The story of prostate cancer patient, Bryce Olson, is an incredibly inspiring one. Diagnosed at the young age of 44 with de novo metastatic prostate cancer 6 years ago, Bryce’s desire to be here for as long as possible for his young daughter has propelled him to near Rock-Star fame for all patients dealing with advanced cancer. In addition to his penchant for wearing T-Shirts embossed with a heavy-metal gothic font that says, Sequence Me, Bryce has another mantra that he shares with AnCan – “Be your own best advocate.”
Teaming up with various luminaries in the prostate cancer field and high-tech, high-powered bioinformaticians, Bryce is involved in creating a Virtual Tumor Board to help find a cure for his now heavily pre-treated advanced cancer, racing against the clock. He and his collaborators hope to scale up the Virtual Tumor Board concept to help many other individuals as well, in the future. For the uninitiated, a Tumor Board is a treatment planning approach in which a number of doctors who are experts in different specialties review and discuss the medical condition and treatment options of a patient. For prostate cancer, these specialists might include a urologic surgeon, a medical oncologist and a radiation oncologist, among others.
And visit his website here: https://sequenceme.org/ to find out more about his mission to get all advanced cancer patients genome sequenced, and where you can order one of his Sequence Me T-shirts to benefit children with cancer.
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?
NB Our regular 4th Tuesday Meeting has been moved to the 3rd Tuesday, Dec 15 at 6 pm Eastern just for this month owing to a calendar quirk.
Editor’s Pick The big PCa news this week is the breakthrough FDA approval that will surely herald wider approvals in coming months. We discuss in detail upfront! rd
Topics Discussed
68Ga PSMA 11 FDA approval; recurrence w. high PSA but no evidence; PARP-I fails – what next?; cancer and inflammation; zoledronic acid vs denosumab & Xgeva v Prolia; cabazitaxel vs docetaxel; darolutamide Nubeqa; GU med onc in NW Florida; Fighting hot flashes; switching up when Mx disease is stable
Chat Log
Frank Fabish (to Everyone): 4:29 PM: Can anyone compare chemo docetaxel vs cabazitaxel
AnCan – Rick (to Joe): 4:36 PM: WELCOME Joe …. you got a haircut!!!
Joe (Private): 4:42 PM: yea I did! Building and ice boat http://www.isabella-iceboat.com/9902255.jpg huge group!
alan moskowitz (to Everyone): 4:50 PM: dr Oh – 1-212-824-8855 direct to his office. https://www.mountsinai.org/profiles/william-oh
Len Sierra (to Everyone): 4:51 PM: Dr. William Oh: 212-659-5412
Tracy Saville (to Everyone): 4:55 PM: I like hearing comments re: longevity and health status. It really puts things in perspective for those of us that were detected stage 4. THX for that.
Joe (to Everyone): 4:56 PM: great to see you all…sorry to be late and to have to bug out early…come to WY and we’ll sail the ice boat https://www.google.com/search?client=firefox-b-1-d&q=isabella+classic+ice+boat
Peter Haake (to Everyone): 4:56 PM: Thanks for the info..
Jim Ward (to Everyone): 4:58 PM: This may or may not related to PC, but has anyone in this group had a symptomatic inguinal hernia that needed surgery? If so, perhaps respond with a private note for dicussion off-line. Thank you.
David Muslin (to Everyone): 5:11 PM: Tracey, I could not agree more. That’s what Ancan all about for me. We are not alone…..
John I (to Everyone): 5:11 PM: I didn’t have any pain but my doc recommended surgery so that it didn’t worsen & cause complications. I had the laparascopic procedure with the mesh and I think it was in ~1998 and I haven’t had a problem with it. It would have been a simple outpatient procedure, but my lung collapsed during surgery, so I needed to stay overnight.
Carl Forman (Private): 5:17 PM: Need to sign off. See you next time. Will ask Oncologist again about abi. Thanks.
Peter Haake (to Everyone): 5:17 PM: That’s interesting, I had hernia surgery 2008?. Never made that connection
John I (to Everyone): 5:26 PM: Gotta run. Thanks, Rick & everyone, for letting me go early. See you next time.
Herb Geller (to Everyone): 5:29 PM: NUBEQA™ (darolutamide) – Official Physician Site
Lou (to Everyone): 5:33 PM: btw, I did the market survey interview you spoke about last month. It was easy and took 45 minutes for a pay of $100. They messed up first appointment so they paid me for that session also.
