Comparison of relugolix and leuprolide for men with advanced PCa (HERO study)

Confirms my one person sample.

Having taken Lupron for 7 1/2 years, my T-level never went below 9, it hovered generally about10-12.
Now on Orgovyx for a year, it went quickly to undetectable. < 8

Castration level is below 50; profound castration below 20. I don't know what the evidence is for "the lower, the better".

Djin

My memory isn't what it used to be, but as I recall, there's no T flare with the oral drug. Not a big deal, IMHO, because the flare can easily be prevented by taking bicalutamide (Casodex) prior to leuprolide (Lupron).

Another issue that I remember is that there are fewer cardiac complications with relugolix; this is important, IMHO, and worthy of a chat with a cardiologist who is familiar with your ticker.
https://www.orgovyxhcp.com/?gclsrc=aw.ds&&utm_source=google&utm_medium=cpc&utm_campaign=gs_orgovyx_hcp_branded_coreandgeneric_rsa&utm_content=branded+-+generic_ex&utm_term=relugolix&gclsrc=ds&gclid=eaiaiqobchmi8v68h9tu9wivyhxvbb3p9azaeaayasaaegikvvd_bwe

Finally, there's the cost issue, as already mentioned. I don't know the percentages, but I have read that (some?) insurance companies are balking at paying for relugolix. This might require your doc to get involved.

The quick recovery of T after stopping relugolix appears to be an advantage, to me at least.

Post Edited (Sr Sailor) : 5/20/2022 11:43:29 AM (GMT-6)

Hello, Jack64 ~~~

Good to hear from you.

Can you list PSA levels alongside those testosterone levels you just posted?

That would be great, for sake of comparison.

Most importantly, is your doctor pleased with how ORGOVYX is working, for your case?

My doctor tracks all my lab work --- with great care - AND compassion.

With my best,
CYCLONE ••••• # Iowa State University

Jack64, that so many men achieve T levels well under 20 on many different ADT drugs suggests that you question your docs. Some PCa specialists add Advodart suppress the DHT (mine did) to lower the overall T levels. I suggest you ask about that as well if you are concerned. Generally, as Djin had earlier stated, castrate level is under 50 and profound castrate level is under 20. But at what level of T does the PCa still feed and thrive? You really only know that by measuring both T and PSA. If your PSA is undetectable and not increasing, it probably means that your current T level is effective at PCa suppression.

Generally ADT will take PSA to near, or undetectable within a few weeks. You have been on for six months and haven’t reached undetectable. Coupled with G8 suggests to me that you should be employing a very top medical oncologist that specializes in PCa. Cyclone is a great example of what working with a top MO can do.

Jack

Hello, Jack64 ---

Each story is different, and we're all just here, helping each other to figure it out.

I will say, for my case, my testosterone was fluctuating up and down, while on LUPRON. My PSA was fluctuating, in accordance. Doctors often call these PSA fluctuations "spikes and flares."

My doctor was concerned, and stated that for my case, he wanted to get my testosterone supressed to the lowest level possible.

My trust for his expertise was 100% - and so I tried FIRMAGON injections - which didn't work any better - and then we tried ZOLADEX.

The result was immediate. My testosterone went below 7.0, which is the lowest on their scale, and has remained there ever since. My PSA settled down, and went lower.

My original urologist REFUSED to use anything else besides LUPRON. That's the day I benched him, and transferred all my appointments over to my oncologist.

My oncologist is the one who saw those "spikes and flares" and believed there was something that would work better in my case.

In my situation, it was ZOLADEX injections that flatlined those testosterone fluctuations, which helped stabilize my PSA. It was very easy to switch from one form of ADT to another. It wasn't done without reason, purpose, or forethought.

I remember my oncologist saying that we could always return to LUPRON, if need be. The third thing we tried worked far better than anything else.

During all of this, my testosterone and PSA were being monitored every month. But, there were good reasons for that.

This is why my oncologist places such important on tracking TESTOSTERONE, as well as PSA, for patients on various forms of ADT.

Just looking out for you - would another form of ADT knock your testosterone and PSA lower?

I think that's the question you have on your mind, and there's an oncologist out there who can advise you & lead you forward.

I hope something within my experiences will help you with your case, and the questions you want to ask your medical team.

Please keep us posted --- you have come so far --- keep pushing forward & self-advocacy is sometimes essential!

All my best,
CYCLONE - # Iowa State University

Jack64,

Why would you let your health insurer dictate whether you can have an interview and assessment with a medical oncologist? You express concern and frustration with your urologist and radiation oncologist. Your questions, in my opinion, are better suited for a medical oncologist that specializes in PCa. The natural step is to research your area and find a great PCa medical oncologist and make an appointment to see the doctor. You will learn and either confirm that you are on the correct path or that you need to make some changes. Win win. Nothing negative.

As you state, you are your own advocate….then I suggest you take control and see a MO. It strikes me that with your high risk and current response to ADT that you should be more investigative. Many doctors would be introducing a second line blockade like Zytiga or Xtandi to further reduce PSA. Have you discussed the use with your docs? I’m not being tough on you, just expressing concern based on your statements that you should be advocating for yourself at a higher level. What I have observed and learned about high risk PCa is that it is important to get ahead of it, hit it hard while it is down and always know what it is trying to do.

From one Jack, and friend, to another.

JNF said...

In the past year a few HW posters like Alephnul have reported using the oral ADT relugolix, trade name Orgovyx. . As I remember all have reported good results. To my knowledge none have reported T recovery after stopping the use.

I have been reporting on my experience w/Orgovyx on a separate thread, but regarding T recovery - I was on Orgovyx for 6 months adjuvant therapy w/PBT from June through November 2021. T prior to ADT was 734, during was <3, and 6 weeks after end of treatment had returned to 643.

One side effect note - although T dropped and recovered precipitously, the sexual side effects (loss of libido and ED) took about 2-3 months to occur and about 3-4 months to recover.