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 Connection of bexarotene treatment and LBD? 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Connection of bexarotene treatment and LBD?
There are two anecdotal reports on this webpage about the use of bexarotene in two people with a clinical diagnosis of AD:

https://www.inspire.com/groups/alzheime ... mice-of-ad

Both bought the medication at a Canadian pharmacy, paying nearly $2K for 100 capsules, 75 mg each. (The money had to be paid by wire transfer.)

One gentleman reported no success. The woman who started the thread is still in the midst of giving her mother the full bottle of 100 capsules. The woman admits that her family is desperate and this is a last resort.


Sat Jun 02, 2012 4:50 pm
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Location: SF Bay Area (Northern CA)
Post Re: Connection of bexarotene treatment and LBD?
This was published today by Johns Hopkins Medicine as part of their "health (email) alerts":

Bexarotene: A New Use for an Old Drug
Johns Hopkins Medicine Health Alert (johnshopkinshealthalerts.com)

In the past few months, Alzheimer's researchers have made notable progress that could one day lead to improved treatments for Alzheimer's disease or even methods of preventing it. One of the most significant findings is a new use for a 13-year-old cancer drug that may be able to reverse some of Alzheimer's effects.

Tempering this good news is the fact that the finding was a result of experiments performed on genetically engineered mice -- and such results don't always translate into similar success in humans.

"Many such studies fall by the wayside when repeated or tried in humans," says Peter V. Rabins, M.P.H., M.D., director of the Division of Geriatric Psychiatry & Neuropsychiatry at Johns Hopkins. "This does not mean that the science was faulty, though. Rather, biological systems are very complex, and changing one variable, such as going from mouse to human, may lead to unanticipated effects in other systems than the one initially studied."

Bexarotene: A new use for an old drug

It's been tested only in animals, but the cancer drug bexarotene has made the first step toward a new treatment by clearing amyloid plaques from the brains of mice genetically engineered with Alzheimer's disease. (Amyloid plaques are dense deposits of beta-amyloid, pieces of damaged nerve cells and other proteins found in the brains of people with Alzheimer's disease.) Whether bexarotene can have the same effect on humans remains to be seen.

Neuroscientists at Case Western Reserve University School of Medicine report in the journal Science that bexarotene reversed cognitive, pathological and sensory deficits caused by Alzheimer's disease in mice. Bexarotene began clearing beta-amyloid from the mice's brains within just six hours of being administered -- an unprecedented speed. In 24 hours, it reduced beta-amyloid by 25 percent. Within 72 hours of treatment, more than 50 percent of amyloid plaques were cleared and the mice showed significant cognitive improvement. However, since mice don't have tangles (another kind of protein buildup), scientists don't know whether the drug would clear them from the brain as well.

Bexarotene was approved 13 years ago under the brand name Targretin to treat skin problems associated with T-cell cutaneous lymphoma. Thus, the drug has already been deemed safe and approved by the Food and Drug Administration, which may help speed it along the path to early-stage clinical trials in humans. Still, previous trials based on results from animal research have often proved disappointing.


Mon Jun 04, 2012 1:15 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: Connection of bexarotene treatment and LBD?
Here are the latest updates by the lady who is trying this med, using a Canadian pharmacy, on her mother with Alzheimers. It is from the same site noted earlier in this thread by Robin if you want to read the whole thing. Items mentioned at the bottom of this post when KEMM spoke with someone working on this research are important information that someone trying this on their own should know and points out why trying stuff like this on your own can be dangerous.


