Erleada or Xtandi with Orgovyx, preference one way or the other?

[Wynnsts]

Dx 2015 Gleason 7, prostatectomy 2015, seminal vessel invasion one side, fast forward 3 years recurrence and 39 sessions of radiation to prostate bed and back to PSA undetectable. Fast forward to fall of 2019 PSA back to 4.3 PSMA Pet scan shows iliac crest area met along with lymph nodes prostate bed. 5 large doses radiation and 9 months lupron. Fast forward fall 2022 PSMA Pet Mets to ribs, vertebrae and lymph nodes neck and chest area. PSA 5.4 started Orgovyx along with Xtandi for 12 months of 2023, vacation from 01/24 thru 05/24 PSA back to 4.8 along with new mets along with worsening former mets. 2023 Orgovyx/Xtandi combo dropped PSA to non detectable in 3 months.

The Doc for whatever the reason wants to replace Xrandi with Erleada. I have experience with Xtandi and side effects were minimal so I thought I would reach to those with Erleada. Thanks in advance and God Bless each of you. I’ll be 77 in 3 weeks if the good Lord keeps me here that long. I am physically active….

Thanks in advance for your thoughts.

[Tall_Allen]

There's never been a randomized trial. There was a retrospective trial that favored Erleada, but because it was retrospective, you can't use it to make decisions. If you know Xtandi works well for you, why change?

[Wynnsts in reply to Tall_Allen]

Thanks TA, kind of my thoughts. It was his NP that made the change and I’m now waiting to hear from the MO.

[jeff1257 in reply to Tall_Allen]

”because it was retrospective, you can't use it to make decisions”

Sometimes all you have are retrospective studies. Are you saying you must ignore the results? How does one make a decision in that case; toss a coin? I understand there are different levels of medical evidence, but sometimes you need to follow advice that is less than ideal. That’s why doctors go to medical school and then clinical training. And not all doctors or researchers are equal.

[Tall_Allen in reply to jeff1257]

Yes, patients must ignore them. Retrospective studies are meant for hypothesis-generation only. That means that researchers can use them do design tests, and that is all.

There are two reasons that they are useless to patients:

1) Selection bias - the patients who received one drug were in some way different from those who received another drug. The doctor, based on his experience, thought one drug would work better.

2) Analytic bias - Because of selection bias, the researcher has to correct for the fact that the patients who got one drug were different from patients who got a different drug. He chooses certain variables to correct for, using an analytic technique called "propensity score matching." But it has been shown (Zaorsky) that the outcomes can be contradictory depending on the variables he chooses.

Retrospective studies may be an aid to judgment along with other factors, but should never be depended on totally. I doubt thare will ever be a randomized trial comparing these drugs. Some patients try them out to see which has the best side effect profile.

[dhccpa]

With that many distant Mets, why did you stop successful ADT after one year?

[Wynnsts in reply to dhccpa]

I guess you can say I made a bad decision, it wasn’t a bad decision, it was the wrong decision. You see three years ago I received a penile implant and my wife and I are sexually active. With the opportunity to enjoy feeling our energy, I took the vacation. Studies seem to have shown that continuous vs intermittent ADT makes little difference in life expectancy. In my case I think I need to have much longer on sessions than off. Two years ago I also had a couple feet of my colon removed due to cancer. My future breaks will be far and few and this is all based on what the good Lord provides me!

[dhccpa in reply to Wynnsts]

Thanks. Sounds like you're doing generally well, though, after what you've been through.

[Wynnsts]

God has chosen to bless me, no doubt, thank you for replying and may he Bless you as well!!

[SteveTheJ]

Nobody can answer your question; side effects are individualized. I have been on Erleada and Lupron since March 2020 with bad but manageable side effects. You have no choice but to move forward with the best advice you can get. Best of luck.

[PELHA in reply to SteveTheJ]

Hi Steve. Husband just started this protocol. What would you say were the bad side effects? He complains of fatigue, hot flashes, etc., but so far nothing else. Hips have osteopenia for which bed to take Prolia twice a year and does daily calcium. A quarter sized rash on top of one foot we don’t know if from the Erleada (I read can cause rash but thought more of a whole body rash.). Thanks so much!

[SteveTheJ in reply to PELHA]

No hot flashes. Side effects are mainly fatigue and brain fog. For me fatigue isn't like I take 2 steps and have to rest. It's more like a pervasive feeling of tiredness, more like I don't want to do anything instead of being unable to do anything. Sometimes I need to lie down and close my eyes to get my train of thought back on track.

For the last two years or so I take a Provigil in the afternoon which helps with fatigue and focus. You can consider asking your doctor for that.

See a dermatologist about the rash, it could be anything.

[PELHA in reply to SteveTheJ]

Thanks for reply. Yes husband says he’s more tired now but we do make the effort to stay active. He says he enjoys weight lifting at the gym but I do have to nag (nicely) to get him there. He’d rather watch podcasts. He does do the yard work which is good. He doesn’t nap. I do that more and I’m younger!! Cheers and here’s to another day we are blessed with.

[Wynnsts in reply to SteveTheJ]

Steve, thanks for reaching out. Again, after 1 year on Orgovyx and Xtandi, I’ve been on med vacation for 5 months and must admit it was nice. Orgovyx along with Xtandi was quite manageable, again minimal SE’s. I will start my regimen back 06/01. Orgovyx will stay and the second part is still up in the air, but it will be one or the other. I do realize side effects are not the same for all, I just thought I would ask about the Erleada which as with research it seems the SE’s are very similar. Again, thanks for replying and I appreciate your input.

[j-o-h-n]

God Blesses those who Bless Him (Her or whoever or whatever).

You're good for at least 10 more years (but they do go fast, so enjoy them)...

Good Luck, Good Health and Good Humor.

j-o-h-n

[Wynnsts in reply to j-o-h-n]

Thanks John, it’s always good to read your replies and I thank you for this very special reply. I blessed every day of my life, God is so Good! You’re a blessing to us all!!