AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, 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!
Editor’s Pick: What do medical medical marijuana and estradiol (E2) have in common? … cardiovascular risks (rd)
Topics Discussed
Is this Newbie getting enough radiation for his high risk situation?; darolutamide monotherapy or maybe a drug holiday?; ARX517 trial – PSMA antibody drug conjugate that carries cytotoxic payload; addressing sleep issues; otc CBN; medical marijuana comes with cardiovascular risks; switching your provider for cause; estradiol and phytoestrogens; early success with AR degrader ARV766; delaying Pluvicto #3 and considering PARP-i; is it a flare or progression?; fenbendazole
Chat Log
Jim Marshall, Alexandria, VA
sent: 3:23 PM
If anyone is facing Open Heart Surgery contact me and I can give you somethings the Surgeon might not mention. Jim 703-338-7341
Jim Marshall, Alexandria, VA
sent: 3:30 PM
Janssen also makes a Generic version oof Abiraterone (ZYTIGA). Have taken it as a generic
After being on Eligard + Abi for 5 years, it took 13 months to recover any testosterone after being on the 2 drugs for 5 yrs. a 90-day Eligard shot can last much more than 90 days
Hi-Risk/Recurrent/Advanced PCa Video Chat, April 15, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
View AnCan’s patient-centered selection of papers and presentations from ASCO GU 2024, one of the top conferences on prostate cancer treatment: https://youtu.be/YweU8hjA0Lw
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: Two younger men face challenging treatment but it’s the older man with the young wife who yearns for his testosterone! (rd)
Topics Discussed
SoC not offered to ‘young’ man with recurrent disease; testosterone replacement therapy; another young Gent with mHSPC needs a GU med onc QB; blood work returning to normal; drug holiday coming up; are glucocorticoids carcinogenic in the short or long run?; high risk diagnosis needs more investigation before treatment decision; there are solutions to ED; successful Tx continues as T returns.
Chat Log
Richard Tolbert
sent: 5:30 PM
The Patient Advocate Foundation, Co-Pay Relief Fund (CPR) Prostate Cancer, Metastatic Prostate Cancer and Prostate Cancer Health Equity are now open. Contact 866.512.3861. Email for portal: The Patient Advocate Co-Pay email portal: https://copays.org/#login
sent: 6:04 PM
Mark. Can’t find you to reply just to you. I am in bed because I had knee replacement surgery 3 weeks ago. Much more comfortable. I actually find my bedroom is the most comfortable place for these meetings.
Richard Tolbert
sent: 6:09 PM
Jeff, it’s Richard Tolbert. Don’t understand the problem. Good luck with your recovery. My wife is at a crossroads with her knee pain, bone on bone. Will need knee replacement surgery in the near future.
sent: 6:11 PM
Mark asked me in a private message why I was in bed, and if it was due to painful bone metastasis.
From the Prostate Cancer Foundation “How Bipolar Androgen Therapy Works” https://www.pcf.org/c/how-bipolar-androgen-therapy-works/ Quite the see-saw therapy. Has anyone heard of this or been treated with it? Thomas
Peter Kafka – Maui
sent: 6:49 PM
Dr. Ming Zhou – Dept. of Anatomic & Clinical Pathology, Tufts University School of Medicine. 800 Washington St, Box 802, Boston, MA 02111 – Have the pathology slides sent there for a second opinion on pathology.
What’s in a Clinical Trial? – Dr. John Antonucci’s Primer
On Tuesday, February 27 at 16:45 EST sharp, a highly-trained, elite squadron of AnCan specialists (Speak for yourself Dr. John -rd) attempted the impossible: to condense the essence of arguably the best scientific meeting on genitourinary cancer research in the world into 1 hour of intelligible, useful information. A couple of hundred scientific poster and oral research presentations from the American Society of Clinical Oncologists annual GU meeting (GU ASCO24), made available and understandable to us AnCan’rs? You can view their attempt as well as the slides at https://ancan.org/patient-highlights-from-the-2024-asco-gu-conference/ and judge how they managed.
To prepare for the session, a basic understanding of research is very helpful. It starts when scientists comes up with a question. For example, “Does Lupron do any good?” They then design a study to answer the question.
Types of studies:
Not every study is an experiment. In an experiment, the scientist does something to the subjects, such as try a new drug, and compare them to a control group, which doesn’t get manipulated. In observational research, the scientist studies the subjects but doesn’t do anything to them. Randomized controlled trials (RCT) are a type of experiment that is highly thought of. If you want to find out if Lupron is any good, you can find 2 groups of subjects with prostate cancer, give one group Lupron, and the other group a placebo (ie no medicine, although you still administer the fake dose). You have to be careful that the 2 groups match, because if you accidentally put most of the healthy patients in group A, they will do better but mess up your results. This is the controlled part: you have to make sure both groups match except for the experimental manipulation. This is partly done by randomizing, assigning the subjects at random to the groups. At the end, you find out how long each group lived (or some other pre-established endpoint) and make a conclusion. This type of study is an experiment. It is also prospective: you create data as you go along which makes it a good study.
