Hi-Risk/Rec/Adv PCa Virtual Support Men & Caregivers Jan18
Editor’s Pick: Do you want to die of prostate cancer? – a rarely discussed topic, and understandably so! Also good discussions on blood pressure, DEXA scans, and why you don’t stay with a urologist! (rd)
Topics Discussed:
End of your treatment road … or just your doc’s road?; adding a 2nd HT treatment; when to return to treatment on intermittent HT; a prostate cancer death; spot radiation vs systemic treatment for BRCA disease progression; lupus update; femur metastasis; UCLA will reimburse when Medicare approves PSMA scan; stable PSA post chemo; testosterone not dropping below 40; 12 mo vs longer on initial LHRH; bone health, exercise & DEXA scans are important; starting abiraterone; blood pressure issues; trial fails …. prospective new trials ARV110 & AMG 160; feeling good on HT; alternatives to LHRH
Chat Log
AnCan – rick 6:11 PM: Re. Ernst – he is still with a uro!
AnCan – rick: 6:13 PM: In that case he doesn’t need a GU med onc!
AnCan – rick (to Everyone): 6:17 PM: GU = genitourinary medical oncologist
John Ivory: 6:37 PM: His doc doesn’t specialize in PCa https://ocbloodandcancercare.com/physicians/rao.html
AnCan – rick (to Everyone): 6:40 PM: Rana McKay UCSD, Tanya Dorf …. City of Hope, David Agus ….. USC
AnCan – rick: 7:12 PM: We have been telling Carl this!! Allen has to tell him
Ken A: 7:19 PM: good job Herb
John Ivory (to Everyone): 7:25 PM: FANTASTIC to hear you’re getting treatment, Rusty!
Rusty (to Everyone): 7:27 PM: I learned my lesson with putting PC/PSA.
Carl Forman : 7:29 PM: Saraiya did discuss considering chemo or radium as a back-up plan. I understand the need to follow-up with systemic therapy.
AnCan – rick (to Organizer(s) Only): 7:42 PM: Herb – tell folks what a dexa is and why they should get one.
John Ivory: 7:49 PM: Rick, in raising your bone density, do you think it was primarily from rowing, or do you also do a lot of resistance training
Jake Hannam (to Everyone): 7:50 PM: What is a Bone Density Scan (DEXA,DXA)? Bone density scanning, also called dual-energy x-ray absorptiometry (DXA) or bone densitometry, is an enhanced form of x-ray technology that is used to measure bone loss. DXA is today’s established standard for measuring bone mineral density (BMD). An x-ray (radiograph) is a noninvasive medical test that helps physicians diagnose and treat medical conditions. Imaging with x-rays involves exposing a part of the body to a small dose of ionizing radiation to produce pictures of the inside of the body. X-rays are the oldest and most frequently used form of medical imaging. DXA is most often performed on the lower spine and hips. In children and some adults, the whole body is sometimes scanned. Peripheral devices that use x-ray or ultrasound are sometimes used to screen for low bone mass, mostly at the forearm. In some communities, a CT scan with special software can also be used to diagnose or monitor low bone mass (QCT). This is accurate but less commonly used than DXA
AnCan – rick: 7:51 PM: Rowing was certainly a factor. Plus I did resistance 3x week especially to stress my spine
John Ivory: 7:51 PM: Thanks, Rick
Pat Martin (to Everyone): 8:04 PM: Would an Axumin scan be of benefit at this point. PSA about 1.0
AnCan – rick (to Everyone): 8:05 PM: I would say ….. yes, Pat.
Len Sierra (to Everyone): 8:05 PM: Pat, that’s borderline detectable for Axumin.
Rusty (to Everyone): 8:06 PM: I gotta run. Good night all.
Pat Martin (Private): 8:08 PM: I’ll contact Dr. Schweitzer and press him for additional tests.
Peter Monaco (to Organizer(s) Only): 8:13 PM: Have to go gents. Will upload recording first thing tomorrow.
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
Teamwork makes dreamwork here at AnCan, and we were thrilled to team up with PatientPower for the webinar series “Your Prostate Cancer Questions Answered“. Video and transcript are available in the links below.
In 2018, patients with nonmetastatic castration-resistant prostate cancer (nmCRPC) were watching and waiting. Two years later there are three novel androgen receptor inhibitors available. But more options mean more questions for doctors and for patients. In this first installment of our prostate cancer Answers Now series, we’ll explore these emerging questions around who should use what when, and why. We will also zoom out to give an overview of the disease and current treatment options. This event will be hosted by AnCan Founder Rick Davis and Len Sierra, AnCan Prostate Cancer Moderator. Dr. Eleni Efstathiou from MD Anderson Cancer Center in Texas and Dr. Tom Beer, Chair of Prostate Cancer Research at OSHU.
In this edition of our prostate cancer Answers Now series, we’ll learn about the latest in testing and imaging for prostate cancer with hosts & AnCan Prostate Cancer Moderators, Len Sierra and Peter Kafka. They will be joined by Scott Tagawa, MD, Professor of Medicine and Urology at NewYork-Presbyterian-Weill Cornell Medical Center in New York City and David VanderWeele, MD, PhD, Assistant Professor of Medicine in the Division of Hematology and Oncology at Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Feinberg School of Medicine. We invite your questions as we cover what PSMA PET and Next Generation Imaging can mean for patients at different points in their prostate cancer journey.
Talking honestly about one’s medical realities in the doctor’s office takes practice, but it is a crucial step to take. Tune in as experts discuss how transparent doctor-patient relationships can improve prostate cancer outcomes.
Hosted by AnCan Founder Rick Davis and Peter Kafka, AnCan Prostate Cancer Moderator. They will speak with Dr. Atish Choudhury, Co-Director of the Prostate Cancer Center at Dana-Farber Cancer Center about the importance of open communication between patients and physicians. What are the best treatment options? What side effects may I experience? What will my quality of life be? Expect all of these answers and more.
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?
