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Hi Ray,
Don Reed's book sounds like a great place to start.
Here's an article from Georgetown University -- nor sure if I posted it
before.
https://gumc.georgetown.edu/news/Cancer-Drug-Improved-Cognition-and-Motor-Skills-in-Small-Parkinsons-Clinical-Trial
Kathleen
On 8 November 2015 at 02:39, Rayilyn Brown <[log in to unmask]> wrote:
> thanks Kathleen
>
> Don Reed's book Stem Cell Battles - Prop 71 and Beyond is supposed to
> be about how folks can best battle for progress in disease research, book
> comes out in December and I'm hoping for pointers on strategies for
> organizing. lets start with Don's book
>
> I think it should be noted that while a cancer drug may help PD, a PD
> drug might help another disease or condition and there is no reason why a
> leukemia patient should have to pay over $10,000 a month to stay alive.
>
> Medical research and affordable meds are good and worthy causes not just
> for Parkinson's.
>
> And yes, Nic, it is very difficult for me to "type" - have tocorrecct
> every other word, but I can barely speakk at all,,sooo computer is a
> help
> Lets organize!!!!
>
> -----Original Message----- From: Kathleen Cochran
> Sent: Saturday, November 07, 2015 10:20 AM
> To: [log in to unmask]
> Subject: Re: Ray's questions #1, #2, #3
>
> Ray asked:
>
> 1. Who is doing further trials? when and where?
>
> THE FOLLOWING TEXT IS EXCERPTED FROM A FORBES MAGAZINE ARTICLE BY EMILY
> MULLIN. I URGE EVERYONE TO READ THIS EXCERPT. IF YOU JUST WANT THE SHORT
> ANSWER TO RAY'S QUESTION #1, SCROLL TO THE END OF THE EXCERPT.
>
> THE ENTIRE ARTICLE (VERY WORTHWHILE) CAN BE FOUND AT:
>
> http://www.forbes.com/sites/emilymullin/2015/10/21/could-a-cancer-drug-reverse-parkinsons-disease/
>
> NOW HERE'S THE EXCERPT:
>
> ...The study [of nilotibid, at Georgetown] represents the first time a
> therapy appears to reverse cognitive and motor decline in patients with
> Parkinson’s disease, according to the researchers. “But it is critical to
> conduct larger and more comprehensive studies before determining the drug’s
> true impact,” said study author Dr. Fernando Pagan, an associate professor
> of neurology at Georgetown University, in a statement.
>
> The trial builds on animal studies conducted by Georgetown University
> assistant professor of neurology Dr. Charbel Moussa. In a study previously
> published in *Human Molecular Genetics*
> <
> http://hmg.oxfordjournals.org/content/early/2013/05/09/hmg.ddt192.abstract
> >,
>
> Moussa found that nilotinib prevented the buildup of toxic proteins
> associated with Parkinson’s in the brains of mice.
>
> The leukemia drug Tasigna (nilotinib) improved cognition and motor
> functions in patients with Parkinson’s disease in a small clinical trial.
>
> Nilotinib is approved to treat leukemia, and it works by forcing cancer
> cells into autophagy – a biological process that leads to the death of
> tumor cells in cancer. But in Parkinson’s patients, low levels may be
> enough to turn on just enough autophagy, or cell degradation, in neurons
> that the cells would clear malfunctioning proteins and nothing else. In
> other words, the drug seems to work by switching on the garbage disposal
> machinery inside neurons to clear toxic proteins from the cell, Moussa
> speculates.
>
> The clinical trial included 12 volunteers with Parkinson’s disease or a
> similar condition called dementia with Lewy bodies, the second most common
> type of progressive dementia after Alzheimer’s disease. Participants
> received daily doses of nilotinib in 150 mg and 300 mg doses – much smaller
> than what’s used to treat cancer, which is up to 800 mg daily. While the
> study’s primary objective was to test safety, 10 patients demonstrated what
> drug developers call “meaningful clinical improvements.” Researchers also
> reported that the drug was well tolerated with no serious side effects.
>
> It appears that in smaller doses once a day, nilotinib turns on autophagy
> for about four to eight hours – long enough to clean out the cells without
> causing cell death. Then proteins that build up again will be cleared when
> the drug is given again the next day,' Moussa said in a statement.
>
> While the results seem wildly promising, they should be interpreted with
> caution; the researchers did not study a control group for comparison.
> Also, nilotinib was not compared with other medications used to treat
> Parkinson’s in the study.
>
> Even if the drug is found effective in further studies, the cost could be
> out of reach for many patients. For leukemia patients taking nilotinib, the
> drug costs about $10,360 a month.
>
> "The Georgetown researchers are now planning larger clinical trials with
> nilotinib for patients with Parkinson’s and other
> neurodegenerative diseases, including Alzheimer’s disease, which are slated
> to begin in 2016....
> Ray asked:
> 2. What is opinion of neuros?
>
> My neuro referred to the statement by the National Parkinson Foundation
> that most of us probably have seen (see http://bit.ly/NPF-nilotinib),
> which
> he thinks is a reasonable position to take right now. He thinks that at
> this point, to prescribe nilotinib off label for PD would be "unwise." He
> speaks of the smallness of the study, the fact that it was designed to
> study safety only, and the lack of a placebo group.
>
> Core message: Wait and see. Anyone else have a response from their neuro?
>
> Ray asked:
> 3. How willing is PD community to fight for progress?
> and outrageous drug costs/note that drug developer Dr. Druker’s
> research paid for by Leukemia and Lymphoma Society, not Novartis, drug
> producer
>
> Obviously, each of us has to assess our priorities and gauge our limits as
> to how willing and able we are to take an active role. And getting
> organized is a challenge. But given the stakes and the promising nature of
> this treatment, it seems to me that if there ever were a time to push
> ourselves, it's now.
>
> If anyone has thoughts or suggestions on what this might look like and how
> we might proceed, please speak up. Let's see if, together, we can generate
> some traction.
>
> Based on my almost 20 years with this disease, the time to start fighting
> for this research and for affordable treatments is now...or, more likely,
> yesterday.
>
> Kathleen
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: mailto:
> [log in to unmask]
> In the body of the message put: signoff parkinsn
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: mailto:
> [log in to unmask]
> In the body of the message put: signoff parkinsn
>
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
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2000, Week 2 April 2000, Week 1 March 2000, Week 5 March 2000, Week 4 March 2000, Week 3 March 2000, Week 2 March 2000, Week 1 February 2000, Week 5 February 2000, Week 4 February 2000, Week 3 February 2000, Week 2 February 2000, Week 1 January 2000, Week 5 January 2000, Week 4 January 2000, Week 3 January 2000, Week 2 January 2000, Week 1 December 1999, Week 5 December 1999, Week 4 December 1999, Week 3 December 1999, Week 2 December 1999, Week 1 November 1999, Week 5 November 1999, Week 4 November 1999, Week 3 November 1999, Week 2 November 1999, Week 1 October 1999, Week 5 October 1999, Week 4 October 1999, Week 3 October 1999, Week 2 October 1999, Week 1 September 1999, Week 5 September 1999, Week 4 September 1999, Week 3 September 1999, Week 2 September 1999, Week 1 August 1999, Week 5 August 1999, Week 4 August 1999, Week 3 August 1999, Week 2 August 1999, Week 1 July 1999, Week 5 July 1999, Week 4 July 1999, Week 3 July 1999, Week 2 July 1999, Week 1 June 1999, Week 5 June 1999, Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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