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: Bones to boners in a little under two hours. (bn)
Topics discussed
A skeleton key to bone strengtheners, plus recommendations on calcium supplements; fracture adds to blood concerns; DLL3 as the PSMA for neuroendocrine PCa; apalutamide might not be a Tweedledee; hot flashes arrive after Firmagon has left the party; you can’t split a quarterback; delayed dose opens chasm of indecision; haze to hunger to relief then back to haze — is it ADT?; penile injections move the needle (not painful, sex great); long or short ADT after salvage; we run an ED joke up the flagpole as a grizzly bear reminiscence escapes.
Chat log
Julian – Houston · 6:56 PM
Have to leave early today. Thanks!
Steve Roux – Elk Rapids, MI · 7:38 PM
Gotta Run – new rescue puppy needs my attention. Great meeting! Thanks for all the info!
Hi-Risk/Recurrent/Advanced PCa Video Chat, July 17, 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.
NOTE: August Schedule Change for Tuesday meetings only – Tuesday, Aug 1 and 15
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: Worth waiting until the end to hear our sonorous tones on the Eastern Front relate liver marker issues during Pluvicto… but maybe down to gabapentin?? (rd)
TopicsDiscussed
New sponsor Blue Earth and Posluma; younger man (55) reports successful treatment; denovo Mx gent needs GU med onc; drug financial subsidies help- one of our gents; hypertension and abiraterone; neurological symptoms; lodging suggestions during treatment; cancer returns to prostate bed; 2nd series of Pluvicto treatments; what to do when PSA makes tiny move off insignificant; ALT & AST swing during Pluvicto – could it be an unrelated drug?; gabapentin issues
Chat Log
AnCan – rick sent · 5:34 PM Dr. Andrea Harzstark
AnCan – rick sent · 5:38 PM rd@ancan.org
Jim Marshall, Alexandria, VA sent · 5:59 PM Zytiga is also called Abiraterone It is generic.
Jim Marshall, Alexandria, VA sent · 6:03 PM Genitourinary Medical Oncologist
Julian – Houston sent · 6:30 PM Dr. E is awesome!!!
AnCan – rick sent · 6:39 PM Who in Houston would talk to me about where to stay when going to MD Anderson. Can you say?
Matt Krieger sent · 6:41 PM What is pluvecto (spelling?)?
Peter Kafka – Maui sent · 6:41 PM Most centers have a sheet with places to stay that work with the hospital. Call your doc’s receptionist
AnCan – rick sent · 6:42 PM Pluvicto
Joe Gallo – Bucks Cty PA sent · 6:45 PM One of our AS moderators Hugh Idstein is a Houston resident if you want any help beyond the hospital list.
Richard Tolbert sent · 6:47 PM I live in the Houston area and can provide some hotel options near M.D. Anderson. (contact rd@ancan.org for Richard’s email)
AnCan – rick sent · 6:48 PM Another question to me from John Babb: As a disabled veteran which base or post would the best to try for housing while I am at MD Anderson?
Matt Krieger sent · 6:49 PM I nap every day at 55 if I can find a way!!
Don Needham – Bend, Or sent · 6:50 PM I nap every day after my walk and weights.
Julian – Houston sent · 6:50 PM Naps are good – I try to take one every mid-afternoon.
Matt Krieger sent · 6:58 PM It seems like everyone here is having PSA tests that have a sensitivity down to like .01, whereas the Kaiser tests I get just say ‘less than .06’ if it’s below that level. Should I be pushing for a more sensitive test, does that have value?
Peter Kafka – Maui sent · 7:00 PM You can try asking Kaiser about ultra sensitive PSA testing. But usually they only use it for guys who have had a prostatectomy as primary rather than radiation,
AnCan – rick sent · 7:01 PM Matt – My suggestion would be not to worry. You still have a prostate. I agree with Peter – not needed if you have a prostate.
Matt Krieger sent · 7:01 PM Got it, makes sense and thanks much —
Jim Marshall, Alexandria, VA sent · 7:02 PM Am using Kaiser and I get the Ultra-Sensitive every month for last year Mid Atlantic Kaiser
Frank Fabish Columbus OH sent · 7:06 PM Got to guys. Thanks guys. Stay strong.
Richard Tolbert sent · 7:07 PM Thanks everyone. Have a great week!
You’ve heard me say it before and it never gets old… nothing gives me more pleasure than AnCan participants getting together outside our groups to meet and greet.
When a new participant in our High Risk/Recurrent/Advanced Prostate Cancer Group revealed recently he was from N. Virginia, not only was he well received by fellow locals but the cry went up for all to meet for lunch before too long. Capt. Jim Marshall led the charge by arranging a lunch in Alexandria at the end of June. I’ll let him tell you more ….
On Friday, June 30th, the DMV (District of Columbia/ Maryland/ Virginia) Brotherhood of AnCan’s High Risk/ Recurrent/ Advanced Prostate Cancer Virtual Group got together for a luncheon here in Alexandria, VA. We met at the Historic “Table Talk”Diner founded in 1976 that has changed little even in the age of rising property values and upscaling everything. On the first row of the photo L-R, is Joel Blanchette, Gary Peters and then standing L-R, myself Jim Marshall, George Rovder, Jimmy Greenfield, Cliff Collins and Richard Cramond.
It was a great opportunity to compare notes on our life situations and treatments but more important to get to know each other. It turns out I learned General Joel actually jumped out of airplanes in the younger days of his military career. Gary is a retired Federal Lawyer. George worked at the US State Dept. George’s husband is a Canadian and they are heading off camping over the 4th . Jimmy G, as we all know, is into music, can work up a real sweat (exercise) when his (new) band one gets going. In his younger days Jimmy was a full-time music teacher for kids and loved it – he still teaches young and old alike. Cliff was a Professor in the Air Force and regularly does 65-mile bike rides. Richard and I worked in close proximity in the 1970s in the forerunner of Space Force; satellites and things. As far as me, I can be found trimming a Peach Tree and also doing my daily 2-3-mile bike rides; consider I have a 15-year head start on Cliff.
