 |
 |
Super article Kathleen, thanks -----Original Message----- From: Kathleen Cochran Sent: Sunday, November 08, 2015 9:22 PM To: [log in to unmask] Subject: Re: Ray's questions #1, #2, #3 Hi Ray, Don Reed's book sounds like a great place to start. Here's an article from Georgetown University -- nor sure if I posted it before. https://gumc.georgetown.edu/news/Cancer-Drug-Improved-Cognition-and-Motor-Skills-in-Small-Parkinsons-Clinical-Trial Kathleen On 8 November 2015 at 02:39, Rayilyn Brown <[log in to unmask]> wrote: > thanks Kathleen > > Don Reed's book Stem Cell Battles - Prop 71 and Beyond is supposed to > be about how folks can best battle for progress in disease research, book > comes out in December and I'm hoping for pointers on strategies for > organizing. lets start with Don's book > > I think it should be noted that while a cancer drug may help PD, a PD > drug might help another disease or condition and there is no reason why a > leukemia patient should have to pay over $10,000 a month to stay alive. > > Medical research and affordable meds are good and worthy causes not just > for Parkinson's. > > And yes, Nic, it is very difficult for me to "type" - have tocorrecct > every other word, but I can barely speakk at all,,sooo computer is a > help > Lets organize!!!! > > -----Original Message----- From: Kathleen Cochran > Sent: Saturday, November 07, 2015 10:20 AM > To: [log in to unmask] > Subject: Re: Ray's questions #1, #2, #3 > > Ray asked: > > 1. Who is doing further trials? when and where? > > THE FOLLOWING TEXT IS EXCERPTED FROM A FORBES MAGAZINE ARTICLE BY EMILY > MULLIN. I URGE EVERYONE TO READ THIS EXCERPT. IF YOU JUST WANT THE SHORT > ANSWER TO RAY'S QUESTION #1, SCROLL TO THE END OF THE EXCERPT. > > THE ENTIRE ARTICLE (VERY WORTHWHILE) CAN BE FOUND AT: > > http://www.forbes.com/sites/emilymullin/2015/10/21/could-a-cancer-drug-reverse-parkinsons-disease/ > > NOW HERE'S THE EXCERPT: > > ...The study [of nilotibid, at Georgetown] represents the first time a > therapy appears to reverse cognitive and motor decline in patients with > Parkinson’s disease, according to the researchers. “But it is critical to > conduct larger and more comprehensive studies before determining the drug’s > true impact,” said study author Dr. Fernando Pagan, an associate professor > of neurology at Georgetown University, in a statement. > > The trial builds on animal studies conducted by Georgetown University > assistant professor of neurology Dr. Charbel Moussa. In a study previously > published in *Human Molecular Genetics* > < > http://hmg.oxfordjournals.org/content/early/2013/05/09/hmg.ddt192.abstract > >, > > Moussa found that nilotinib prevented the buildup of toxic proteins > associated with Parkinson’s in the brains of mice. > > The leukemia drug Tasigna (nilotinib) improved cognition and motor > functions in patients with Parkinson’s disease in a small clinical trial. > > Nilotinib is approved to treat leukemia, and it works by forcing cancer > cells into autophagy – a biological process that leads to the death of > tumor cells in cancer. But in Parkinson’s patients, low levels may be > enough to turn on just enough autophagy, or cell degradation, in neurons > that the cells would clear malfunctioning proteins and nothing else. In > other words, the drug seems to work by switching on the garbage disposal > machinery inside neurons to clear toxic proteins from the cell, Moussa > speculates. > > The clinical trial included 12 volunteers with Parkinson’s disease or a > similar condition called dementia with Lewy bodies, the second most common > type of progressive dementia after Alzheimer’s disease. Participants > received daily doses of nilotinib in 150 mg and 300 mg doses – much > smaller > than what’s used to treat cancer, which is up to 800 mg daily. While the > study’s primary objective was to test safety, 10 patients demonstrated > what > drug developers call “meaningful clinical improvements.” Researchers also > reported that the drug was well tolerated with no serious side effects. > > It appears that in smaller doses once a day, nilotinib turns on autophagy > for about four to eight hours – long enough to clean out the cells without > causing cell death. Then proteins that build up again will be cleared when > the drug is given again the next day,' Moussa said in a statement. > > While the results seem wildly promising, they should be interpreted with > caution; the researchers did not study a control group for comparison. > Also, nilotinib was not compared with other medications used to treat > Parkinson’s in the study. > > Even if the drug is found effective in further studies, the cost could be > out of reach for many patients. For leukemia patients taking nilotinib, > the > drug costs about $10,360 a month. > > "The Georgetown researchers are now planning larger clinical trials with > nilotinib for patients with Parkinson’s and other > neurodegenerative diseases, including Alzheimer’s disease, which are > slated > to begin in 2016.... > Ray asked: > 2. What is opinion of neuros? > > My neuro referred to the statement by the National Parkinson Foundation > that most of us probably have seen (see http://bit.ly/NPF-nilotinib), > which > he thinks is a reasonable position to take right now. He thinks that at > this point, to prescribe nilotinib off label for PD would be "unwise." He > speaks of the smallness of the study, the fact that it was designed to > study safety only, and the lack of a placebo group. > > Core message: Wait and see. Anyone else have a response from their neuro? > > Ray asked: > 3. How willing is PD community to fight for progress? > and outrageous drug costs/note that drug developer Dr. Druker’s > research paid for by Leukemia and Lymphoma Society, not Novartis, drug > producer > > Obviously, each of us has to assess our priorities and gauge our limits as > to how willing and able we are to take an active role. And getting > organized is a challenge. But given the stakes and the promising nature of > this treatment, it seems to me that if there ever were a time to push > ourselves, it's now. > > If anyone has thoughts or suggestions on what this might look like and how > we might proceed, please speak up. Let's see if, together, we can generate > some traction. > > Based on my almost 20 years with this disease, the time to start fighting > for this research and for affordable treatments is now...or, more likely, > yesterday. > > Kathleen > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto: > [log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto: > [log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn