Gl 9, 6 years in

[Carp1707]

Dxed with Gl 10, All 12 cores positive, with up to 80% involvement in 09/2014. Started Bicalutamide immediately then added Lupron to ADT. Then took the advice I had given my Dad 27 years before, "Get to the biggest, best Cancer center as fast as you can." So I called Fred Hutchinson in Seattle and they're reply was 'We get you 10s in as soon as we can.' Within 10 days I met my Med/onc and uro/onc. I was downgraded to a Gl9 as there was some 4s in a few of the cores. RP on 11/03/14 T3b N1 with neg margins, nonnerve sparing and LN involvement. Stayed on ADT until 06/16. PSA returned 06/17. Scan showed localized disease recurrence in pelvic area. Started Lupron and aberiterone 07/17. 37 EBRT treatments 08/17-09/17. Last Lupron shot on 12/26/2019. PSA was undetectable until 03/2020. Since then it has risen to 0.59. The last 2 tests show a 2.1 month doubling time. My next appointment is in March 2021.

[Tall_Allen]

There are 3 advanced hormonal drugs approved for non-metastatic castration-resistant PC: Nubeqa, Erleada and Xtandi. Have you discussed one of those as a next step?

I agree, Fred Hutchinson is among the top. Unfortunately, Tia Higano left, but they have some really top-notch medical oncologists there, among them, Evan Yu.

[Carp1707 in reply to Tall_Allen]

Thanks for the input. I will look into those. I was a bit taken back by my last visit as in Sept 2020 I was having a rise in PSA and was told if it went up the next visit, Dec MO would recommend ADT or scans. Well, it went from 0.21 to 0.59 in 3 months and he dismissed it as so-so. I got caught in the USTPF of 2012 that recommended PSA testing was overdone, therefore cut back on doing them. So I'm a bit leery of changes in SOC. He even tried to convince me that 0.59 was really close to 0.5. I got on him and replied it was actually 18% more than 0.5. He didn't like being corrected.

Anyway, thanks for input and I will definitely look into those.

[timotur in reply to Carp1707]

I got caught in the USTPF of 2012 that recommended PSA testing was overdone, therefore cut back on doing them.

Many on here have reported the same, as I did and went six years without a PSA test after a 3.0 in 2012. Then 23.5 in 2018.

[jtspitfire in reply to timotur]

Me too. But don't blame my PCP at the time. We discussed it and decided to stop measuring PSA for a while, starting in 2013. In 2019, moved and new Doc saw it go from 3.47 to 14.9, stage 4 GS 9/10 in two years. The adventure continues. Down to undetectable with ADT/Abiraterone and prednisone..best to all you fellow warriors and those who support and love you.

[cancerking]

Lupron is a reasonable base. I had radiation to the pelvis and am now off Lupron. Most side effects are due to decreased testosterone . I pushed the exercise and had two pelvic fractures. I did a DEXA and started denosumab for osteoporosis. I am now back to full exercise for a 78 year old. With your doubling, consider one of the recommendations of Tall Allen. All though, you may not see him, keep an eye one the work of Evan Yu.