Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 10, 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.
UPCOMING WEBINAR – Let’s talk Medicare 2024!Monday, Oct 30 8.00 pm Eastern Register at http://tinyurl.com/ancanmedicare . We plan NOT to make this scary!!!
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:Does it make sense to keep your cancer off guard?… & the Group talks A-fib! (rd)
Topics Discussed
AnCan loses two long term men on same day; Zometa side effects; 3+3 (??) newbie addresses mets after 20 years; Gent running out of options needs current sequencing … and new doc; does it make sense to keep the cancer off guard?; addressing A-fib; reducing visceral fat with exercise addresses sarcopenia; darolutamide refused so Gent starts with Orgovyx alone; Payer wrongly refusing NGS somatic testing; blood in urine could be RT cystitis – cystoscopy required; PCa recurs only within the gland.
Chat Log
Matt Kriegersent · 3:32 PM
Here are my recent PSA trends, it’s been a bit of a rollercoaster and I would appreciate any feedback. My treatment history is external radiation and HDR brachytherapy completed April 2020, and I was on 2 anti-androgens until June 2022. So 9 (Sept.)/2022 <.06, 1/2023 .06, 3/2023 .06, 6/2023 .35, 7/2023 .17, 8/23 .24, 9/2023 .07 I’m seeing my urologist tomorrow because a few weeks ago, for the only time other than the one biopsy and brachy, I had some blood in my urine – that was surprising but hasn’t happened again since.
sent · 3:35 PM
Too many things to do. You need to talk with the group. You need to make changes now.
Jim Marshall, Alexandria, VAsent · 3:44 PM
Genitourinary Medical Oncologist
John Asent · 3:48 PM
“LHRH antagonist drugs include relugolix (Orgovyx) and degarelix (Firmagon). These will suppress testosterone rapidly and don’t need the premedication with another drug.
Jim Marshall, Alexandria, VAsent · 3:50 PM
Abiraterone for Castration-Sensitive guys is 5MG of Prednisone
John Asent · 3:50 PM
Then, a second dug may be added to add to the testosterone suppression: abiraterone or darolutamide or enzalutamide.
marc valenssent · 3:56 PM
genitourinary MedOnc at Fred Hutchinson in Seattle: Petros Grivas
J. Wardsent · 4:00 PM
I need to hop off now; thanks for allowing me speak about Ken Anderson.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 2, 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:What next… more Keytruda or switch to Pluvicto?? (rd)
Topics Discussed
Navigating slow-developing recurrence; early days treating denovo lymph mets; Embr to the rescue; post-RT urinary stricture creates problem; hormone therapy poses exercise issues for some of our older Gents; intermittent immunotherapy; new hip after much HT; Group suggests patience before switching therapy; older Gent favors savings to hot flashes; what next when HT does its job? – exercise and a GU med onc!
Meet 1st & 3rd Mondays 0800pm ET and 2nd and 4th Tuesday 0600pm ET . Jim
Boykin Jordan – Springfield, VAsent · 5:48 PM
Thanks Jim — I’ll update my calendar
AnCan – ricksent · 5:56 PM
Embr wave Ancan50
https://embrlabs.com/products/embr-wave-2
sent · 6:08 PM
I’m in Palatine and am always looking for people to bicycle with.
russ hooversent · 6:16 PM
holmium laser enucleation procedure
sent · 6:24 PM
773-294-4151 I’m off to AZ on the 15th for the season, let’s definitely get together in the spring
sent · 6:38 PM
Akeega contains two active substances: niraparib and abiraterone acetate.
Julian – Houstonsent · 6:39 PM
Great talk tonight again! Catch you next week. Thank you.
GARY Zsent · 6:58 PM
Gentlemen – Big thanks to all. Had Mohs outpatient surgery 730am today for basal cell on side of face…need to say goodnight for today’s forum. I look forward to our next one. Best, Gary Z.
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.
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 23, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
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: Handcuffed by HMO, making the best of it. (bn)
Topics Discussed
Memory issues, but HMO won’t allow him darolutamide — try monotherapy abi?; tumors block TURP surgery, hoping ADT will ease surgeon’s job; AnCan pushes for better Orgovyx pricing; acupuncture and hot flashes; abi first, then enzalutamide — not the reverse; doing well on daro doublet after chemo; Orgovyx probably won’t thin the fog; mulling DEXA scan report; daro monotherapy addresses heart issue; filling the need for exercise with an e-bike; how much vitamin D?; grateful after switching to a GU oncologist; keep alert to side effects in Xgeva and Prolia; AnCan’s prostate cancer forum is back (https://ancan.org/forums); Embr Wave outdoors; landing an appointment with Oliver Sartor.
Chat Log
Harry Spila · 7:58 PM gotta go, take care everyone
AnCan – rick · 7:59 PM Happy riding!
Harry Spila · 8:00 PM 🚴
Mike Yancey – Oklahoma · 8:06 PM Gotta run
julian – houston · 8:06 PM great conversation, as always. Enjoy your Memorial Weekend!
Through its CDMRP — Congressionally Directed Medical Research Programs — one of the largest US funders of medical research is the Department of Defense. It will take another blog post to learn how this came about (volunteers??), but they have multiple programs for many conditions including multiple cancers … you can check the complete list at https://cdmrp.army.mil/researchprograms. Attend any gathering of patient advocates, and you are likely to find ‘Consumer Reviewers’ for one budget or another.
