I have had 3 unobserved and undiagnosed seizures, and want to add an ARI to my Orgovyx. My conservative MO says I do not need an ARI. My aggressive urologist has prescribed Erleada as the best ARI, and is against Xtandi. I am in a quandary over what to do.
I am afraid of Erleada because "patients who had any prior history of seizure or had conditions that might predispose to seizures were excluded from clinical trials with apalutamide." ema.europa.eu/en/documents/...
and "Erleada is not recommended in patients with a history of seizures… clinical studies... excluded patients with a history of seizure or predisposing factors for seizure." ec.europa.eu/health/documen...
I am in favor of Xtandi because it has less action on the brain: "CNS-related AEs reported with AR inhibitors are thought to be associated with the penetration of the blood–brain barrier (BBB) by these drugs. The AR inhibitors enzalutamide (Xtandi) and apalutamide (Erleada) penetrate the BBB with a brain:plasma ratio of 27% and 62%, respectively, in mice…" ncbi.nlm.nih.gov/pmc/articl...
and because of the UPWARD study: " a multicenter, single-arm, open-label, postmarketing safety study to evaluate the risk of seizure among patients with mCRPC treated with enzalutamide who were at potential increased risk of seizure… These data suggest that enzalutamide did not increase seizure incidence in men with mCRPC and seizure risk factors and is an option for patients with seizure risk factors… suggests that enzalutamide can benefit patients with seizure risk factors…clinicaltrials.gov/study/NC... and jamanetwork.com/journals/ja...
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vintage42
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I wanted Nubeqa for that reason, but that ARI is only FDA- approved in triplet therapy with ADT and Taxotere (docetaxel). I signed the application for the doublet exception that urologist's nurse gave me, but she said it was unlikely to be approved. So I have to assume I will get either Erleada or Xtandi.
(I wonder if the Nubeqa application can make a case for my exception due to seizures. The urologist's pharmacy told me I have no good seizure history, being self-reported with no witnesses, no medical evidence, no diagnosis and no treatment. And yet, I went to the ER the day after two of the events, had CTs and MRIs, and EKGs, and a week at home with a turban wired up to a laptop and a video camera.)
Thanks! Xytiga is rather old compared to Xtandi and Erleada, and is a production inhibitor, not a reception inhibitor like them. But now I see it inhibits production by the cancer itself, is used with Orgovyx, and has no seizure risk. So now I am going to include it in the next discussion with the urologist. (He just got into oncology a year or so ago and Xytiga may be before his time.)
I have a seizure risk and have been on abiraterone for almost 6 years with good results. One factor to think of if you take seizure medication, phenytoin/Dilantin I was told reduced the effectiveness of abiraterone. I had to have a neurologist with me to Keppra before I could start taking it.
I had a seizure three years ago due to what I believe was an impure heart medicine, metroporol. At the time I was taking Xtandi. I stopped the Xtandi because it has caused seizures in rare cases. I have not resumed Xtandi, as my PSA is <0.1. I have also stopped metroporol.
Did you ever have a seizure before you took the Xtandi? After the seizure did you have an EEG, CT or MRI to look for an organic reason ? So you stopped the Xtandi first because it might have been the cause?
No it's the only seizure I've ever had. The cause was not specific, from EEG. Just "presumed overdose". I since found that there was a recall of metoprolol at the time, and as I continued to take the metoprolol from the same batch, I had dizzy spells and noticed one pill had a dark impurity in it (when I cut it in half). So I gradually concluded that was the cause. The seizure was caused by an overdose but it took me months and years to come to my own conclusion which drug was the cause.
I stopped taking Xtandi and blood thinners (aspirin, clopridigril), due to a brain bleed. After stopping Xtandi my PSA has remained <0.1 for two years, (0.06 for past six months.) I had no recurrence of seizure or dizziness in the past two years.
No seizure meds, because I have no official seizure history. I self-reported 2 out of the 3, but no witnesses. After tens of thousand$ of tests, there was no medical evidence, no diagnosis and no treatment.
At your age a neurologist will believe you and put you on a minimal dose. I will just add a little to your fatigue. Which sucks. Most seizures cause is never found to they treat.
Get your ER record to document care of the seizure. Next get a new MO that is more up to date. Then have an application for an exception to get Nubeqa approved due to seizure risk.
The events are all separated by year each. I did not report the first event, but my Primary told me to go the ER when I called her the day after the next two events. Those two ER visits found no evidence or physical reason, nothing on 2 EEGs and 2 CTs. Nothing from in-patient echocardiogram and MRI. Nothing from an in-patient 3-hour EEG, or a 5-day in-home EEG. Medically, I am cleared from seizure risk.
So all those tests could not provoke, or find any reason for, a seizure, and nobody did anything. Except my Primary Care, who thought it could be from my statin crossing my blood-brain barrier. She switched me from Zocor (simvastatin) which does, to Crestor (rosuvastatin) which does not, and so no seizures for a year now.
That is why I am concerned about adding the receptor inhibitors enzalutamide (Xtandi) or apalutamide (Erleada) which penetrate the BBB with a brain:plasma ratio of 27% and 62%, respectively. And why tango65's suggestion of the production inhibitor abiraterone (Zytiga) looks so good.
As for those medicines usually my Doc will recommend taking them with a blood thinner. This will avoid strokes and thrombosis. There is a better way than those horrible second liners and Docetaxel,but as you realize, it can't be mentioned on here despite it saving my life. That's why I mostly just read and hardly post.
For what possible reason can your better treatment "not be mentioned on here." You're only identifying what has worked for you; you are not encouraging anyone else to take that-which-cannot-be-named.
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