Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 2, 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 reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
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:What next… more Keytruda or switch to Pluvicto?? (rd)
Topics Discussed
Navigating slow-developing recurrence; early days treating denovo lymph mets; Embr to the rescue; post-RT urinary stricture creates problem; hormone therapy poses exercise issues for some of our older Gents; intermittent immunotherapy; new hip after much HT; Group suggests patience before switching therapy; older Gent favors savings to hot flashes; what next when HT does its job? – exercise and a GU med onc!
Meet 1st & 3rd Mondays 0800pm ET and 2nd and 4th Tuesday 0600pm ET . Jim
Boykin Jordan – Springfield, VAsent · 5:48 PM
Thanks Jim — I’ll update my calendar
AnCan – ricksent · 5:56 PM
Embr wave Ancan50
https://embrlabs.com/products/embr-wave-2
sent · 6:08 PM
I’m in Palatine and am always looking for people to bicycle with.
russ hooversent · 6:16 PM
holmium laser enucleation procedure
sent · 6:24 PM
773-294-4151 I’m off to AZ on the 15th for the season, let’s definitely get together in the spring
sent · 6:38 PM
Akeega contains two active substances: niraparib and abiraterone acetate.
Julian – Houstonsent · 6:39 PM
Great talk tonight again! Catch you next week. Thank you.
GARY Zsent · 6:58 PM
Gentlemen – Big thanks to all. Had Mohs outpatient surgery 730am today for basal cell on side of face…need to say goodnight for today’s forum. I look forward to our next one. Best, Gary Z.
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!
Avesha recently returned to her hometown of Chicago, where she has developed a passion for storytelling and the community surrounding it. During her twenty-two years in Los Angeles, she quickly ditched a legal career to put her whole heart and soul into arts and crafts. She spent ten years as a professional photographer before taking a risk to turn her childhood passion into a new career: ceramics. She founded a pottery studio and humbly and gratefully ran it full-time for eight years, crafting housewares and, more recently, whimsical gnomes. Now, she is counting the days until she can escape the city and start a small homestead, complete with chickens and goats.
She is deeply committed to speaking truth to story and bringing awareness to mental health and trauma-informed, shared human experiences. To her, connection is everything, to be human is to have trauma, and to heal, we first need to learn how to feel. She holds an MA in Spiritual Psychology, is trained in many healing arts, and was certified recently as a Breathwork Facilitator and Reiki Master.
Avesha will take us on a journey into the complex love between her and her father. She’ll tell of the time when her dad selflessly traveled to care for her when she was bedridden with meningitis. Years later, she found out that he had unexpectedly died alone, estranged from his relationships. She’ll tell the story of caring for the aftereffects of his life and continuing the journey of a relationship that still grows and heals through forgiveness, writing, music, and the love of nature he instilled in her.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 26, 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: PSMA scan miraculously clear but they waited 2+ hours to take it — is it great news or a washed-out scan?
Topics Discussed
Lupron, radiation, and chemotherapy haven’t worked for non-PSMA-avid Vietnam vet who’s now struggling with neuropathy; kidney transplant complicates a choice between surgery and radiation; five years of ADT success despite multiple bone mets — due for a drug holiday?; metastasis is gone in his new PSMA scan — but maybe they bungled it; time to scale back from monotherapy to nothing?; check your urine before depending on calcium supplements or they might not work; Bayer won’t help pay for darolutamide — what are my options?
Chat Log
Jim B · 6:31 PM
Hello David!
AnCan – rick · 6:37 PM
Sumit Shah is a GU med onc
Jim Marshall, Alexandria, VA · 6:41 PM
Am Vietnam Vet. Marshall-James@comcast.net 703-338-7341 and a 100% Disbaled Vet
Joel Blanchette Reston, VA · 7:01 PM
Paller Channing
Matt Krieger · 7:06 PM
For Boykin, what makes a protastectomy less likely to cure, is it the evidence of vesicle invasion?
Matt Krieger · 7:09 PM
Thank youm and this sounds familiar, my nomogram had a lower likelihood of cure with protastectomy than what Boykin’s sounds like.
