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Topic Very Interesting and Possibly Wonderful! Go to previous topic Go to next topic Go to higher level

By sosad25 On 2015.10.20 15:00
Don't know if anyone has seen this yet--regarding Cancer drug that has shown interesting results for Parkinsons in a small study. This is not the only article on the internet regarding the study. Take a look!

This one has a video,

By Sheridan On 2015.10.22 22:16
Very exciting!! We will be contacting neurologist to see if husband can get into next stage of trial. My husband has not been so hopeful in ages!!!

By SJWR On 2015.10.24 13:51
This is my very first post. I've been reading this forum for the past year so I recognize many of the names. First of all, thank you all for being willing to post your feelings and findings. So many of them are informational...some quite poignant. My husband was diagnosed with PD in June of 2011. It was a devastating diagnosis but we are dealing with it the best we can. What nudged me to finally post something is because of the Georgetown study of 11 Parkinson's patients using the drug, Tasigna otherwise known as Nilotinib. A friend of my husband told him about it and, of course, we researched it. My PWP's greatest advocate is our daughter and she, being in the medical field, researches everything she can. Lots of excitement about this drug for sure. However, we have reached out to the person in charge of the clinical trials and no response as yet, left a message with our neurologist but no call back either, talked to our primary physician who didn't give us much hope that it would be available any time soon. However, it does sound more promising than anything else in the pipeline so far. If anyone else knows more about this drug please let us know. Thanks for letting me share a few thoughts.

By lurkingforacure On 2015.10.24 15:22
A few things I've learned about this drug and PD from my research:

1. This is not a cure, and it looks like the patient would have to take it for life. When the patients in the trial quit taking it, their symptoms returned and they got worse.

No one takes chemo drugs for life, even at very low doses. So this would have to be looked at carefully.....

2. I've read that the cost of this drug is, hold on, $10,000.00 for a 28 day supply. If all were to go well, hopefully the cost would go down, because I can't believe any insurance would cover this and very few people on the planet could afford this. I have read that Prothena is working on a similar drug which would provide some competition and availability to more people if it worked as well (assuming nilotinib is successful in the next trial).

No doctor we have met with will script this off label, even at the very low doses that were apparently used in the trial. I guess you could try going outside of the country to get it, but that's expensive and travel is hard on our PWP. Most of us are going to have to wait and see how the rest of the research pans out, hopefully it will go as well as round one and the FDA will fast track approval for PD.

By VioletV On 2015.10.25 23:22
This is very interesting --seems to be one of the first truly promising developments.

Just for the record, lurking, In fact I do take a small dose of a chemo drug (about 10 percent of the dose given to cancer patients) for a platelet disorder. I expect to take this for life. Fortunately the generic form is not expensive. From what I've been told, and from my research and my own experience, the side effects are very mild. So presumably that issue won't be a deterrent with the drug that was studied in this article.


By LOHENGR1N On 2015.10.25 23:33
Just saw today both MJF and the CEO of the Fox foundation stated they were confident a cure would be found in the next three decades. mJF said he was confident they'd have a cure by 2045! This is the foundation that fast tracks funding to the most promising looking research?

By carman96 On 2015.10.26 03:43
Al, yeah I thought in 2045 they will have a cure? We will all be dead by then anyway. I don't have PD or anything else, and I don't plan on living until I'm 94, but my PD husband is 69 now.
Funny they said in ten years they will have a cure 15-20 years ago! Now they are saying another 30 years?
That's discouraging as hell.
They are making a big deal about this cancer drug but it was a very small trial with no placebo. It will take years to get through trials and FDA approval, if it is even proven to work.
I wish they would just shut up about all this promising research until they really have something.

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