Nilotinib: Walking, talking, getting something to eat again!


#1

Hi everyone

Nilotinib info from Georgetown’s Laboratory of Dementia and Parkinsonism:

Alan Hoffman, a professor emeritus of social science education at Georgia State University, was diagnosed with Parkinson’s disease in 1997. He says he participated in several clinical trials with no benefit until he enrolled in Pagan’s study.

Before the nilotinib, I did almost nothing around the house,” he says. “Now, I empty the garbage, unload the dishwasher, load the washer and the dryer, set the table, even take responsibility for grilling.”

In the three weeks prior to enrolling in the study, Hoffman says he fell eight times, but he only fell once during six months on the study. His speech has improved, as has his thinking.

“My wife says it’s life-changing for her and for my children and grandchildren,” Hoffman says. “To say that nilotinib has made a change in our lives is a huge understatement.”

Hoffman and other patients in the clinical trial can continue taking nilotinib as part of an expanded access study.

Study participants with earlier stage disease responded best, as did those diagnosed with Lewy body dementia, often described as a combination of Parkinson’s and Alzheimer’s diseases

For the therapy to be as successful as possible in patients, the agent would need to be used early on in neurodegenerative diseases, Moussa hypothesizes.

Moussa is planning a phase II clinical trial in participants who have been diagnosed with disorders that feature buildup of the protein alpha Synuclein. These disorders include Lewy body dementia, Parkinson’s disease, progressive supranuclear palsy (PSP) and multiple system atrophy (MSA).

https://gumc.georgetown.edu/news/Researchers-Report-First-Therapy-Appearing-to-Reverse-Decline-in-Parkinsons
https://www.georgetown.edu/news/cancer-drug-parkinsons-study.html

My intro again with more info:
http://www.parkinsons.org.uk/forum/thread/79093


#2

Hi Logic

Thanks for posting this interesting article. It is always good to see encouraging trial results and especially so when the participants seem to have improved.

The Parkinson's UK research team commented on nilotinib recently http://www.parkinsons.org.uk/news/18-october-2015/we-comment-results-early-stage-trials-cancer-drug-parkinsons

In summary they said that it was not possible, based on this trial alone, to be sure that nilotinib was causing the improvements. It is good to see that further trials are planned. 

This trial is an example of drug repurposing where a drug that has been developed and proven safe for one condition is adapted for use in another. This approach is showing great promise and researchers are searching for other drugs that might be beneficial to pwp.

EF


#3

Hi elegant fowl

Yes it is and as you say, its already been through Phase I,II,III for cancer.

http://annonc.oxfordjournals.org/content/early/2012/02/21/annonc.mdr598.full
http://www.ncbi.nlm.nih.gov/pubmed/21456006
http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/results?protocolsearchid=6201157


So a lot of the studies have been done. Toxicity etc. and at much higher doses than used in the Parkinson's initial study:
https://www.georgetown.edu/news/cancer-drug-parkinsons-study.html


Up to  800 mg is used for Cancer.
150-300 was used in the the Parkinson's study
, recently published online in Human Molecular Genetics, where it was found be "...a novel strategy in treating neurodegenerative diseases that feature abnormal buildup of such proteins involved in Parkinson’s, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), frontotemporal dementia, Huntington disease and Lewy body dementia, among others..."

https://www.georgetown.edu/news/cancer-drug-parkinsons-study.html

The thing is; the sooner you start taking it the better it works:

...Study participants with earlier stage disease responded best, as did those diagnosed with Lewy body dementia, often described as a combination of Parkinson’s and Alzheimer’s diseases,” Pagan says...
https://gumc.georgetown.edu/news/Cancer-Drug-Improved-Cognition-and-Motor-Skills-in-Small-Parkinsons-Clinical-Trial

I assume it stops progression while you are taking it, but cant replace what's gone.

My friend's mom will be too far gone by the time this is accessible, IF she can afford it!?
She wants it now!  Hell; she'd have it already if she could afford the full 100 grams!


 

 


#4

Whilst I am desperate to see this drug available for PWP I a fear that it would be dangerous to buy it and self-prescribe .

Trials are not yet complete and I don't really understand how you can get a drug made safely   and sell directly to patients....legally.

GG


#5

We've removed a post.

It can be harmful to take drugs that have not been prescribed by a health professional. This is especially the case where the drugs have not been fully tested and are sourced from an unknown supplier. 

We won't let these types of offers remain on the forum and if you spot them, please report the post or call our helpline for more information. 


#6

Hi goldengirl

Those are valid concerns.

I am going to repost my other reply here:

Dangerous:
Yes it can be:
The lab might not supply Nilotinib or the Nilotinib could contain excessive amounts of residual solvents or heavy metals etc.
This is why I have researched, found and negotiated with an American lab to test the N.
Here is the reply I got detailing the testing that will be done:

...This is *** following up on your inquiry.
Let me be sure we grasped the essence of your inquiry well:
You have a quantity of material, which is presumed to be pure Nilotinib.
You wish to
1. Confirm that it is indeed Nilotinib. Using mass spectrometry one will
determine mass spectrometry is indeed an appropriate tool. Full scan will
yield MW and tandem MS will yield fragmentation pattern. Their match with
those published will indeed confirm compound identity

2. Assign purity by UV.

3.  It is highly unlikely to have heavy metals present in a sample
purported to be a pure compound, even if it comes from Southwest Asia. If
you wish to have the sample tested for metal content please tell what
metals are of the concern. Pb and Cd are common suspects...

