Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 12, 2021
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/.
Editor’s Pick: How do you explain to your medical team that AnCan is a great resource – some guys address that this week (unsolicited!!!)rd
Topics Discussed
High Risk diagnosis poses treatment questions; composing questions to ask your doc; addressing lung nodules; intestinal issues from enzalutamide???; testosterone is flowing back; talking to your medical team about AnCan; using Trimix; serial chemo may not be working; Caregiver has dad resisting treatment; trouble switchng medical oncologists.
Chat Log
Sylvester Mann (to Everyone): 3:32 PM: Good seeing you also. I’m doing ok. I have not been attending because I get the time mixed up plus I not usually home at this tine (smile).
Herb Geller (to Organizer(s) Only): 3:40 PM: So I got into Reel Recovery for next Monday. https://reelrecovery.org
Jake Hannam (to Organizer(s) Only): 3:41 PM: Congrats! Have fun!
Bill Franklin (to Organizer(s) Only): 3:42 PM: Man! Rick told me about that and I looked at it but will have to plan carefully in order to get in there. I hope you have a great time!
On October 6th, we had Sanoj Punnen, MD (Co-Chair of the Genitourinary Site Disease Group at the Sylvester Comprehensive Cancer Center, University of Miami, Miller School of Medicine) give a talk to our AS group titled “The Current State of Active Surveillance and How Active It Needs to Be”
Dr. Punnen said MRIs are playing an increasing role in diagnosing prostate cancer. He said MRIs must be performed before biopsies to target lesions.
“Get an MRI before a biopsy”, he stressed. ”MRI more likely do a better job of finding lesions appropriate for active surveillance.”
He said genomic and genetic testing can provide reassurance that AS is a safe path for individual patients.
He said he has long preferred transperineal biopsies over the so-called “gold standard” transrectal biopsies that carry a risk of deadly and disabling sepsis.
Dr. Punnen said if the MRI “looks good,” biopsies may need to be performed every three to five years rather than the annual biopsies that used to be performed in AS.
“One protocol will not fit all. Some need intense follow-up but some don’t,” he said.
Watch here:
Slides will be posted when available.
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.
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 4, 2021
(Apologies for the multiple confusions re. links and disappearing videos on YouTube! Thanks to RS for the heads-up and hopefully we have resolved and this works fine: rd)
2 survey opportunities still open …… and AnCan receives a donation for each approved respondent.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a…
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Lots of talk this week about switching docs and when to get a GU med onc involved.(rd)
Topics Discussed
Chemotherapy and mood swings; exercise duing chemo; can you avoid HT with advanced disease?; when’s the time to switch to a GU med onc?; Pylarify vs Ga68 PSMA R11; with advanced disease, is 0.298 a low enough nadir?; 2nd pembro dose after cytokine storm; pancreatic spot stable; 1st cabazitaxel tolerable; daily prednisone w. chemo???; GU med onc refuses to measure testosterone; using ibuprofen
Chat Log
Len Sierra (to Everyone): 5:37 PM: Genitourinary
Alan Moskowitz (to Everyone): 5:51 PM: Just an update on the availability of Pylarify PSMA scans, Mt Sinai Hospital in NYC has just received written confirmation (Wednesday Sept 29) that Medicare will cover the standard 80% of the cost. They are currently scheduling. You can find out more by calling their PET/CT Nuclear Medicine lab at 212-241-7775. I was also advised that Medicare supplement insurers legally must pay their share if Medicare covers their share.
Stephen Saft (to Everyone): 5:52 PM: That is great! Thanks for the information.
Stephen Saft (to Everyone): 6:16 PM: I agree that people with prostate cancer should go to a Medical Oncologist that specializes only in Prostate Cancer. They are conversant with all of the research and new developments. There are new developments every day.
Stephen Saft (to Everyone): 6:18 PM: What is an R11 Scan?
Alan Moskowitz (to Everyone): 6:23 PM: Rick said the R11 relates to the Gallium PSMA scan available only in 2 California sites.
Stephen Saft (to Everyone): 6:30 PM: I heard that. I believe that Gallium 68 is the more common name for that scan. (NB…. there are several different ligands married to Ga68 that seek out PSMA. R11 is the FDA approved one at UCSF and UCLA. There are other ligands like R617 still awaiting approval. rd)
Joe Gallo (to Everyone): 6:32 PM: PSMA PET PYL is/will be more available as compared to Gallium-68 which requires a radionuclide generator on site due to limited half-life.
Jake Hannam (to Everyone): 6:33 PM: Good point, Joe.
Ted Healy- Portland, OR. (to Everyone): 6:58 PM: Gotta go folks. Thank you be safe!
Rick Davis (to Everyone): 6:59 PM: tx for your advice to Christo Ted
Joe Gallo (to Everyone): 7:06 PM: Nick is Dr. Berengi’s admin. He will give you the details and schedule. He is a very easy going guy. Probaby easier to contact. However Dr B is also a very personable guy and willing to talk.