Len Sierra (to Everyone): 5:33 PM: Dr. Elizabeth Guancial, Sarasota Downtown 1970 Golf Street Sarasota, Florida 34236 SCHEDULE AN APPOINTMENT:Call: (941) 957-1000
Tracy Saville (to Everyone): 5:36 PM: I was successful with the $500 Cancer and Careers grant. Anyone else?
Ken A (to Everyone): 5:36 PM: congrats Tracy….. I also!
Tracy Saville (to Everyone): 5:46 PM: i have to drop off, mac battery is nil. thx, everyone. great meeting.
Peter Kafka (Private): 5:52 PM: Dr. Jamie Abraham at Cleveland Clinic is not a genitourinary med onc. His specialty is hemotology and breast cancer. I am sure there is someone better at Cleveland
We have some wonderful thoughts once again from our Board Chair, moderator, and most important, our dear friend Peter Kafka. On the week that we spend reflecting on what we are grateful for, Peter has story that will offer perspective on thankfulness. We are so thankful for YOU, Peter! Aloha.
As hospitalizations for Covid-19 surge across the nation and opportunities for visitation at hospitals close down, the subject of “closure” comes up more often. I recently had an experience which brought this matter up in a new light that I thought worth sharing. A week ago, a good friend passed away as a result of recurrent colorectal cancer. He had exhausted all treatment options available to him and was under hospice care at home with his devoted wife of many years providing the major care and support. He remained lucid and at rest until the end.
This couple had a large network of family and friends around N. America and world-wide. One close friend took it upon herself to arrange for a Zoom conference meeting the weekend before the departure. Many of this man’s friends and relatives were present on this Zoom call including his wife who was within ear-shot and sight of her husband who could hear the conversation.
This was something of a transformative event for me and all involved because it gave us opportunity to say goodbye, to tell poignant stories, and reflect on the precious value of our individual friendships with this gentleman in real time while he could still receive our thoughts and wishes. The timing was perfect and there was a good measure of closure for all involved.
Usually our culture dictates that some form of closure be recreated in a ceremony or service after one departs. But these days even this opportunity is limited or non-existent because of the strict rules regarding gatherings and the dangers of travel. I have always thought that thankfulness was and should be primarily an anticipatory act rather than something expressed after the fact. I would suggest that in this holiday season of seeming isolation that we find ways to express THANKS for/ to what IS as well as what was.
Should you monitor your testosterone level ….. ? The group consider and discuss. (Tx for all b-day wishes! rd)
Topics Discussed
GU med onc places Mx man on LHRH alone???; Intermittent Hormone Therapy considerations; monitoring Testosterone levels; using different labs; trigger finger and HT; Bipolar Androgen Therapy; finding 2nd opinions remotely; when does a symptom warrant reporting; PSMA scanning tests; dealing with Brain Fog
Chat Log
Herb Geller (to Everyone): 6:15 PM: But yes, ACTH might be a better indicator.
Mark Perloe (to Everyone): 6:20 PM: I’m on Zytiga and prednisone. Dr. Turner drew a cortisol level and I got a call that my cortisone was low, but prednisone minimally affects blood cortisol level. I would think that ACTH would be a better marker. BP is normal, and I’m feeling ok. We dropped Zytiga to 500 mg/day with food. Turns out a recent study suggested lower DHEAS from adrenal with 500 vs 1000mg the standard dose. I appreciated cutting the cost in half as well.
John I (to Everyone): 6:29 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/amir-mortazavi
Herb Geller (to Everyone): 6:39 PM: abiraterone – trade name ZYTIGA
Jake Hannam (to Everyone): 6:39 PM: Zytiga
Mark Perloe (to Everyone): 6:42 PM: Also on Zytiga+prednisone.
Frank Fabish (to Everyone): 6:52 PM: thank you all
AnCan – rick (to Frank Fabish): 6:54 PM: Pleasure Frank ….. keep coming back
Frank Fabish (to Everyone): 6:55 PM: intend to. i’m pleased with this first meeting
John I (to Everyone): 7:20 PM: https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/
Herb Geller (to Everyone): 7:21 PM: https://cdmrp.army.mil/pcrp/research_highlights/20denmeade_highlight.aspx
Ken A (to Everyone): 7:24 PM: MDA stated BAT is not a good idea and they have had no success.
Mark Perloe (to Everyone): 7:48 PM: PSMA-rh study at Emory
John I (to Everyone): 7:57 PM: Here’s the org I just mentioned: http://dbsaalliance.org/
