Bexarotene Off-Label Use

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867trup
New Member


Date Joined May 2012
Total Posts : 2
   Posted 5/13/2012 4:11 AM (GMT -6)   
Found this on the web and like to share...

Bexarotene Off-Label Use

"Hi All!

I know you are all anxious for an update. DON'T worry.. I have no intentions of forgetting about you! Presently we are giving my mother 2 pills a day. Each pill as I mentioned above is 75mg. It has been 8 days since we increased her from 1 pill a day to 2 pills a day. Unfortunately myself and my children have been sick and because of my Mother's low immune system I haven't had her at my house this past week, until today. So I have had to rely on my Father's descriptions on how she is doing.
So this past week there were a few things that made my Father and I a bit hopeful. One morning she made coffee without instruction (my father said the coffee was bad, but she made it), she also made scrambled eggs for herself without instruction. These are not things she does normally. She also called me on the phone- she had to ask my father for my phone # and she actually hung up after only 2 rings but I can't remember the last time she called me- so that peaked my interest. As I said, she is at my house now and about an hour ago I told her I was going out for dinner later on. Then just a few minutes ago she remembered that I had plans to go out tonight. All of these things are giving me some hope.

At the start of this process I asked her to draw a picture of a clock with the hands at 10 past 11 o'clock (found this test on an AD website). She drew a circle and from the middle of the circle she drew out 12 lines. I guess her brain was telling her that there was 12 of something but she couldn't place the numbers. Last week I had her draw it again. She drew almost the same clock- but this time added something... she actually wrote the words"10 minutes past 11 o'clock" inside the clock. To me it seemed like a bit of an improvement because she completed 2 parts- the circle and the time. Although it was wrong- she remembered a second step.

Overall though, she is still very confused.
Next week my Mother will be with me so I will be able to have a better description of her status for you."

867trup
New Member


Date Joined May 2012
Total Posts : 2
   Posted 5/14/2012 5:16 AM (GMT -6)   

socrandreas
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/19/2012 9:58 PM (GMT -6)   
Hi

What's the update with your mother since May. I haven't seen any recent posts.

My mother has Alzheimer's and it's urgent that I find out.

I dearly hope all is well.

Thanks,

Socrandreas

Barbson
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/17/2012 10:54 AM (GMT -6)   
Yes, I too would like an update on how your mother is doing on the Bexarotene.  Also, how did you find a doctor willing to provide it off label?  I have not been able to find one yet in California for my mother.
 
thanks for your help.
 
Barbson
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