Herb Geller (to Everyone): 7:18 PM: I gotta go. See you next week.
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Sep 28, 2021
2 survey opportunities still open …… and AnCan receives a donation for each approved respondent.
…. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a
…. if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat .
Editor’s Pick:On a serious note, the discussion around how much HT with salvage radiation. On a fun note, Rusty’s experiecne at Reel Recovery and Jerry D’s fish take the bait! (rd)
Topics Discussed
Community cancer center provides sub-optimal advanced care; what’s the right duration for hormone therapy with salvage radiation; BAT and Xofigo whilst waiting for Lu177; switching docs … and will IHT be next?; wack-a-mole spot RT vs systemic treatment; Double J stents anyone? (let us know at info@ancan.org); visiting the military golf course; fun cancer retreats
Chat Log
Alan Moskowitz (to Everyone): 3:11 PM: This is the radiology lab that does Pylarify scans. https://www.woodburnmed.com/our-services. James Marshall, their coordinator said they have worked out the requirements and details to obtain Medicare coverage, and for major secondary insurers. They have done 70 Pylarify scans so far and consider themselves as leading edge. they are in Virginia, near the Washington DC area. They were the first to do Axumin scans in the DC area.
Herb Geller (to Everyone): 3:13 PM: I looked at their web site and they seem to be well prepared
Joe Gallo (to Organizer(s) Only): 3:26 PM: If Gary is a Vet he can still get the PSMA PET Pyl at no cost at the LA VA (UCLA)
Herb Geller (to Everyone): 3:29 PM: Gary could easily get to National Airport and then to the center in Annadale for a scan
Pat Martin (to Everyone): 3:34 PM: When I went off 2*5; I went cold turkey. Did not seem to cause any problems. Sometimes I just ignore side effects
AnCan – rick (to Everyone): 3:35 PM: Pat – you are very lucky. I had a friend who lost 30 lbs or more and lost his appetite for months.
Bruce Bocian (to Everyone): 3:40 PM: I got my G68 at U of M
Jake Hannam (to Everyone): 3:43 PM: Next meeting is Monday at 8:00 PM EST
Pat Martin (to Everyone): 3:46 PM: Dr. Lin is my Uro/Onc. I have the utmost regard for him.
Ben Nathanson (to Everyone): 3:50 PM: Assessing the Role and Optimal Duration of Hormonal Treatment in Association with Salvage Radiation Therapy After Radical Prostatectomy: Results from a Multi-Institutional Study https://www.europeanurology.com/article/S0302-2838(19)30112-5/fulltext (AnCan has full text – info@ancan.org)
Herb Geller (to Organizer(s) Only): 3:55 PM: Thanks, Ben. Very nice study.
David Muslin (to Everyone): 3:55 PM: Mark, I know how hard it is to be on ADT however, it’s great insurance not to have a recurrence.
Joe Gallo (to Organizer(s) Only): 3:56 PM: Off to the 50 Vets call. Goodnite.
Pat Martin (to Everyone): 3:59 PM: I have a similiar Dx with a Gl-9(5+4) in 2014, radiation. Was on ADT for 30 months. A vacation then PSA started rising. Now I’m back on ADT. Have Keytruda as a back up.
Herb Geller (to Organizer(s) Only): 4:00 PM: I’m on denosumab and bone density actually went up in a year.
AnCan – rick (to Everyone): 4:13 PM: Schweitzer is good, younger GU med onc. He knows AnCan – has done a seminar.
Pat Martin (to Everyone): 4:16 PM: I’ve mentioned AnCan to him a lot of the times I’ve seen him…4x a year for the last 7 years.
AnCan – rick (to Everyone): 4:23 PM: Gents …… we featured an article on agonist vs antagonist LHRH and their CVD impact back in 9/14/21 Reminder
John Ivory (to Everyone): 4:49 PM: I was asked to be an Orgovyx ambassador, but they wanted me to give access to my medical records for the agency that runs it; I decided to pull out. Didn’t want non-clinicians in my medical records
On September 29th, we hosted the webinar “Prostate Cancer – Active Surveillance and More…Past, Present, and Future“.
Featuring Laurence Klotz, MD, a pioneer in developing active surveillance and other areas dealing with prostate cancer, told a webinar about his journey as a urology researcher at Sunnybrook Health Sciences Center in Toronto. With over diagnosis and overtreatment of prostate cancer in the 1990s with the introduction of screening PSA testing, he and his colleagues set out to develop a new strategy of close monitoring of men with low-risk Gleason 6 prostate cancer.
He sees rapid advance of introduction of highly accurate “liquid biopsies” that focus on DNA shed in urine by tumors. He sees great potential in focal therapy.
Watch it all here:
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
We apologize, but slides are not available for this webinar.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
