I have been on ADT vacation for 10 months now.(stage 4 with starting PSA 2250 in 2019). 2019 started on ADT and PSA has been undetectable 4 months after I started and is still. Testosterone less than 40(undetectable) and still is. My new MO wants to restart ADT (Depo Lupron and Zytiga) if my testosterone rises, even if my PSA is still undetectable. I am not aware that a rising testosterone is used as a criterion to start ADT. Any thoughts?
ADT vacation for 10 months: I have been... - Advanced Prostate...
ADT vacation for 10 months
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Golfnerd
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Is the vacation beneficial to you if your testosterone has been negligible?
No, the vacation is providing no benefit if measured in testosterone level. May be providing a benefit from taking a break from ADT SEs
like what?
Taking a break from ADT SEs!!!!
I'm asking -what are the ADT SEs that are not caused by low testosterone?
I feel much better. Clearer thinking, no symptoms of depression(off antidepressants ) increased strength and endurance, much happier. My T and PSA still undetectable. My new and young MO thinks I should start on ADT if my T becomes detectable even if PSA is still undetectable and imaging studies are unchanged. I ask myself is it worth it? I have a lady friend(my wife died a couple of years ago) and enjoy being intimate. Is it detectable T or PSA that should determine my decision?
Hopkins has trials using supraphysiolic doses of T alternating with no T. I know of no studies of results re this regimen.
There was only one trial of BAT in men who were still hormone sensitive:
But those are all symptoms some people experience from low T. SEs are so individual. Perhaps it was the type of ADT you used that caused that reaction. Maybe you can talk about switching ADT to an GnRH antagonist like Firmagon or Orgovyx.
you may well be correct. I spoke with my oncologist about starting on a GNRH antagonist and he seemed receptive to the idea. The question I still have is whether to base my decision to end my vacation on increasing T or increasing PSA levels. I agree with your assessment that it makes sense to start on a GnRH antagonist when that time comes. Thank you for your thoughtful comments and information.
physiologic.
I base decision on PSA. Ideally T will return to high level for a long(ish) time before PSA rises, and you would then restart ADT. If like me, you will definitely appreciate your vacation time and resolution of all SEs much more when T recovers; especially intimacy. If T doesn’t recover before ending the vacation, I don’t think you will experience much real QOL betterment. Due to number of years on ADT, your T unfortunately might not recover much or at all; but you would still restart ADT or other treatment based on PSA rise, not T rise.
This is my opinion based on my experience. If your not cured your rising T will most likely wake your cancer back up so starting the ADT at that point is getting a drop on it. After my initial therapy concluded my T came back to baseline (420) in about 3 months and the cancer came back slowly but surely right after. I waited to see where the cancer was, maybe a bad choice, but its over so I don't spend anytime thinking about that. This ended up letting my PSA get to about 3. After that back on ADT and Zytiga which is where I am at now. Could be your MO has seen this play out enough to say just start it when your T goes up, which it might never do depending on your age. Good luck.
How long have you been in zytiga. My psa has been undetectable for 8 years using trelstar and is now rising to .014 so I need a second line treatment like zytiga. Thx
2 years the first round, just about a year this time, so far, after a short stint with Enzalutamide. 8 years is a good run, hopefully a second line gives you at least 8 more.
.014 sounds excellent on just trelstar! Are you metastatic? Did you have RP or radiation?
Generally, if your T rises, the PSA is soon to follow. For some it is very soon, others can take quite a while. Seems that your MO wants to be aggressive and not give your tumor a chance to grow, causing a rising PSA. Ultimately, the decision is yours.
Golfnerd, your new young doc is reading out of the SOC book and that’s not you . You are 81 reasonable healthy and all the advice you are getting here are from younger warriors hoping for a cure on the horizon. I like you am an octogenarian and that means we a playing with house money. I have decided QOL at this point is more important to me than living with the SE ‘s . You are welcome to private mail me if you like.
