1. < Prostate Cancer

Fun with ADT and testosterone

Posted by jeff Marchi @jeffmarc, Jun 11 5:10pm

I know I’ve mentioned to people on here that I quit taking Orgovyx. I was on Lupron for seven years and then took Orgovyx for 8 months. I did this after discussing it with my oncologist. After all this time on ADT, it was unlikely that my testosterone was going to come back quickly if at all. She agreed but also added the sensitive testosterone test to my monthly tests.

It’s always been believed that it takes as long to get your testosterone back as you were on Lupron. Not sure that really is accurate..

First month i was undetectable second month testosterone hit five, third and fourth months it went up 80% each month. Last 2 months over 20% each month and it hit 49 on month 8. This is a lot faster than we were expecting it to come back. We know that PSA comes back much quicker when you’re on Orgovyx. Did that last eight months make that big difference and offset 7 years of Lupron.

I know other people in here have reported that their testicles had shrunk a lot on ADT, but I never noticed that. I wonder if that is a factor.

I emailed my oncologist about this, as we had been discussing the number in previous months. She responded to me that based on the Embark trial I really should not let it get above 50, so I’m back on Orgovyx. She has a huge client base, she’s the only GU oncologist in the whole Kaiser system and she’s in northern California. Within 42 minutes of sending the email to her about whether or not I should go back on Orgovyx she had communicated back with me twice and put in a prescription for orgovyx. People complain about non-responsive doctors, she is available almost all the time and extremely knowledgeable.

You never know how long it will take to get your testosterone back! SURPRISE!!!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

slick64 | @slick64 | Jun 13 7:37am
In reply to @ecurb "All I can say is : let’s compare our T levels in July , when mine..." + (show)
@ecurb

All I can say is : let’s compare our T levels in July , when mine is checked again. Been off all ADT meds since January 22, 2025. Was on ADT for 28 months total.

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Good news your off ADT, however don’t be surprised if you numbers haven’t come up much or returned at all. I’ve been off ADT for two years now and my numbers are still surprised. Asked about testosterone replacement and got the throwing gas of a fire. As of my last test my testosterone was 155, down a bit since last time. Now I found out, that I could be one whose T doesn’t come back and will need replacement. I shall find out with the next testing cycle.
Oh, what fun. Stay strong.

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2 replies
ecurb | @ecurb | Jun 13 8:39am
In reply to @slick64 "Good news your off ADT, however don’t be surprised if you numbers haven’t come up much..." + (show)
@slick64

Good news your off ADT, however don’t be surprised if you numbers haven’t come up much or returned at all. I’ve been off ADT for two years now and my numbers are still surprised. Asked about testosterone replacement and got the throwing gas of a fire. As of my last test my testosterone was 155, down a bit since last time. Now I found out, that I could be one whose T doesn’t come back and will need replacement. I shall find out with the next testing cycle.
Oh, what fun. Stay strong.

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I see your plateau ing....around 150.....well that ok....my last T level 9 months ago was 4.9. cant wait til july 17th to see if its going back up at least a little bit like yours has....ttyl guy.

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kujhawk1978 | @kujhawk1978 | Jun 14 10:05am
In reply to @slick64 "Good news your off ADT, however don’t be surprised if you numbers haven’t come up much..." + (show)
@slick64

Good news your off ADT, however don’t be surprised if you numbers haven’t come up much or returned at all. I’ve been off ADT for two years now and my numbers are still surprised. Asked about testosterone replacement and got the throwing gas of a fire. As of my last test my testosterone was 155, down a bit since last time. Now I found out, that I could be one whose T doesn’t come back and will need replacement. I shall find out with the next testing cycle.
Oh, what fun. Stay strong.

Jump to this post

Hmmm, the old adage that T is throwing gas on the fire, is it?

I've come off ADT twice, first after triplet therapy, 2nd after doublet. T recovered quickly in both cases in the first three to six months. Why, who knows! A possibility is I exercise quite a bit and I have seen literature about the role of exercise in T recovery.

But, the question my medical team is if my T recovered to 400+ why did PCa not rest it's ugly head until 4+ years the first time, we are at 14 months the 2nd time, no activity. Their answer, we don't know but enjoy!

So, I am not sure about that adage that T is fuel for the fire for all when coming off treatment.

