Low Testosterone

Posted by ava11 @ava11, 3 days ago

It has been 15months since I stopped ORGOVYX after being on it for 1 year. My PSA stayed at 0.03. My Testosterone during ADT dropped to 8. But after I stopped ADT, it went up to 85. But now it is 46. PSA is 0.03 My Gleason Score 9 but cancer was in the gland and I was treated with 5 sessions of SBRT at UCLA. I am 90. Any one in this situation?

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

Same problem with low testosterone...nearly undetectable...have been off ADT for a year and my PSA remains undetectable. Low energy, etc. This seems like good news/bad news dilemma.

REPLY

Radiation for me ended 3 years ago, Eligard 2 years ago. ALL side effects
still in place! For some I think they are permanent!

REPLY
Profile picture for ava11 @ava11

@retireddoc
Is it true once you start TRT and if you stop, there is no chance natural production of Testosterone? In other words I need to be on TRT rest of my life to feel good unless cancer comes back.

Jump to this post

@ava11
From what I understand, yes, that is true. When you go on TRT your testicles stop production. My MO told me once I got on TRT it would be for life. I would assume there is a cancer scenario down the road when my MO would stop the TRT.

Some guys like to know every future step and contingency. I don't. I am trying to live my life for now. I leave the future treatments up to my MO and I'll deal with it when it comes. I just follow instructions. He knows my risk tolerance, that I want to live as long as possible etc, etc. Right now, thankfully, I am feeling no SE from my cancer or any treatments (other than having a penile implant due to surgical/ ADT induced ED-BUT, wow I love the implant so far!).

REPLY
Profile picture for retireddoc @retireddoc

@ava11
From what I understand, yes, that is true. When you go on TRT your testicles stop production. My MO told me once I got on TRT it would be for life. I would assume there is a cancer scenario down the road when my MO would stop the TRT.

Some guys like to know every future step and contingency. I don't. I am trying to live my life for now. I leave the future treatments up to my MO and I'll deal with it when it comes. I just follow instructions. He knows my risk tolerance, that I want to live as long as possible etc, etc. Right now, thankfully, I am feeling no SE from my cancer or any treatments (other than having a penile implant due to surgical/ ADT induced ED-BUT, wow I love the implant so far!).

Jump to this post

@retireddoc
I would like to follow your philosophy with some due diligence and not depend on my doctors 100%.

REPLY
Profile picture for kujhawk1978 @kujhawk1978

Well

With a GS of 9, having your PSA stay stable for 15 months after stopping ADT with a modest T recovery to the 40-90 range and age 90, well, not bad.

One of the questions might be, have the side effects of systemic therapy, hot flashes, fatigue, muscle dnd joint stiffness...subsided with the cessation of systemic therapy...?

How do you separate out symptoms of aging versus symptoms from "low T?"

Good question, I had mine checked this week as part of my Medicare annual wellness consult, 455, Free T 79.

My PCM in response to my comment that I felt fatigued still, you're 70...was his response.

I go to the gym most every day, 45-60 minutes on the bike, resistance training, swim 500-100 meters, hot and cold tub.

Other days I ride my bike outside 30-45 miles. Vacations often involve hiking, skiing...

This year I've ridden my bike in two vets, one was 55 miles, the other 50.

So, am I tired because of what I do, my age, or combination of both...? Probably the latter. Would boosting my T to say 700-1000 fix the "tiredness?" My PCM thinks not, age is the dominant factor from his experience.

My PCM asked if I take naps, yep, most afternoons!

Recovery of T is a function of age, baseline T, which agent, how long the systemic therapy was...

We generally know the older you are, the longer you are on systemic therapy and the agent, Orgovyx vs say, Lupron, impacts recover, that recovery may be slow and minimal.

What's normal, well, I've seen 300-100 tossed around as @jeffmarc has said.

What about TRT? Keep in mind there is a school of thought that says any T is fire for the fire and any T is bad...

As I say, caution about statements that say any, all...if that were the case, why have I enjoyed treatment vacations of 5 and 2+ years after de-intensification? My T recovered in both cases to 400+ in the first year.

You could discuss TRT with your medical team, would it solve your concerns you mention, maybe, would it be fuel for the fire, maybe?

If the latter, you may have treatment options such as estradiol, ARI monotherapy, MDT only that don't involve castration.

You may still experience some of the side effects.

What would I do were I you?

Tell to my medical team about TRT. If they support doing so then have discussion about non-castration treatment options should you have recurrence. Also, discuss what constitutes recurrence, will you image, if so , at what PSA, with what?

Manage my health through moderation, diet, exercise, stress...

Take the damn nap...

Kevin

Jump to this post

@kujhawk1978
Thank you for your reply. you are a young 70! I guess there are no 85+ year old people here undergoing TRT for me to learn from their experience.

REPLY
Please sign in or register to post a reply.