Post SBRT Day 9 - 15

[ToolBeltZia]

Continuing my reporting on my experience after 5 SBRT treatments with focal boost, Barrigel spacer, urethral steering to try and avoid GU side effects. I am 68, in good shape, one 4+3, one 3+3, Decipher .84, PSA 7.8, PSMA PET confined to prostate, 6 months Orgovyx. Flomax started with treatment and continues.

9 - Some constipation, watery blood on TP, mucus. Urination fine.

10 - Urgency last night a couple times, once needed to get up and hit the can. Lots of gas…..This morning urgency ok, still a bit constipated (take that with a grain of salt as they used to set the Atomic Clock based on my "regularity".  Urination fine.

11 - yesterday was best GI has felt since treatment ended. A little urgency and gas. Hopefully this will continue. Urination fine.

12 - GI continues to improve, less urgency. Still some constipation.

13 - Other than reduced diameter of stool and a little constipation GI is nearly normal.  Urination continues at pretreatment levels (with Flomax)

14 - Stools nearly back to normal, urgency gone, urination fine.  No fatigue.

15 - Pretty much back to normal

At this point I will only post when and if side effects occur.

As to Orgovyx, currently on day 39 and have yet to experience any side effects.

If anyone has questions please let me know.

Stay Strong Brothers.

[maley2711]

Thanks !! May I ask.....what was the basis for your use of Orgovyx vs SOC Lupron,Firmagon, etc? What insurance is covering Orgovyx? I don't see your age?

[ToolBeltZia in reply to maley2711]

Hi maley2711.

I chose the Orgovyx based on several papers that stated it caused T to go down much quicker, did not cause a T spike upon initiation, had less apparent cardiac toxicity and it allowed T to recover much faster once treatment stopped. Additionally, anecdotally, it seemed people were experiencing fewer and less severe side effects. Finally, as it is a daily pill rather than a 1 or 3 month injection , it allows me at least a modicum of control of my treatment as I chose to take it daily. Having the perception of some control is important to me.

The Orgovyx is covered by my part D (WellCare ValueScript).

I am 68.

[maley2711 in reply to ToolBeltZia]

Thanks ! Do you know if your Doc had to justify Orgovyx use per something in your medical history and some problem when firmagon injections were done? Others have written about problems with coverage for Orgovyx, and it is a huge extra burden for our funding- challenged Medicare system. There are a LOT of men on ADT!!!!!

I'm anticipating an argument with Kaiser should i request Orgovyx. Many men would not be interested as I'd guess would hit the max out-of-pocket lmit, which would be multi $1000s out-of pocket correct?

[ToolBeltZia in reply to maley2711]

The dollars depend on your drug plan. Go to you plan web site and "calculate cost of drugs". I do not believe my doc had to do a hard sell to get my Orgovyx approved.

[maley2711 in reply to ToolBeltZia]

No reported CV problem or other thing ?...hate insurance uncertainty!!!!

[janebob99]

remind me if you also took Lupron? Or, just Orgovyx?

[ToolBeltZia in reply to janebob99]

Just the big O

[janebob99]

Does Relugolix cause osteoporosis? At 69, I'm more concerned about fractures than sexual health...

[ToolBeltZia in reply to janebob99]

I don't know if there is a difference in incidence and severity of osteoporosis in GnRH agonists vs GnRH receptor antagonists. However, with the testosterone rebounding much faster with relugolix perhaps, especially with a shorter course, the osteoporotic effect is somewhat mitigated.

[janebob99 in reply to ToolBeltZia]

Thanks. My question was a bit broader, though. Does relugolix cause osteoporosis in general? Both reduce testosterone, which, in turn, reduces estradiol, which then causes bone loss. so, I guess the answer is "Yes".

[ToolBeltZia in reply to janebob99]

I believe this is correct

[maley2711 in reply to janebob99]

yes!!!! lack of T.