I know I feel better, my activity level doesn't necessarily change on versus off treatment, just how I feel doing things.

If T is 155 now, I guess the question is, would TRT make a difference? I mean if any T is "bad" then you may already be at risk for further recurrence.

This is where the science and art in medicine come in play, the science says T is "bad," the art says in specific cases, is it?

Kevin
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1 reply
jeff Marchi | @jeffmarc | Jun 14 11:22am
In reply to @kujhawk1978 "Hmmm, the old adage that T is throwing gas on the fire, is it? I've come..." + (show)
@kujhawk1978

Hmmm, the old adage that T is throwing gas on the fire, is it?

I've come off ADT twice, first after triplet therapy, 2nd after doublet. T recovered quickly in both cases in the first three to six months. Why, who knows! A possibility is I exercise quite a bit and I have seen literature about the role of exercise in T recovery.

But, the question my medical team is if my T recovered to 400+ why did PCa not rest it's ugly head until 4+ years the first time, we are at 14 months the 2nd time, no activity. Their answer, we don't know but enjoy!

So, I am not sure about that adage that T is fuel for the fire for all when coming off treatment.

I know I feel better, my activity level doesn't necessarily change on versus off treatment, just how I feel doing things.

If T is 155 now, I guess the question is, would TRT make a difference? I mean if any T is "bad" then you may already be at risk for further recurrence.

This is where the science and art in medicine come in play, the science says T is "bad," the art says in specific cases, is it?

Kevin

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Not quite sure what you are saying. You say your T recovered to 400+, But then you say “ If T is 155 now”. I guess that just a hypothetical?? If your T is stuck at 155 and considering TRT! Some people do it without a problem, Some people have their PSA rise. I think I saw somebody posted that in here a month or so ago. You might go to the top level of Mayo prostate cancer and search for testosterone and find more comments.

Prostate cancer feeds on testosterone even after you become castrate resistant because not all of the cancer is castrate resistant, so ADT works on some of it. This is one of the things I face.

It took 3 1/2 years after my surgery before prostate cancer came back again. Sound familiar? 2 1/2 years later, it came back again and I had salvage radiation.

Neither of us are unusual, PC comes back a lot after surgery. In my case, I have BRCA2 so it’s difficult for my cells to prevent prostate cancer from propagating. In your case, you had an advanced case that required triplet therapy (chemotherapy). That means that the cancer is in your bloodstream and can go anywhere, and come back anywhere. You may end up having to be on these drugs for a lifetime in order to manage the cancer. We are both waiting for the drug that solves this completely.

The graph that you posted at the bottom is cut off on the right side in December of 2024. You don’t clearly say when you stopped ADT

REPLY
1 reply
kujhawk1978 | @kujhawk1978 | Jun 14 12:28pm
In reply to @jeffmarc "Not quite sure what you are saying. You say your T recovered to 400+, But then..." + (show)
@jeffmarc

Not quite sure what you are saying. You say your T recovered to 400+, But then you say “ If T is 155 now”. I guess that just a hypothetical?? If your T is stuck at 155 and considering TRT! Some people do it without a problem, Some people have their PSA rise. I think I saw somebody posted that in here a month or so ago. You might go to the top level of Mayo prostate cancer and search for testosterone and find more comments.

Prostate cancer feeds on testosterone even after you become castrate resistant because not all of the cancer is castrate resistant, so ADT works on some of it. This is one of the things I face.

It took 3 1/2 years after my surgery before prostate cancer came back again. Sound familiar? 2 1/2 years later, it came back again and I had salvage radiation.

Neither of us are unusual, PC comes back a lot after surgery. In my case, I have BRCA2 so it’s difficult for my cells to prevent prostate cancer from propagating. In your case, you had an advanced case that required triplet therapy (chemotherapy). That means that the cancer is in your bloodstream and can go anywhere, and come back anywhere. You may end up having to be on these drugs for a lifetime in order to manage the cancer. We are both waiting for the drug that solves this completely.

The graph that you posted at the bottom is cut off on the right side in December of 2024. You don’t clearly say when you stopped ADT

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The 155 was what @slick64 said his was, not mine. When measured in October 2024, it was 445. I have labs Monday as part of my Medicare Annual Wellness exam, ask my PCP to check it.

Not sure what happened with the chart, fixed it. I did SRT + 12 months Orgovyx, April 2023-April 2024
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