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PARKINSN Archives
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PARKINSN@LISTSERV.UTORONTO.CA
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I think one of the reasons that doctors may be reluctant to try nilotinib
is that they're stuck in the paradigm of having to do a double blind,
controlled study on a large number of people to ascertain efficacy.
Statistically, this makes sense. However, I look at it probabilistically:
let's say that the probability of one of the Georgetown patients recovering
to the extent they did was 1 in 10, making allowances for placebo effects,
etc. (Frankly, I would put it at something more like 1, in 100 or 1 in
1000, but we can be generous here). That means that the chance of all 12 of
these patients (I believe there were 12 in all) recovering in a like manner
would be 1 in (10) to the 12th power, or 1 in 1,000,000,000,000. Likewise,
if you assign the initial probability of one person recovering as 1 in 100,
then the probability of all 12 recovering becomes 1 in
1,000,000,000,000,000,000,000,000. These kinds of numbers do not represent
"chance" events: you've got to think that there's something going on
there!! So, I don't understand why doctors wouldn't prescribe it,
especially if it is a "last chance" scenario, and especially if your
insurance (or you, yourselves) are willing to pay for it. I'd be tempted to
seek a "second opinion".
Roger Seymour
On Fri, Sep 21, 2018 at 1:00 AM Trauti Boyd <[log in to unmask]> wrote:
> it's puzzling though - the original georgetown trial did include
> somebody with dbs and he showed impressive improvement. off-label
> prescriptions are still pretty much impossible to get. my husband's
> neurologist again refused
>
>
> On 9/19/2018 10:23 PM, Rayilyn Brown wrote:
> > I think DBS excludes people because they don’t know if improvements
> > are due to med or DBS. However, in my experience (22 years) with PD
> > you get worse no matter what you do. Since Tasigna is already
> > approved for cancer, I don’t see why you cant take it, just not be in
> > a trial. I would know if something helped.
> >
> >
> > -----Original Message----- From: Trauti Boyd
> > Sent: Tuesday, September 18, 2018 3:46 PM
> > To: [log in to unmask]
> > Subject: Re: Nilotinib trial goes on
> >
> > same for my husband :(
> >
> >
> > On 9/17/2018 11:31 PM, Rayilyn Brown wrote:
> >> leaves me out
> >>
> >> -----Original Message----- From: Trauti Boyd
> >> Sent: Sunday, September 16, 2018 3:16 AM
> >> To: [log in to unmask]
> >> Subject: Re: Nilotinib trial goes on
> >>
> >> unfortunately, people with dbs are excluded
> >>
> >>
> >> On 9/15/2018 11:31 PM, Rayilyn Brown wrote:
> >>>
> https://www.michaeljfox.org/foundation/news-detail.php?parkinson-nilotinib-trial-enrolling-participants-a
> >>>
> >>>
> >>>
> >>> Ray
> >>> Rayilyn Brown
> >>> Past Director AZNPF
> >>> Arizona Chapter National Parkinson Foundation
> >>>
> >>> ----------------------------------------------------------------------
> >>> 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
> >>
> >
> > ----------------------------------------------------------------------
> > 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
>
----------------------------------------------------------------------
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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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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