Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 18, 2023
Once a year in December, AnCan Foundation comes to you for a donation to support our largely volunteer programs. If you’re signed up to get meeting reminders, you’ll also have seen our Annual Fundraising Letter, sent last week. If you value our recordings, please consider making a donation at https://ancan.org/donate/
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 Picks: Wrapping up (literally) a scary episode of lymphedema; after bladder complications, every step he takes could mean a hospital visit. (bn)
Topics Discussed
Specialized therapists bring his lymphedema under control; surprise prostate recurrence after high-dose brachytherapy; waiting for pain to fade after radiation for rectal tumor; runaway diarrhea with no intestinal bug in sight — was it Keytruda?; PSA inching up but PSMA PET draws a blank; after radiation to bladder, every step risks a hospital visit; doctors who turn their back on complications; parting ways with a medonc who won’t do doublet; adrenal glands won’t restart after long-term abiraterone
Chat Log
Ravi Subramaniam · 8:54 PM
sucralfate enema for radiation proctitis
Unknown · 9:01 PM
Psyllium is often helpful
Peter Kafka – Maui · 9:43 PM
Peter Kafka – peterk@ancan.org
Ravi Subramaniam · 9:44 PM
RaviS58@outlook.com
Unknown · 9:58 PM
Psyllium helps with diarrhea
Unknown · 9:59 PM
Psyllium can make constipation worse
Frank Fabish Columbus OH · 10:00 PM
Thanks guys. Catch you next week.
Thomas Matica WA · 10:03 PM
Psyllium also helps reduce blood glucose levels.
Thomas Matica WA · 10:05 PM
Great sesion. Thanks to all.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 12, 2023
Once a year in December, AnCan Foundation comes to you for a donation to support our largely volunteer programs. If you’re signed up to get meeting reminders, you’ll also have seen our Annual Fundraising Letter, sent last week. If you value our recordings, please consider making a donation at https://ancan.org/donate/
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/
Editors Pick: Boosting testosterone, feeling great — and dancing with the devil? (bn)
Topics Discussed
Insist on Orgovyx and darolutamide, or accept old standbys Lupron and Casodex?; diplomatically swapping out a urologist for an oncologist; who’s afraid of a little testosterone boost?; itching back and constipation on ADT — is it just me?; find a trainer — not a physical therapist; PSMA PET sticker shock; AnCan website needs new blood; what’s with the protons — and why not surgery?
Chat Log
David M · 6:20 PM
EVEN A SMALL DONATION is much appreciated. Your volunteers work hard for for you and all of us thet deeply depend on Ancan. THANK YOU
Jim Marshall, Alexandria, VA · 7:38 PM
If you were a Vet, one can claim “Loss of Use of Creative Organ” and collect $128.62 per month. That is how much your are worth in the boudoir.
Jay Newman · 7:48 PM
Does anybody know about the effectiveness of the Ember Wave and where I can get one?
Frank Fabish Columbus OH · 8:12 PM
got to go thanks
Julian – Houston · 8:14 PM
Thanks all, need to go.
AnCan – rick · 8:18 PM
Got to go. Thanks guys. … from Frank F
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, Nov 28, 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: Advocating for what you want may not be advocating for what’s best for you. (bn)
Topics Discussed
PSA in the 60s, but Gleason 3+4 — time for a PSMA scan; SUV maxes of FDG PET and PSMA PET are unrelated and can’t be compared; don’t underestimate the chills and aches when starting zoledronic acid; Keytruda surpasses his expectations — a Christmas miracle? — but another man fails to respond; surprisingly good response after switching from daro to abi; docs agree to drop ADT — but advocating for what you want may not be advocating for what’s best for you; ADT is an easier ride when you’re knowledgeable and prepared; reminder: no cold turkey with prednisone; could monotherapy be a safer choice than ditching hard-to-tolerate ADT?; doc balks at genetic testing that could uncover therapy options
Chat Log
Richard Wassersug (Vancouver) · 6:09 PM
Myovant is now Sumitomo Pharma
AnCan – rick · 6:14 PM
Gleason Grade, right group????
Julian – Houston · 6:14 PM
I did read that Myovant got bought out!
Peter Kafka – Maui · 6:14 PM
He probably should be in the Low and Intermediate group.
Steven Friedman · 6:31 PM
stevenfriedman55@yahoo.com
AnCan – rick · 6:36 PM
peterk@ancan.org
Peter Kafka – Maui · 6:37 PM
peterk@ancan.org
Peter Kafka – Maui · 6:44 PM
Sounds similar to Len’s experience recently.
Len Sierra · 6:44 PM
Almost identical to me.
Unknown · 6:44 PM
My wife Ellen had the same response she like you and Len
J. Ward · 6:59 PM
I made it an hour, gents, and wanted everyone to know about the Reclast side effects. I’m going to take Dr. John’s advice and hop off the call to get rest. Good night!
Len Sierra · 7:15 PM
From RADICALS-HD trial: After a median follow-up of 9 years, the study investigators found that 24 months of ADT were superior to 6 months (HR 0.77, 95% CI [0.61, 0.97]; 72% vs 78% at 10 years) with respect to the primary endpoint of metastasis-free survival (MFS).
Unknown · 7:20 PM
Why not try mono therapy first with Dara?
