Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 5, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
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!
Editors Pick: Crazy increases in PSA suggests therapy is not working; Dr. Bob GRHS (rd)
Topics Discussed
Dr. Bob GRHS’; low level mCRPC – what next?; fermented foods; starting olaparib with somatic BRCA2; chemo holiday for our foamy gland man; long resistant gent starts mono or double HT in the Fall; Vit D and Metformin discussion; heart is solid – PSMA to follow; erratic, fluctuating PSA suggests Tx not working – needs 2nd opinion; Decipher not useful for this situation; stopped abi and prednisone on his schedule + psych issues; 2 gents start start HT for 1st time; Intermittent HT discussion; restarting mono LHRH.
HAHA. Yes. That’s exactly what I was thinking. But yes. The older crowd. I really want to make the under 60 zoom Thursday but I’ll be playing taxi cab during that time. Sigh.
CALCIUM SCORE PRESENCE of CAD (coronary artery disease) O No sign of CAD 1-10 Minimal signs of CAD 11-100 Mild signs of CAD 101-400 Moderate signs of CAD 401+ Extensive signs of CAD
Frank Fabish Columbus OH
sent: 8:33 PM
Thanks for listening guys. Got to run. thanks for the dialogue.
Michael McCabe
sent: 8:42 PM
Got to go guys, see everyone at next meeting
Steve Roux, MI
sent: 8:43 PM
GREAT Meeting guys – I need to take my rescue puppy out for a walk. Goodnight all!
THOMAS M
sent: 8:52 PM
I have used the “Cancer Care” booklet from the FLCCC Alliance, Dr. Paul Marik, MD. The discussion about vitamin D brought this to mind. It suggests repurposed uses of various supplements and pharmaceuticals for cancer treatment. Its worth a glance.
Gary P
sent: 8:55 PM
https://betterdayscounselingllc.com/
John A
sent: 9:10 PM
gotta stop now guys see you next week
Matt M
sent: 9:12 PM
gotta go boys, have a great week! I’ll be on some next onens…..
THOMAS M
sent: 9:22 PM
Time to scoot. Thanks all.
Dr. Jeff
sent: 9:39 PM
gotta sign off. Past my bedtime. see everyone next week
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
Are you ready to get the inside scoop on clinical trials? Get ready to delve deep with former clinical trial nurse coordinator Marni Tierno. We know it can be a complex and overwhelming topic, but don’t worry – we’re here to break it down in a way that’s easy to understand.
Also featuring the vast professional experience of Wendy Garvin Mayo, we’ll tackle the myths and misconceptions that often surround clinical trials, giving you the facts and insights you need to make informed decisions.
Whether you’re a patient, carepartner, or simply curious about clinical trials, this webinar is for you! Our aim is to empower you with a deep understanding, allowing you to make the best choices for yourself or your loved ones.
Some of the topics we will cover include:
Description of the types and phases of clinical trials
Examples of pivotal clinical trials that have changed how we treat cancer
What to expect when participating in a clinical trial (including potential risks and benefits)
Addressing common questions about clinical trial participation
and more!
Watch here: (closed captioning is provided for this webinar, click the CC button at the bottom next to the gear.)
To view the slides from this webinar, please click here.
Special thanks to Bayer, Novartis, Johnson & Johnson, Foundation Medicine, Myriad Genetics, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
And very special thanks to Illumina and Collaborative Cancer Care for letting us have two of their absolute best people present for us!
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To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
Helpful Tips to be Your Own Best Medical Researcher
AnCan asked Mike Wyn, a valued AnCan Frequent Flyer and intrepid researcher, to provide a little navigation to those who are new to research… as well as useful tips for some old hands like myself. I’ve already gathered some research nuggets from Mike’s wisdom… thank you, Mr. W.
Here are a few tips ensure the medical information you are researching is reliable and accurate
Book Research
Check the publication date: authors may need at least a year to write a book, and the average time between a book’s acceptance and its publication is typically between 9 to 12 months. Hence, the data may already be outdated when it hits the shelves
Professional Presentations
Check the credentials, disclaimers, and disclosures of the presenters. Who is the author? What is the sponsoring organization providing the information? Preferred sources are from reputable institutions, such as universities, hospitals, or government health agencies.
Google Web Searches
Use command “site:” to limit you search to top-level domains like .gov, ,org and ,edu. For example, type: latest NCCN guidelines for prostate active surveillance site: .gov OR site: .org OR site: .edu
Be cautious with .com sites unless they are from recognized and credible entities. Medical databases such as PubMed, Cochrane Library, and Google Scholar are good sources for cross-referencing scientific research.
Articles, Online Posts
Check articles, online posts, videos etc. for their sources, including scientific studies, medical journals, or clinical trials. Information from peer-reviewed journals is typically more reliable than content from non-peer-reviewed sources. Poor reviewed means that other people similarly qualified to the author have reviewed teh article adn provided comments.
Anecdotal Evidence
Anecdotal evidence is information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:
Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.
Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.
Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.
Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.
Medical Trial Reports
The phases of medical trial studies cited by published medical papers are:
Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’ means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice. Then studies move on to humans…
Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.
Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..
Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.
Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Statistical Terms
Some terms regarding statistical data cited in medical journals are explained as follows:
N = the number of participants: be wary of studies with a very low N.
HR = hazard ratio: HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR<1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.
CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is <=0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested..
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
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!
