Update on 2nd gen drugs & my new MO

[watertender]

Hi just an update on things, still trying to possibly get abiraterone added to my Orgovyx . Found a MO in my area recommended but all he did at our first meeting was tell me the Stampede trial and the NCCN guidelines did not indicate that I actually needed to add abi at this time. He wanted to go the conservative route. Not sure I am going to click with him, but I am in a little town so not many alternatives.

Looking at the guidelines it appears I definitely qualify and am a bit nervous not to add the abi but I suppose it can wait until after I get my radiation taken care of. If anyone has the name of a HDR brachy therapist in Colorado that has done a few of these let me know. I found a couple, but their experience is a bit light, seems most folks are more trained in LDR brachy. Trying to get to UCLA but their COVID protocol testing has thrown a wrench in things with my flight times and the testing timeframes they require.

Thanks all!

[Scout4answers]

What is the Covid testing protocol at UCLA? Planning to go out there soon.

[watertender in reply to Scout4answers]

PCR test results must post within 48 hours of the procedure. There are two rapid PCR tests accepted- Xpert Xpress and Cobas Liat PCR otherwise the PCR or RT-PCR (nasal) test. Antigen tests not approved. There are UCLA test locations around the area but if you are positive they will delay until you test negative again.

[watertender in reply to Scout4answers]

Want to clarify the test collection date must be within 48 hrs of procedure not the post date.Don't you have a son in the area, seems like you should be able to meet the timeframe pretty easily. I was hoping to get my results before flying out. Last thing I want to do is sit at an expensive hotel in LA in quarantine.

[Scout4answers in reply to watertender]

Good memory, I do have a son in LA

what is the Post date?

[watertender in reply to Scout4answers]

Must be the date the results are sent to you but looking again at the info it is 48 hours of procedure. They have a bunch of UCLA testing locations for drive up testing you should have not troubles. Are you scheduled with Kishan?

[Scout4answers in reply to watertender]

not yet

[Tall_Allen]

I'm all for adding abi if you want it. You are right that with your GS9 and your stage T3, you would qualify under the STAMPEDE protocol:

ncbi.nlm.nih.gov/pmc/articl...

The only reason I can think of that insurance might give you a hard time is if they are sticklers about staging. The AJCC definition of clinical stage T3 is based on DRE only. However, I'm pretty sure that STAMPEDE allowed radiographic staging as well. If they give you a hard time, appeal it on the basis that the new standard-of-care is based on the STAMPEDE protocol definition, not the AJCC definition of stage.

The only RO I know of at UC Denver is Brian Kavanagh. You may want to ask him if they do HDR brachy.

[Jancapper in reply to Tall_Allen]

My RO also informed me that I am to discontinue taking Casodex on the last day of my IMRT treatments and continue on with Leupron alone until the 24 months has passed. Can anyone spread light on this?

[Tall_Allen in reply to Jancapper]

Casodex adds little. It's only used at the start to mitigate the effects of the testosterone flare that Lupron causes.

[Hidden]

Find a good MO, even if they aren't local. Most of them want you to see them in person once and then will do telehealth.

I have G9 T3b/c N1M0 HSPC and my MO got me abi 4 years ago. If I were you I wouldn't accept your MO's decision without at least getting other opinions.

[Magnus1964]

Are you having symptoms or is your PSA raising? It seems like you are burning through a a lot of treatments.

[watertender in reply to Magnus1964]

PSA is stable but have only been on ADT for 7 weeks now. Zytiga was recommended by my urologist and as I am high risk, he suggested but the MO thinks otherwise. He also thought I was getting to many opinions and was maybe confused by that but have only spoken to my urologist, and RO's so not sure where that came from.

[Magnus1964]

I would recommend staying the course and watch your PSA. If it starts moving, then proceed.

[MateoBeach]

Stay the course with your excellent UCLA RT plan with HDR and IMRT. Your Orgovix for neo adjuvant ADT is fine and you don’t need abiraterone now, I don’t believe. Do whatever COVID testing protocols they require, etc. And again, stay the course. ⛵️

[watertender]

Thanks much everyone for the feedback.

[Doseydoe]

I'm currently on Casodex and Tamoxifen and it's keeping my PSA low while allowing my Testosterone to rise. DD 😎