One of the several types of observational studies is the cohort study. Cohort studies follow groups to see how they do. For example, you could follow 1000 men over time, and see if the smokers get more prostate cancer than the nonsmokers. This could give a clue into what contributes to prostate cancer and how to prevent it. These studies are often prospective (looking into the future) but can also be look-back, or retrospective as well. A well-known cohort study in prostate cancer is the Canary Cohort that looks at low/intermediate Active Surveillance; or the Framingham Heart Cohort.
A cross-sectional study can answer questions like, what percentage of 50-year-old men have had a PSA test? You have 500 fifty year old men answer the question, and get your conclusion. It’s at one point in time. (The opposite is a longitudinal study, following subjects over time.) Qualitative studies don’t collect numerical data like the others. If you want to find out what life is like on Lupron, you interview lots of men on the drug and get the big picture. The opposite is quantitative, where numerical data is collected.
Naturally, it makes sense to have lots of subjects in any study so you don’t get fooled by chance. For instance, you could flip a coin twice, get heads twice, and wrongly conclude that all coin flips will be heads. So big studies are better than small ones. The number of subjects in a study is known as n. As you’ll see on Tuesday, small ‘n’smake results suspect.
Which type of study is chosen depends on the question, the ethics, and the resources.
Only an experiment, like an RCT, can make a cause-and-effect conclusion, because it’s randomized and has a control group. Other studies can discover correlation; that’s when two phenomena occur together but causation is unclear.
There are studies of studies as well: A Meta-analysis will review and combine several similar studies to make the results even more convincing. A Literature review will review many studies, pick the best, and create a summary for us. Basic science research uses instruments like petri dishes and microscopes to study molecules or cells or tissues; these are in-vitro studies. Lupron started in basic science research. Then it progressed to animal or in-vivo studies. Treatments that look promising at this stage progress to human clinical studies.
Clinical Trial Phases
You will hear human clinical studies presented as Phase I, Phase II, or Phase III studies. According to the FDA, Phase 1 has 20 to 100 healthy volunteers or people with the disease/condition. It lasts several months and is to test for safety and dosage. About70% of drugs move to the Phase 2, where up to several hundred people with the disease/condition are studied for several months to 2 years looking atefficacy and side effects. Approximately 33% of drugs move to phase 3, where 300 to 3,000 volunteers who have the disease or condition are studies for 1 to 4 years to deeply look at efficacy and monitoring of adverse reactions.
A drug like Lupron, when it did well at all these phases, was then submitted to the FDA for approval. After approval it was still followed, in phase IV or post-marketing research, as was given to thousand of patients. Keep the phases in mind if you volunteer to be a research subject.
Screening Test Evaluations
One last thing, which came up in last week’s group: How do you measure if a test is any good? For instance an experimental test for the feared neuroendocrine cancer might be evaluated. Or what if someone asks, “Can PSA test for prostate cancer?” Two ways: you ask, “If prostate cancer is present, how good is the test at detecting it?” This is sensitivity. And, “If the test is positive, how often is prostate cancer really there?” This is specificity.
Your AnCan team looked at all those ASCO meeting presentations from last month. They looked with an eye toward good study design, importance, whether it’s an experiment or not and if so what phase it is, is it prospective, does it have a large-n, and is it of interest to men in our group. Hopefully reding this will make it easier to understand the ramblings of our AnCan Mods.
For those that have been around AnCan for a while, the name Lindsey Byrne should be familiar. Lindsey is a Genetic Counselor at The Ohio State University (James) Comprehensive Cancer Center who specializes in prostate cancer. Click this link, and you’ll see everything she has done with AnCan!
Lindsey recently participated with Janssen Biotech, soon to be referred to as just Johnson & Johnson (JnJ), to make 3 short videos on the implications of the BRCA gene mutation for prostate cancer. This is part of a non-branded education effort as JnJ introduces its newly approved single pill, AKEEGA, that combines PARP-Inhibitor niraparib with ARSI, abiraterone acetate. Lindsey doesn’t just talk the talk; she walks the walk – ask her patient, frequent AnCan participant, Frank Fabish pictured together right. AnCan, btw, is also indirectly connected to panelist GU med onc Cora Sternberg, who went to grade school with one of our gents, and was a good family friend of another.
If the video seems a little stiff, that’s because it has to be fully scripted to meet FDA requirements for the manufacturers. That said, the information is good, understandable and accurate – although it may leave out important additional information AnCan would impart. So if you know very little about BRCA, and want to understand it better, we recommend watching these 3 short videos that you can do in les than 20 minutes. Clickhttps://www.uncoverbrca.com/expert-video-series/index.html
Two short caveats:
even if you don’t have prostate cancer, but your condition has a risk for BRCA mutations, the videos may be helpful. PARP-Inhibitors alone are often a treatment option when BRCA is present in any cancer.
in full disclosure, JnJ is a significant AnCan financial sponsor. However, JnJ neither requested nor required us to promote these videos.
Bang your drum… it could make you smarter and healthier!
