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 promising drug, hopeful for lewy body and pk!!!!!! 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post promising drug, hopeful for lewy body and pk!!!!!!
just saw this and heres hoping it will be the one!!!

since its already approved for leukemia.. maybe it will be put on the fast track or priority track and we can get it with in 45 days to 6 months....

or wonder if our docs will give it if we sign soemthing?? any one know any more about it, than in the article??

wouldn't this be a blessing... wonder if it will stop it or bring folks all the way back?? wow..

http://www.foxnews.com/health/2013/05/0 ... p=trending
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat May 11, 2013 8:51 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Sounds very exciting! :P

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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.


Sat May 11, 2013 11:03 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Very excited about his. Have asked the Neurologist about it and when can we get it. Sometimes they will write the script for it even if not approeved yet for O=LBD. Wow am I ever excited!


Tue May 14, 2013 6:38 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
The article describes LBD as "a condition in which patients develop Alzheimer’s and Parkinson’s simultaneously." News to me! It would be nice if reports like this would get it right.


Tue May 14, 2013 11:08 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Hi, All!

Yes, I got excited, too. I spent all day yesterday exchanging emails with John's neurologist and Dr. Moussa at Georgetown.

Once John's neurologist, who is conservative about all these clinical trials, said that he did think this one was worth the risk, we decided to sign up for the registry of participants. They are collecting names now of people who want to participate. Dr. Scott Turner (who gets a big thumbs up from John's neurologist) will be in charge of the actual trial.

Here is why I made this choice:

1. It looks like the most promising option I have researched so far after looking for 6 years, because it attacks both the synuclein and the tau proteins and clears them.
2. It can break through the blood brain barrier.
3. It is already FDA approved, hence many dangers have already been screened for.
4. The dosage is very small, which seems to fit the LBD treatment model well.

Here are my concerns:

1. What happens in mice often does not happen in men.
2. It may take a long time to find the money to fund it.
3. I am not aware of the time frame and am concerned it may be too long for John.

So, I am praying for FAST tracking of this at every level. Please pray with me!

If anyone wants to join the registry, here is Dr. Turner's email address:
rst36@georgetown.edu

I am sharing the article on Facebook and spreading the word every way I know how. The more people know about this, the faster it may happen for all of us!

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]


Tue May 14, 2013 10:27 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Pat,
I was reading your concerns, you mentioned it might be too long for John to benefit but look at it this way too, All those yrs ago when my husband was DX'ed and as so many other LO's of others here, there was nothing except "Take this and call me ".
At least your John is early enough for the possibility of it maybe helping him and so many others as I believe there are many who haven't even been DX'ed yet !

Good Luck !

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Irene Selak


Wed May 15, 2013 10:41 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
i think we all have our fingers and toes crossed...

will be interested to see if any doc will just hand out the meds since the medication is already approved...

pat can you live in a different state and still be in the study and have a local doc provide the exams etc???

talked to hubby about it and i was surprised, he said he'd do it..

wow wouldn't it be nice to get our loved ones back... again as far as timing.. i heard it could be very quick!!

if any one is on facebook, there is another group in there, that i posted this info on and they too, are talking to their own docs.. the group is called lewy body dementia carers.. just go to the page and like it and you're in... the posts stay there and is not shared thru out fb..

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed May 15, 2013 11:19 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Thanks, Irene.

Cindy, it is a multi-site clinical trial. I do not have those details, but you can email Dr. Scott Turner at the email address in my post and ask him.

They are looking for participants now, so put your husband's name in if he said yes and you feel it is right for you both.

I am very interested in off-label prescriptions options as well. My local pharmacist researched it and said they could compound it here (for the very small dosage involved---only 1% of what leukemia patients receive!) if I can get a prescription for it to him. Problem is that one company owns it and the patent is held by those doing the testing for LBD and MSA. So they may restrict its usage for liability reasons until clinical tests are completed. That is why I am praying for FAST tracking.

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]


Wed May 15, 2013 1:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Pat, that is very exciting--your husband possibly taking part in clinical trials! Hope he gets selected and that we can share the results with you.

My husband is in late stage LBD, losing weight, etc. I wonder if they would consider someone in his condition. He really has nothing to lose at this point.

_________________
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.


Wed May 15, 2013 11:04 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Oh Pat, Mockturtle, I will be watching these efforts. What a Glorious Day that would be if this helps. Dorthea

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Wed May 15, 2013 11:16 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Oh, Pat, I so wish he could.

But they are saying they are looking for mild to moderate stage LBD patients.

The sooner they get many to register, the better in terms of funding possibilities and timing of the trial. So they need us to be courageous and do this.

The beauty of this drug is that it is already FDA approved for another disease and will be 1/100 (1%) of the dosage that is already approved for leukemia. Side effects do not look scary to me on this drug even at the heavy dosage for leukemia treatment. It just seems to fit every concern I have about drug testing in 6 years of hunting. And it finally is addressing LBD!!!!

Everybody please spread the word.

_________________
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]


Wed May 15, 2013 11:17 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Cindy, after your post I emailed Dr. Scott Turner again and he assured me that there would be a site nearer to us in NC assuming they can get funding and get things set up. With a multi-site study, they should scatter them all over the place. I do not know if they plan to keep it in the US or go international with it.

If you opt to email him and let him know you are considering joining the registry, he will let you know if there is a likely site closer to you. Sometimes they pay for travel expenses in these studies if that is needed--not sure in this case.

_________________
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]


Wed May 15, 2013 11:23 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Thank you pat for the info .I will email him....would you mind if I put that info in the fb lewy site for them to sign up too?

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Thu May 16, 2013 7:20 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
Please do!!

The more folks who know and take action, the better.

Thanks!

_________________
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]


Thu May 16, 2013 10:56 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: promising drug, hopeful for lewy body and pk!!!!!!
pat, we sent in the email to dr turner, for more infor on the research and trial...

and i posted on fb in the lewy body carers area and in the main area.. asking folks to share with any and all of their friends... i also asked that every on the lb area to share and a few have in other related groups!!.. also gave you credit for the wonderful book and the email addy .. hope that is ok!!((()))
thanks!!!
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Thu May 16, 2013 5:17 pm
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