd)
Topics Discussed
Eminent internist handles Gleason 4+5 diagnosis well; recurrence points to doublet therapy; abiraterone can result in cardio/BP issues; innovative GU med onc addresses lung spots with switching meds before trying RT; Gent finds his own NIH trial to his doc’s chagrin; T. flows back well post Orgovyx; PSMA scan shows oligoMx recurrence – AnCan reassures anxious Gent; with too many lesions, spot RT may yield to chemo; finally feeling better post prednisone; enzalutamide makes another man dizzy; doc agrees on FDG PET for concordance with PSMA but shies away for Payer reasons; neuroendocrine blood markers; Jimmy G remembers Jimmy B. – and Gent shares his Merkel Cell history.
Thanks for those private messages to me about being afraid. I can’t seem to reply privately so thanks everyone!
Len Sierra sent · 7:18 PM
According to Dr. Karim Fizazi, Darolutamide was not associated with a higher incidence of seizures, falls, fractures, cognitive disorder, or hypertension than placebo.
There’s no magic bullet in this prostate cancer game… not even focal therapies, good as they sound.
Listen to world expert Dr. Laurence Klotz speak about what makes a good candidate – and why some come out free of side effects while recurrence may be on the cards for others.
What are the different types of focal therapy and is one better than the other?
Most important for YOU – who’s a good candidate, and who may get suckered by a white shoed urologist??
Join us to find out!
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!
Are you ready for a jam packed show full of storytelling, life advice, laughter, and tears? Well, Geneva Norman will bring it to you.
Geneva is a Chicago-based storyteller and has been a student and actor at The Goodman Theatre, 2nd Story, Free Street Theater, About Face Theatre, The Looking Glass Theatre, and many others. The Goodman Theatre recruited her to be in their first cohort of storyteller teaching artists. She is also a vocalist, songwriter, musician, and music arranger. She has performed throughout Europe, including, Norway, Finland, Sweden, Poland, France, Spain, etc. She has performed with musicians along the west coast of Africa, traveling south along the Atlantic coast to South Africa, and in 47 of the 50 United States. She wrote the locally popular “Obama Vote Song” in 2007. She is the lead vocalist of the Geneva Convention Band and the G2 band. She has arranged many pieces of work throughout her career and is currently the creator and executive producer/director of “The Aretha Project- Chicago Tour”. Geneva comes from a musical family, notably the late Betty Wright, John Legend, and Kool and the Gang.
In her professional life, Geneva has served in progressive roles in clinical healthcare as a nurse, a nurse practitioner, and as a physician. She has survived her own serious health care issues and been a caregiver within her own family. She studied with Dr. Elisabeth Kübler-Ross, who developed the theory of the five stages of grief. At Northwestern University, Geneva serves as Diversity, Equity and Inclusion vice chair for the Osher Lifelong Learning Institute. She is also a proud mother and grandmother.
Geneva told the story of how she, an upper middle class, non-user of recreational drugs, became a pharmaceutical product development chemist/chef for her unsuspecting, streetwise husband.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 21, 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: Giving medical advice vs providing information (as AnCan does)… it’s a delicate balance that one Gent doesn’t want to hear. (rd)
Topics Discussed
docetaxel + Pluvicto trial; PALB2 actionable; spot RT to L4; need a GU med onc NOT uro at SF-VA; FDG scan largely confirms PSMA; coming off prednisone; ACTH test; KP Maui gent needs Dr. Harzstark for IHT discussion; soursop/graviola may help but talk to HCP; post Pluvicto, check concordance; using metformin; blood counts; healthy prostate tissue may muddy the waters; 7 years on abi carries risk of morphing – but Gent doesn’t want to her that; time for IHT??; PSA testing frequency Chat Log
Chat Log
Jim Marshall, Alexandria, VA sent · 5:24 PM
ATM was another mutation which got thrown into the mix.
Joe Gallo sent · 5:31 PM
Webinar: PARP-Inhibitors and Prostate Cancer – Gotta Have a Mutation??? by Alexa Jett | Jul 1, 2023 | Recent News, Webinars https://youtu.be/DErm2tkTiws
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.