I don’t want to work I want to bang on the drum all day I don’t want to play I just want to bang on the drum all day
–Todd Rundgren
Twice in the last several months, the topic of drumming came up in our AnCan Men Speaking Freely group and it generated some excitement both times. So this month’s invite will be on that topic.In my former practice whenever I have given a non-verbal treatment there is a big relief that no talking is involved. In bypassing the verbal and left-brain systems we gain access to a typically unused part of ourselves. I wonder if we can use this approach to cope with our serious illnesses and have a better life?
Our brains have a characteristic called plasticity, the ability to change. You may have heard of this regarding the little finger brain circuit of violinists; it grows as they become proficient. Drummers also have different brains than the rest of us. They have fewer, thicker nerve fibers between the two halves of the brain. They have more efficiently organized motor cortices. (Schlaffke, 2019). Because of this, drummers can do things that we can’t. They can coordinate the two sides of the brain better, and perform motor tasks with greater efficiency. They can play different rhythms with each hand and foot at the same time.
Schlaffke’s subjects had drummed many hours per week for decades. But Bruchhage’s (2020) subjects trained for only 8 weeks and showed several changes in the cerebellum plus changes in the cortex, showing not only cerebellar plasticity but also communication and coordination between the cerebellum and brain sensorimotor areas as well as areas for cognitive control.
Drumming is very complicated, which is why it’s unfair that the lead guitar and vocal guy gets all the girls (Greenfield, J. 2022).
For some reason, there is a close association between beat synchronization (integrating auditory perception with motor activity) and reading ability in children (Bonacina, 2021). Higher synchronization ability predicts better literacy skills. Maybe early intervention involving drumming can improve literacy in kids?
Cahart et.al (2022) showed that drumming can improve behavioral outcomes for autistic adolescents and elucidated some of the neurology involved. Does this mean it could help us?
Drums have been used for millennia for healing, inducing trance, and even psyching up soldiers.
We have learned that drumming is not just about waking up the right brain, but also about connecting the sides of the brain, and the cerebellum with the cortex. It can induce alpha brain waves. It can release endorphins. Even T-cells respond to drumming (Bittman). It induces present-moment experience, which we often work toward to deal with death anxiety. Interpersonal connections are made when people drum together. Despite the effort involved, it induces relaxation. I have come across papers describing drumming and music therapy for a wide variety of emotional problems and currently, there are 8000 music therapists in the US.
How about for us? We see above the possibility of reductions in anxiety, tension, pain, isolation, depression, and over-thinking the past and future. There are many studies of music therapy in ICUs, with patients on ventilators, easing hemodialysis pain, with positive results. Also, helpful with narcotic use, social integration, and depression. MSKCC uses music therapy.
With terminal cancer, there is data showing that music helps breathing, QOL, psychospiritual integration, reducing pain in chemotherapy, radiation, and helps pediatric breast and lung Ca patients (Ramirez 2018, Hilliard 2003, Burns 2015 Tuinmann 2017, Barrera 2002, Li 2011, Lin 2011). Atkinson (2020) found improvement with fatigue. I couldn’t find any studies focused only on Prostate Cancer.
Well, all this scholarly stuff is really unnecessary to anyone who ever banged a pot with a wooden spoon. Kids love it. Adults love situations where it’s OK to be wild and make noise, such as drumming circles and Pound classes. It’s just fun and feels good.
Dr. John Antonucci
Editor: Dr. John wrote this for our Men Speaking Freely Reminder on Dec 7, 2023. It’s such a perceptive, helpful and instructive piece, AnCan wanted to share it widely.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 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 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: Take a trip with ketamine!! + lotsa useful tips this week. (rd)
Topics Discussed
Only ONE QB, and make sure they are the best choice; out-of-touch rad onc; Keytruda fails – moving on to Pluvicto; ketamine provides remarkable insight BUT don’t overdo it; Mettle Health & BJ Miller; community med onc doesn’t provide standard of care; is a PCa collective voice feasible?… old hands think not!; name the doc you want to see via your provider portal; renal cysts are rarely malignant; use FMI’s mobile phlebotomist to save time; how YOU can load images to MyChart; what to do about ADT fatigue… possibly over exercising??; is PSA too low for liquid biopsy analysis when you have known mets?; hotel deals available for cancer treatment.
Anti androgens: abiraterone, enzalutamide, apalutamide, darolutamide
Bob Gsent · 7:02 PM
Have to go now. I’ll be back a lot sooner. Have a good night.
Jim Marshall, Alexandria, VAsent · 7:10 PM
DOD’s Center for Prostate Disease Research gets $110M per year for Prostate Research. They hire contractors to analyze the proposals and do not go outside their own sphere. Jim Marshall
For those that have been around AnCan for a while, the name Lindsey Byrne should be familiar. Lindsey is a Genetic Counselor at The Ohio State University (James) Comprehensive Cancer Center who specializes in prostate cancer. Click 
gents, and was a good family friend of another.
With terminal cancer, there is data showing that music helps breathing, QOL, psychospiritual integration, reducing pain in chemotherapy, radiation, and helps pediatric breast and lung Ca patients (Ramirez 2018, Hilliard 2003, Burns 2015 Tuinmann 2017, Barrera 2002, Li 2011, Lin 2011). Atkinson (2020) found improvement with fatigue. I couldn’t find any studies focused only on Prostate Cancer.