yes, I think my neuros  confirmed what I think I posted re  patents.  I 
think this came up during discussion of whether  Cleo  Roberts   Research 
Center would do trial, so far no  positive response.

-----Original Message----- 
From: Kathleen Cochran
Sent: Saturday, January 16, 2016 6:32 AM
To: [log in to unmask]
Subject: Re: Nilotinib

I suspect one reason so many of our neuros are watching from the sidelines
to see what happens at Georgetown is that the Georgetown doctors hold--or
are in the process of gaining--the patent for the use of Nilotinib as a
PD medication. If they hold the patent, any further studies must be
approved by them. At least it seems so to me based on what I have read. Can
anyone clarify this?


On Saturday, January 16, 2016, Rayilyn Brown <[log in to unmask]> wrote:

> 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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