Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Jan 12, 2021
Editor’s ChoiceBiTE discussion …… and hear from a man with metastatic disease that is now in remission with no hormne therapy required. (rd)
Topics Discussed
Advanced disease & ‘bispecific’ alternatives; lupus hits one of our men post ADT; handling depression; starting chemotherapy with lung nodules; viability of spot RT vs systemic Tx; dealing with long-term and intermittent ADT mentally; MX disease stabilizes with no further HT; managing your own GU med onc
AnCan Barniskis Room (to Everyone): 4:20 PM: Apologies for being late everyone
Bryce Olson (to Everyone): 4:23 PM: what is the pros/cons of BITE vs. Lu177. Why BITE over that. BITE just feels less direct, and you’ve got to get the CD3 cells into the tumor and tumor microenvironment could stop that from happening in BITE without some TKI that focuses on myeloid cells
Bryce Olson (to Everyone): 4:23 PM: I wanted to ask directly but my mic isn’t working
Herb Geller (to Everyone): 4:31 PM: The radiodirective therapies are more advanced with more data to support them. All the BiTEs are Phase 1, and have many more side effects. You are coorect that BiTEs are less direct, as they depend upon activating T cells and all the current ones are dealing with issues of T cell depletion.
John Ivory (to Everyone): 4:39 PM: Right, Peter. It’s unfortunate that seeing a psychiatrist is seen as controversial. I’ve been to a number of them.
Bryce Olson (to Everyone): 4:47 PM: Really sorry Rusty. I’ve been there before and I know how shitty the depression can be.
Rusty (to Everyone): 4:57 PM: I hurt and tired. I need to go bed.
AnCan Barniskis Room (to Rusty): 4:58 PM: From David Muslin to Rusty- feel better
Herb Geller (to Everyone): 5:42 PM: He seems fine, but the real issue is the approach he takes — why 10 sessions? Is this SBRT? But I think you may need more systemic approaches.
AnCan Barniskis Room (to Organizer(s) Only): 5:46 PM: Is he still on ADT?
George Southiere MD (to Everyone): 6:02 PM: Thanks to everyone for being here !
Pat Martin (to Everyone): 6:03 PM: Dxed with Gl 10 all 12 cores + with up to 80% cancer. In 2014. Pat Martin (to Everyone): 6:06 PM: Rp, ADT for 18 mos, Vacay, Rad with ADT, Lupron Zytiga for another 21/2 years, Vacay, PSA has come back from less than 0.03 to 0.59 in 6 months. last 3 months show a PSADT of 2.1 mo. Washington state. Am at Fred Hutchinson
At AnCan, we LOVE friends! And helping you get resources you need to empower you to “Be Your Own Best Advocate!” Here are some great, informative, and FREE resources from our partner CancerCare. Be sure and check them out!
Editor’s Choice:Hear social media phenom, Bryce Olson, a 50-yr old metastatic prostate cancer patient, speak about his treatment to date and how he plans to find a personalized and innovative path forward. (rd)
Topics Discussed
Young, metastatic man Bryce Olson & his virtual brainstorming strategy;oral LHRH relugolix; holding steady on LHRH+abi; oligo-Mx strategies; cario issues around LHRH; PSA variability; PSA v scans; how do you know if you’re PSMA avid?; chemothreapy or 2nd line androgen therapy for recurrence; when to stop adjuvant ADT; abi +LHRH stem denovo Mx – debulk?
Chat Log
Bryce Olson (to Everyone): 6:02 PM: Bryce is on too. Took me a sec to get mic and camera working
Mark Perloe : 6:26 PM: Thanks for the ORGOVYX email. It will be interesting on cost and availability.
