Just A Short Question From Me Today - Has Anyone Had Access To A Trial Involving Stem Cells | MyParkinsonsTeam

Connect with others who understand.

sign up Log in
Resources
About MyParkinsonsTeam
Powered By
Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
Just A Short Question From Me Today - Has Anyone Had Access To A Trial Involving Stem Cells
A MyParkinsonsTeam Member asked a question 💭
posted April 3, 2016
View reactions
A MyParkinsonsTeam Member

Look at Georgetown University Hospital Center. They have been doing clinical trials with a cancer drug that makes the cells get rid of toxins properly. This medicine is working on PD patients. They have finished phase 1 and are currently organizing phase 2. The medicine returned patients to normal and the brain started to produce more dopamine. I see my neurologist next month and I am going to ask him about.

posted April 9, 2016
A MyParkinsonsTeam Member

Susanlapp That sounds pretty amazing hope you get more info from your neurologist will be interested to hear how it goes

posted April 10, 2016
A MyParkinsonsTeam Member

NILOTINIB

Oct 2015 — An FDA-approved drug for leukemia improved cognition, motor skills and non-motor function in patients with Parkinson’s disease and Lewy body dementia in a small phase I clinical trial, at GUMC In addition, the drug, nilotinib (Tasigna® by Novartis), led to statistically significant and encouraging changes in toxic proteins linked to disease progression (biomarkers).

Charbel Moussa, MD, PhD, who directs Laboratory of Dementia and Parkinsonism, conducted the preclinical research that led to the discovery of nilotinib for the treatment of neurodegenerative diseases. To conduct the clinical study, he partnered with Fernando Pagan, MD, a GUMC associate professor of neurology who directs the Movement Disorders Program at MedStar Georgetown University Hospital.

“To my knowledge, this study represents the first time a therapy appears to reverse — to a greater or lesser degree depending on stage of disease — cognitive and motor decline in patients with these neurodegenerative disorders,” says Pagan. “But it is critical to conduct larger and more comprehensive studies before determining the drug’s true impact.”

Investigators will report that the 6 month, dose-escalating study of nilotinib (150 - 300 mg daily) produced benefit for all study patients who completed the trial (11 of 12), with 10 patients reporting meaningful clinical improvements

In addition, researchers found that the drug penetrates the blood-brain barrier in amounts greater than dopamine drugs.

But the observed efficacy in cognition, motor skills and non-motor function improvement (such as constipation) for many patients was the most dramatic result, says Pagan. The investigators report that one individual confined to a wheelchair was able to walk again; three others who could not talk were able to hold conversations

“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

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

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

In the 3 weeks prior to enrolling in the study, Hoffman says he fell 8 times, but only fell once during 6 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.”

https://gumc.georgetown.edu/news/Cancer-Drug-Im...

posted April 9, 2016
A MyParkinsonsTeam Member

Dear @A MyParkinsonsTeam Member

Thank you for the kind words,... I truly believe that there will soon be "options" for use of stem cells and Parkinson's... But, everyone needs to do their own due-diligence for themselves.... I've noticed recently there are some websites that are touting "miracles thru stem cells"... and if you follow the fine print, they are huge Marketing Corps.... that are only interest in $$$$. My advice is check actual results from people in the know like your own doctors, and friends that have tried this new technology.... Go for the best surgeon with a long history of success.... and positive outcomes ! Cheers, Alan

posted April 4, 2016
A MyParkinsonsTeam Member

I believe the John Radcliffe Hospital has a good reputation on PD. My difficluties stem from mobility and balance which I have been told basically cannot be addressed from a medication point of view. After almost 20 years of living with this condition I am really looking for something where stem cells are actually on trial. Understandably researchers and doctors want things to be safe but I, like many others I'm sure, am aware that time is moving on and would like to see things move forward on this condition. In all honesty you have to live with this condition to understand how cruel it is and why some of us anyway may want to put themselves forward if we ourselves have assessed the "risks". Perhaps these are the ramblings of someone who would like to have more control over this uninvited guest. Do we get enough say in decision making?

posted April 7, 2016

Related content

View All
Has Any One Used Stem Cell Tharapy? Does It Work?
A MyParkinsonsTeam Member asked a question 💭
Phila
A MyParkinsonsTeam Member asked a question 💭
Theracycle
A MyParkinsonsTeam Member asked a question 💭
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of use, and our Health Data and Privacy policies.
Already a Member? Log in