Cognitive Effects of long term Lupron

I am pleased to say that after 4-1/2 years I still have active Mets, but fewer than when I began treatment and a recent scan showed lower SUV Uptake than 1 done 2-1/2 years ago

I have pursued an aggressive course of treatment. I went castrate resistant a little over a year ago, but my PSA(max) at the time was 2.0. Enzalutamide has thus far worked spectacularly. I decided (based on medical advice and the writings of Robert Gatenby and Jinsong Zhang) to take the Enzo intermittently. Unlike many intermittent treatments my on/off is determined by my PSA. This is Adaptive Therapy in the true sense — it adapts to what’s going on with me. Some therapies that the Medical Community call adaptive should be more appropriately described as “metronomic” —. On/off is arbitrarily done based on time.

In the past year I only needed to take the Enzo for 36 days (once for 24 days, which took PSA from 2,o to o.2) and again for 12 days (3.3 to 0.6)

If I knew then what I know now I would have done the same with Lupron once I achieved my Nadir of 0.7. I believe if I had done that I might not be castrate resistant right now. My cancer can not be killed, so the strategy is “control”

But after 4-1/2 years I’m feeling significant cognitive issues. I think my overall intelligence is unchanged, but I think slowly and sometime lose the thread in my own head. I often begin speaking sentences but half way through I forget where I was was going. Two years ago I did bipolar androgen therapy for four months. WOW!!!! My brain was and sharp and moving at good speed, The difference was dramatic. I am not happy when a Dr tells me these things happen with age. I know that and even at my best (with T) I notice an age related diminishment in sharpness — but nothing like on Lupron.

So, the good news is that my current life expectancy is better than at initial diagnosis. I don’t ask my ONC for estimates because I know he doesn’t know. In our last meeting I said “it appears likely that I will be alive in three years”. He responded “yes, at least”

My regimen still includes continuous Lupron. Viewing the situation holistically I would say man evolved (or was designed) assuming there would be testosterone. The body is a complex adaptive system. When you change a hormone it will have ripple effects. My cholesterol and sugar are up. I’m continuously anemic, and I know there’s increase cardio risk. Your muscles melt and your risk of falling increases as a result. Working out is essential, but I don’t put on any muscle. I’m struggling to keep what I have. And there are recent reports linking long-term Lupron with dementia.

So, very happy to have a few more years in this world but the side effects, especially the cognitive ones, keep getting worse.

One ONC (not my primary) tells me he has had success taking people off Lupron and controlling the cancer with Daralutamide which, unlike Enzo, does not cross the blood brain barrier.

In the short run I am receiving BAT again. I got a shot one month ago and my PSA went from 0.6 to 3.8. The 3.8 reading was after T was down to castrate levels. I said to my ONC: “how about we do another month and I get a scan”. To my amazement he said yes. I’ve been advised that even if it drives my PSA higher there is not a material long term risk, at least not with this one more month.

As an aside: you want to put on muscle, take testosterone. It’s amazing. I work out maybe a total of 90 minutes a week at best. But each time I get on the weight machines I’m increasing the load. When I did BAT for four months my muscle increase was noticeable. I looked like a guy who works out. Remember: with BAT you’re not just getting your testosterone back, they’re giving you a Supra physiologic amount. It temporarily brings my T to 4 or 5x normal. Hence, the ability to gain muscle. I made the mistake of getting some new pants altered when I was on BAT the first time. I am now 5lbs lighter but they’re still too tight in the waist. Lupron does that.

Meanwhile: I don’t know what to do about this Lupron. As long as I am on BAT I must take it. After that I’m at a loss for what to do and concerned that, although I have been fortunate in my response to treatment I’m concerned that I’m more and more out of it mentally.