Skin Cancer Drug Bexarotene cured mice of AD

• By KEMM • April 11, 2012 at 10:13 am • 95 replies
Has anyone heard about this? A team at Case Western Reserve university used the drug Bexarotene and cured mice of AD. It's a very exciting study. They are in the midst of a Human trial right now and next there will be a larger trial performed by the NIH. Since Bexarotene is an approved drugs in humans for Skin Cancer it's on the market and Doctors can prescribe it as an "off-label" drug. Meaning prescribing it for a disease that it hasn't been tested for.
Basically you have to search for a doctor who will take a LARGE RISK and prescribe for you. It puts them at risk legally. VERY LUCKILY we have a doctor who is doing it for my Mom. We will be getting the drug from Canada since it isn't covered by insurance (since it's "off-label) and it will be very expensive here in America. However you can get it over an on-line pharmacy from Canada at a reduced price.
Keep in mind that this study was done in MICE ONLY. There is no proof right now that it cures humans.. or what it does at all in humans. However in my opinion when your loved one is disappearing you try anything.

KEMM's later posts take you through her experiences of starting her mother on this med at 1 pill a day, not being able to get more to continue without a break, then resuming med when it finally arrived from Canada.

A couple of days ago:
My Mother has been back on the medication. 2 pills a day now for 2 weeks. There has been no improvement. Actually there has been more decline. Unsure what the reason may be. Taking her to the Doctor tomorrow for some testing. Will continue to update.

Today:
As I said in my last post my Mother has become worse. I was VERY concerned that it was because of the Bexarotene. Someone had mentioned in a prior post that AD patients with APOE4 could get worse on this drug and that it was in the study. I read the study and I didn't find that information. SO I called Case Western Reserve University ( as I have many times before with no answer) and today I was very lucky.

I spoke with someone involved with the study who told me that there were no findings in the Mouse study of any worsening on Bexarotene. This made me feel much better. But then she told me that they are not hopeful for Late Stage Patients using this drug. Because once the neurons die, that's it. After they finish with the regular trial they may have a "Compassionate Use Trial" for patients with end stage AD to see if there is any improvement at all. This won't be for a Year. She also said that the "Proof of Principal" study will begin in 50 days. (I had thought they started this already) This will tell if the drug passes through the human blood brain barrier.

I asked her what she thought about OFF-LABEL use. She said they are very worried about this and don't want anyone doing this. They are worried that people are taking this into their own hands and don't have enough information (EITHER DO THEY YET) on how to administer the drug, Dosing or even if it works in humans yet. And then people will start talking about how the drug doesn't work and when it comes time for a large scale Clinical Trial they won't get one because there had already been so much talk about it not working. I told her I understood their concern but people are desperate. She understood this. She also said that although they DON'T know what the right Dosing is yet- they do know that the Drug should not be given every day. There needs to be a rest period between dosing.
She is going to send me some more information on the study in layman's terms. I will post what she sends me.

That is all KEMM said today.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat Jun 23, 2012 5:00 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Post Re: Connection of bexarotene treatment and LBD?
Pat,
Thanks for the important update from KEMM. You might check that group's privacy policy to see if there are any rules about copying posts and putting them elsewhere.
Robin


Sun Jun 24, 2012 11:25 am
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Post Re: Connection of bexarotene treatment and LBD?
Robin, it was listed as public info.
Pat

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Jun 24, 2012 3:05 pm
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Post Re: Connection of bexarotene treatment and LBD?
Pat, you don't copy our posts anywhere else, do you?

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jun 24, 2012 4:05 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: Connection of bexarotene treatment and LBD?
No. I have not, do not, will not.

This is posted in a place where anyone can join the conversation. It is listed as a public post. There is no screening like what happens here on the LBDA forum.

Please be at peace about this.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Jun 24, 2012 4:27 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Connection of bexarotene treatment and LBD?
Well, posts here are public too. You don't have to be a member to read.


Sun Jun 24, 2012 4:39 pm
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Post Re: Connection of bexarotene treatment and LBD?
Please stop worrying about this. We have enough to worry about.
Love to all,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Jun 24, 2012 5:22 pm
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Post Re: Connection of bexarotene treatment and LBD?
We have been down this road before and just as a reminder here for the forum's, Robin is correct and the forums are public.

viewtopic.php?f=10&t=3170
The Forums are not confidential nor does LBDA policy state that confidentiality or privacy is guaranteed

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Irene Selak


Sun Jun 24, 2012 5:50 pm
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