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.
Hi-Risk/Recurrent/Advanced PCa Video Chat, April 1, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Myovant, 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: • ASCO GU 2024 conference highlights https://www.youtube.com/watch?v=YweU8hjA0Lw&t=2s
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: Androgen Receptor degrader ARV766 arrives ahead of its webinar later this year (rd)
Topics Discussed
Diagnosed at 52 and concerned about recurrence at 61; pulse and bloods back to normal – was it the RT?; Metastatic Directed Therapy is not for everyone; starting AR degrader ARV766 trial; issues arising from RT proctitis and hemorrhoids; military vs civilian medical care; questioning pembrolizumab and its toxicity with TMB of 8.6?; abscopal effect from RT with Keytruda
Prednisone raises neutrophils and lowers lymphocytes. Par for the course with taking prednisone. My neutrophils are high and lymphocytes are low. Still on it Been on it for 8 months. When it is stopped the numbers should return to normal
Bob G
sent: 6:28 PM
slow creep is good!
sent: 6:29 PM
Our hearts are with you Dr. Bob
Chas Ryan
sent: 6:33 PM
Thank all of you for sharing this evening. Bob G, good luck with your treatment. I have to depart the meeting. Until next week,…
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.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 18, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Myovant, 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: • ASCO GU 2024 conference highlights https://www.youtube.com/watch?v=YweU8hjA0Lw&t=2s
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: Calcium, bone strengtheners and 2 Newbies with different approaches – one at the end.(rd)…. & FYI it’s Len’s B-day today (3/19)!!
Topics Discussed
4+5 Newbie does well on first treatment protocol; caffeine issues; Space Oar; 14x Jevtana Tx… and another foamy gland compatriot; does HT kill cancer cells or just make them dormant?; pros and cons with balancing calcium; which 2nd line AA to start with; great discussion on bone strengtheners; avoid 6 month Depot LHRH; started Pluvicto; this latecomer Newbie self medicates
Chat Log
TonyFig
sent: 6:04 PM
Calcium connection with AFib. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8782034/
Jim Marshall, Alexandria, VA
sent: 6:07 PM
There goes my Ice Cream.
AnCan – rick
sent: 6:09 PM
She is a GU med onc
AnCan – rick
sent: 6:18 PM
Dr. Jeff – you do NOT want to be on a 6-month shot!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 4, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Myovant, 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: • ASCO GU 2024 conference highlights https://www.youtube.com/watch?v=YweU8hjA0Lw&t=2s
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: Here’s how to investigate if there’s a personalized/precision treatment for you (rd)
Topics Discussed
Exhaustive personalized/precision treatment pursuit; two successive Gents show us opposite sides of how a GU med onc beats a community practitioner; monotherapy enzalutamide; two more Gents manage their prostate cancer but not their heart issues; Dr. E is frank with an advanced patient but doesn’t reveal her cards just yet; our Gent thinks Guardant shows ‘weird’ results… or maybe they’re not so weird?; Pluvicto trumps olaparib in research and in practice; should spot RT metastatic directed therapy yield to systemic hormone treatment?; understanding the FDG scan
Chat Log
Jimmy Greenfield
sent: 6:22 PM
Mitoxantrone plus prednisone was previously accepted as standard chemotherapy for this stage of disease; however, docetaxel-based regimens have been shown to both palliate symptoms and prolong survival in hormone refractory prostate cancer.t.net
sent: 7:20 PM
Thank you, Rick, Dr. Bob, Len, and all, for a helpful discussion