I'm stage 4 with Mets to bones and a couple of lymph nodes.Started with a 6 month lupron shot in October last year, then started Xtandi in January of this year. PSA was 17.3 last month, down from 29 in October last year. This was before I started Xtandi so I'm hoping there will be a dramatic improvement when I do my next test.
My question is, after having read about ADT holidays etc etc....if when on Xtandi, the T level isn't so important due to the actions of the Xtandi in blocking it getting to the cancer cells, why do I need to carry on with Lupron?
Or is there a limit to how much T the Xtandi can handle?
Written by
Scousegit
To view profiles and participate in discussions please or .
The referenced article on the EMBARK study is really great. But I don't understand where there's justification for your claim. It's such a casual comment. And making a mistake based on casual thinking can lead to sad results.
In the EMBARK study they checked if the PSA value got down to 0.2 ng/ml. If yes, the patient got a treatment holiday and intermittent ADT started. Therefore my recommendation was in line with this trial.
I agree that you have to read the "fine print" to find this.
Scousegit began with Xtandi now and asks if he can make a holiday at some time in the future. The only trial with intermittent Xtandi is the EMBARK trial. The patients in this trial had no mets with CT/bone scan but I am sure a lot of them would have had mets with a PSMA PET/CT.
If depends what your objectives are. If you prefer quality of life taking a chance that it may shorten your overall survival to some extend, you can drop Lupron. If you want to maximize the fight against cancer, you have to combine ADT and Xtandi. If you drop Lupron and continue with Xtandi, when do you plan to add Lupron again? If Xtandi does not work anymore, adding Lupron will probably not reduce the PSA value again. Then you should get a chemo. If you drop Lupron you will reduce hot flashes, bone loss and other side effects. But you will get breast enlargement instead.
In the EMBARK trial the breast enlargement was the main side effect of the Xtandi monotherapy. In the combination arm this was not increased over Lupron alone.
Thanks very much for this ! It answers the question that was lingering in me. I really wish those figures were closer but considering it's a survival game we're in, they're certainly nowhere near close enough for me to try going solo with only Xtandi. Again thank you.
My Oncologist told me that Lupron would always be a part of my treatment. He’s a fantastic Doctor, so I have no doubt of my need for it….even though between Docetaxel, Zometa and Lupron, some days are fairly tough. Beats the alternative. Tall_Allen posted a response a few months ago about stopping treatments, and it didn’t sound too rosy for a guy like me at stage IV. He’s always been a source of sound advice and I pay attention to him 😊.
It was too easy to become resistant to Lupron so I hate it. Orgovyx is far better and works intermittently with natural protocols. Plus it's Oral medication.
Not really. The fact that I have used it for 3 years and my PSA is in the 1's with no progression and I truly live my life despite the Scarecrows telling me otherwise. That's the victory.
I've used Lupron for 6.5 years, no ARPI. My PSA finally cracked 2 during Year 6. For 4 years PSA was below 1.
Orgovyx is a good drug, but it hasn't really been around long enough to have an honest comparison with Lupron as far as dropping PSA to low levels or time to castrate resistance.
If one prefers a daily pill, fine. And Orgovyx supposedly allows T to rise faster after discontinuing (meaningless for patients on ADT for life). And maybe a better solution for patients with cardio issues.
There is a surgical solution to remove the sources of testosterone. For those on permanent hormone therapy, it is an option to consider. Doctors never offer it, because a lot of men just won't accept it, and it eliminates the very profitable revenue stream of endless ADT meds.
Not heard of that. But, it could be the risks or side effects from such a surgery are unacceptable. I get what you say about the revenue stream but you may not be giving the whole picture here. Luckily for me medicare advantage plan means low cost lupron and aberoterone or bicalcimide. But thanks for bringing this up. I'll mention it to oncologist.
I’ve been on Firmagon ( Degarellix) since 2015 and Xtandi from 2018 -2024 .
Psa started rising so I quit Xtandi and had 10 rounds of cabazitaxel .During the Xtandi period I took a couple of drugs holidays for a few weeks at a time. Mostly when I went on vacation myself to have a bit more energy. My oncologist told me at the start that it’s ok to lower the dosage to 120 mgr and taking a drugs holiday a couple of times a year to increase quality of life is no problem.
I have an oncologist who is specialized in PC , one of five specialists in PC at the Rotterdam Cancer Institute ( part of Erasmus University) which is one of the leading research institutes in Europe.
I trust him . We always openly discuss treatments, studies and other possibilities.
Good for you. I am sure your oncologist specializing in prostate cancer knows more about the disease and treatment than anyone on this site offering recommendations.
I have seen only one small study that showed resentizing. Maybe 37 participants at 50% non resistance after docetaxel. Anymore info would be great. I’m on on round 5 of 6 for doc and xtandi just let me double up on PSA .17 to .6 in 4 months. So hoping for reset
Being stage 4 your T level is always going to be important, the goal is to maintain it at <20. I have the same dx as you, my PSA at the time of dx was 35. I’ve been on Lupron, Xtandi and Dutasteride for over 10 years now. I’ve been given the opportunity to go on an ADT vacation a few years ago but declined, if it works don’t fix it, my oncologist agreed. I’ll continue to keep my foot on it’s throat.
