Parkinson's Disease Tulip

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Old 02-06-2019, 10:04 AM #1
zanpar321 zanpar321 is offline
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Default 2019 Nilotinib status

Does anyone know the status of the multiple Nilotinib clinical studies that are ongoing right now?
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Old 02-06-2019, 10:49 AM #2
lurkingforacure lurkingforacure is offline
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Angry Frustrating

I haven't been able to learn anything, and good luck getting someone to script this for you if you want to try to do a one-man trial. Our neuro wouldnt' do it, but agreed to reach out to an oncologist to see if he would do it with our neuro's supervision, but the oncologist declined, too.

Then we tried our alternative practitioner, but he also declined.

As a last resort, we contacted a teaching facility in another country (friend of a friend of a friend who knew someone....) and begged the neuro there to script it. No dice.

We offered to sign all kinds of waivers, releases, hold harmless agreements, whatever was needed to address the fear of being sued, but it made no difference. It was and is so very frustrating.

If anyone has an update, please share
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Old 02-06-2019, 02:06 PM #3
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This is the most recent that I can find.

Phase 2 Trial Shows Nilotinib Potential to Modulate Dopamine in Parkinson’s
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Old 02-06-2019, 04:36 PM #4
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I found this as well

NILO-PD: Completed recruitment of Phase II nilotinib trial for Parkinson's progression

NILO-PD is a Phase II, randomized, placebo-controlled clinical trial evaluating safety and tolerability of nilotinib in 76 people who have had PD for at least five years. The study, funded by The Michael J. Fox Foundation (MJFF), recently completed recruitment -- a major milestone, because research often is hindered by the inability to recruit enough volunteers.

Nilotinib is a U.S. Food and Drug Administration (FDA)-approved treatment for certain cancers. Previous pre-clinical research and a small, open-label Phase I trial found that it also may benefit people with Parkinson's. In NILO-PD, two-thirds of the volunteers take nilotinib and the others take placebo (an inactive pill that looks like nilotinib) for six months. We expect to see results in late 2019.

Research Roundup: Trials Stepping Forward to Potentially Slow Disease and Ease Symptoms | Parkinson's Disease
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Old 02-19-2019, 12:54 AM #5
Betsy859 Betsy859 is offline
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Default Georgetown Nilotinib Trial

Quote:
Originally Posted by zanpar321 View Post
Does anyone know the status of the multiple Nilotinib clinical studies that are ongoing right now?
Iíve been in the Nilotinib trial at Georgetown almost a year and a half. The first year Iím pretty sure I was on the placebo then there was a three month ďwashoutĒ. Now Iím in the ďopen labelĒ phase where I actually receive the drug for the next year. Iíve been on 300mg of Nilotinib for 71 days.
There are 75 patients in the trial (Iím #41) once everyone is in the ďopen labelĒ phase they will let us know what drug we we were taking the first year of the trial ....placebo, Nilotinib 150mg or Nilotinib 300mg.
What they have found out so far, that they are sharing, is that Nilotinib doesnít work for everyone. They are thinking this has to do with genetic makeup. At this time (and this could change) Dr. Pagan thinks 200mg Nilotinib maybe the ideal dosage. I also hear through the grapevine that there have been a variety of responses to Nilotinib. Mostly all positive but of course there have been those not responding. These are just a few of the things Iíve picked up during my visits to Georgetown.
Now for how Iím doing.....I canít say Iíve noticed any real changes in the 71 days Iíve been on Nilotinib. Iím trying to keep my head out of my observations (placebo effect) but there maybe some subtle changes that Iím watching or maybe feeling. These are a slightly improved smell not great but something. On more nights than not I sleep better and some days (not every) my tremor is less. So certainly nothing dramatic happening for me. Just hoping more improvements are ahead.
I havenít heard from anyone else in the trial but would love some feedback from anyone else in the Georgetown trail or the MJF trial.
I hope this was helpful for those wondering about the GT trial.
Take care.
Betsy
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Old 02-19-2019, 10:09 AM #6
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Quote:
Originally Posted by zanpar321 View Post
Does anyone know the status of the multiple Nilotinib clinical studies that are ongoing right now?

As Betsy wrote above, all patients have completed the course of drugs in the Georgetown trial and the data is being analyzed. The open-phase post-trial is now ongoing where all volunteers are receiving the drug. Some blood/PK data has been analyzed with initial results already released.

The Northwestern U. trial (referred by some as the MJFF trial) is still ongoing. All volunteers have been recruited and about 1/3 have already completed. All will be completed by July. I would anticipate data released sometime near year-end. Decisions for funding a Phase 3 will be dependent on the results of the Phase 2 safety/dosing trial.
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Betsy859 (02-19-2019), eds195 (02-20-2019), jeffreyn (02-20-2019), kaimr (02-25-2019), lurkingforacure (02-19-2019), RLSmi (02-22-2019), RooJr (02-21-2019), zanpar321 (02-22-2019)
Old 09-07-2019, 01:03 AM #7
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Default Nilo study

Hello, My husband was in the MJFF trial. He was enrolled in Nov 2017 and completed the trial in Aug 2018. Do not know if he was on the placebo or not. We managed to get a prescription for the drug and he went on it for 7 months starting in Nov 2018 and ending in June of 2019. We saw very slow and modest improvements (mostly cognitive). Since he has been off, his motor symptoms are much worse (shuffling mostly). I am eager to reach out to those who are on the drug or know people who are on the drug or in the trial so we can share experiences. Please reply!!! thanks so much




Quote:
Originally Posted by Betsy859 View Post
Iíve been in the Nilotinib trial at Georgetown almost a year and a half. The first year Iím pretty sure I was on the placebo then there was a three month ďwashoutĒ. Now Iím in the ďopen labelĒ phase where I actually receive the drug for the next year. Iíve been on 300mg of Nilotinib for 71 days.
There are 75 patients in the trial (Iím #41) once everyone is in the ďopen labelĒ phase they will let us know what drug we we were taking the first year of the trial ....placebo, Nilotinib 150mg or Nilotinib 300mg.
What they have found out so far, that they are sharing, is that Nilotinib doesnít work for everyone. They are thinking this has to do with genetic makeup. At this time (and this could change) Dr. Pagan thinks 200mg Nilotinib maybe the ideal dosage. I also hear through the grapevine that there have been a variety of responses to Nilotinib. Mostly all positive but of course there have been those not responding. These are just a few of the things Iíve picked up during my visits to Georgetown.
Now for how Iím doing.....I canít say Iíve noticed any real changes in the 71 days Iíve been on Nilotinib. Iím trying to keep my head out of my observations (placebo effect) but there maybe some subtle changes that Iím watching or maybe feeling. These are a slightly improved smell not great but something. On more nights than not I sleep better and some days (not every) my tremor is less. So certainly nothing dramatic happening for me. Just hoping more improvements are ahead.
I havenít heard from anyone else in the trial but would love some feedback from anyone else in the Georgetown trail or the MJF trial.
I hope this was helpful for those wondering about the GT trial.
Take care.
Betsy
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Old 09-22-2019, 07:54 AM #8
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Default Thumbs up for Nilotinib phase 2 trials

This is a good read from a trial participant.

Thumbs up for Nilotinib - Phase II Tr... - Parkinson'''s Movement

Conclusion: Nilotinib is well tolerated and appears to be safe in PD patients. Nilotinib appears to stop the decline in motor and non-motor functions when the effects of PD medications wear off six months after treatment. Nilotinib may have a significant impact on the care and management of PD patients, leading to delay or elimination of dose adjustment, thus avoiding various side effects associated with PD medications.

150mg dose did better than the 300mg dose
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