Editor’s Pick: Staging your prostate cancer BEFORE treatment ….. and of course – exercise, exercise, exercise!!!
Topics Discussed
Stage your disease before starting recurrence treatment; ADA and ADT; staging your disese before starting any treatment!; PSMA scan vs color doppler; radiating pelvic girdle vs systemic treatment; abscopal effect from RT; persisiting with olaprib; doc says exercise is essential; MyVictory coming soon; PSMA scan in Taiwan; metformin for prostate cancer; foot and hand syndrome from chemo; how long does it take for testosterone to return after ADT?
Chat Log
Dell Jensen (to Everyone): 5:18 PM: I concur. I would wait on the radiation till you are fully healed and have good urinary control
Dell Jensen (to Everyone): 5:19 PM: ADT is necessary to control the cancer.
Peter Kafka (to Everyone): 5:19 PM: What kind of doctor is guiding this gentleman?
Mark Perloe (to Everyone): 5:20 PM: My UCLA med onc suggests that the studies on ADT are primarily with EBRT. There are limited studies on ADT with SBRT. I was told that six months may be sufficient.
Mark Perloe (to Everyone): 5:21 PM: I’d advise a PET Scan with DCFPYL or GA68 PSMA prior to doing a treatment plan.
Peter Kafka (to Everyone): 5:22 PM: Northern or Southern Indiana? How far from Chicago? Probably should do genetic testing and anything else that can be done safely in this Covid-19 climate. Should be under the care of a good GU med onc before embarking on ADT
Dell Jensen (to Everyone): 5:24 PM: Very good doctors at Northwestern
Mark Perloe (to Everyone): 5:40 PM: Is anyone attending PCRI online conference this Friday?
Dell Jensen (to Everyone): 5:47 PM: I wish I could but I have training this weekend
John I. (to Everyone): 6:38 PM: Thanks Mark P. I’ve been searching for a good set of exercises like that
AnCan- rick (to Everyone): 6:40 PM: ….. https://www.radpowerbikes.com/
Carl Forman (Private): 6:47 PM: you mentioned there is possibly someone who may be able to get me a discount for radpowerbikes?
Wang Gao Shan (to Everyone): 6:54 PM: Both UCLA & Taiwan asked if I am currently taking Metformin and if stop taking it before the PSMA scan. Should I wait to start taking the Metformin until I have had the GA68 PSMA scan?
Mark Perloe (to Everyone): 6:59 PM: With MRI’s or any injectable dye, you need to be off metformin for 3-4 days after. You can stop a day or so before or on the day of treatment. Please follow your docs advice. It’s best when you restart that you build up slowly again and not back to full level.
Peter Kafka: 7:01 PM: Got to sign off. My question came to me at 2 am this morning out of working with 2 guys stuck with Kaiser. The question is: Do second opinions within the Kaiser system work or is there too much “company” loyalty within the system?
Editor’s Pick: Tough one this week – a toss up between treatment options for men with recurrent disease …. and finally taking a drug holiday after 3+ years! rd
Topics Discussed
PCRI Virtual Conference 2020; chemo edema disappears overnight; Covid Test; alkaline phosphatase discussed; recurrence treatment options for two of our guys; after 3 years of success – drug holiday!; treating the primary for metastatic men; available PSMA screening trials; starting ADT
Chat Log
AnCan – Rick (to Everyone): 3:08 PM: 877 582 7011 + GtM Support
AnCan – Rick (to Everyone): 3:20 PM: To register for PCRI ….. https://pcri.us7.list-manage.com/track/click?u=e61bab2d681f6500ca8a92f0e&id=ccc38b0e20&e=27da33585f
AnCan – Rick (to Everyone): 3:39 PM: Dennis M’s trial – https://www.clinicaltrials.gov/ct2/show/NCT03437941
AnCan – Rick (to Everyone): 4:05 PM: NGS new rules ….. https://ancan.org/much-excellent-news-from-foundation-medicine/
Len Sierra (to Everyone): 4:14 PM: Trial at Carbone Center: PSMA-based 18F-DCFPyL PET/CT and PET/MRI Pilot Studies in Prostate Cancer Brief Summary: The overall goal of this research is to validate and develop a non-invasive imaging biomarker of prostate cancer detection, progression, and recurrence. Development of such a biomarker may be useful to differentiate indolent from aggressive prostate cancer phenotypes allowing for selection of an appropriate risk adaptive therapy. Principal Investigator: Steven Cho Sex(es): Male Age: 18 Years and over
Rich J (to Everyone): 4:17 PM: Imaging Study to Investigate Safety and Diagnostic Performance of rhPSMA 7.3 (18F) PET Ligand in Suspected Prostate Cancer Recurrence (SPOTLIGHT)
Jeremy (to Everyone): 4:58 PM: UCLA has increased their price to $3K /Users/jeremylew/Desktop/Screen Shot 2020-09-01 at 4.57.31 PM.png
Ken A (to Everyone): 4:59 PM: thanks Jeremy….
