Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 14, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: Full of urine and free of care (bn).
Topics Discussed
Remedies for full-bladder anxiety before radiation: Gemtesa, the Lunderg clamp, the Wiesner clamp, and the perfect glass of water; men who know less about their cancer than they should; does starting Provenge mean dropping abi?; what is Provenge?; docs OK ADT holiday after 7 months — we have our doubts; controversial off-label fenbendazole; painfully swollen leg 5 months after chemo — lymphedema or something else?; happy camper with rebounded testosterone and PSA low 9 months after radiation; struggling with rectal pain from a massive prostate tumor — a case for palliative care; he’s impatient for testosterone recovery; a doc predicts end of the road for Lupron as monotherapy becomes standard of care.
Chat Log
AnCan – rick · 6:10 PM
King Charles birthday too!
AnCan – rick · 6:17 PM
Alan B …. bet you wish you had known about that!!
AnCan – rick · 6:18 PM
Gemtesa – virbegron
AnCan – rick · 6:29 PM
Lundberg clamp; via Amazon
· 6:36 PM
Wiesner clamp also Amazon
AnCan – rick · 6:38 PM
Here’s teh study Vic referenced https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10320463/
AnCan – rick · 6:41 PM
Provenge / Sipileucel-T
todd rieke · 7:01 PM
Fenbendazole
AnCan – rick · 7:13 PM
Please run the use of any complementary or alternative medicine with your HCP!!
todd rieke · 7:13 PM
fenbenlab.com
J. Ward · 7:20 PM
Thanks. Wishing you success with Fenben and also with your consults at MDA and Guancale. I see Dr. Corn at MDA.
Jim Marshall, Melbourne, FL · 7:42 PM
I was on ADT for 5 years and it took 9 months for the testosterone to begin.
Julian – Houston · 7:47 PM
I got off all my medications 1 year ago and testosterone is at 125 last month.
Jim Marshall, Melbourne, FL · 7:49 PM
After 15 months the testosterone has trended down from 144 for the last 3 months. Interesting.
Julian – Houston · 7:50 PM
About the same, testosterone went up to 155 and came back down to 125.
Here at AnCan, we like to highlight the perspectives of every person that enters our virtual “door”, so to speak. That includes religious perspectives; we are SO proud of how diverse our community is. So, as such, these views aren’t an official AnCan viewpoint.
Now that that’s out of the way, we just thought we would share a more religious perspective on a person’s cancer journey. In her blog, Stingray of Sunshine, author Dana Hendershot asks the question, “If it is truly a God blessing that my cancer was found early, then I also have to believe that God did NOT bless the person whose cancer wasn’t caught early.”
Author, and cancer survivor, Dana Hendershot, goes into depth about those words and phrases that others might deem comforting to someone going through cancer. Phrases like “God has his reasons” are the opposite of comforting for her.
CLICK HERE to read Hendershot’s blog post about her “Theological Quandary”
No matter our religious (or nonreligious) perspective, these sentiments may be felt by many in our community – regardless of which illness you may have.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 4, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: Five of our Regulars wrestle with recurrence this week; and one more is his own best advocate to get a scan(rd)
Topics Discussed
Eminent internist handles Gleason 4+5 diagnosis well; recurrence points to doublet therapy; abiraterone can result in cardio/BP issues; innovative GU med onc addresses lung spots with switching meds before trying RT; Gent finds his own NIH trial to his doc’s chagrin; T. flows back well post Orgovyx; PSMA scan shows oligoMx recurrence – AnCan reassures anxious Gent; with too many lesions, spot RT may yield to chemo; finally feeling better post prednisone; enzalutamide makes another man dizzy; doc agrees on FDG PET for concordance with PSMA but shies away for Payer reasons; neuroendocrine blood markers; Jimmy G remembers Jimmy B. – and Gent shares his Merkel Cell history.
Thanks for those private messages to me about being afraid. I can’t seem to reply privately so thanks everyone!
