Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 1, 2021
Editor’s Pick: Deciding on the best trial for you can be a challenge! (rd)
Topics Discussed
Denovo Mx Dx controlled w. abi on recurrence; GU med onc arrives late with recurrent disease challenge; ARROW trial for I-131, monoclonal antibody and enz; chemo compromises taste; after PSA of 3000, stable at less than 0.1 2 years later; does vaccine help your immune system; ganglion on shoulder; what’s teh best trial for Carl’s BRCA driven Pca?; artificial sphincter comes into play
Chat Log
Pat Martin (to Everyone): 6:04 PM: I saw a study that introduced stress to mice by…isolating them. I thought that was what this lockdown was meant to prove.
Peter Monaco (to Everyone): 6:07 PM: Still on track to leave for FL. Snow ends tomorrow so roads should be OK by Thursday.
Peter Kafka (to Everyone): 6:10 PM: New members should put their emails in the chat window. That would be helpful.
Michelle Amemiya (to Everyone): 6:13 PM: I am here on behalf of Steve Linett. Just going to listen. Thank you!
Herb Geller (to Everyone): 6:24 PM: Prostate Next seems to be for germline mutations according to their web site
Tracy Saville (to Everyone): 6:28 PM: i’m having same process done next month as part of a clinical trial.
Jake Hannam (to Everyone): 7:03 PM: Emmanuel S. Antonarakis, M.D.. Professor of Oncology and Urology, Johns Hopkins University
Joel Blanchette (to Everyone): 7:04 PM: JH GU Med Oncs: Michael Carducci, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/0006406/michael-carducci) Samuel Denmeade, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/0007191/samuel-denmeade) Emmanuel Antonarakis, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/9451649/emmanuel-antonarakis) Mark Markowski, MD PhD https://www.hopkinsmedicine.org/profiles/results/directory/profile/6570385/mark-markowski Channing Paller, MD https://www.hopkinsmedicine.org/profiles/results/directory/profile/3138167/channing-paller Catherine Handy, MD https://www.hopkinsmedicine.org/profiles/results/directory/profile/10003341/catherine-handy
Rick Medley (to Everyone): 7:12 PM: Note I did the Provenge immunotherapytreatment in January 2020. I had extensive genitics analysis with zero genetic history of cancer.
Pat Martin (to Everyone): 7:13 PM: ARRIS study???
Rick Davis (to Everyone): 7:14 PM: ARROW study
Pat Martin (to Everyone): 7:15 PM: thanks
Rick Medley (to Everyone): 7:24 PM: I have really enjoyed gentle (Hatha) yoga
Frank Fabish (to Everyone): 7:27 PM: Thanks all
Rick Medley (to Everyone): 7:33 PM: Provenge immunotherapy is specifically for prostate cancer to build up your body’s own t-cells
Peter Kafka (to Everyone): 7:33 PM: I get my second Moderna shot on Friday.
Rick Medley (to Everyone): 7:35 PM: In talking with a nurse from the maker of provenge she said they have no markers for whether its working or not.
Pat Martin (to Everyone): 7:44 PM: What was the trial that was mentioned?
Herb Geller (to Everyone): 7:47 PM: Regeneron – NCT03972657
Joel Blanchette (to Everyone): 7:54 PM: Dr. Leach, Tower Urology CA
Carl Forman (to Everyone): 7:59 PM: related to Robin Leach?
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Jan 26, 2021
Editor’s Pick: What to do when your doc gives you a pink slip. …. and a very exciting BiTE trial with REGN5678! (rd)
Topics Discussed
Late stage treatment options; how PCa effects your exercise regime; what next after docetaxel stops working; SBRT for spot and gland Tx; PSA as a marker; handling pain from chemo; issues around unblinding a clinical trial; medical marijuana; handling constipation from pain meds; when youd doc kicks you out ….; meaning of MSI grades; hip replacement with bone mets; markers for small cell/NE PCa; exciting BiTE trial with REGN5678; resuming Tx after IHT;pill LHRH relugolix/orgovyx prescribed; Lupron vs Eligard
Chat Log
Ancan – rick (to Everyone): 4:28 PM: Kampel https://www.mskcc.org/cancer-care/doctors/lewis-kampel
Ancan – rick : 4:39 PM: https://ancan.org
Jim Ward (Private): 4:40 PM: HI Rick — Does AnCan sponsor a colorectal cancer support group? I checked the list of groups on AnCan.org, but missed it if there is one. Thx!
Ancan – rick (to Jim Ward): 4:43 PM: we are working on it, and we have been trying to establish for some time. But not yet ….. WE do have the Speaking Freely group and the Caregivers Group that are pan-cancer. I do know a number of resources for colorectal. We can discuss offline.
Jim Ward (Private): 4:48 PM: Sounds good, Rick. Someone I know has colon cancer (largely under control). She might well benefit from the Speaking Freely group until the colon group gets set up. Thank you! Except Speaking Freely is just for men, I think! Well, will look forward to discussing off-line.
Ancan – rick (to Everyone): 4:57 PM: Speaking Freely https://ancan.org/men-speaking-freely/
Ancan – rick (to Everyone): 4:58 PM: Stereotactic Body Radiation Therapy – SBRT
Mark Perloe (to Everyone): 5:02 PM: Tramadol 100 mg ER might be useful.
Bob McHugh (to Everyone): 5:04 PM: Meloxicam is a prescription NSAID.
Mark Perloe (to Everyone): 5:08 PM: So is tramadol. Do not take on an empty stomach for either.
Ancan – rick): 5:23 PM: Alan Bryce http://www.mayoclinic.org/biographies/bryce-alan-h-m-d/bio-20055430
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.
Be Your Own Best Advocate – Something we say a lot, definitely. And yeah, we wear it proudly on our shirts too. But we really mean it!
As an advocate myself, I truly believe change happens at the community level, and that includes in the doctor’s office as well. Times change, opinions change, and we’ve seen that a lot with Active Surveillance in particular. What was once controversial, is now a common discussion at the urologist. I’m so glad we had our Active Surveillance & Beyond! webinar series to make this even more mainstream.
On January 6th, we had the absolute pleasure of hosting the very esteemed Dr. Anne Katz (Certified Sexuality Counselor, and Clinical Nurse Specialist at CancerCare Manitoba in Winnipeg, Canada) at our Active Surveillance Virtual Support Group. She is also the author of Prostate Cancer & The Man You Love. Dr. Katz is such a rockstar in the cancer community, so I was definitely starstruck!
She answered all the questions our gentlemen, and their partners had. I highly encourage you to watch as I’m sure your questions will be answered too! She provided information relevant to all within the prostate cancer community.
We here at AnCan want to sincerely thank Dr. Katz for providing this invaluable resource.
Watch here:
To view the slides from this presentation, click here.
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
