For those of us who earned the long-ADT badge needed to be in this Advanced Prostate Cancer group, the odds of a full T recovery apres ADT are approximately nil. pmc.ncbi.nlm.nih.gov/articl...
Interesting that this study did not include antagonists, such as Orgovyx. One of their "selling" features is the much faster T recovery when compared to Lupron, etc. The Orgovyx website has good info on this subject.
I dont know if I'm an outlier but another effect of no T for myself has been my once very ripe smelling feet dont smell anymore. So if that fits you the return of smelly feet could be another sign lol.
I finished my ADT treatment almost three years ago and my T is currently only 14 (at the age of 72). I was on ADT for 24 months.
At my age my family jewels don't get much attention these days so i can't gauge size changes in anything other than my stomach. My libido is still barely noticeable and ED is an ever present companion.
I'm due for my PSA and T test shortly so I'll see if anything has changed (hopefully not). I'm more concerned with any PSA changes. My PSA has been at 0.2 for the past 9 months. I didn't have RP, just TURP, ADT, and Radiation.
My last Lucrin ( Lupron ) injection was on June 2022 ,completeting 24 months HT.
Currently 68 yrs of age.
PSA/ Testosterone test results as follows;
Oct 2022- PSA =<0.01 Testosterone =0.5nmol/L
March 2023- PSA = <0.01 T = 8.8 nmol/L
Sept. 2023 - PSA = 0.08 T = 18 nmol/L
March 2024- PSA = 0.12 T= 18 nmol/L
May 2024 - PSA = 0.22 No T test !!
July 2024 - PSA = 0.19 T = 26 nmol/L
Nov. 2024- PSA = 0.19 T = 30 nmol/L
Signs of Testosterone returning were the Bat and Balls were slowly "regrowing" not wholly to original size but ...about 90%.
I started to feel "normal" mentally when my Testosterone was at 8.8, and I remember thinking to myself that I'd gladly accept this level of Testosterone for life provided the cancer did not return.
I was/ am delighted with the last result, where the PSA level held despite a further increase in Testostrerone.
Yes I’m absolutely certain, I was very surprised myself to see that 30 nmol/ L as I’ m 68 years old.
The Reference range on the results form is
10.0 to 35.0 nmol/L.
It’s a pity I didn’t get a baseline test at diagnosis. Although I did exercise i.e. resistance and cardio throughout the HT treatment maybe that was a factor. Also, the only "unusual" food I eat is TEMPEH, thats a protein rich fermented soy ,it's made locally here in Perth by an Indonesian lady. 🤷🏼♀️
I have another PSA/Testosterone test coming up soon, I’ll post the results when I get them .
I have hypogonadism, and have very low natural levels of T. I just completed 6 months of Orgovyx ADT, and I have just started doing supplemental T (TRT) this week. I will be monitoring my PSA and T once a month.
Here's an argument to give your endocrinologist (who has been taught that "T feeds PCa"). When PCa patients finish a course of ADT, no MO or urologist complains when their T naturally recovers to its baseline level. So, when someone finishes ADT, there should be no good medical objection to doing supplemental TRT to achieve the same normal level of T (but, faster).
Of course, you need to regularly monitor PSA and T to watch for recurrence, and adjust T levels accordingly.
I was on ADT for a bit more than 2 years. Ended this past May (2024). My last test only showed it at about 80. Still hoping it goes higher and will see in about 3 months where I am at. Its an uphill battle in many cases and some never it see it back in the "normal" range. The question is supplements? It's been a discussion with my Oncologist. Will keep everyone up to date as time passes.
The rule of thumb is that the average time to recover your baseline Testosterone level after stopping ADT is equal to the length of time that you were on ADT. For example, if you were on ADT for 1 year, then 50% of men will recover their baseline T after 1 year. Note, however, that there is a large scatter in this data, +/- factor of 2X on the % of men that recover their original T. Sad to say, for 48 months on ADT, the data says that it will take at least 48 months to recover your original T.
Recovery of T is much sooner than time on ADT for many men due to other factors. Specifically age, biological age, T at baseline, and overall health. Add the increasing use of Orgovyx to that.
Admittedly 4 years is a bit tough . Without question full recovery after that long and beyond is uncommon.
The "rule of thumb" is not a strict relationship. It's just an average response, with a large scatter (at least 2X) around that average.
Everything you said is true, too. Recovery after Orgovyx is much faster than Lupron. My "rule of thumb" is only for Lupron-like LHRH agonist drugs, not Orgovyx. I probably should have mentioned that...
I had IMRT, brachyboost, and ADT. ADT was the worst of it. T was zip, zero, nada. Life was miserable. But, 1.5 yrs (! who knew? who told me?) out, T returned to higher than pre-treatment level. Never high for me. 250s before PCa. Now, 340s. However, some ADT side effects remain - man boobs, wt gain, join pain, easy fatigue. At 75, I've given up trying to return...ain't no going back. Take me as I am.
Decrease in fatigue, muscle and joint stiffness, hot flashes in that order.
Genitalia begins returning to "normal," whatever the heck that is.
I didn't experience hair, body order, loss of libido or depression.
How long you say before...?
When I've come off Lupron and then Orgovyx, my T returned to 100+ in the first three months, 400+ by six months. So, the "healing began in the first three months and was "complete" by six months.