Larry Fish · 7:26 PM
please spell this drug-suppliment
AnCan – rick · 7:26 PM
fenbendazole
Jim Marshall, Melbourne, FL on Vac · 7:26 PM
I managed my ADT + Abi for 5 years and it did not slow me down. Being diagnosed at 73 and now 79 has slowed me down more. Aerobic Exercise has been the key even when my body said it was exhausted, will power got me on the bike which promoted recovery. jim
AnCan – rick · 7:48 PM
Elizabeth Heath Karmanos
AnCan – rick · 7:48 PM
https://www.karmanos.org/karmanos/karmanos-physician-directory/heath-elisabeth-8225
Frank Fabish Columbus OH · 8:00 PM
See you guys. good session.
Steve Roux, MI · 8:07 PM
Guys, really need some dinner; see you next meeting. Great session and thanks to all of you!
Len Sierra · 8:07 PM
BXCL701 showed good results when used with Keytruda in both enzalutamide resistatnt mCRPC and with small cell neuroendocrine cancer.
Len Sierra · 8:09 PM
Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, they are synaptophysin positive
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 20, 2023
HAPPY THANKSGIVING TO ALL OUR VIEWERS… may it be peaceful and full of gratitude.
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: Persevere to the very end to hear us question docs who recommend Pluvicto knowing some mets won’t respond (rd)
Topics Discussed
Different MRI presentations can confuse; balance and falling; do dormant prostate cells express PSMA?; Pluvicto offers no quick result – Ac225 next??; don’t rush the prednisone taper; does your assigned doc have the right qualifications?; urinary issues lead to kidney failure – and a neck brace!; Orgovyx causes fewer hot flashes for some men; with mCRPC, don’t anguish over 0.1-0.3 PSA fluctuations; do historic doubling patterns hold when PCa recurs?; PCa recurs only IN the radiated gland – what next after 6 mo. HT?; ultra sensitive test redundant post-RT; does Pluvicto make sense for man with hybrid PCa?
Chat Log
Michael Wyn, Denversent · 6:15 PM
Thanks everyone. Good bye
Phil Dipaolasent · 6:19 PM
Hi, I would like a few minutes during the session today, if possible! Thanks, Phil Dipaola
sent · 6:21 PM
Phil – you have to be here in the first 10 minutes to be sure of time. PLEASE REFER TO OUR REMINDER. That’s the protocol with so many attendees.. If we have time at the end, we’ll certainly get to you.
sent · 6:22 PM
Were you tested for neuropathy?
Bill Franklinsent · 6:31 PM
Joel, if at all possible, don’t hesitate to ask for a physical therapy referral from your PCM. All the stuff Larry talked about would be worked on.
Bill Franklinsent · 6:37 PM
What age is considered elderly now? This is a serious question. Sometimes all doctors think about is the number on the age line. But many of us are in great shape.
TonyFigsent · 6:39 PM
I thought the Surf sound in Florida got louder in the winter. Maybe it is elderly shuffling their feet.
AnCan – ricksent · 6:52 PM
Google …… Alpha emitter vs Beta emitter PSMA radionuclide therapeutics
I will. turn 75 tomorrow, and I do not consider myself elderly!
My wife was a geriatric nurse. She had no time for doctors who blamed problems on an individual’s age.
AnCan – ricksent · 7:10 PM
Happy B-day to Alan Babcock!!!
JEFFERSONsent · 7:11 PM
thank you so much
Julian – Houstonsent · 7:14 PM
Happy B-day Alan!!!
Jimmy Greenfieldsent · 7:20 PM
Biological age , not the number. In my parent’s time 70 was elderly. People stopped moving. I know otherwise ‘healthy”50 year olds who are truly old, physically and/or behaviorally. Unfit, set in their ways etc. Then you have birthday boy Alan Babcock- 75 years young if ever I saw it.
sent · 7:21 PM
Hi I have a question about PSA test sensitivity. For the first time in about 6 months my level went below the ‘undetectable’ level as my local Kaiser defines it, <.06. Very grateful for that. Going forward, I’m wondering if I should be pushing Kaiser for a test with greater sensitivity? When people talk about their PSA testing I usually hear specificity below .06, but I’m not sure if there would be value for me in that ‘extra’ sensitivity. I am 3.5 years past initial radiation treatments not taking any medications at this point.
Alan Babcocksent · 7:22 PM
Thanks Jimmy
Jim Marshall, Jupiter, FL on Vacsent · 7:26 PM
You say not under treatment but have you been not being treatec for 3.5 yrs or on a treatment holiday. I’d press for PSA tests every 4 months. I am Kaiser too. but on treatment holiday gettng PSA test every month.
sent · 7:34 PM
Thank you Jim Marshall for the question; after radiation I did 2 years of Zytiga/prednisone, and haven’t yet had the need to restart.
Jim Marshall, Jupiter, FL on Vacsent · 7:36 PM
uugst PSA test ever 1-2 months because you are on holiday. In fact I get all the blood tests I got when under treatment. Kaiser has no problem with in in the DC area.
Jim Marshall, Jupiter, FL on Vacsent · 7:38 PM
although if the thought is you are in remission, then 3 months for a year and then either every 4 or 6 months going forward not needing all the other tests. Jim M
sent · 7:41 PM
Thank you Jim M!
Alan Msent · 7:46 PM
Matt, I have had the ultrasensitive PSA test done by Labcorp for 10 years. I prefer to see small changes and get an early warning of pending increases or decreased in PSA. I recommend it as long as it won’t give you anxiety.
Julian – Houstonsent · 7:47 PM
I am also doing the ultrasensitive PSA test every 3 months!
Alan Msent · 7:52 PM
Need to sign off guys. Good night.
Jim Marshall, Jupiter, FL on Vacsent · 8:03 PM
Kaiser has always given me PSA tests with 2 decimal places from the start 6.25 years ago. It has been less than 0.01 ever since I was on ABI + Lupron and into 15 months holiday.
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.