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PARKINSN Archives
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PARKINSN@LISTSERV.UTORONTO.CA
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Trauti and Nic
I didn't get Nic's post but I agree with both of you. No drug is 'safe", I
think the PD ones are ineffective and have some awful side effects. I had
bad side effects - seizures and gigantic hematomas - from cancer drugs, had
to quit them.
Love my neuro but he won't prescribe even though my insurance makes Tasigna
affordable at $100/3 mo. supply. his Cleo Roberts Research Center
wants to "watch closely" too. I'll ask him again when I see him in early
March.
You know me, I'm in favor of rebellion, but after 20 years of PD its very
hard. and only a few responded when I tried to take on Novartis.
let me me know if any one has any ideas.
Ray
-----Original Message-----
From: Trauti Boyd
Sent: Friday, January 15, 2016 7:22 AM
To: [log in to unmask]
Subject: Re: Nilotinib
hi, nick! not surpringly we had no luck with our neuro last week. but since
my husband goes to the duke movement disorders clinic i sort of expected
that :(
it would have been a miracle if conerns over liability due to off-label use
and with a cancer drug would not have outweighed my husband's willingness to
take that chance.
apparently, georgetown has moved ahead with a larger trial expected to last
1 year. dr hickey assured us that duke is watching closely.
we will give it another try at the next appointment with our family doctor
in february but i have little hope.
trauti
----- Original Message -----
From: "Nick" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, January 15, 2016 2:39 AM
Subject: Nilotinib
> Is anyone taking Nilotinib? Would appreciate the name, address, phone
> number of any MD prescribing Nilotinib for pd.
> \
> Don't understand why they aren't prescribing this obvious cross-over drug.
> Afraid it will hurt their income?
>
> The following quotes from the trial literature:
> - Nilotinib was well tolerated, with no serious side effects.
> - "The observed efficacy in cognition, motor skills, ,,, was the most
> dramatic result". said Dr. Pagan
> - Ten of the 11 patients who completed the trial reported meaningful
> clinical improvements.
> - Patients also showed positive changes in relevant cerebrospinal fluid
> biomarkers: a-synuclein, amyloid beta -40/42, dopamine, Tau and p-Tau
>
> To be fair, Nilotinib has exhibited some serious side effects, but at the
> much higher cancer dosages. Some of these side effects will most likely
> also appear at the lower pd dosages. BUT THE CURRENT CROP OF PD MEDS ALSO
> CAUSE "I CAN'T TAKE THIS DRUG" PROBLEMS.
>
> I rather take my chances with Nilotinib than continuing to suffer with
> Sinemet.
>
> Everyone has to demand that their neuros prescribe Nilotinib. We need a
> ground swell of rebellion against their refusal to prescribe!
>>
>
> ----------------------------------------------------------------------
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> mailto:[log in to unmask]
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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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