Why so "fast?" I don't know. May be that exercise played a role. I am active, go the gym most days, other days ride my bike, do my own yard work, help out around the house with the cleaning chores, walk the dog.
For me, the only difference between life on ADT and off it was I felt better off, otherwise, no appreciable change in what I do.
Thank you, Kevin, for the PSA vs Time plot. It shows the dramatic effect of ADT on PSA, first with Lupron, and then with Orgovyx.
I think I mentioned above that there is at least a factor of 2X variation in the T-recovery levels and time after stopping ADT. You had a unusually good response. But, many men don't.
Just like PCa itself, T recovery so unique to each. I agree that the main factors are age, duration of ADT, and fitness level. I was very fortunate in my T recovery. I was diagnosed at 59, and went through 24 months of ADT and Abi/pred, coming off therapy at age 61. T recovery only took about 6 months.
Obviously, a blood test is called for, and it's especially relevant if you know what your T was before ADT.
In terms of noticing things, about 3 months after ceasing 12 months of ADT, I woke up one morning feeling much better than I had since the SEs had set in. Less fatigue, less depression. Perhaps a month later, hot flashes started to wane.
Hey Bluesman, I am 66. Second round of radiation for Stage 4 PC. After 24 months of ADT, which was tough, my testosterone finally came back after 8 months of working out, jogging, etc. I hired a trainer. Mostly weights seemed to help. It takes a while for the ADT to get out of your system. Then the T seems to come. Good luck
I can only tell you what happened to me after 21 months of ADT treatment and share some posts that I made on this subject. My TET was as low as 7-10 and it started to come back after 6 months of vacation, hitting 425 ng/Dl after one year (it was 385 ng/dL before my RP). It does NOT come back for all men (about 30%); see Link below. But here is what I experienced;
#1 Libido; it has not really returned to the levels I had prior to surgery. A friend who had many years of ADT and is now off treatment said it never comes back. That would be sad. I do feel some Libido but not what I had. I think that it is not going to completely recover even with my normal TET.
#2 Symptoms. The only thing that happened to me and it was strange, was that my nipples were sore; painful even to the touch. So much so that I was worried I had breast cancer and went in to have a mammogram done (yeah, I was the only Man in the place). All was normal and the pain persisted for at least 18-20 months, then went away. Dont know if this is typical, but it happened to me.
#3 Strength. I had low energy n strength for the entire time I was on ADT. I also impossible to build muscle mass, no matter how much I. These two issues slowly came back to normal.and at about 18-20 months I finally felt 'strong' again... porncant explain it. But I now have power in my legs n am able to handle dumb bells with confidence. It took time to get this 'feeling' back, but it comes back.
#4 Hair. My hair completely fell off (save my head, which was already half bare). I had not a hair on my chest, arms, legs, etc...after 6 months I saw 'peach fuzz' and after 18-20 months I have hair on my chest and arms. BUT not all my hair grew back; 80% has returned and very little on my legs.
Those are the main points...there is more but I wont bore you. Sex...that is another subject that I wont go into right now. But regarding this matter, I am missing out on a better recovery simply because I was not informed of choices I should have made early in my treatment that would have saved more function; wont beat that drum again here...but our Dr’s treat us like children and dont tell us the truth, which would give knowledge of options that we can choose WHEN we actually have a chance of doing something. But I am still alive, doing well and as of today, in remission...that is all good and as far as my Doctors are concerned, all that they care about. See, got onto my soap box again when I said I was not going to...
Here are some posts on TET that may be of interest...TNX Rick
I got off 6 months of Lupron, 3 month depot shots, effectively Jan. Might be my imagination, but I am feeling better, more energy and returning libido. Pretty good for a 79 year old.
Only if I had to . Meanwhile I hope for T to return to reasonable levels. Next time I need ADT I am going the Estradiol route. I think I will continue Erleada as a mono therapy while I wait to see whether T restores. I have heard the shorter the interval on ADT, the more likely T will recover.
I agree with the estrogen route if I need it in the future. I was on lupron for 6 months and T came back in 2 months. I am now back to my level of 700.
noting that we all respond differently this was my experience. My age is 64. I was on Lupron for 6 months (Two 3 month injections) and T was undetectable. 5 months after the second injection my hot flashes drastically increased in frequency and duration for about 5 to 7 days. then I had my next blood test and my T was up to 300. Looking back on it I think the hot flash increase was when the T started rapidly increasing. that was 1.5 years ago and my T runs about 350.
8 months after stopping ADT, my T is finally going up. Up to 126 last week. Was only at 32, 3 months ago. That was after 2 yrs of Lupron and Abiraterone
My last Zoladex shot (similar to Lupron) was at the end of August, and my last Nubeqa dose was on December 31st.
A couple of blood tests show my T rising, but slowly. My body must be really sensitive to that T though after so long of an absence, because I'm starting to feel like I'm going through puberty again. I'm seeing more "positive" aggression/drive, more confidence, spontaneous erections and thoughts of sex. I'm kinda scared of how things will be when it really comes back to be honest. I had a bit of a temper before ADT!
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High testosterone = very bad ADT side effects?
Does testosterone fluctuate after ADT ends?