AnCan has several reviewers, and not just for prostate cancer. One of our PCa group regulars just finished his maiden stint reviewing grant requests for the 2022 $100 million PCa allocation, making the CDMRP the country’s second largest funder of prostate cancer research. Ben Nathanson’s qualifications …. well, he has prostate cancer, participates in AnCan groups, and likes reading scientific papers. No PhD or MD required.
Len Sierra is a seasoned Consumer Reviewer and recommended Ben as a Consumer Reviewer. Consumer reviewers sit on a panel alongside scientists and clinicians, and have an equal vote in who gets funding. They’re asked to read certain proposal pages, not the entire thing. But if you’re the right sort of person for this job, you’ll want to try reading it all.
PCRP is always looking for reviewers. To learn more, contact Melissa Flathmann, Melissa.Flathmann@gdit.com. The Prostate Cancer Research Program’s web page is https://cdmrp.army.mil/pcrp . In Ben’s own words, here’s a little more about his experience:
I just helped review grant proposals for the second-largest source of prostate cancer research funding in the United States. They ignored the fact that I’m not a doctor and haven’t studied biology since high school. They wanted me for my body.
No request gets a dime until it’s been voted on by a consumer reviewer. “Consumer” in this case means you have prostate cancer or have had prostate cancer or are a caregiver for someone with prostate cancer. It’s not enough just to want prostate cancer.
My agency wasn’t NIH (the top funder); it was the Department of Defense, which quietly oversees funding for a number of civilian health programs. More than $100 million is budgeted for prostate cancer research in the coming fiscal year.
The Peace Corps liked to bill itself as “the toughest job you’ll ever love.” Although this is a different arm of government, I too was assigned to be a cultural ambassador to a developing region where they speak a foreign language. Every fellow reviewer was a scientist, a clinician, or a statistician. For every proposal, each of us, in our own language, drafts a critique, gets a turn to speak, and gets an equal vote.
As with the Peace Corps, ditto on the tough, ditto on the love. A consumer reviewer need only read selected pages of the proposal, including an Easy Reader page (“Lay abstract”) prepared just for you. But — personal view — you take this job to stand with the scientists at the edge of research, and if you don’t take the effort to read it all, all you’re seeing is the sales pitch. The process — it’s about six weeks — leaves you breathless. You’ve geeked with the geekiest.
They’re always looking for bodies like yours. Beyond disease qualifications, somebody from a patient-advocacy organization — such as AnCan — needs to write a letter of nomination. I was wildly fortunate that Len Sierra has been doing DoD reviews for years; I sent him my resume so he’d know I really am as geeky as I look, and he wrote me a lovely letter. Len, you got me a ticket to the edge of cancer discovery, and I can’t thank you enough.
Editor’s Pick: Staging your prostate cancer BEFORE treatment ….. and of course – exercise, exercise, exercise!!!
Topics Discussed
Stage your disease before starting recurrence treatment; ADA and ADT; staging your disese before starting any treatment!; PSMA scan vs color doppler; radiating pelvic girdle vs systemic treatment; abscopal effect from RT; persisiting with olaprib; doc says exercise is essential; MyVictory coming soon; PSMA scan in Taiwan; metformin for prostate cancer; foot and hand syndrome from chemo; how long does it take for testosterone to return after ADT?
Chat Log
Dell Jensen (to Everyone): 5:18 PM: I concur. I would wait on the radiation till you are fully healed and have good urinary control
Dell Jensen (to Everyone): 5:19 PM: ADT is necessary to control the cancer.
Peter Kafka (to Everyone): 5:19 PM: What kind of doctor is guiding this gentleman?
Mark Perloe (to Everyone): 5:20 PM: My UCLA med onc suggests that the studies on ADT are primarily with EBRT. There are limited studies on ADT with SBRT. I was told that six months may be sufficient.
Mark Perloe (to Everyone): 5:21 PM: I’d advise a PET Scan with DCFPYL or GA68 PSMA prior to doing a treatment plan.
Peter Kafka (to Everyone): 5:22 PM: Northern or Southern Indiana? How far from Chicago? Probably should do genetic testing and anything else that can be done safely in this Covid-19 climate. Should be under the care of a good GU med onc before embarking on ADT
Dell Jensen (to Everyone): 5:24 PM: Very good doctors at Northwestern
Mark Perloe (to Everyone): 5:40 PM: Is anyone attending PCRI online conference this Friday?
Dell Jensen (to Everyone): 5:47 PM: I wish I could but I have training this weekend
John I. (to Everyone): 6:38 PM: Thanks Mark P. I’ve been searching for a good set of exercises like that
AnCan- rick (to Everyone): 6:40 PM: ….. https://www.radpowerbikes.com/
Carl Forman (Private): 6:47 PM: you mentioned there is possibly someone who may be able to get me a discount for radpowerbikes?
Wang Gao Shan (to Everyone): 6:54 PM: Both UCLA & Taiwan asked if I am currently taking Metformin and if stop taking it before the PSMA scan. Should I wait to start taking the Metformin until I have had the GA68 PSMA scan?
Mark Perloe (to Everyone): 6:59 PM: With MRI’s or any injectable dye, you need to be off metformin for 3-4 days after. You can stop a day or so before or on the day of treatment. Please follow your docs advice. It’s best when you restart that you build up slowly again and not back to full level.
Peter Kafka: 7:01 PM: Got to sign off. My question came to me at 2 am this morning out of working with 2 guys stuck with Kaiser. The question is: Do second opinions within the Kaiser system work or is there too much “company” loyalty within the system?
