Colleen, thank you for reaching out to me. My husband fired his oncologist and is still looking for a new one. We met remotely with a new one last week. I wasn’t impressed when she asked me how I knew he had a seizure. I’ve never seen a gran mal seizure before, and I thought he was dieing.
I want to find something definitive to give to the doctors that states “yes, abiraterone can cause seizures.” They seem to discount it when I say I found it on the Mayo Clinic website.
My husband stopped the abiraterone. His previous oncologist didn’t like that we did our research and asked lots of questions. We try hard to research the legitimate sources. The new oncologist said that now that he is on a seizure prevention drug, he should have no problem taking it. Should is not an acceptable response at this point. She also said that if he didn’t go back on Abiraterone his only choice was chemotherapy.
He is working with a neurologist and having new scans done for both the brain and the cancer (ordered by the new oncologist). We are waiting for the new scans to be completed before making any new decisions on doctors. He had the original oncologist for several years, so it’s not like we jump around from one doctor to another.
At this point I just want a doctor to acknowledge a seizure could have been caused by the treatment.