All thoughts/experiences/anecdotes welcome

Alephnull,
That's interesting. I think most of us assume that all the side-effects from Lupron are simply from low T, but who knows for sure? All medications have their own inherent side-effects. Who was it who said that a medication without side-effects isn't a medication at all? I think TrailGuy has posted about the other cascades that Lupron effects besides inhibiting the T production cascade. So, it may not be completely surprising that you're having a better experience with the new medication.

Enzalutamide and Apalutamide work by blocking the androgen receptor, so theoretically one could dispense with the Lupron altogether and use one of the lutamides as a monotherapy. By doing so one would just have a ton of circulating T that can't get into the cells. In fact, I've heard of a couple of guys doing just that, but I don't remember if they are members here. I would be reluctant to try it because Enzalutamide (or Apalutamide) don't block Androgen receptor perfectly, so some T always gets in. The Lupron drastically reduces circulating T, so there is less T that can "leak" past the Enzalutamide.

For now I'll stick with the Lupron and Xtandi, but if more reports come in for less side-effects with your new medication, I'll talk to my MO.

I was diagnosed with a fairly aggressive case of PC at age 66 in early 2018, with a Gleason score of 9 and a relatively high PSA of 70. I underwent immediate treatment first with Casodex (to block the use of existing T), followed by Lupron (to block the biosynthesis of T), followed by low-dose brachytherapy, then 7-weeks of beam radiation (IMRT).

My supervising oncologist recommended a total of just TWO treatments with Lupron. The first injection was just before the brachytherapy (a 90-day dosage in August 2018), and the second was just before beam radiation treatments (also a 90-day dosage in November 2018). My pre-diagnosis circulating testosterone level (spring of 2018) averaged 550, and post-treatment (in January 2019), it was just 22. He was adamantly opposed to longer term use(s) of Lupron.

Under Lupron, I had significant and plainly obvious cognitive impairment, in addition to a pattern of vivid, often horrific dreams. Personally speaking, the ADT (Lupron) phase of my treatment, was by FAR, the worst part of my treatments. Was it the Lupron or the effects of Lupron (low T)? Who's to say? But since then, my circulating testosterone has recovered albeit very slowly (it's now 400), my PSA remains at non-detect after three years, and I'm extremely glad that he (my doctor) was opposed to more (longer term) Lupron treatments.

I have been on Lupron since November 2017. I was going to comment on this post but forgot what I was going to say.

Loved the two comments above about ??. Had to do back and read the posts several times in order to finish my comment. Lupron and memory

One thing to keep in mind is the fact that ANYthing that disrupts a man's testosterone level has the potential to cause cognitive issues. When the doctors were studying low T and the impact of TRT, one of the prime symptoms of low T was, as I called it, mind-fog. A loss of cognitive sharpness.

I did not have ADT as treatment for PCa. I had adult-onset hypogonadism, a condition in which my body began shutting down internal testosterone production while I was in my 40's or so. I had to seek treatment or retire from my high-pressure professional career. Back then it was not an easy issue to address, as the doctors were not well-versed in it yet.

I am not trying to derail this thread, as it is an important topic. I am just clarifying that (in my layman's opinion), it is not the drugs themselves that cause the cognitive impairment, it is the (desired) effect of those drugs that cause the issue. Patients depend upon ADT medications to suppress T in order to shrink PCa tumors, etc. So, while many of the other side effects can be mitigated (hot flashes, weight gain, loss of muscle mass, etc.), there is not, to my knowledge, any antidote to the cognitive issues if you happen to be one of those patients susceptible to those side effects. I won't try to start a discussion as to which is worse, PCa or mind-fog, because once you need these meds, you just need them.

I have been on Lupron for 15 years and I am now as dumb as a box of rocks. Well maybe not that bad. Why do they say rolling stone. Most stones don’t roll that well. Our well is holding up despite the dry weather. What was I talking about. I hear The Rolling Stones are going to tour again. I like dogs. I had hot dogs for lunch yesterday. Cats are cool but dogs rule and cats drool. Maybe I got that backwards. What was this thread about?

You crack me up, Todd!