Hi-Risk/Recurrent/Advanced PCa Video Support Recording, Aug 16, 2021
To sign up for a Reminder to join in person, please visit https://ancan.org/contact-us/ ‘
For the Embr hot flash control gizmo, visit https://myrcc.redcapcloud.com/?#join=… if you signed up and have not heard back from Embr, make sure you signed your Informed Consent. Check your email OR call Embr.
Looking for a Pylarify PSMA scan – check this website: https://www.pylarify.com/ordering-and-reimbursement
Editor’s Pick: Prednisone may just be a side drug to abiraterone acetate but hear what happens when your medical team fails to mention weaning off it when you stop abi – it’s BAD!! And we run cross two cases where an RO might just be thinking more about billings than patient welfare.(rd)
Topics Discussed
older gent never advised to wean off pred & lost 60# – next?; treating the primary (prostate gland); Lu177 PSMA trials; participant reports on Ac225+pembro+ enz trial; CTC explanation; Botox for bladder spasms; Pylarify used to check ‘discordant’ lesions; Antonarakis on the move; cyclophos’ stops being effective; finding Pylarify (see above); PSA moving up; ibuprofen vs tamsulosin (Flomax) for post RT frequency/urgency; RO’s, deep pockets & integrty – caveat emptor!
Chat Log
Jake (to Everyone): 5:13 PM: Welcome all!
Ted Healy- Portland, OR. (to Everyone): 5:25 PM: Have to go folks. Thank you!
Pat Martin (to Everyone): 5:25 PM: Somatic testing?
carl forman (Private): 5:32 PM: FYI. I have a film crew coming to my home this Wednesday for the video project on men living with advanced prostate cancer, that you had referred me to. Thanks.
Stan Friedman (to Everyone): 6:07 PM: Dr. Borys Mychalczak. He is the chief, radiation oncology at MSK Westchester & MSK Bergen
Rick Davis (to Organizer(s) Only): 6:23 PM: Prof Bill had this Tx!
Joel Blanchette, Reston, VA (to Everyone): 6:42 PM: (From Dr. Antonarakis) I have left Johns Hopkins, and I am not able to provide any professional advice at the moment (sorry). Please make an appointment to see Dr Sam Denmeade, so that you remain connected with a medical oncologist at Johns Hopkins. I have no idea how anything will work at the University of Minnesota, nor what needs to be done to transfer records. It may be a while before I am able to see patients there, because I am not fully credentialled in the state of MN and I don’t know how long that will take. Thanks for your patience, and please connect with Dr Denmeade in the meantime.
Rick Davis (to Everyone): 6:46 PM: Sorry Gents – just got knocked off. We are having a big monsoon.
Mark Perloe – Atlanta (to Everyone): 7:00 PM: Good evening. Have to run.
Alan Moskowitz (to Everyone): 7:02 PM: Time to leave . Goodnight all.
Bob Smith (to Everyone): 7:07 PM: My onclolgist has ordered a CT and bone scan in October. As of 3 months ago, a bone scan showed 5 suspected bone mets and one almost certain bone met. If the next ct/bone scan series shows lots of mets, would a PSMA ga 68 likely give me any additional actionable information? Or, should I go for the PSMA ga 68 test instead of the ct/bone scan series. I am a VET so I could fly from HI to West LA for another PSMA ga 68.
Herb Geller (to Everyone): 7:09 PM: I would think that a PSMA PET scan would be in order. It will give more information
Len Sierra (to Everyone): 7:09 PM: I agree with Herb on the PSMA PET.
Joe Gallo (to Everyone): 7:11 PM: Bob. VA at WLA PSMA PET is using Pyl and is available at no cost to Vets. It is significantly more detailed than a Bone or CT scan. I can give you contact info if you want.
Bob Smith (to Everyone): 7:12 PM: Thanks everyone. Joe, I have the contact info. Julian Morales (to Everyone): 7:21 PM: Thanks for the great discussion! See you next week.