Dad started using orgovyx about 17 days ago. It is an Indian brand of relugolix which a reputed company here has started manufacturing here since this year.
Doc has written to do a PSA test after 4-6 weeks but I wanted to do it sooner just to check that this generic version of relugolix is being effective or not.
When is the soonest I can get PSA tested to get a fair idea that the medicine is working. Generally how long does it take to go down ?
After 5 weeks, I did a PSA test and it was down significantly. In my case, I started out on Orgovyx but after 2 weeks switched to Lupron injections. I was told by my doctors that even during the first couple weeks on Orgovyx that my PSA was going down but I was not able to test until 5 weeks after starting HT.
Why did you switch to lupron ?
I am in India so I can test whenever I want. Not only as per doc prescription
I switched from Orgovyx to Lupron mainly for convenience reasons. Rather than about taking a pill daily, I just have two injections three months apart.
Test testosterone to see if it is working, not PSA. The job of the medicine is to inhibit testosterone production. Hopefully, the castration-level testosterone will lower PSA too.
Thanks Allen. After how long should psa be tested.
About 2 months.
This article from January 2023, covering the HERO trial, seems to provide the information that you can use.
link.springer.com/article/1...
And the useful quote the above URL leads to is as follows:
"Relugolix also demonstrated superior efficacy to leuprolide for key secondary endpoints, including the cumulative probability of testosterone suppression to castrate levels (< 50 ng/dL) on day 4 and on day 15, PSA response (> 50% decrease) at day 15 with confirmation at day 29, the cumulative probability of testosterone suppression to profound castrate levels (< 20 ng/dL) on day 15, and mean FSH level at the end of week 24 (Table 1) [12]."
The whole article is based on the HERO trial. Which concerns Lupron versus Relugolix. Guess who wins? 😃
The whole article is from a reputable source. And it's not hard to read. And it includes useful information on pharmacokinetics - which I think is that word that we in the PCa community should know in the context of the one or two major drugs one is on at any given time.
Note that the discussion in the article concerns both Testosterone and PSA. It seems worthwhile to look at (1) the direct efficacy of Relugolix, in other words suppression of testosterone, as well as (2) evidence of the desired effect, lower PSA levels, indicating that PCA cells have become quiescent, at least. In other words you can test both testosterone and PSA I think.
Side Note: The above paragraph includes reference to "castrate levels" according to certain arbitrary definitions. This is something that is outside my purview. By comparison my own level currently is <0.5 nmol/L. (I don't know the conversions).
Looking at the time probabilities as reported by the HERO trial (on days four, 15 and a 29) you could make an imaginary graph from the beginning of your dad's treatment. Maybe it's linear or maybe it's some sort of curve.
But it would seem reasonable to conclude that you might already expect to see results. It is arbitrary as to when you get tested. Your own question was whether it's working or not. From the research effects should already be happening.
The article also includes other useful information about side effects. And there is a large amount of research on the HERO trial from 2020 onwards.
I think it's a nice name for a clinical trial investigating a therapeutic medication for prostate cancer. There are a lot of Heroes around here. I trust your Dad is doing well!
Thanks so much John 😊. Very useful. Dad is doing ok 🙏🏻🙏🏻 I pray it continues
JohnInThe Middle, your <0.5 nmol/L is the same as <14.4 ng/dL.
Thanks so much Justfor ("Justfor" as in "just for the laughs"? 😂).
I just had my 28 day Firmagon/Degarelix Friday and I reacted more strongly than I usually do. Regardless I'm claiming to my wife I have a bit of brain fog. I'd really like to get an estrogen patch. And this is all despite having gone back to a sales job! Part-time for sure.
Anyway all this is to say I didn't have the energy to climb the mountain of making a conversion (such a high mountain!). I know I'm going on too long. But some things are such a relief when someone else does a certain kind of mental labor for one. Your help was so much appreciated!
And it does seem I'm at serious testosterone castrate levels. Have been there for a long time now it seems. Although I was only able to persuade my MO to include them in the blood work she does every 6 weeks, in the last couple of months.
You are most welcome John. I am on the other end of the scale than the one that you are. My T was in the 800 -900 ng/dL space before starting taking any medication. Avodart plus "traces" of Bicalutamide have more than doubled that. Lately, it started declining, i.e. 1590 ng/dL or 55.1 nmol/L. My grey cells are in constant spin. Hard and very hard level Sudokus keep them occupied for a while, yet, I wouldn't walk past the opportunity to engage in some number crunching. Be well.
How did you react more strongly John ?
Whereas at least for the past 6 months I had a fever of maybe half a degree centigrade, it was a surprise to hit 2° for about 18 hours.
And whereas usually I only slept maybe 10 hours I slept solidly 14 hours the first day. This is after the symptoms kicked in which was about 8 hours after the morning injection.
And I had quite a raised injection bump and it's still there and red and it was a little sore. This normally had never happened. It was my regular excellent nurse.
Also, I also had severe shivers for about 6 hours and had to leave the Friday evening dinner table. I was extremely cold. And I could hardly hold a fork. And so I went to bed what is about four covers on top of me. Which is odd but for the first year this is what I did. One has a fever but one feels very cold.
And I was really tired for 2 days.
But by the second day I was up and about doing stuff. And now I'm perky and back to my normal self again! (The reddish largest bump is still there and slightly painful. No matter.) The experience of this past injection was my normal experience for a year. So it was a surprise as to what happened. This was Firmagon injection number 30, counting on at 28 day cycle.
And quite honestly it's quite a tolerable price to pay for what it does. It's very normal. I'm used to it. I call this "walking the tightrope". And along with taking 1,000 mg of Abiraterone/Zytiga everyday I hope, with Heaven's blessing, that nothing changes.
The only thing in front of me now is to figure out how to get on transdermal low-dose estrogen patches, because I'm tired. And I'm beginning to think I have a bit of fog.
P.S. I have realized I write long notes. I think sometimes they're helpful for people. Because I know at the beginning it was hard to learn a lot of things that could have been more helpfully packaged for a new member of the community. Nevertheless my notes are also me just thinking out loud. And figuring things out.
Sorry to hear you experienced this again. Any idea why this may have happened even with the regular experienced nurse ?
When you say half degrees centigrade do you know how much that is in Fahrenheit ?
Have done dad’s blood tests today. Will know how well the relugolix is working soon
Not exactly sure about the conversion but I think I have to agree centigrade temperature elevation would be about a 99.5 degree Fahrenheit fever.As for why I had this odd relapse experience, I don't know. (I suppose it's possible that the nurse might have had the angle strong or something?) I haven't been exercising for 3 months. It was a surprise. I'm not worried about it.
All the best for good blood work results from your Rad's upcoming tests!
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