Discussions By Condition: Brain conditions

Paraneoplastic cerebullar degeneration

Posted In: Brain conditions 1 Replies
  • Posted By: marakie
  • February 27, 2010
  • 03:30 PM

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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  • Hi marakie-My mom is also going through this and has been since October 2012. Here's her story: She has gone through several rounds of tests (multiple times) for every condition known to man, only to find out that her diagnosis is paraneoplastic cerebellar degeneration.Starting around the end of October 2012, mom began to notice a little lack of control of one of her legs. The time between October 2012 and January 2013, her symptoms worsened as she has lost her ability to walk without a walker or wheelchair, her speech was impacted and she had some double vision and eye coordination issues. These, among other symptoms appeared to be caused by antibodies that her body was and still is creating to fight a yet unidentified return of cancer. In very rare cases this happens and until the cancer presents itself, the antibodies attack the cerebellum, which is the area of the brain that controls the functions being impacted. The treatment is to go after the cancer but that can't start until it presents itself ....In the interim, the antibodies will continue to cause degradation so you have to try and counteract those. The doctors started her treatment with three rounds of IVIG treatments, in the hospital; one in January, March, and May. Although the doctors were hopeful that these three treatments would improve her symptoms, they had no effect. We had her doing speech, physical, and occupational therapy to try to improve her status but, once again, therapy did nothing. The doctors at Wake Forest University suggested that we try plasmapharesis so, the first week in July was spent in the hospital having the first of two sets of plasmapharesis, hoping we would notice a big difference in her day-to-day abilities. So far, nothing has improved and to me, she has gotten worse. We are slated to start another round of plasmapharesis in early September 2013 but, I am not very hopeful since the last treatment did absolutely nothing. I have read many articles online and did some of my own research but since this is such a rare condition, I wanted to find other people who either are going through or know someone who is going through to talk with. I just want my mom back to talk to. I created a page on facebook to keep all of our friends and family updated on her status. Please message me if you want the link to the page to track her progress. She has been in pretty good spririts through all of this considering everything that is going on. She has difficulty communicating with us to the point where I have to put my ear right up to her mouth to understand her, she still is not able to function normally (i.e. not able to walk, stand, talk, lost all control of fine motor coordination, among lots of other day-to-day things that most of us take for granted. Again, she is facing this head on with all the strength and faith we all know she has.
    LEAHPRC2 4 Replies
    • August 28, 2013
    • 07:25 PM
    • 0
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