Jim Marshall, Alexandria, VA · 7:26 PM
Sounds like a Bone Scan is in order to find out if the Bone Meds are still active. Jim
Jim Marshall, Alexandria, VA · 7:28 PM
Abby for 5 years, 13+ months Holiday and Testosterone took 10 months to begin to recover. Then it was 113, 33, 134.
Boykin Jordan – Springfield, VA · 7:29 PM
What is oktehome?
Jim Marshall, Alexandria, VA · 7:29 PM
Castrate you like they do bulls.
Gary P · 7:29 PM
orchietomy
Jim Marshall, Alexandria, VA · 7:30 PM
Goodbye the family jewels.
Gary P · 7:30 PM
orchiectomy
Boykin Jordan – Springfield, VA · 7:30 PM
I got it now. Thanks!
AnCan – rick · 7:32 PM
https://www.prostatecentre.com/about-…
Kirt Schaper · 7:39 PM
PYLARIFY® (piflufolastat F 18) Injection Fluorine F 18 decays by positron ,(β+) emission and has a half-life of 109.7 minutes
AnCan – rick · 7:40 PM
Elimination Half-life: 3.47 hr Excretion: Urine (~50% [first 8 hr post dose])
Kirt Schaper · 7:41 PM
elimination half-life is the length of time required for the concentration of a particular substance (typically a drug) to decrease to half of its starting dose in the body
David Muslin · 7:43 PM
Very smart to measure the time waiting and checking name on pee cup. Good lesson for us all.
AnCan – rick · 7:43 PM
LEARN MORE ABOUT HOW 18F IMPROVES IMAGE CLARITY PET/CT with 18F has higher sensitivity and better resolution than PET/CT with 68Ga, potentially facilitating more accurate interpretation and reporting of disease assessment16 18F has a longer half-life than 68Ga (110 minutes versus 68 minutes), allowing for more widespread availability as well as more convenient and flexible scheduling for patients and staff3,17 https://www.pylarify.com/pca-imaging
Bob McHugh · 7:45 PM
My PLY scan at Mtg. Sinai was performed at 76 minutes,
Unknown · 7:49 PM
Thanks all!
Unknown · 7:57 PM
Thank you, Rick, Dr. John, James M. , and everyone! I look forward to participating next week.
Jeff G · 8:15 PM
Since I started eating tofu daily and recently started soy isoflavones, my hot flashes are gone
Jeff G · 8:16 PM
IsoRel 200 mg daily ( isoflavone)
Here at AnCan, we like to highlight the perspectives of every person that enters our virtual “door”, so to speak. That includes religious perspectives; we are SO proud of how diverse our community is. So, as such, these views aren’t an official AnCan viewpoint.
Now that that’s out of the way, we just thought we would share a more religious perspective on a person’s cancer journey. In her blog, Stingray of Sunshine, author Dana Hendershot asks the question, “If it is truly a God blessing that my cancer was found early, then I also have to believe that God did NOT bless the person whose cancer wasn’t caught early.”
Author, and cancer survivor, Dana Hendershot, goes into depth about those words and phrases that others might deem comforting to someone going through cancer. Phrases like “God has his reasons” are the opposite of comforting for her.
CLICK HERE to read Hendershot’s blog post about her “Theological Quandary”
No matter our religious (or nonreligious) perspective, these sentiments may be felt by many in our community – regardless of which illness you may have.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 18, 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: Great session … lots to choose from but benchmark for adrenal markers pre-abi just beats out Adverse Events! (rd)
Topics Discussed
More MRI’s required; risks if any from gadolinium; 2nd opinions on PSMA scan at Fred Hutch; two treatments – which brought success?; metformin – yes, no or ???; tiny changes in ultra sensitive cause anxiety; when to intervene on IHT; soy isoflavones recommended pre- radiation; two sides of anti-oxidants; BPH treatment prior to PCa radiation; best Tx combination for high risk Dx; successful switch to darolutamide; reporting Adverse Events; lazy adrenal gland survives post-prednisone wean; pembro doesn’t show result after 2 sessions – what next?
and here’s the link to the webinar he did for us https://ancan.org/webinar-active-surveillance-and-beyond-continuing-the-conversation-on-mpmri-with-dr-antonio-westphalen/
From the abstract …. The results suggest that soy isoflavones taken in conjunction with radiation therapy could reduce the urinary, intestinal, and sexual adverse effects in patients with prostate cancer.
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