• in reply toHobierat
You absolutely nailed it …..I’m 86 and QOL is #1 priority….im on permanent vacation from all of it other than proton beam therapy on my Mets….Enjoy what’s left.
Mgtd• in reply to
Yep you nailed it. I am just a couple of months before I hit the big 80. There is a huge difference in mentality from being 65. By now I have accepted my mortality and need to balance QOL with quality in any decision making process.
Great conversation. I am similar. Stage 4, currently 10 months into ADT holiday after 24 months of treatment and PSA <0.1. My thought is that if your ADT suppressed T and now you are off ADT and T is still low, why go back on ADT now as it does not seem to be needed at this point. If T rises to a semi-normal level, then have this conversation, but I agree that the key number is PSA. My T recovered quickly and QOL is so much better, so I just go through the anxiety-filled blood work and scan every 3 months. If both show nothing, then I'll continue the holiday. Am I missing a point? Let me know!
The comments here on the topic of PSA, ADT and testosterone are very helpful. For newbies reading this though, it's worthwhile pointing out again that although we talk about PSA a lot, we are not actually fighting PSA directly. (In casual conversation it's so easy to think of PSA as "the cancer". )
But PSA of course is not the cancer - it's only a proxy for cancer activity, in our cases the likelihood of metastatic prostate cancer activity.
And while PSA is a pretty good measure of prostate cancer activity, it's not a perfect measure. There are even evolutions of prostate cancer that sometimes show up which no longer make PSA! (I'm not suggesting that is the case here.)
Let's look at how all three of our topics, PSA, testosterone and prostate cancer, relate to each other over time. Because there is a sequence from beginning to end.
(1) Testosterone is first. The body makes testosterone as the normal healthy state of affairs of course, and we can measure it easily with a blood test. Now in order to live longer in circumstances of prostate cancer, we need to get rid of testosterone, which is kind of crazy! Getting rid of testosterone implies castration. Lots of implications and not only the obvious ones. Testosterone is the signaling molecule that latches onto the surface of prostate cancer cells - and the message carried by the testosterone molecule to the prostate cancer cell is "do your job!" With normal prostate cancer or metastatic prostate cancer, nothing happens without the "permission" of testosterone.
(2) Prostate cancer presence and metastases is second. We can't so easily measure how much prostate cancer we have directly except for imaging, such as CAT scans or MRIs or PSMA scans. But these are pretty crude measures - and can only find large-ish metastases. It's quite possible in advanced situations (in other words for people on this forum) that there are many, even huge numbers, of tiny metastases that we cannot see. (And you can't irradiate them all either - which is why system-wide hormone therapy and chemo etc. are the only effective ways of dealing with cancer metastases.) The timing of the relationship between testosterone and cancer is important to. For example, how long does it take for cancer to go to sleep or die, on initiation of testosterone-suppressing ADT? And how fast does ut spring back if I miss a dose or take a holiday?
(3) PSA is third and last in this sequence. PSA is produced by happy prostate cancer cells just trying to do their job. If testosterone is suppressed by ADT along with other meds too, and the cancer cells go to sleep or even die, then there won't be much or any PSA produced and measurable. (BTW, under normal circumstances PSA's main job is liquefying semen 😳) But now we can see that if and when PSA shows up again after being very low, that cancer has woken up. And a horrible momentum may be building.
If testosterone goes up we can see that right away. And it's only later as cancer cells react to available testosterone that PSA will show up. One could say PSA is a "trailing indicator".
So knowing about the testosterone-cancer-PSA sequence we can ask about blood tests and "what marker should we care about when we're messing around with our testosterone suppression therapies?" Is the best marker testosterone, or PSA? Or something else? Or both?
I recently persuaded my oncologist to add testosterone to my periodic blood panels. Because it just seems stupid to only monitor PSA - PSA is like a Johnny-come-lately to the game. And if PSA is going up then likely the testosterone went up much earlier. I really don't understand why it wouldn't be standard protocol to monitor testosterone.
Excellent input.