Brad Power (to Everyone): 6:27 PM: Wired: One Man’s Search for the DNA Data That Could Save His Life. https://www.wired.com/story/one-mans-search-for-dna-data-that-could-save-his-life/
Larry Fish (to Everyone): 6:28 PM: An A.I. challenge – deep Mind – individual now, but how to make it universal
John I (to Everyone): 6:29 PM: Thanks, Brad. Any other links you have are welcome–interesting (though frustrating & emotional) story
Brad Power (to Everyone): 6:29 PM: https://www.researchtothepeople.org/bryce
AnCan – rick (to Everyone): 6:36 PM: Guys – please sign up to our Blog and you’ll get a note that the recording has posted. https://ancan.org/blog/ Our groups are ALWAYS recorded, Larry.
Ancan – Jake Hannam (to Everyone): 6:40 PM: Thanks to Peter Monaco for posting our videos!
Tracy Saville (to Everyone): 6:40 PM: Done. Added myself as a monthly US TOO donor as well.
Brad Power (to Everyone): 6:45 PM: Topic: Bryce Case Launch Time: Dec 23, 2020 09:00 AM Pacific Time (US and Canada) Join from PC, Mac, Linux, iOS or Android: https://stanford.zoom.us/j/99737755758?pwd=VEFETlhqckMxU3VQT2lZY1Vod0cxZz09 Password: 016550
Bryce Olson (to Everyone): 6:53 PM: Thank you so much guys! It was an honor to be with you tonight
John I (to Everyone): 6:54 PM: Thank you, Bryce–and Brad too!
Mark Perloe (to Everyone): 7:41 PM: I would want to know if radiation might be indicated for spot treatment.
Mark Finn (to Everyone): 7:50 PM: Rick – gotta go. Please let me know if there are any issues with my case that I can share next time. BTW – I had chemo after prostectomy with only a few lesions.
John I (to Everyone): 8:00 PM: Gotta run. Merry Christmas to those who celebrate it!
JImmy Greenfield (Private): 8:07 PM: Rick I may be down to Nancy Dawson, no one is coming through on the 2nd opinion. Do you like her enough?
On Saturday, December 5th I had the amazing honor of not only being around amazing people, but I got to do it all proudly representing AnCan as well! I attended the Pushing Past Cancer: Stronger Together Virtual AYA Summit presented by UCLA Health AYA Cancer Program, UC Davis Comprehensive Cancer Center, and Stupid Cancer.
AYA stands for Adolescent and Young Adult in the cancer community, and I hope the terminology will extend in all of medicine. The age range is typically around 15-39, but up to 45 is being more widely accepted now. Our population has a lot of specific issues that pediatric and adult sides of oncology can’t fully reach. Dating, fertility, sexual health, work, college, and mental health are big concerns in our community.
I really enjoyed the conference tackling these issues in a way that’s comfortable for us. My favorite webinar was “Mental Health After Treatment” with Dr. Valentina Ogaryan (Licensed Clinical Psychologist at UCLA Simms Mann Center for Integrative Oncology). She talked about how important support is at any part of a cancer diagnosis. A neat term she used was “the support squad” (which is a great shout out to millennials!), and explained what yours could look like.
One of the closing panels about “What I’d Wish I’d Known…” was just incredible. To hear my peers voice the same feelings I had, and continue to have, was affirming and encouraging. No matter what the diagnosis, we still share similar anxieties and experiences.
An awesome highlight of the day was my team (The Orange Blossoms, because we all had a connection to the color orange, mine is my hair color!) won second place at the trivia after party. Fun fact: a lot of us here at AnCan love trivia games, and I had a lively conversation with Rickand Kim Stroeh about it. An AnCan trivia night would certainly be filled with stiff competition.
Stay tuned, because we will be offering even more support for AYA’s in the upcoming year. We have lots of great things in the works, and I can’t wait to share them with you. We’d love to be a member of your support squad.
At AnCan, we LOVE friends! And helping you get resources you need to empower you to “Be Your Own Best Advocate!” Here are some great, informative, and FREE resources from our partner CancerCare. Be sure and check them out!