Editors Pick: The passing of Jim Barnes; ADT know-how from Richard Wassersug (bn)
Topics Discussed
Passing of Jim Barnes, age 65 — his mutations (P53 and PTEN) may have made actinium/lutetium treatments ineffective; a delicate spot radiation gets moved earlier; after five years of remission, PSA drifts just high enough to be worrisome; blood clots in lungs after his final Provenge infusion — “I actually could feel bumps”; scary bright spot in his PSMA PET appears to be a prostate cyst; OK to start Casodex and Lupron at the same time?; a mini-webinar from Dr. Wassersug on ADT preparedness; Dr. W says metformin does not appear to forestall ADT-induced diabetes; and he updates us on his still-unproven but intriguing estradiol treatments — note, please, that they’re not a way to avoid ADT symptoms!; new team is eyeing PSA before starting radiation; testosterone still trailing after 2-year treatment holiday; at Carbone, we like Dr. Lang — also take advantage of Carbone’s palliative care, and be honest with them.
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.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
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!!
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
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: Gleason 10 de novo going strong 9 years later; sons need baseline PSAs starting at age 35 (bn)
Topics Discussed
De novo Gleason 10 got up-front triplet therapy — and his PSA is still low 9 years later; make sure your mutations are right for Pluvicto; Gemtesa helped him manage a full bladder for radiation; cellulitis isn’t uncommon in radiation therapy, bleach baths may help; the many steps of Mark Finn’s journey to hospice — when is it time to throw in the towel?; SBRT has replaced brachytherapy for many radoncs; there’s not just one kind of rectal spacer for radiation — there are three; important to get the right team, focused on genitourinary care, for radiation; “exercise enthusiastically — kills hot flashes — my personal experience”; PSA undetectable — why all these scans?; thumbs down on Walter Reed for prostatectomies; if you have kids, have them get a baseline PSA at age 35; a son’s PSA of 2.7 at age 39 is “definitely not normal” and an MRI is in the works; entrolled in a trial targeting SPOP mutation — side effects aren’t bad, but also no PSA improvement.
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 were so happy to welcome AnCan’s own, Dan Dressen!
Dan is a moderator for our Active Surveillance Prostate Cancer support group, and also a talented musician from Southern Idaho, with a passion for Americana music. With roots in Minnesota and a stint in both Southern and Northern California, Dan has honed his skills on the guitar since the age 14.
In 1975, while at the University of Minnesota, he filled in as student coordinator at the Whole Coffeehouse. The Whole, as it was know, brought in music that attracted audiences locally, regionally and nationally and he still follows the music and musicians from that time period.
Now today and for over a decade, he has been entertaining at open mic nights, sharing his unique blend of country-inspired tunes with audiences in various venues on West Coast. Married to his wife Lila for 35 years, Dan is joined by their two feline friends Willow and Webster. Drawing inspiration from songwriters such as Guy Clark, Tom Russell, John Prine, and Robin & Linda Williams, Dan brings his own distinct voice to the Americana genre.
You’ll hear warm songs, fantastic stories, and great conversation. Dan has learned the importance of being “active” when taking charge of one’s health journey, and will also share the importance of being your own best advocate. (an AnCan favorite!)
Hi-Risk/Recurrent/Advanced PCa Video Chat, July 9, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
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 Note: Adderall conquers his ADT fatigue — what’s the downside? (bn)
Topics Discussed
Adderall is rescuing him from ADT fatigue — but easy does it; a friend insists his darolutamide led to sepsis; shortening IMRT with SBRT — and which goes first?; topping off the bladder for radiation — a clamp (Lundberg or Wiesner) can prevent accidents; spacer gel for rectal protection in radiation — doctor skill seems to matter; his doc is talking about BAT, but chemo seems a better first option; acute fevers have come and gone since April 2021 — finally, antibiotics and a possible explanation; starts ADT and finds he can finally sleep through the night; solifenacin (new to us) to reduce nighttime bathroom trips; his PSA isn’t responding to ADT — a consult with Dr. E might be wise; we prefer other genomic tests to Guardant; if you’re on a lutamide, watch out for supplements that interact with CYP3A4; he’ll keep the holiday in his drug holiday and put off PSA testing till he’s back; be aware of costs in a clinical trial.l
Chat Log
(Once again, GoTo did not capture the entire log — our apologies)
AnCan – rick · 6:45 PM
We’ve been talking BAT here for many years. Here’s a webinar with Sam Denmeade from 2017 https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/
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 FIRST recorded Low/Intermediate Prostate Cancer Group. It proved to be an excellent and lively session with about half our time devoted to radiation therapy and half to radical prostatectomy/ surgery. 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.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
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: With seminal vesicles positive for cancer in post-surgical pathology, what’s next?(rd)
Topics Discussed
PROSTOX test determines longer term sensitivity to radiation; SBRT vs hypofractionation; Dr. Greco is the go-to RO in the DC are; what does your Rad Onc do for you between sessions?; MIRAGE RT trial to report soon – how effective is MRI Guidance?; does cancer in your SVI post-surgery require follow up treatment?; MSKCC nomograms help guide decisions; with 3+4, when to follow up post-RP; 3+4 man decides to treat with RT; can you get a consult out of state.
Chat Log
sent: 5:14 PM
Dr. Mark. I cannot talk now. My question is not important. I can ask it at our next meeting.
sent: 5:18 PM
Rick. Can you please provide the link to that study you’ve mentioned.
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