My guy is Gleason 9, BRCA2, zytiga, prednisone and lupron on STAMPEDE protocol for just about over 2 years. PSA non-detectable. He has a local medical oncologist, and is waiting to hear back for an initial appointment with a prostate cancer specialist at University of Michigan. Meanwhile, he meets with his local oncologist on Monday. Has had significant cognitive and emotional side effects due to the lupron, mostly for the first year, subsiding, then increasing again this last 4 month shot. Today had a short seizure - never had one before.
Has lupron and/or abiraterone caused seizures in anyone on this Board? Obviously I'm concerned about possible brain met(s), but hoping getting off the lupron and/or abiraterone may turn out to be what is needed instead.
Thx. in advance.
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lss65
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It's known to happen with Lupron, especially if there is a previous history. Never heard it with abiraterone, sometimes with enzalutamide. I don't know if the new Orgovyx tablets might be better, but it may be worth trying.
TA, is that side effect limited to Lupron, or is it found in other leuprolides too (e.g., Eligard)? I havent had any seizures, but have experienced other incidents which are probably unrelated (severe leg cramps and spontaneous nose bleeds) but weird nonetheless.
As soon as I started Lupron, I began to have memory issues, maybe about 4 years ago, Shortly, I began with what I didn't know at that time that it was seizures. The symptoms were different than what one thinks about seizures when one shakes all over and stuff. Those that saw me having them described them as all of a sudden becoming sort of spaced out for a few minutes. When I would come to, I didn't remember a thing.
I was referred to a neurosurgeon and after a series of tests, It was determined that, indeed they wee seizures. My cognitive issues got progressively worse and even if my cancer was improving, I chose to stop ADT, that by time included Lupron and Zytiga. It has now been 9 months since I stopped ADT and I have gained part of my lost memory and I swear, I'll never go back to Lupron.
To everyone who responded, thank you. He is looking into the Orgovyx option. I am going to forward him the link to this page, as he knows I am more on top of the medical end at this point than he is because of the trajectory we took over the past 2 months. Does anyone know if an orchiectomy is considered as effective as the lupron and other drugs used for chemical castration? That is also on the table as an option. As well as trying 1 month instead of multi-month lupron shots, and additionally adding in an estrogen patch to combat the estrogen mediated cognitive changes, which I doubt goes to neurological/seizure type issues. The past 2 months have been a roller coaster of side effects from the lupron.
There is always gong to be side effects from any drugs that we taken from now to the end, that is the nature of the beast we fight. Also, it is very important to remember that most men with advanced prostate cancer are older!!!! and thus our bodies are breaking down, even without PC, so one should be careful in blaming the drugs as causing other ailments. That said, our group generated a long list of side effects that the manufacturer has still NOT noted in what is now a very very old monogram of Lupron-this is criminal in my view but it is the truth of where the drug firms stand in terms of ensuring that the present ALL of the side effects etc. relating to their drug's usage.
I am also wondering again, why more men are not doing intermittent hormone therapy thus giving their bodies a chance to regroup as well as to suffer less side effects.
The withdrawal time from Lupron, in terms of a 'half-life' is lengthy, so by the time the recovery occurs, the PSA might be back too soon to enjoy the benefits), but it could be worth a try for 'eligible;' types who are staged accordingly.
I had a miserable time from Eligard - essentially the same as Lupron about 2 1/2 years ago when I quit ADT outright because I was suicidal AND even with a recent BCR, will not be taking that 'S%&T' again - there has to be an alternative that is LESS damaging and should be tried by prescribing oncologists - it's criminal IMO to keep pushing that CRAP on VICTIMS of Big Pharma / SOC .....
I'm starting Bicalutamide monotherapy TODAY and hope that I'll be one of the 'luckier' men who can ride that train and / or cycle on it for years - time will tell if I can do it ......
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