Ken A (to Everyone): 4:59 PM: looking at the trial UCLA has….
Jeremy (to Everyone): 4:59 PM: Tried to show the screenshot, but it didn’t post. BUt the price they gave me last week was $2977
If you have attended our Advanced Prostate Cancer Group, or our Speaking Freely Group or even our U60 Advanced PCa group, you may have been fortunate enough to hear Joe Boardman particpate from his erie in Colorado.
Editor’s Choice: So much tonight inc 30 gents!!! My choice – maybe the new Dx G4+5 with a suspicious image on L5; or, ECE with just 5mm of G3+4??? (rd)
Topics discussed
New Dx G4+5 with a suspicious mass; MRI shows ECE with tiny amount of G3+4; treating oligoMX the Kwon way; incontinence – do your Kegels!!; Procrit may finally help low blood counts; do stains mask your PSA?; addressing hot flashes; continued success on abi; penile Mx still a puzzle
Chat Log
John Ivory (to Everyone): 3:24 PM: Jim, I found this 5 min. video by the head of the Prostate Cancer Research Inst. (PCRI) in thinking about surgery vs. radiation https://bit.ly/3fSQQ37
Carl Forman (Private): 3:26 PM: just to let Jim know about the patient guide from PCF.org
Jeremy (Organizers): 3:47 PM: Rick, just got back from my second opinion at UCI w Dr. Edward Uchio. They agree that the MRI report is not consistent with the biopsy findings. My UA showed I have a bladder infection. So I’m holding off on surgery and going to undergoe genomic testing and antoehr MRI. Thank god I found you guys.
Herbert Geller (to Everyone): 3:58 PM: There is no PSMA PET in Pitt. But there is an ongoing trial at CWRUhttps://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2018-00468&r=1
AnCan – Rick (to Everyone): 4:34 PM: https://www.urotoday.com/video-lectures/prostate-cancer-foundation-2019/video/1593-the-impact-of-vitamin-d-and-statins-on-prostate-cancer-outcomes-lorelei-mucci-and-elizabethplatz.html
One of our earliest, and certainly most enduring, non-prostate cancer moderators has been nationally recognized caregiver advocate, Renata Louwers. In barely 12 months, if that, Renata lost her first husband, Ahmad, to bladder cancer back in 2014. Since that time she has tirelessly campaigned to establish the Caregiver perspective on the medical radar; not to mention all the fundraising she has done for BCAN and bladder cancer …. G-d Bless Her!
This past week Health Union published the second part of an article Renata wrote for their Bladder Cancer Page – both parts are linked below. And no, they are not specifically about bladder cancer but more about her experience of being a peer moderator for a videochat virtual group that AnCan runs for Advanced Cancer Caregivers.
The easiest way to find more of Renata’s articles …. and there are so many excellent ones, especially for The Philadelphia Inquirer, is to google ‘Renata Louwers, medical journalist‘; do it and you’ll have no regrets!
AnCan’s heartbeat thrives on helping peers; it races when our Volunteers, our lifeblood, find satisfaction in the work they perform for us at AnCan. We love our volunteers; we especially love you, Renata xox
To receive reminders for our Advanced Cancer Caregivers Group, or any others that are all free & drop-in, click here.
