CRPC survey

[Grandude58]

Howdy, I am fairly new here but have gained some very valuable knowledge from lots of folks here sharing their experiences.

I became "castrate resistant" just 5 months after being initialky diagnosed with stage 4 PC. I have done many things since then to beat down the constantly rising PSA and even more importantly the old pain indicator:a rising Alk phos blood serum.

So I would like to inquire as to how many other CRPC guys are out there tgat would share there date of becoming resistant and some of the things they have implimented once they reached this stage of the disease.

My doc told me 18-24 months when I got here over 19 months ago and he added that it would mot be "pretty" I've had some rough moments but have battled diligently and made them as brief as possible. Appreciate all who would like to participate and share on this very specific stage of CRPC.

Thanks, Steve

[Tall_Allen]

Are you on docetaxel or Zytiga?

[Grandude58 in reply to Tall_Allen]

I am on 50mgs Doctaxel biweekly. Just restarted zytiga 3 weeks ago after 5 cycles of BAT (taking a BAT break)

My latest 6 month scans said stable for the first time after doing BAT with 14 weekly doses and 4 semi weekly doses of the TAXOTERE @50mg.

My Alk Phos started rising a month after stopping the weekly TAXO which makes me "sore" up to 200 then all out painful above the 200 level. ZYTIGA didn't do anything for my PSA a year ago but it did get my Alk phos back down to a comfortable level for 6 months.

[Tall_Allen in reply to Grandude58]

They let you do BAT with symptomatic metastases (pain)? Johns Hopkins lists it as an exclusion criterion.

[Grandude58 in reply to Tall_Allen]

I did not get any permissions. Just followed the Protocol by getting new scans before starting then at 3 and 6 months after starting. Scans indicated stalled progression at both intervals, of existing bone mets for the first time in 24 months. I monitor very closely and have 2 teams of Docs that watch over me (taking notes)

[Tall_Allen in reply to Grandude58]

And these docs were OK with giving you supraphysiological doses of testosterone?

[Grandude58 in reply to Tall_Allen]

That's how I got the prescription for it. It was conditioned upon me doing the chemo to control the "flairup"

Felt awful good to have T after 15 months with 0. The cycling up and down of T levels became a little bothersome "emotionally" starting on the 4th cycle. Cycle 4 was when it first appeared that my PSA was synchronizing with the T levels.

Cycle 5 confirmed the sync. Which is why I stopped to see if I had become resensitized to ADT. It's all in following the BAT protocol. Allthough I had to go to multiple sites and papers to put the whole puzzle together.

Most importantly is, I believed in tge concept and believed I could benefit from it. The scans show that something worked to stop current bone lessions from continuing to double in size every 7 months +-

Screw the PSA. The scans look good for the first time. Now I just need something to get the mets to regress!

[Hidden]

I just went CRPC about 3 months ago.

I'm currently taking Zytiga and so far it seems to be working, don't know for how long but I will find that out later. It's not for today.

There are many on this forum who have been resistant for years so don't buy into the statistics. I'm going to continue to be optimistic even though I am aware of the statistics. There's no point in ruining the quality of your life while you are still living. You are 100% alive right now and that's all that counts. Enjoy it!

[Grandude58]

Just to clarify I became CRPC in late decemember of 2016.

[YostConner]

I went CRPC around July 2014. Since then I’ve done Provenge, Zytiga, Radium 223 and now Xtandi. I had two rounds of palliative radiation in there, too.

[Grandude58 in reply to YostConner]

Did the radium 223 kill any bone mets for good?

[YostConner in reply to Grandude58]

There’s really no way to know. I’m convinced it was beneficial.

[RonL]

I became castrate resistant about 17 months ago and a scan shortly after revealed I was metastatic. At that time Zytiga and Xgeva were added to my treatment. My PSA is <0.01 and I’m asymptomatic.

I was originally diagnosed Gleason 9 (4+5) five and a half years ago and my initial treatment was radiation and two years of Eligard. After a year off treatment my PSA started rising and I went back on Eligard which controlled my PSA for about a year.