Side effects after stopping meds

As others have said, recovering one's T after systemic therapy is a function of various factors:

Baseline T
Length of systemic therapy.
Which agent
Age

Orgovyx is generally known to have "faster" recovery rates.

What is faster? Good question. My experience, 300+ on the first three months, 400+ by six.

So, he's 3+ months from treatment cessation. If he fits the statistical reduction, albeit population based, he should be experiencing some relief from the fatigue, muscle and joint stiffness associated with castration. The hot flashes and genitalia shrinkage along with libido should get better from 3-6 months. The fat cells, well, could be 12+ months even if he's watching his diet and exercise, they're pretty stubborn.

My baseline T was 600.
I was on Orgovyx for 12 months.
I was 67 when I came off treatment.

You say June was treatment cessation, answers to the questions on age, baseline T, current T...can help the forum provide their thoughts.

There is always the question, what do we do if T doesn't recover or stays south of 300 which is where the medical community may say, let's look at it.

You may want to discuss TRT with his medical team in the event things don't change. That is not a universally agreed upon solution in the medical community for someone who has PCa, even if it's "NED." Old habits die hard, the adage "T is fuel for the fire," ergo TRT is bad still exists.

I'm not in that camp, my personal experience says that's BS. Both times I've come off systemic therapy my T has recovered to 400+ in six months. My treatment breaks have lasted five years after triplet therapy and current at 28 months after doublet therapy, next labs in October.

Kevin

@tbgb50
The reason side effects don’t go away is that some people do not get their testosterone to come back to a normal level after stopping ADT.

That’s when you want to use TRT (Testosterone replacement therapy) Which involves getting injections of testosterone to bring the level up to normal. As long as You don’t have a very aggressive case of prostate cancer. It usually has no effects other than to stop the side effects.

@tbgb50
You definitely should switch to Orgovyx. You could do that at the time that your Lupron shot has expired. Did they give you a three month shot or a six month shot?. I switched from Lupron to Orgovyx and I prefer it. A lot of people say they have fewer side effects.

I had 40 sessions and no side effects. Most people I know who have 20 to 30 sessions tend to have more urinary issues as well as diarrhea. Putting in a rectal spacer like SpaceOAR, Barrigel, or BioProtect can prevent some future problems.

Being told you need 24 months means and you have an aggressive case. Have you had a decipher test to find out what your chance of reoccurrence is? That can let you know if stopping it at 24 months is a good idea.

@jeffmarc
I got the six month shot which is why I will switch to Orgovyx for 12 months then see how it goes. My Decipher score is just in the intermediate range at .58, but Gleason 9. Quality of life will be a big consideration but too much is unknown right now to think about what happens 18-24 months in the future.

I know people that have had their primary treatment and even though they had a Gleason nine they still are around 20 to 25 years later. The drugs we have are better than the past drugs and new ones are coming out all the time.

Prostate cancer is a chronic disease for most of us not a deadly disease.

I’ve had it for 16 years, have an aggressive problem, but I’ve been undetectable for the last 34 months. You would never know I have it, Unless I told you, and I’ve been on ADT for nine years.

The time it becomes problematic when you don’t have it treated and it gets to the bone and that can cause a lot of pain.

@brianjarvis Thanks for the summary. Unfortunately I was on Zoladex and over 70 years of age and my testosterone is slow to come back.

@tbgb50 After my experience I would choose Orgovyx if further ADT is considered advisable by your medical team.