Len Sierra sent · 7:18 PM
According to Dr. Karim Fizazi, Darolutamide was not associated with a higher incidence of seizures, falls, fractures, cognitive disorder, or hypertension than placebo.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 15, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
Editor’s pick: All his scans are saying it: cancer doesn’t live here anymore. (bn)
Topics Discussed
Scan after scan after scan says cancer’s gone; Dr. E gets her proxy hug; no biggie if blood tests are a bit out of range; multiday fasts; recalling Mark Horn; verdicts shift on maybe-metastasis; good experiences with Dr. Singh?; clinical trial prodding from docs; Medicare’s limit on “too many” scans; MSK protection against insurance denials; pelvic floor therapy miraculous for incontinence; spurning cabazitaxel and re-upping for docetaxel; moment of truth arriving as ADT fades; putting Dr. A in the driver seat; listing all the prostate drugs out there; making the new Wassersug edition affordable; solo darolutamide in his future; hidden blessings of an unseeable cancer; docs reconsidering radiation for gyncomastia; any test for PSMA avidity?; sucking on lemons but smiling as Pluvicto drops his PSA; Keytruda’s ups and downs; no PSMA, no point in Pluvicto; husband’s mets reach liver and pancreas.
Chat Log
AnCan – rick · 6:20 PM
That’s why we pay Dr. E the Big Bucks!!!
Julian – Houston · 6:26 PM
Amen!
TonyFig · 7:21 PM
Dr. Wassersug’s book has a couple of tables listing various drugs for different stages of treatment. Since that time, there have been many new approved drugs. Is there any table or listing of the various drugs we discuss on the calls?
Richard Wassersug · 7:30 PM
-Androgen Derpivation Therapy 2023 edition. First author Richard WASSERSUG
Richard Wassersug · 7:31 PM
richard.wassersug@ubc.ca
AnCan – rick · 7:41 PM
Not for a single dose of RT, Richard according to the cariologists we’ve spoken to
Richard Wassersug · 7:41 PM
Good to hear.
AnCan – rick · 7:42 PM
Left sided BCa RT is usually a much higher dose.
Len Sierra · 7:43 PM
I agree with Rick on the breast RT issue. My understanding is that RT to breast tissue for gynecomastia prophylaxis is low dose.
Richard Wassersug · 7:45 PM
Yes, but it is indeed being done less often here in Canada.
Richard Wassersug · 7:46 PM
Meanwhile I have to go. Thank you for letting me join you today.
Len Sierra · 7:47 PM
Thanks for coming!
Peter Gudel · 7:47 PM
I have to go… thanks to all
? · 7:47 PM
If you have Gynecomastia and BRCA you probably don’t want to do radiation because if you get breast cancer, they can no longer treat you fully with radiation
? · 7:48 PM
A real gotcha
Geoff · 7:50 PM
Should we (I) routinely get a FDG scan along with a PSMA scan? Or is it only an issue for Pluvicto patients?
Julian – Houston · 7:52 PM
Thanks guys – have to go.
AnCan – rick · 7:53 PM
For Pluvicto patients – this is the same issue of concordance
AnCan – rick · 7:54 PM
From Pat M …. I use Lemonhead candies to combat dry mouth and it excites the taste buds.
Pat Martin · 8:00 PM
Good night see you next week
AnCan – rick · 8:08 PM
https://pathology.jhu.edu/patient-care/second-opinions
Wendy · 8:56 PM
Here is video on aCaregiving and Coping with Ambiguous Loss https://www.youtube.com/live/iz4NgckybeY?feature=share
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 7, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
NOTE: August schedule change for Tuesday meetings only – next meeting Aug 15
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
Editor’s pick: Mayo offers great docs… provided you select them. Otherwise ‘caveat emptor!’! (rd)
Topics Discussed
Recurrent VA patient lucks out at VA-SF; singlet vs doublet therapy; Dr. E gears up for The General; when to go back on HT .. and what HT exactly; PSA spikes after 2 pembros… that can happen!; Mayo fails to get it right around Pluvicto – or maybe it’s just the wrong doc; what’s the difference between LHRH/ADT drugs?; what type of RT is needed?; prostate area lights up – lungs do not??; stay away from the local uro and get back to the GU med onc