I will comment on do I need T tested with every PSA test. At what point do you really need both? For example at some level of T it is not like adding more fuel to a fire. There is a saturation point that once you hit the point adding more T will not affect the increase in cancer or PSA value.
Based on what I have read I will put that level at somewhere between 150 to 250. After a T level of 250 you have achieved 100 percent effectiveness in QOL by then. In my case I now have a T value of 700 but the real benefit on QOL started in the 150 to 250 range.
So after say a T value of 250 my PSA value will not be effected by T. So in my mind why test for it after the 150 to 250 range. At that point PSA becomes a more important value in determining whether your cancer is spreading or returning not T.
My T level is 0. And I'm hoping to keep it there. And this also means my estrogen is probably 0 too. It's a hell of a thing and I'm hoping to do estrogen add-back.
Excellent observations John - My "T" is checked routinely now - agreed the three are inextricably linked but testosterone appears to be the Boss so to speak ! - Studies have found that low levels of testosterone can contribute to the development of pancreatic disorders, including pancreatitis and pancreatic cancer. <- how wonderfull !
IMHO, my MO suggested I could take a vacation (Eligard/Erleada) if I wanted. As I am only 60 years old, I figure I'd suffer the side effects than have a single instance where this POS rears its head. It's already in my lymph system. The decision for me is easy, keep my guard up, so to speak and combat the SE as best as possible.
There is no hard and fast rule or guideline for this situation. Each person's response is different and unique.
I would let PSA be your guide, not T, on how to treat your PCa. There are many papers by A. Morgentaler that a high T does not increase PCa in advanced patients. If you are still hormone sensitive, then increasing T will likely eventually lead to an increasing PSA, but that may take some time. Periodic monitoring is important.
PSA is a direct indicator of tumor activity. T is just one of many factors (that is easy to measure), which may, or may not, influence your particular case of PCa.
You may also want to get regular imaging done (e.g., MRI, PSMA-PET, or high-resolution US), to track your tumor's growth or shrinkage in your prostate.
You may also want to consider taking Dutasteride, which shrinks your prostate by 50%, reduces PSA any 50%, and has been proven to shrink the tumor's size by 30% after 6 months. It doesn't cure cancer, but it delays the progression of it.
You're in charge...not your doctor. If you can't agree with your provider, then get a new doctor. At the very least, get a second opinion. Dr. Kishan at UCLA, or Mark Scholz in Calif., would be excellent choices.
And, enjoy your newfound Quality of Life!
Like you I am in my eighties. We know our time is limited and death is inevitable. Is your goal quantity of life or quality of life. If your goal is quantity of life go back on ADT. If it is quality of life you should consider taking a break from ADT and monitor PSA every three months. There are some doctors that say you can wait until your PSA is a 5 to 10 before restarting ADT. Newer scans can detect the location of the cancer and it can be radiated.
The one question I haven't been able to get an answer to is at what PSA level do you start experience physical problems. Maybe that is the time to restart ADT +/radiation at our age.
It is your choice.
MO's are overcautious by nature of their profession, imo.
Incredible....From my perspective I'm blown away how great you have been doing considering PSA 2250 at DX. I would think you are high volume metastatic, are you? 5 yrs. and still undetectable with intermittent ADT. amazing
I am surprised nobody mentioned this but under 40 testosterone is not undectable. Some labs like local hospitals will list a T level <40 when in fact it is much lower. You should be having your T level tested by a lab that goes to zero. Mine gets sent to Quest in Chantilly Va. because my local labs only go to 40. God bless.
Mine from Orchiectomy is T≤2.5ng/dL lowest lab has.
I know I have seen some really low numbers. When my oncologist sent mine out the first time it came back <40. I told him that is of no help because my urologist had it tested several times and it was 13 on lupron alone.
