ADT vacation for 10 months

[Golfnerd]

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?

[Tall_Allen]

Is the vacation beneficial to you if your testosterone has been negligible?

[6357axbz in reply to Tall_Allen]

No, the vacation is providing no benefit if measured in testosterone level. May be providing a benefit from taking a break from ADT SEs

[Tall_Allen in reply to 6357axbz]

like what?

[6357axbz in reply to Tall_Allen]

Taking a break from ADT SEs!!!!

[Tall_Allen in reply to 6357axbz]

I'm asking -what are the ADT SEs that are not caused by low testosterone?

[Golfnerd in reply to Tall_Allen]

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?

[Golfnerd in reply to Golfnerd]

Hopkins has trials using supraphysiolic doses of T alternating with no T. I know of no studies of results re this regimen.

[Tall_Allen in reply to Golfnerd]

There was only one trial of BAT in men who were still hormone sensitive:

prostatecancer.news/2016/09...

[Tall_Allen in reply to Golfnerd]

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.

[Golfnerd in reply to Tall_Allen]

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.

[johnscats in reply to Golfnerd]

Your cancer will obviously start to grow as testosterone increases because it feeds on it at present it's dormant it hasn't gone away I had a break 2 years ago stage 4 psa rose in tandem with t

[Golfnerd]

physiologic.

[TJS-1]

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.

[treedown]

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.

[Mikes21 in reply to treedown]

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

[treedown in reply to Mikes21]

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.

[dhccpa in reply to Mikes21]

.014 sounds excellent on just trelstar! Are you metastatic? Did you have RP or radiation?

[Mikes21 in reply to dhccpa]

Rp. I had enlarged lymph node pelvic area after so they started trelstar and it shrank. Unfortunately they didn’t radiate the pelvic bed. My mo and ro said what would they radiate. Anyway I’m thinking I need a second line treatment like zytiga if next psa rises.

[RoseDoc]

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.

[Mikes21 in reply to RoseDoc]

I took a two year vacation before a rise in psa occurred. Now I’m experiencing a psa rise after being back on trelstar for four years. I’ll ask my mo if I can get on zytiga with trelstar

[Hobierat]

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.

[Roxysdad in reply to Hobierat]

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.

[Nfler in reply to Hobierat]

I agree 100%

[InqPers]

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!

[Nfler in reply to InqPers]

You absolutely nailed it

[JohnInTheMiddle]

The comments here are very helpful. For newbies reading this though, it's worthwhile pointing out again that we are not fighting PSA. 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 likely metastatic prostate cancer.

And while PSA is pretty good, it's not perfect. And 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.)

But where timing is concerned it's important to note the sequence of events here.

(1) Testosterone is first. The body makes testosterone as the normal healthy state of affairs of course, and we are trying to suppress it. It can be measured directly in the blood. And testosterone is the signaling molecule that latches onto the surface of prostate cancer cells - and the message is "do your job!" Testosterone is not really "feeding"prostate cancer cells, rather directing them.

(2) Prostate cancer presence and metastases is second. We can't easily measure it directly except for imaging, such as CAT scans or MRIs or PSMA scans. But these are pretty crude measures - and 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 are the only ways to get them.)

(3) PSA is third in the sequence. PSA is produced by happy prostate cancer cells just trying to do their job. (Under normal circumstances PSA's main job is liquefying semen 😳) But now we can see that when PSA shows up again after being very low, that the damage has already been done. And is continuing.

So the message is "what marker should we care about when we're messing around with our testosterone suppression therapies?" Is it testosterone, or PSA? Or something else?

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.

[Mrtewills]

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.

[janebob99]

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!

[Exrunner]

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.

[NecessarilySo]

MO's are overcautious by nature of their profession, imo.

[wolverine11]

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

[Professorgary]

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.

[addicted2cycling in reply to Professorgary]

Mine from Orchiectomy is T≤2.5ng/dL lowest lab has.

[Professorgary in reply to addicted2cycling]

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.

[Golfnerd]

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.

[Nfler in reply to Golfnerd]

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…