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: 1) Pluvicto pre-chemo… maybe? 2) Agree your stage before seeking treatment– rd
Topics Discussed
New denovo Nx Gent treated at VA gets less then SoC; get all docs to accept the same staging before seeking treatment; removing the surgical clip makes him feel better; 4x Pluvicto wasn’t enough – continues but is he concordant?; natural nausea remedies; intraductal/cribriform 4+5 Gent recurs 30 months post-RRP; extensive mets creep up on a Regular – Pluvicto pre-chemo?; gratitude!
JNJ-63898081 (JNJ-081) A bispecific antibody that targets PSMA on tumor cells and CD3 on T cells. JNJ-081 is designed to promote anti-tumor activity.
AnCan – rick
sent: 5:32 PM
Tx Len
Chuck Snyder
sent: 5:32 PM
Thanks all for the suggestions!
Len Sierra
sent: 5:41 PM
Aloxi (palonosetron) is another anti-nausea medication in the same class as ondansetron and granisetron (5HT3 antagonists).
Steve Roux, North Michigan
sent: 5:46 PM
hey guys, I need to run. Great Meeting, AGAIN. Don’t forget to get that survey done. Get ‘er done!
Chuck Snyder
sent: 5:46 PM
Thanks Len.
Len Sierra
sent: 5:50 PM
This is from AI, so understand the possible errors, but here is what they say: The choice of whether to use CTCs or ctDNA in a liquid biopsy depends on the specific clinical question being asked and the stage of cancer. For example, CTCs may be more useful for detecting early-stage cancer or monitoring the response to therapy, while ctDNA may be more sensitive for detecting advanced-stage cancer or identifying resistance mechanisms.
Julian – Houston
sent: 5:52 PM
• United States +1 (646) 749-3129
AnCan – rick
sent: 5:53 PM
222-583-973
Len Sierra
sent: 6:08 PM
I agree, great job, Dr. John!
Thomas M
sent: 6:09 PM
Was it Dr. Eshana Shah, MD at Fred Hutch who was mentioned?
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..
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, Aug 21, 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’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: Giving medical advice vs providing information (as AnCan does)… it’s a delicate balance that one Gent doesn’t want to hear. (rd)
Topics Discussed
docetaxel + Pluvicto trial; PALB2 actionable; spot RT to L4; need a GU med onc NOT uro at SF-VA; FDG scan largely confirms PSMA; coming off prednisone; ACTH test; KP Maui gent needs Dr. Harzstark for IHT discussion; soursop/graviola may help but talk to HCP; post Pluvicto, check concordance; using metformin; blood counts; healthy prostate tissue may muddy the waters; 7 years on abi carries risk of morphing – but Gent doesn’t want to her that; time for IHT??; PSA testing frequency Chat Log
Chat Log
Jim Marshall, Alexandria, VA sent · 5:24 PM
ATM was another mutation which got thrown into the mix.
Joe Gallo sent · 5:31 PM
Webinar: PARP-Inhibitors and Prostate Cancer – Gotta Have a Mutation??? by Alexa Jett | Jul 1, 2023 | Recent News, Webinars https://youtu.be/DErm2tkTiws
Registration is officially open!! We’re so so excited to announce our SECOND class in the Summer of Art Series!
Funding for this project was provided by the Health e Voices Impact Fund at the Community Foundation of New Jersey, which was funded by a contribution from Jansen Pharmaceuticals, Inc.
No painting experience? No worries! Your instructor, Hannah Garrison, has had over 7 years of teaching experience in the arts. This painting is one she’s especially excited about because we’ll be using both a paintbrush AND a toothbrush! It’s weird and we love it.
If you already registered on the priority waitlist for June’s class, then no need to register again! We already have you on the list for this class!
Register before July 10th to receive your free art supplies in time!
There will be plenty of time to ask questions and admire everyone else’s work! Hannah is always ready to answer questions about how you can make it your own. Think you might want more or less of a certain color in your painting? There’s always a solution!
Sessions are recorded and available on our Blog and YouTube Channel. And if you don’t want to be discovered, it’s fine to remain anonymous or even shut off your camera.
In case you didn’t make it in time for registration, Here are two things you can do:
Fill out THIS FORM to register for the waitlist for August’s class. If you couldn’t register for July’s class, you’ll get priority for this one
You can still join us for July’s class with your own supplies! Email Hannah@ancan.org for the link
You’ll need:
One soft adult toothbrush (one that you’ll never use for anything other than painting)
Size 6 or 8 round paint brush
canvas size 9in x 12in
Acrylic paint colors: white / orange / bright yellow / purple / pink / blue
water/ lots of napkins
extra papers / butcher paper / plastic bags to cover your work station. Protect your surface from paint if needed!
All paint manufacturers have different names for their own colors, so choose the colors you LOVE!
Check out our AnCan Gallery HERE to see some amazing artwork from June’s class!! You can even watch the recording for June’s “Markers and Sunflowers” class
Email Hannah@ancan.org or Alexa@ancan.org for questions 🙂 Hope to see you there!
Support comes in many forms, and here at AnCan, we are so blessed to have Hannah Garrison, a fantastic MS activist, moderator for our MS Virtual Support Group, and artist.
In honor of MS Awareness Month (March) we had a phenomenal time with adaptable art of all skill levels. We used paint and old gift cards to create masterpieces. We even had adorable kids join for a family night!
Feel free to create this art project anytime (no matter what community you belong to) with the video below: (Scroll down for supply list)
Supply list:
1. Acrylic paint
2. paper plate or palette
3. old, empty gift card or old credit card – the paint will ruin it, so make sure they know it can’t be usable
4. napkins – lots!! things will get messy
5. paper – any sturdy paper – cardstock, watercolor paper, acrylic paper
6. brush – optional, for mixing colors on your paper plate/ palette
We will be offering more art related support soon, including an AnCan art gallery. If you’d like more information or have any suggestions, please email me at alexa (at) ancan.org!
For information on our peer-led video chat MULTIPLE SCLEROSIS VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
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.
Summer of Art – Dreamy Summer Sky