After 2 years of ADT, I decided against continuing on that for life and to initiate iADT. Otherwise known as "taking a vacation".I am now 10 weeks without ADT, and my testosterone is already at 104.
My questions this time are for others here who have had a similarly quick return of testosterone.
I have two things of concern that are happening, but I'm not sure if they are testosterone related. It's possible that they are more psychological.
The first is that I have bursts of physical energy and self assurance that feel good, but leave me feeling very drained after just a few hours.
The second thing only happens at other times. I get what I can only call the shivers. It's like I suddenly got too cold in my core. (I'm from Minnesota and I do know what that feels like 😄).
Does this ring a bell with any of you who have experience with iADT?
What I have been telling myself so far is that these sensations are neither strictly physical nor strictly emotional. They are both. It is how I'm reacting to suddenly having testosterone back in my system.
I really did not expect my testosterone to start up again so quickly. It's been only 10 weeks and I'm already halfway to a normalish level.
I'm looking for corroborating experiences from others here. If nobody here has had similar reactions to a quick testosterone rise, I'll need to be more conscientious about the possibility of some mild mania or anxiety that needs attention from a psychological direction.
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Lewellen
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I was on ADT for two years. Took my last Lupron shot in January 2023 but continued with daily Abiraterone. Did not notice any major difference.
Stopped Abiraterone and Prednisolone in July 2023, and could easily feel testosterone returning after two/three weeks. August 30 my testosterone was 12 nmol/L which is 346 in ng/dL.
I’ve been off Relogolix and Darilutimide for about eight weeks and my Testosterone back up to 324. FYI, 250 is considered normal. I’m not aware of any side effects during the holiday period
I must have been reading some chart upside down or something! I thought it would be another couple of months before I started noticing the T is back.
I've got no complaints about having a little libido again, and as far as the rest of it goes I guess I'll just wait and see if the emotional dust settles in a few weeks 😄
The length of time a person is on ADT. Their age. And their unique body chemistry/ hormone profile (and x) all factor to how quickly T recovers. My husband has been off adt for 1.5 years and his testosterone didn’t start creeping up until he’d been off for 9 months. It’s still in the low 100’s, a year and a half later.
I am not on iADT but my ADT ended in May 2023. Similar to you, after 3-4 months, my T was up to roughly half where it was at pre-treatment. But in the 6 months or so that followed, it has not gone any higher and has in fact gone a little lower.
I have ups and downs with regards to the energy level. For example, I was feeling tired for the past few weeks and then last week I felt fairly energetic but for the past two days I need to give myself a kick in the behind in order to exercise. The fluctuation is not something abnormal I hear.
This is my second 'vacation' , three years now and undetectable. Previous vaca was two hears. My testosterone rose pretty quickly and had similar energy spikes but leveled out over time.
There are good opinions out there against vacations but I monitor my PSA with a paranoid approach. The QOL benefits have been great. In my non medically qualified opinion, part of me looks at the vacations as a potential opportunity to reduce time to failure from medication resistance. My oncologist supports this view (seattle cancer care)
Bravo! It sounds like you made the right decisions for your treatment. And that was well over 5 years ago! Less data to work with and even more of a sense of rolling the dice at that time.I feel very positive about my choice, but I am looking forward to my biochemical equilibrium settling down; it feels like being on a boat but not having my sea legs yet. Up and down, up and down.
Hey, I just remembered another thing that happened recently that left me feeling confident about my decision. When I decided to go intermittent, it look like I was going to be getting into a trial measuring what happens during the vacations. I had an interview, but then the word came back that I wasn't going to be in the trial because I didn't have enough cancer in the first place to qualify 😂.
I was on Lupron for one year with last 3 month injection July 2023. PSA undetectable. My labs from December 2023 were PSA still undetectable and T<3. I am scheduled for another 3 month blood draw this week. My MO at Hopkins said in their experience with similar cases and age (I'm 71) that it takes 9-12 months to see significant recover of T. Some never do.
Partner is 76. Began Lupron, then Orgovyx, then final round of ADT, injection of Eligard, in mid-Dec 2023; 6 months of ADT. T already back up 400+, which is notably higher than it has ever been, even pre PCa. Recent convo with RO indicated he was a bit confused over this and he wants retesting in a couple months.
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Lupron withdrawals, is it a thing? 
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