Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 17, 2025
(Apologies for late posting… still catching up from GU ASCO25: rd)
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostic.
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
All AnCan’s groups are free and drop-in … join us in person sometime!
Catch weaver, Jose Picayo speaking to AnCan’s Hannah Garrison in Solo Arts Heal about how his weaving has helped him and others heal. Next Wed, Feb 26th at 7.30 pm PACIFIC https://themarsh.org/soloartsheal
Editor’s Pick: Listen to Al L’s 30 yr survival story with a G5+4 (rd)
Topics Discussed
starting on Pluvicto; can a ctDNA test reveal disease – and how do you get it?; photon =proton; can you biopsy a rib – generally not; debulking the primary with radiation; spot RT to T10; do you have to give up alcohol on abi?; good small cell NE like markers.; 30 yr. 5+4 survivor tells his story!
Chat Log
Al L sent: 6:16 PM
biotene
AnCan – rick sent: 6:20 PM
Heh Gents… just back from SF – literally
Len Sierra sent: 6:20 PM Welcome back, Rick!
Jim Marshall, Alexandria, VA sent: 6:33 PM Internet connect tonight is BAD!!!! Will catch all on the recording
Steve L sent: 6:34 PM Compassionate Care Program If a patient is uninsured or is concerned about their ability to pay for Natera genetic testing, they can contact us at Tel:+1.650.489.9050 option 2 | oncologybilling@natera.com
Joel Blanchette, Reston, VA sent: 6:43 PM Try unplugging your headphones
Wes – San Diego sent: 6:44 PM Sorry, yes. Looks good now; question of if there is anything I do to rule out the rib, after an xray was not definitive in identifying an old break.
AnCan – rick sent: 6:57 PM FDG PET scan, Axumin scan
Steve L sent: 7:14 PM I understand that Abiraterone isn’t Chemo, however mine arrives in a bag labeled ” chemotherapy drug ”
Wes – San Diego sent: 7:25 PM No, if a drug is not on a formulary, then deduction does not apply.
Wes – San Diego sent: 7:26 PM I found Blue Cross honors my 3 expensive drugs; medicare B does not.
Dr. Jeff sent: 7:26 PM https://pmc.ncbi.nlm.nih.gov/articles/PMC11116681/ At times rib biopsy can be performed. (Ed: This citation is grossly misleading and should not be considered evidence that a rib Bx is possible in a fragile location: rd)
Len Sierra sent: 7:27 PM Medicare B does not cover any drugs
Wes – San Diego sent: 7:27 PM True, so it would be me adding B, D.
George Wesoloski sent: 7:29 PM My Alt & AST are three times normal. Believe it is due to the Rheumatoid Arthritis drugs, Methotrexate & Arava. Developed a serious body itch & now on Claritin and Zantac for the itch & ceased the Arthritis drugs. Waiting for another blood test in a month.
AnCan – rick sent: 7:30 PM As I said Dr. Jeff – anecdotally most docs will NOT biopsy a rib spot. Especially if it is round the front. It depends where the spot is. You posted a case study, so that is also anecdotal.
Len Sierra sent: 7:40 PM Neuroendocrine biomarkers: Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, synaptophysin positive. DLL3 (Delta-like Ligand 3) is positive in 76% of NEPC.
St. Pete High School’s Senior Service Project Supports AnCan
This past December, the seniors from St. Petersburg High School’s International Baccalaureate program came together to make a difference through their annual senior service project. The students organized a community run to raise funds for AnCan.
The event was a success, with over 50 participants joining in to support the cause. Together, they raised over $700 to contribute to AnCan’s mission of empowering people through connection, support, and shared experiences.
“We find pride and joy in the fact that we could bring our community together for a run and spread awareness about the great efforts of the AnCan foundation,” said one of the organizers.
AnCan is grateful to the students, participants, and everyone who contributed to this incredible effort. Initiatives like this not only provide financial support but also help spread awareness about the importance of peer-led support.
Thank you, St. Pete High School IB seniors, for your hard work, creativity, and commitment to making a difference.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 28, 2025
Made a donation yet? If not, now’s the time – PLEASE! It’s AnCan’s Annual Fundraiser – once a year is the only time we ask for donations.
We’ve received less than 10% from participants, viewers and those receiving the Reminder combined. Time to step up and show appreciation and gratitude if you watch these videos, find them helpful., and want them to continue. Donate now at https://ancan.org/donate/
IF YOU’RE WATCHING THIS VIDEO, PLEASE COMPLETE OUR SHORT, 7-MINUTE ANCAN 2024 SURVEY... https://docs.google.com/forms/d/e/1FAIpQLSfw2B3rZTMWIPqTmzLYBl1CdN9qRJSpt0f72CoK6J00zllzWw/viewform AnCan needs your feedback and we also hope to take the results to medical conferences. We will be closing out in the next couple of weeks, so no more procrastinating please!! Analysis is scheduled to start soon and we are at 454 response in total. Let’s break 500!
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostic.
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
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: After 10 years (with a Gleason 10!) he’s ready for an ADT break. (bn)
Topics Discussed
Just three positive biopsy cores — but they’re in a bad place; five positive cores — but they’re all Gleason 3+3; he’s “an 81-year-old guy who’s been fighting cancer for 10 years” (with a Gleason 10!) and is thinking about a drug holiday; reminders from Rick: donations are still sadly low, and there’s still time to fill out the survey; re-irradiate old metastases that no longer show up in scans?; my docs don’t talk to each other — you’re calling that a team?; he’s never had a seizure till now — was it the Xtandi, and was it really a seizure?; should he fine-tune which statin he takes?; is prostate debulking useful for de novo men?; does he also need spot radiation in his bones if he’s also getting ADT?; those new bone pains might be caused by metastasis, not ADT; his urologist and the MSK nomogram are way apart on prognosis.
