hi this is my first time using this.
im just wondering if anyone has heard of paraneoplastic cerebellar degeneration or know someone who has it.
My mother was diagnosed 14th months ago with the disease after initially making the wrong diagnosis of a brain tumour. she suffered from ovarian cancer the year before and was in remission when the neurological symptoms started she had steroid treatment, immunoglobulins, plasma replacement and i cant think what else she is now on cyclophosphamide and chemo for the metastic disease they found following the diagnosis of the PCD. i kinda understand what caused the disease but i am wondering about how it affects other people, she has lost her balance, has nausea, tremors etc that goes with it and is completely wheelchair.
im just wondering if anyone knows what we can expect next. the chemo is holding the cancer at bay actually one tumour has shrunk and the other disappeared. i know my mother wont walk again but i want to know if the chemo can cure the cancer can we hope that she will now live with the paraneoplastic disease or does that kill you. im a nurse myslef and have been researching it a bit when i fell able to but cant find a direct answer. i just want to know if she will live as when we heard the chemo was workin we all got excited and i hope that she can but does anyone know. or is anyone as *****d off as me about the disease and want to talk about it. i think its the worst thing iv seen and i see alot none of my collegues have heard of it and in Ireland where were from dont think there are many cases. hope to hear from someone tanx
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