Thanks for that Ed. I agree with you and what you're doing and I suppose I'll be following the same begrudgingly 🤣. I just had this crazy idea that if Xtandi is doing what it should, I had this dream that even if I went on ADT holiday but carried on with the Xtandi, and allowed the T to go to maybe 150 or 200, the Xtandi would still prevent uptake of T to cancer cells. That's me being a fisherman and thinks like one😀.One thing I'm definitely going to look into though is the E2 patches to alleviate some of the Lupron side effects.
I've been on estradiol for over 5 years now, after an orchiectomy almost 6 years ago. I feel great! Bone density is normal, energy good, no hot flashes. I did develop gyno, as expected, but I'll accept that as a side effect.
Oh! Sorry, it's short for gynecomastia, or breast growth. Common side effect of estradiol therapy. It really bothers some guys, for others it's not a big deal. I'm in the latter group. I wouldn't go without a shirt anywhere anymore, but otherwise they don't bother me.
Oh now I understand. Yeah now I remember reading about some guys going for radiotherapy on those areas to stop the growth, but what's important is that you're happy in your life and it certainly looks like you are so I'm very happy for you.Thanks and good luck.
No, I didn't do anything else. My radiation oncologist was not in favor of preventive radiation treatment. He thought the risk wasn't worth the potential reduction of breast growth. It's not 100% effective. Same thing with tamoxifen. That carries its own side effects. Everything does.
His suggestion was to just do what I need to do, and if enough breast growth happens to be troublesome that I should eventually consider surgery to reduce them.
As it turns out, I did get substantial growth, but it's not bothersome to me. It sure could be for others, even greatly bothersome. It's a personal choice.
My treatment included bicalutamide with Lupron for 4 years. Bicalutamide has similar ARI function as xtandi. There were no holidays off either drug for those four years,
It’s a question for your oncologist. This is speculation but my guess is that your treatment will continue both
Fatigue even though I workout 5 days or week, lots of sleep disruption, hot flushes, brain fog. I suppose that's it. No the oncologist didn't offer Orgovyx but I'm going to ask him about it as it seems that others are having an easier ride with that......
Wassup my bro, yeah I stopped Lupton shots 3 years ago and have been on nilutimide tabs once a day since then. My psa is still undetectable so Great for me, this sits were painful too, and imma LPN the size of that needle still gives me shivers🤣, the art post the shots are too keep your cells in check from creating more testosterone than u need and of course them becoming malignant, it sort of arrest them if u get my meaning, they Are still there but cannot multiply in the positive. Funny we need testosterone just like the other hormones but when the numbers become to great they die and mutate into waste or bodies have difficulty throwing off. Sheesh didn't know I could sum it up like that lol. Anyway njoi ur holiday from the site bro. Love, light and MJ, I say, Michael Jackson that is YEEEAAAHHHH Man in the Mirror
Monotherapy with one of the ‘2nd line’ drugs keeps gaining in popularity, as does vacationing with one of them. But one of the best reasons to work closely with your doctor is to determine both the likelihood of hastening recurrence by doing it and thus allowing the disease to advance. You want to make a as intelligent a guess as possible at what switching would even do for you.
In other words, the heterogeneity of the disease means you don’t want to:
1. Just follow someone’s positive experience (that is obviously attractive) in the hope that you can replicate it.
2. Carry unrealistic expectations about what relief you will get from such a switch. Knowing your baseline testosterone level at diagnosis or as close to that time as possible, is key. It informs you at least somewhat on what to expect. Your age, time on Lupron, and overall health are critical factors also.
Many of the holidays or mono therapy endeavors that men push for don’t achieve anything positive (except placebo effect). For example, if your T was already low to begin with, it’s less likely to rebound fully or even partially. Further, stopping/switching can cause PSA to rise significantly before any possible relief comes. You don’t want that.
A good doctor will be mindful and compassionate about your side effects. However, the same good doctor will only agree with intermittent/monotherapy if the risk-based on YOUR disease and these other factors-is deemed acceptable.
The decision is always yours of course, but help with such navigation is an invaluable part of what he/she is there for.
'Normal' covers a fairly large range, but generally about 200-700 and above for men 60 and older. How much a man feels the loss on ADT obviously depends on what he started with at diagnosis, but even then it's pretty subjective within the normal range.
However, anything much below 200 as a baseline is pretty low. Age, stress, and the negative effects of ADT (fat gain, muscle loss, increased blood pressure, insulin resistance, etc) can serve to keep it lower even after ADT is stopped. This is why exercise- particularly strength training to fight these- is so important.
It's a mistake to expect cessation of ADT alone to produce fat loss, more energy, better mood, all of it-even if and when T comes back. The exception to this is placebo effect of course, which is quite common in this context. This naturally has intrinsic limitations though.
It is also a mistake to plan to begin exercising when one starts feeling better after stopping ADT. The time to work on being fitter and stronger is always now.
Call me old fashioned but I like intermittent Lupron. I mean if I could convince my MO I would take Lupron when my PSA gets up, and by up I mean like above 2. That's just me though. My last PSA was <0.015.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Is Xtandi necessary or even helping me?
difference between Lupron and Eligard
Lupron question
next step more Lupron?