I hear what you are saying but why is it necessary to test say below 40 as you mentioned. What does test to say 0 add? Thanks
A good oncologist test to see if there any changes in adt effectiveness. If for instance you are on lupron alone it has been found that a T level of 20 indicates a better outcome than the previously accepted 50. If you are on lupron and a drug like zytiga your T level may be 3 for instance. If your Psa goes up the T level should be checked. If it goes up to 15 it shows the drugs are not lowering T. My urologist told me of a patient responding well to Lupron. T level was low teens. The firm he worked pushed Eligard which is supposed to be the exact same drug but with a different delivery. It is injected in stomach. Doc orders a new T test and T level climbed considerably so he put patient back on Lupron and T dropped back to low teens and Psa dropped back down. With T tests that only go to 40 there would have been no way of knowing exactly what was causing Psa rise.
Thanks for the response.
You are quite welcome. God bless.
Just got back from another round of golf. This discussion is just great. Very helpful for those of us who are octogenarian and wouldn't mind enjoying another few years of happiness. For me at this point QOL is paramount. However, if my PSA , T or studies indicate a potentially rapid recurrence I am willing to try the GnRH antagonist route because, as Tall_Allen noted, I don't know if the SEs are due to a low level of T or the Depo Lupron I had been on for 5 years. If the SEs on the antagonist are similar and unacceptable I will need to decide what I should do. My decision will be my own but I am willing to look at any information presented to me. My life is my own and only I will decide when to end it. When I first got the diagnosis, I figured I would have maybe a couple of years and I talked to my internist (who was a resident when I was in practice) and we made a pact. When I decide that life is not worth living, he would help me. My kids and my lady friend know this and have accepted it. Cheers, be happy and enjoy life.
Golf nerd like one said before it’s absolutely amazing how well your doing >2200 down to undetectable, the answer seems pretty obvious. I’m 59 and like you qol and intimacy is paramount so I’ve been on an adt vacation for almost two years n decided to go the ivermectin route contrary to what most people think works but it’s def working for me thus far. My t initially roared back to 585 n settled in around 480 after a month and my psa has been holding steady at around 1, had psma scan few months ago with a cpl suspicious areas but mo and radiologist said they weren’t convinced it was Pca so they’re just monitoring n testing every six weeks. So how can I put this other than at 59 I think I’m taking a bigger risk but totally comfortable with the protocol until psa starts rising not t before I’m concerned. Good luck n keep up the good work…
"My new MO wants to restart ADT" .
Are you pro or anti? Pro no problem, anti see a new M.O.
Good Luck, Good Health and Good Humor.
j-o-h-n
Great discussion... I vote for QOL. I am 6 months into my first Vacation ( see profile for details) and hope it lasts till I am 81, at least.
Wow, great conversation. I am definitely continuing get a T count in my quarterly bloodwork. Any thoughts on blood/liquid biopsy, perhaps after mets detected, but while hormone sensitive, even if in remission (negative scans and <0.1 PSA)? I've heard it can be revealing in terms of genetic changes or mutations since biopsy dx. Can it make for a better informed decision?
Congratulations. That is great news. During 3 years of ADT (Zoladex) and a few sessions of radiation therapy, my PSA went from 135 to about ,.5 (can't remember exactly). My MO suggested a vacation and I agreed. That was 3 years ago. My PSA has been rising slowly over time and is now around 3.6 at last reading. I do an hour and a half of rigorous exercise every day and pray to God for a few more good years (now 78). But life has been good (with 2 amazing sons and 4 beautiful grandchildren and 5 books published in English and Spanish so I am ready to go to the happy hunting ground whenever I am called. Big hugs to all.
My t started increasing within 2 months after stopping a 22 month stint of adt. Rose to 430 after two year vacation and it was at this point my psa started increasing albeit very quickly. Have to have two mris done tonight to confirm/deny lesions on my femur and spine. Pet scan showed uptake in my prostate bed and lymph nodes. Starting adt (orgovyx and nubequa)tomorrow and have an appointment with my radiational oncologist next week. I wish I didn't know what the side effects are going to be. Ignorance is bliss. Good luck 👍
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