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Not Getting Answers....Turning To You

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Caregiver
Caregiver
Debra1231
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Subject: Not Getting Answers....Turning to You
Date: 02/22/2008

My mom has been fighting RCC since Feb 2006, she had her left kidney out.  Then it spread to right lung, was put on a Sutent trial.  Was taken off that because cancer spread to lymph, right lung, left adrenal gland and right rib.  Was put on RAD001 trial in July of 2007.  Everything has been stable all this time with no growth except for loss of apetite.  She is on an appetite stimulant, zanax, anti nausea medication and oxycodine for pain. My question is that every day about 3:00 she becomes so disorientated that she can hardly functon.  She needs help to eat, go to the bathroom and she shakes and she can not remember things from one moment to the next.  Then she wakes up the next morning refreshed, and can only recall certain things.  Can anyone tell me if tis is normal in RCC patients of is there something else going on that we are not being told.  She had a MRI and CT scan a week ago and still stable.  Any information will be helpful. 

Thanx Debara

Patient
Patient
cayenneblue
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Subject: RE: Not Getting Answers....Turning to You
Date: 02/26/2008

Hi-

 

I'm not sure if this is the same thing, or not, but my dad recently experienced the same type of thing after his surgery.  He had surgery on Tuesday of this past week, and on Wednesday and Thursday night he was very agitated, disoriented and confused. He didn't know who we were at one point, and became very paranoid. We were so concerned that he had had a stroke, or that the cancer had spread to his brain. (his tumor was very large).

According to the doctors, he was experiencing something called "sundowners syndrome" - a syndrome that affects older patients as nighttime falls. They become confused and disoriented, talking to people that aren't there, and a general confusion as to what is happening. It usually gets better in the morning.

 Look it up and see what you think. I think they recommend a small light be on during the night, which might help. They gave him a anti-psychotic drug called haldon, which worked while it was in his system. I'm not sure if you'd want to use it all the time though, since there seems to be some concern about it's safety when large doses are given.

 Good luck - I certainly know how stressful and upsetting this is!

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