Chat Log
Len Sierra · 6:39 PM
https://www.mskcc.org/nomograms/prostate
AnCan – rick · 7:02 PM
PROMISE trial https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
AnCan – rick · 7:29 PM
Survey …. https://docs.google.com/forms/d/e/1FAIpQLSfw2B3rZTMWIPqTmzLYBl1CdN9qRJSpt0f72CoK6J00zllzWw/viewform
AnCan – rick · 7:30 PM
Donations https://ancan.org/donate/
AnCan – rick · 8:06 PM
Study Doug is ref: https://pmc.ncbi.nlm.nih.gov/articles/PMC3255347/#abstract1
Dr. Jeff · 8:09 PM
According to current research, rosuvastatin appears to be more effective than simvastatin in potentially preventing or managing prostate cancer based on studies showing a stronger association with reduced cancer progression and mortality, with some evidence suggesting that rosuvastatin may have a more potent anti-tumor effect compared to simvastatin; however, more research is needed to fully understand the specific differences between the two drugs in relation to prostate cancer. Several studies have indicated that rosuvastatin may be associated with a greater reduction in prostate cancer mortality compared to simvastatin. So there are different conclusions.
AnCan – rick · 8:15 PM
Allen Edel https://pcnrv.blogspot.com/2018/09/no-survival-benefit-to-debulking.html
Larry Schuller · 8:30 PM
Firmagon and Orgovyx are receptor antagonists. Lupron is an agonist. They interrupt the instructions to the testes to make testosterone but agonists have two problems. The first is a testosterone surge (which has to be endured or suppressed) for about amonth and the second is that when you stop, it takes longer for your testosterone to recover
AnCan – rick · 9:03 PM
gdeliguori@imppllc.com
Jim Marshall, Alexandria, VA · 9:04 PM
Ming Zhou – Ming.zhou@mountsinai.org
For men facing cancer treatment, the risk of infertility is a major concern that is often overlooked. While fertility preservation options exist, studies consistently show that a significant proportion of patients are not adequately informed or offered these choices by their healthcare providers before undergoing potentially sterilizing cancer treatments.
The main barriers to men being aware of fertility preservation include limited knowledge and training among providers, discomfort discussing the sensitive topic, low referral rates to reproductive specialists, logistical challenges, time constraints before treatment initiation, perceptions about appropriateness based on prognosis, and patient-related factors like lack of awareness and financial concerns.
It is crucial for men to understand their options for preserving fertility, which include:
Sperm Cryopreservation (Sperm Banking)
This standard and most effective method involves collecting and freezing sperm samples before treatment for future use through assisted reproductive techniques like intrauterine insemination (IUI) or in vitro fertilization (IVF) with intracytoplasmic sperm injection (ICSI). It is well-established and successful for post-pubertal males.
Testicular Tissue Cryopreservation
An experimental approach where testicular tissue is removed and frozen before cancer treatment. The frozen tissue may potentially be used later to extract sperm stem cells for reimplantation or to induce in vitro spermatogenesis. However, no live births from this method have been reported in humans yet.
Gonadal Shielding
Protecting the testicles from radiation damage by using lead shields during radiotherapy. Its effectiveness is limited by patient anatomy and radiation field requirements.
Sperm Retrieval
For males who cannot produce a semen sample, sperm can be surgically retrieved from the testicles or epididymis through techniques like testicular sperm extraction (TESE) or percutaneous epididymal sperm aspiration (PESA). Retrieved sperm can then be used for IVF/ICSI. This invasive option is appropriate when a male cannot produce a semen sample due to conditions like anejaculation, obstructive azoospermia, or prior to puberty.
While sperm cryopreservation is the most established and successful fertility preservation method, sperm retrieval combined with IVF/ICSI can be an option when cryopreserved sperm is unavailable or inadequate. However, IVF/ICSI is more invasive, costly, and has lower success rates compared to using cryopreserved sperm for insemination.
Overcoming barriers to awareness and utilization of fertility preservation options requires improved education and adherence to clinical guidelines from organizations like the American Society of Clinical Oncology (ASCO) and the American Society for Reproductive Medicine (ASRM). Establishing formal fertility preservation programs with multidisciplinary teams, patient navigators, and educational initiatives can help ensure that men with cancer have the opportunity to make informed decisions about preserving their fertility before undergoing cancer treatments.
For questions, please contact Mark Perloe at mperloe@outlook.com
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
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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!
Editor’s Pick: You rarely get out of cancer Scott-free; and treatment decisions complicated by other chronic conditions (rd)
Topics Discussed
Evaluating treatment plan options (radiation, surgery, and hormone therapy) and quality of life issues associated with treatments; Participating in the RTIRE trial for treatment; Understanding different medical reports and tests for prostate cancer; Getting a third opinion to decide between surgery and radiation while seeking the best quality of life outcomes; Life after treatment and having the right mindset; Choosing a treatment option when other chronic conditions/diseases exist; What makes focal treatment a good option.
Chat Log
Jim Stewart Reno, NV sent: 6:25 PM
have to pick up grandkids so signing off….see you all next time!!
