After BCR and PSA Return: An Update on My Treatment Path

[PGDuan]

Hi Everyone,

I realize it's been quite a while since I last shared an update on my journey. I thought it was high time to share how things have been going for me, especially considering the somewhat controversial path I decided to take in early 2022 following Biochemical Recurrence (BCR) and the early return of my PSA levels -- after becoming undetectable after primary/adjuvant treatment.

Firstly though, I want to remind everyone that my case is just a sample size of one. So, while my experience has been positive - so far -, it's essential to remember that your mileage may vary.

The good news: as of now, I've been off all treatments since April, and my testosterone levels (T) have returned to normal. More than that, I'm feeling really good, both physically and emotionally. Even better, my latest PSA tests keep coming back at <.01, which is a fantastic result.

Treatment Recap: When my PSA levels were low and around .5, I utilized PSMA scans to identify the likely primary source of the rising PSA. It identified some potential hot spots in the vertebrae and ribs. Armed with that information, I opted for what some might consider an aggressive treatment regimen: the "triple play" of Androgen Deprivation Therapy (ADT)/Nubeqa, Chemotherapy, and Stereotactic Body Radiation Therapy (SBRT). At the time, I gathered a few second opinions and most top research hospital doctors just recommended intermittent ADT with an anti-androgen (Enzalutamide).

I chose the heavier path "triple play" (+SBRT and chemo) for a couple of reasons. While the triple play is being established as the optimal course for high-volume new PCA cases, I was low-volume. Still I chose this heavier path for a couple of reasons:

1. My PSA doubling time was fast, about 3 months.

2. I am relatively young and fit and willing to take the side effects of more aggressive treatment.

Side Effects and Moving Forward: The short term side effects I've experienced are those typically associated with these specific treatments. None were fun, but they weren't too bad either. I continued to work and surf, despite slowing down, adding some weight and sleeping more. Now that I am "back to normal" and the only longer term side effect so far is that my white blood cell count (WBC) is on the low side, but it's been low ever since I did the 18 months of Zytiga in 2019. I'm optimistic it will continue to rise over time.

Final Thoughts

I share all this to hopefully shed some light for those of who may be facing similar situations - BCR after already completing primary and adjuvant treatments. Of course, I'm acutely aware that I'm probably experiencing a temporary reprieve, but for now, I'm savoring this period of good health, no treatments, and undetectable PSA levels.

Wishing you all strength and resilience on your individual journeys. Hope this helps.

[PSAed]

Thanks for the informative update. I hope you continue to enjoy a long normal life. Best Wishes

[treedown]

Thanks for the update. I am glad your doing well.

[keepinon]

That's great to hear. Congrats on your results so far! I am going to save this post in case I need to follow in your footsteps. Did you have any trouble getting insurance to cover your choices?

[PGDuan in reply to keepinon]

Yes, insurance took a while and they didn't make it easy. They didn't raise an issue with the SBRT or docetaxel, but the Nubeqa took a while. My doctor was committed and pressed on it, including input from a 'tumor board' (multiple doctors) that endorsed the approach. It might be getting easier now as more evidence comes in. Best of luck on your path.

[timotur]

Congrats on a successful treatment, and thanks for sharing your treatment plan. Good to know it was tolerable and had good results. Best of luck.

[OzzieJ]

Great news and hopefully it continues that way and you get a long reprieve.

To compare notes, I had persistent high PSA of 0.5 after prostatectomy. I did a PSMA scan and identified two hot pelvic nodes. There was also a hot hilar node but they did an EBUS biopsy and thankfully it came up as a false positive. My onco also recommended a triple regime of ADT + Erleada, Chemo, plus 7 weeks pelvic radiotherapy. I finished the radio 8 weeks ago and still a bit tired but definitely improving. My white blood count is also low but everything else looks good. I still have 2 years ADT+ to go and will see where I end up after that.

My onco was of the view that the studies are increasingly showing that the earlier and harder you hit it the better (vs sequential). So it is great to hear your positive outcome from this approach. Thanks.

[PGDuan]

Thanks for sharing Ozzie.

[TN1932]

Thanks for sharing your journey, very encouraging. Hope your vacation is a very very long one.

[j-o-h-n]

Thanks PG........ as they said in the 50's.........We're gonna run it up on the flagpole and see if it waves.......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/11/2023 6:13 PM DST - Remember

[Papillon2]

Wishing for your continued success. Stay well my friend.