Treatment break?

[Bhraen2]

I was diagnosed 30 months ago with de novo oligometastic pc. (bone and lymph node). Gleason 9. ATM mutation of unknown significance. Underwent RP and then SBRT to metastatic sites. Been on Lupron and Zytiga for past 24 months with an undetectable psa and clean scans. Most recent was pylarify PET scan. Impression: No evidence of psma avid malignancy. MO is recommending a treatment break at this point. Best case scenario testosterone coming back slowly and psa staying undetectable for a lengthy duration. Worst case scenario being back at the same place I am now as he feels Zytiga will still work when I’d have to resume treatment and any new activity could be treated with SBRT.

I must admit it is great to get to this point considering my initial diagnosis but is a difficult decision. Staying on Zytiga for a longer term also comes with the 25%-30% risk of developing neuroendocrine PC.

I am also very interested in how effective BAT would be for my situation. Im very impressed with the results many members are having being HSPC.

Thank you for any recommendations or outcomes from anyone who has been at a similar point in their journey

[NPfisherman]

There was a study done some time ago showing that Gleason 9 and 10 did not fare as well with intermittent therapy, but the treatment paradigm is rapidly changing... The likelihood your T will come back decreases when you go beyond 24 months of ADT.

Currently, I am doing intermittent using Eligard and abiraterone with SBRT to oligometastatic lesions when they arise. I am still on treatment now.

The first round, I did 22 months on treatment, and about month 16 of vacation, I had the initial indication of a BCR. I waited to do Pylarify at about 0.8 and found one lesion. Gave myself Eligard and timed for a testosterone flare to get my SBRT. We will see how it goes with round 2, since I may be starting vacation in a few months if things continue to go well. My first vacation lasted 22 months...same as treatment... This time, my treatment is 1 year...

The Pylarify scan you did while "undetectable" means nothing. You need a PSA of about 0.5 or greater to hope for an accurate Pylarify scan.

If you do go on vacation, you may want to watch hormone levels. Some take tamoxifen or exemastane for E levels. Dutasteride or finasteride for DHT and T. Mucuna L dopa gtts or mucuna pruriens for prolactin levels.

Hope some of my ramblings are helpful to you... Good luck on your path...

Don Pescado

[Bhraen2 in reply to NPfisherman]

Thank you Don. Very helpful information. It seems my MO is hoping for the same success with my treatment break as you’ve had. Glad to hear from someone who has gone through it and had good results. I appreciate you giving me a heads up about the hormone levels and how to keep them in check. I wasn’t thinking about that and now realize how important it would be.

[Hidden]

25-30% chance of turning into neuroendocrine? REally? What says that? Thanks

[Bhraen2 in reply to Hidden]

It’s what I was told by my MO when I questioned him about it. Maybe has to do with my Gleason 9 pathology and ATM mutation.

[Papillon2]

..

[pjoshea13]

You asked about BAT. With Samuel Denmeade's BAT, of course, you would be back on ADT, with a shot of testosterone cypionate every 28 days. T would oscillate from supraphysiological to near-castrate. Although men on BAT continue on ADT, there is no meaningful period of castrate T.

An alternative scenario is that you remain on ADT vacation for three months, say, but with restored testosterone [T] of, say, 1,000 ng/dL. A variation would be to used double the T-cypionate dose, to get T up to 2,000 ng/dL, in the hope of inducing double-strand breaks.

During the vacation, the PSA might rise (as it might with Denmeade's BAT). This can be stressful. Hopefully, you would get a real vacation with 3 months of high-normal or supra-high T. & perhaps the vacation might be extended.

You can return to ADT at any time. After 3 months of ADT it might be possible to repeat the vacation.

I view the purpose of T here is to reverse adaptations and turn back the clock. However, after 2 years of Lupron & Zytiga, who knows what adaptations have occurred? For example, the androgen receptor splice variant AR-V7 that lacks the androgen-binding domain.

I am not a doctor & have no idea as to how someone in your situation might respond to the scenario, so I can't recommend it. I hope others will respond and point out the risks.

Best, -Patrick

[Bhraen2 in reply to pjoshea13]

Thank you Patrick. I looked up some of your old posts, the one about the transformer trial was very helpful.

[Bhraen2]

Thank you again. In the alternative situation of no ADT and a double cypionate injection, how often would the injection be repeated? And yes the purpose would be to set back the clock and reverse adaptations