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.
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,…
Oh it’s not that kind of shot. It’s the other kind of shots, which require some modification for people with cancer. It just
so happens that ASCO (American Society of Clinical Oncology) has come out with new guidelines regarding vaccines for cancer patients.
The guidelines include a recommendation for doctors to take vaccination histories at the start of cancer treatment, followed by provision of recommended vaccines, re-vaccination after cancer treatments that wipe out immunity (for instance stem cell transplant), as well as vaccination of household contacts in order to protect the cancer patient.
We are more vulnerable to infection, because our immune system is injured by chronic inflammation, by the cancers, and by our treatments. Also, we don’t get as good an immune boost from some vaccines as people without cancer do.
If our immune system is “compromised” we can’t take live vaccines at all, and non-live vaccines aren’t as effective. Live vaccines contain weakened but still replicating virus or bacteria. They cause a mild infection in normal people, which triggers an immune
response. But for those of us with a weakened immune system, live vaccines, such as chicken pox/shingles, measles, mumps, oral typhoid, and German measles, can cause a real infection. Non-live vaccines are safe, including the new RNA vaccines. Non-live vaccines for different conditions can be given on the same day.
Here is a summary of recommendations, which I have shortened for prostate cancer:
“Clinicians should determine vaccination status and ensure that adults newly diagnosed with cancer and about to start treatment are up to date on seasonal vaccines as well as age- and risk-based vaccines
Vaccination should ideally precede any planned cancer treatment by 2-4 weeks. However, nonlive vaccines can be administered during or after chemotherapy or immunotherapy, hormonal treatment, radiation, or surgery
Adults with solid and hematologic cancers traveling to an area of risk should follow the CDC standard recommendations for the destination Note. Hepatitis A, intramuscular typhoid vaccine, inactivated polio, hepatitis B, rabies, meningococcal, and nonlive Japanese encephalitis vaccines are safe
It is recommended that all household members and close contacts, where feasible, be up to date on vaccinations “
Here are some specific recommended immunizations for adults with Cancer:
One dose of Tdap, followed by Td or Tdap booster every 10 years
Hepatitis B
19-59 years: eligible 60 years and older: immunize those with other risk factorsc
For adults 20 years and older, use high antigen (40 µg) and administer as a three-dose Recombivax HB series (0, 1, 6 months) or four-dose Engerix-B series (0, 1, 2, 6 months)18
Recombinant zoster vaccine
19 years and older
Two doses at least 4 weeks apart
Pneumococcal vaccine
19 years and older
One dose PCV15 followed by PPSV23 8 weeks later OR One dose PCV20d
HPV
27-45 years: shared decision making
Three doses, 0, 1–2, 6-monthsAbbreviations: HPV, human papillomavirus; PCV, pneumococcal conjugate vaccine; PPSV-23, 23 valent Pneumococcal polysaccharide vaccine; RSV, respiratory syncytial virus; Td, tetanus and diphtheria; Tdap, tetanus, diphtheria and pertussis.
a Live attenuated influenza vaccine, which is administered as a nasal spray, cannot be given to patients with cancer.
bTdap has lower amounts of diphtheria and pertussis toxoid and is only used for those 7 years and older. DTaP, the pediatric vaccine for prevention of tetanus, diphtheria, and pertussis, is only for children younger than 7 years.
cHIV, chronic liver diseases, intravenous drug use, sexual risk factors, incarcerated individuals.
dPatients who have previously received PCV13 only can receive one dose of PCV 20 after an interval of 1 year.
Abbreviations: HPV, human papillomavirus; PCV, pneumococcal conjugate vaccine; PPSV-23, 23 valent Pneumococcal polysaccharide vaccine; RSV, respiratory syncytial virus; Td, tetanus and diphtheria; Tdap, tetanus, diphtheria and pertussis.
a Live attenuated influenza vaccine, which is administered as a nasal spray, cannot be given to patients with cancer.
bTdap has lower amounts of diphtheria and pertussis toxoid and is only used for those 7 years and older. DTaP, the pediatric vaccine for prevention of tetanus, diphtheria, and pertussis, is only for children younger than 7 years.
cHIV, chronic liver diseases, intravenous drug use, sexual risk factors, incarcerated individuals.
dPatients who have previously received PCV13 only can receive one dose of PCV 20 after an interval of 1 year.
Now, a few further details about some common shots:
COVID
The COVID-19 vaccines protect patients with cancer, reducing the risk of severe COVID-19 illness and hospitalization. The recommendation is to receive at least one dose of the updated 2023-2024 COVID-19 vaccine. For those on therapies which diminish the immune response, ASCO recommends additional vaccine doses after 2 months. It is recommended to postpone immunization for 2-3 months for individuals who have recently had a COVID-19 infection.
FLU
It is safe to vaccinate during chemotherapy or while white cells are low. But the nasal spray flu vaccine should not be given to patients with cancer.
Pneumonia
Patients with cancer are at higher risk for pneumonia. (Blood cancers 50 times the risk!) Pneumonia vaccines reduce the chances of getting pneumonia and the need for hospitalization.
Shingles
There is a new vaccine called RZV. It is non-live so OK for us. (the previous vaccine, a live attenuated type, is not recommended for patients with cancer.) RZV should be made available to all adults with cancer. This vaccine remains immunogenic even after cancer treatment has begun.
RSV
Patients aged 60 years and older with cancer are eligible to receive the respiratory syncytial virus vaccine.
Our immunity to tetanus, diphtheria, and pertussis weakens as we age, and this decline may be accelerated after cancer treatment. It is strongly recommended that individuals diagnosed with cancer receive the Tdap vaccine if they have not been vaccinated as adults.
Why bother?
“Infections are the second most common cause of non–cancer-related mortality within the first year after a cancer diagnosis, with most of these deaths attributed to influenza and pneumonia, deaths that can be prevented throughimmunization. While patients with cancer have lower immune responses to influenza and pneumococcal vaccines, evidence supports the safety and benefits of vaccinations in reducing the severity of infections and associated hospitalizations.”
Often we will see the term “immunocompromised.” Does this apply to us? This term is not, to my knowledge, precisely defined. For those of us with prostate cancer, it usually means neutrophils (a type of white blood cell) are down below 1000 cells per microliter of blood, and is usually due to our treatments. The immune system is complex, and there are many ways to become “immunocompromised.” Anyone on chemotherapy could be considered to be immunocompromised. .Ask your oncologist if you fit this category, and if you know of a clear generally accepted definition, please write to me.
The authors sum up: “A cancer diagnosis can be overwhelming, and vaccination may not be an immediate priority in the treatment plan. However, numerous studies consistently highlight the best protection when vaccines are administered before starting cancer treatment, emphasizing the need for early vaccination.”
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.
Oh it’s not that kind of shot. It’s the other kind of shots, which require some modification for people with cancer. It just