That said:  Niltinib is NOT aspirin and due care should be taken by anybody who takes it!
See "Dose Modifications" here:
http://reference.medscape.com/drug/tasigna-nilotinib-342198
At the very least I would dose up on  potassium and magnesium and make sure I am not taking any CYP3A4 inhibitors.

Also note that the doses used in the PD trial were 150 - 300mg.  Not the 400 etc mg used for Leukaemia etc.
At these doses the only side effect noted was agitation caused by too much Dopamine from the std PD meds, due to patients producing their own, naturally again.
They just cut the dosage or discontinued it.

Possibly illegal:

Nilotinib is NOT a controlled substance.

This is the disclaimer one finds on the sites of manufacturers of this sort of thing:
"Products currently covered by valid US Patents are offered for R&D use in accordance with 35 USC 271(e) +A13(1). Any patent infringement and resulting liability is solely at buyer risk."

So the patent holders cant sue the manufacturer for selling you N, as you have bought it for Research and Development purposes.
Norvartis my try to go after you I suppose.  I 'am testing it on my hamster...'  for longevity effects due to its ability to increase PARKIN expression and the clear misfolded proteins from cells...cool

Now I am a totally unknown person here:.
HowTF do you know I am not trying to pull a fast one!?
You don't.  And nothing I can say here should change that!
But I am not an unknown person on Longecity.org where I have been a member for over 4 years, am known and trusted, and have already started a group buy thread for Nilotinib...

I do hope you will, at the very least, take a look at the thread.

I would also do a GoogleSiteSearch of Longecity.org for
Alpha Synuclein
Not only for the valuable info on accessible and practical ways to control Alpha Synuclein, but also to get a feel for the type of info and calibre of people on that forum.

I do hope I haven't broken any rules here?
Please let me know if I have.

 


#7

Hi Ezinda

You are correct: It can be harmful to take drugs that have not been prescribed by a health professional.
But lets not forget that said professionals followed a curriculum dictated by the Pharma Industry.
Said industry does not have your best interests in mind; it has its best interests in mind; profit.
Now if a substance is natural; it unpatentable and thus unprofitable...
The same goes for substances of which the patent has expired.
As such; there are a great many substances said health care officials dont even know about!
And if they do; they are expelled from 'the club' if they prescribe them.

I know this all sounds like thea crazy conspiracy theory of a nutcase, but urge you to consider that a differet opinion wouldnt exist if there was not at least a hint of truth behind it...
Please do a little research befor writing me off as such!  smile

The following is a PubMed search for 
Alpha Synuclein plant extract 
that features peer reviewed, published studies only:

http://www.ncbi.nlm.nih.gov/pubmed/?term=Alpha+Synuclein+plant+extract
ie:  
The listed study is by the

Department of Environmental Sciences, Faculty of Agriculture, Dalhousie University
and has been checked and criticised by other scientists in the same field, before it was allowed to be published.

Then the vast, 1000 X more expensive, price difference should prove the point that profit is the main, if not only interest of Pharma companies.

I do recommend reading the following and having the necessary checks done  by a doctor before using Nilotinib. 

http://reference.medscape.com/drug/tasigna-nilotinib-342198
​But I will not be dissuaded by them, unless they have something more effective on hand..!


I fully agree that "an unknown supplier" is not a good idea.
The suppliers from whom I have received quotes all have a good reputation on Longecity.org and their products are being used by thousands of people as we speak.
Even so; I would not take, or let others take, anything made by them without impartial 3rd party testing by an independent lab.  See my other recent posts here.

I fully agree that a high degree of caution is warranted in situations like this, but do PLZ do a little research of your own before dismissing them outright!
Doing so may just be doing a disservice to to the whole community here...?

"Its too good to be true, so it isn't!"  is also what all the cavemen said to the first person with a bow and arrow..!  smile

I do hope you will reconsider?

 



 


#8

Hi Logic

I'm afraid that we won't be able to replace the post and we will remove similar posts. We can't allow the forum to be used to share drugs that have not been prescribed and that still need more research to fully understand the possible benefits and side effects for people with Parkinson's. 

We have contacted our research team about this and they agree with this approach. 

Ezinda


#9

May I have the contact details of your 'research team' plz.
I would like to hear the concerns directly form people with medical training, who speak the lingo, for my own edification.

I think this may be more a concern of losing 'feet' through the site and thus income, more than any valid, selfless concern...?


#10

Hello,

Yes, of course. You can reach the team at research@parkinsons.org.uk. My colleague Beckie in the team is happy to speak to you. She's on 020 7963 9316.

Best

Ezinda