Update on 2010 diagnosis and treatment

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Comments

  • SV
    SV Member Posts: 195 Member
  • Old Salt
    Old Salt Member Posts: 1,617 Member

    Just to refresh my old memory, did Nubeqa stop 'working' earlier in your journey?

    Whatever, I do hope that it will be effective right now!

  • SV
    SV Member Posts: 195 Member

    Orgovyx worked for 10 months until PSA rose then after two months on Zytiga, that failed. In the following two years we did more SBRT, Pluvicto, Provenge then more SBRT. No luck.

  • SV
    SV Member Posts: 195 Member

    After four months of BAT with monthly shots of 400mg testosterone I started up again with Nubeqa. Original PSA before starting BAT was 12. 4 and ended with 94.32. Twelve days later first PSA number dropped from 94.32 down to 38.84. I'll get another PSA test in two more weeks. Hopefully it trends down non-detectable.

    Link to BAT https://www.nature.com/articles/s41467-023-44514-2

    What do you guys think?

  • centralPA
    centralPA Member Posts: 405 Member

    I think your cancer may well be appropriately confused. 😉

    Thanks for trailblazing the BAT therapy. Sending strength!

  • Old Salt
    Old Salt Member Posts: 1,617 Member
    edited March 16 #27

    I think that you are courageous to try this protocol (not SOC). I hope the downward trend (PSA) will continue.

  • swl1956
    swl1956 Member Posts: 222 Member

    Geez! Hats off to your diligence and great attitude. I'm curious if Taxotere or other chemo therapies might have been discussed?

  • BM
    BM Member Posts: 1 Member

    SV

    Thanks for sharing’ I am a newby and just started on Lupron and Zytega… a lot to learn and get educated on…. EC

  • SV
    SV Member Posts: 195 Member

    Yes. Both chemo, and since I have only bone mets, Radium 223 were discussed. Frankly, I'm growing weary of so many different poisons in the last 5.5 years I thought to take a shot at BAT.

  • SV
    SV Member Posts: 195 Member

    Thanks. I spoke with lead investigator, Dr. Denmeade yesterday and he was very encouraged that my PSA had dropped so quickly from 94 to 38 in only two weeks since returning to Nubeqa. I'll get another PSA test in two weeks to see if the downward trend continues. Keep your fingers crossed!

  • SV
    SV Member Posts: 195 Member

    Nothing ventured, nothing gained. I'll keep you guys posted.

  • Buff1977
    Buff1977 Member Posts: 19 Member

    SV

    Sorry about your reoccurrence with PC….When visiting with your doctors, did they say anything about the testosterone booster having anything to do with the relapse ? Wondering if you have any thoughts on that ? My testosterone was 245 last test, this is still low (<300). I've seen some other folks asking about a testosterone boost on this forum. Hoping the Nubeqa gets that PSA down ! Good Luck !

    Buff

  • SV
    SV Member Posts: 195 Member

    Yes that was speculated on but nothing was provable.

  • swl1956
    swl1956 Member Posts: 222 Member

    SV

    Again, it's amazing what you and others have been and are enduring. You are an inspiration. I'm only a year and half into my journey. Focal ablation which failed, then metastasis to lymph nodes, now enduring Orgovyx / Zytiga / Prednisone along with 10 of 40 IMRT so far. PSA dropped from 9 down to 1 in just a few weeks. I understand after a longer period should drop to .1 or less with this combination. Anxious about next PSA test. Anyhow, I'm "weary" already. Hat's off to those like you who keep up the fight. I hope I can muster the strength to do the same???

  • SV
    SV Member Posts: 195 Member

    You likely already know this but hard exercise really takes the edge off.