We are looking forward to making this a recurring meeting during the year.
Jim Marshall
If any other AnCan’rs in any of our groups want to organize a ‘meet and greet’, please let us know and we’ll help with the contact information …. MSrs in Michigan???
Hi-Risk/Recurrent/Advanced PCa Video Chat, July 3, 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: This meeting was packed with lots of good stuff – from diabetes management on HT to the equivalency of gentle vs strenuous exercise (rd)
Topics discussed
Hormone treatment and diabetes management (see Chat); next ‘foamy gland’ treatment discussion; do I need a bone strengthener – pros & cons; does TP53 increase risk for other cancers?*; can ADT result in physical anxiety?; advanced prostate cancer management at Walter Reade Military Hospital; are scans a valid protocol to close out hormone therapy treatment?; is gentle vs strenuous exercise equivalent? * My lack of concern over TP53 is based on somatic mutations only! Germline TP53 carries risk for other cancers. (rd)
Chat Log
Ben Nathanson sent · 5:16 PM I think Jeff Marchi is right about the new video…we finally appear to have more than 25 cameras on!
Jim Marshall, Alexandria, VA sent · 5:18 PM It appears I can get up to 30 screens of people. jim Sylvester sent · 5:19 PM Sylvester has nothing tonight. I can hear this session. Thanks.
sent · 5:21 PM I can only get 8 active cameras. People go blank including me, and the 8 rotate between many people. If I pick everyone all but 8 cameras are blank, but I see 28 boxes If more than 28 here, it is now possible to slide over and see another screen of 28. That’s new
Larry Fish sent · 5:31 PM newer diabetes medications: I am on Mounjaro very effective AIC down from 8.1 to 7.1 in just 2 months; other more popular medication is Ozempic (sp?)
Steve Schuler sent · 5:53 PM Bye, have a safe 4th folks!
David Muslin sent · 6:14 PM What was that the name of the drug that Len just mentioned?
AnCan – rick sent · 6:15 PM Zometa
John A sent · 6:25 PM sorry pl defer to Dr Jack. Yes to PT and relaxation techniques. Yes to therapy for underlying fear. Can’t eliminate the cause–ADT and PCa.
David Muslin sent · 6:35 PM For what it’s worth, my Rad Onc at Northwestern stayed in touch with me for 12 months after my SBRT treatment
sent · 6:40 PM My Rad Onc is ordering a PSMA Pet scan. My Med Onc is ordering my meds.
AnCan – rick sent · 6:42 PM You need a GU med onc, Jay!
John A sent · 6:49 PM I tried that on my doc, and he was one of the authors of ARCHES. He declined to order any scans until my PSA got at least to .2.
Neil Sundstrom sent · 6:51 PM can you put that scan name in the chat?
george rovder arlington va sent · 6:52 PM https://peterattiamd.com/rajpaulattariwala/ Rajpaul Attariwala, M.D., Ph.D.: Cancer screening with full-body MRI scans and a seminar on the field of radiology
sent · 6:59 PM Diffusion weighted MRI. Dr. Raipaul Attariwala in Vancouver at AIM medical imaging
Frank Fabish Columbus OH sent · 7:01 PM Have a great 4th. See you next week.
Stan Friedman sent · 7:05 PM Len, are you on a beta blocker? I was experiencing real shortness of breadth a month ago and went to my internist. I had been taking propranolol for years to calm an essential tremor I had. He took my off the beta blocker and my short windedness disappeared and my fatigue lessened as well. Of course, my tremor is back, but I can deal with that.
Neil Sundstrom sent · 7:06 PM Gotta go. Happy 4th everyone.
David Muslin sent · 7:10 PM I have to roll gents. Have a safe 4th. Enjoy your families and be in the moment.
Cliff Collins sent · 7:11 PM I really must get some rest. I have a big bike ride in the morning. Please enjoy the 4th with family and friends.
Dennis Correia sent · 7:11 PM great discussion on exercise.
Parp-Inhibitors have long been on AnCan’s radar since our dear departed Boardie, Dr. Bill Burhans, found himself with olaparib in his lab in 2015 and convinced his tumor board to prescribe it along with abiraterone for his BRCA2 mutation.
Question is …
What’s a PARP-Inhibitor, and what does it do?
Who benefits from a PARP?
Do PARP-I’s work for everybody?
How can a PARP-I be used for prostate cancer?
AnCan brings you two experts to discuss. Dr. Pamela Munster of the UCSF BRCA Research Institute with her unique peer perspective, and Dr. Neal Shore who just released the TALAPRO-2 Study using a PARP with Xtandi.
Watch here:
Special thanks to Bayer, Pfizer, Myovant Sciences, Foundation Medicine, Myriad Genetics, Janssen – Johnson & Johnson, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
On Friday, June 30th, the DMV (District of Columbia/ Maryland/ Virginia) Brotherhood of AnCan’s High Risk/ Recurrent/ Advanced Prostate Cancer Virtual Group got together for a luncheon here in Alexandria, VA. We met at the Historic “Table Talk” Diner founded in 1976 that has changed little even in the age of rising property values and upscaling everything. On the first row of the photo L-R, is Joel Blanchette, Gary Peters and then standing L-R, myself Jim Marshall, George Rovder, Jimmy Greenfield, Cliff Collins and Richard Cramond.
