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Bexarotene Off-Label Use
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jamesbbb posted:
Just found this,

"Hi All![br>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. [br>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. [br>[br>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. [br>[br>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."
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davedsel57 responded:
Hello jamesbbb.

Where did you find this and who originally posted this? Is this about your parents, and your mother has been diagnosed with AD? Sorry, but the way you posted all this is rather confusing to me. Any help you can give to clarify what you are trying to say would be greatly appreciated.

I understand how difficult it is to deal with a parent who has been diagnosed with Alzheimer's Disease. Please continue to update us and share with us if this is what you are dealing with.

Praying you can find the answers you need soon.
Click on my user name or avatar picture to read my story.

Blessings, Dave
 
 
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Judith L London, PhD responded:
Hi jamesbbb,

Bexacarotene needs to be researched with a double-blind study to determine how effective it really is in Alzheimer's. It It would be great if your mother could be part of such a study. It is the best way to determine whether or not the bexarotene is contibuting to the hopeful changes or is it a placebo effect - Often people will improve with a new medication even if it is a placebo.

Establishing the correct dose without causing unwanted side effects is always the goal.

I am glad to see that your mother seems better whatever the reason.

Do keep us posted,

Judy
 
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jamesbbb replied to Judith L London, PhD's response:
Hi Judy,

I understand your caution, but no one of us can wait 10-15 years to determinate if bexarotene will works or not.
We have not much to lose, with people affected with AD, in trying a drug that has been approved from FDA more than 9 years ago of which we all know that it doesn't have dangerous side effects, but as I said caution is important.
In this case (she is not my mother) I guess she is not aware of taking bexarotene so I don't think we can talk of placebo effect.

We are all here to see what is gonna be, we need a hope and maybe this is it or maybe not, but... why not try

Thanks for your reply

For anyone who want to keep updated please follow the link above
 
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Judith L London, PhD replied to jamesbbb's response:
Hi jamesbbb,

You are right about how long the research process takes.

I am happy that there is an improvement, Hopefully, if the physician is chronicling this information, the physician could report the positive effects in the medical literature so that others may benefit.

I hope other family members keep a record just the way you have for the physician and others to see.

Thanks for keeping us informed,

Judy
 
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jlmjsc replied to jamesbbb's response:
I am anxious to know how this is going. How is your mother doing now and how long has she been on the med? Has she had any side effects? How did you decide on the dosage? Do you know of others who have tried or are trying this medicine?

Thanks so much for your help. A relative has AD, and we are desperate for something to help and are considering trying this.

jlmjsc
 
 
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eagle2975ataoldotcom replied to jamesbbb's response:
Hi jamesbbb,
I just found your posts and am extremely grateful that you are posting your experience. How is she doing now?

Do you mind me asking if it was her general practitioner that was willing to allow her to try Bexarotene off label or did she go to an AD specialist? We are looking into trying the drug on my mother and one of the hurdles to overcome is to find a doctor willing to try prescribe it.

I appreciate any additional help you could give me! Thanks!
 
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jamesbbb replied to eagle2975ataoldotcom's response:
As I said already she is not my relative I am only one of the forum reader interested in Bexarotene as many other are
if you want to see what happening go to the following link

http://www.inspire.com/groups/alzheimers-foundation-of-america/discussion/skin-cancer-drug-bexarotene-cured-mice-of-ad/?page=last#replies
 
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examine replied to jamesbbb's response:
when can we expect an update on this subject r
 
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examine responded:
what is the latest update on bexarotene
 
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cjh1203 replied to examine's response:
The information about this came from a link provided above by jamesbbb. You might try that and see if there are any updates.

Carol
 
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rand11 responded:
jamesbbb, any new updates on your mothers trial of bexarotene?
 
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cjh1203 replied to rand11's response:
Rand11, this was not his mother. He had copied someone else's post from an online community he belonged to. If you click on the link in the third post, above, you might be able to find out more.

Carol


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