Research

[mthteach]

L had his last MRI and PET scan with the research doctor yesterday. They told us that he could participate in another research for PSP patients. I wanted to know your inputs. I can look them up on the computer. The studies are:

TPI-287 - Used on cancer patients. it is a short study.

CN002003 - It is a injection, and has 3 lumbar punctures. It is for PSP and CBD patients. if I am correct in saying, someone in the UK did this study and committed suicide. All threw the paper work we have to sign in ask over and over about suicide.

C2N-8E12-WW-104 - it is a new study on PSP patients. There have been only 2 people who has done the study.

[easterncedar]

Very interesting! I looked them up. The first thing was studied for safety starting in 2014, so is this a new test of efficacy? It's good to see there are so many avenues of approach in play right now. Dreaming of a cure, fingers crossed! Ec

[abirke]

Yes we volunteered for this study. They have not gotten back with us, so I figure we are not candidates. all I know about a lumbar puncture is, it gives you one ____of a headache.....I am not a psychatrist , but I have a feeling that this person had a propensity toward suicide. It was just one person, correct?

Good luck, and if you need that support to carry on with the study, well you have mine

AVB

[mthteach in reply to abirke]

Thank you abrike. Yes, it was just one person with the suicide. They say they still have to warn people because of that one person.

I think my husband will be a candidate. We just finished the scan study to give the doctors bench marks to go by for PSP. The research nurse knows my husbands abilities, meds, etc.... I do not think she would be asking him if he was not a candidate.

I do not like the idea of the lumbar puncture. But, if it leads to a medicine that helps, it will be worth it.

Thank you for your support. it is better for us to stick together when it comes to PSP.

It is snowing here, and it never snows. It is beautiful.

[abirke in reply to mthteach]

Where do you live...South of here, Little Rock, actually snowed while we up in the mountains got nothing!!!

again good luck with this study

AVB

[mthteach in reply to abirke]

abrike, we live in what is considered LA (lower Alabama). My spouse went to see a PSP specialist at UAB. They want him to see a MSA specialist.

[abirke in reply to mthteach]

MSA...Multiple Sclerosis Assoc.? Wait I'm googling it....oh

Multiple System Atrophy

Parkinsonian However MSA distinctly affects the myelin a fatty protective layer surrounding nuerons in the glial cells /

I say this because this separates it from typical Parkinsons and most likely other diseases ie PSP.

Other features is that it affects: cerebellum and autonomic controls such as temp of body, blood pressure etc.

Anyway, I can see how they would have to rule this out as well as any other Parkinsonian type symptoms......

So I would not worry abuot this MRI that they'll most likely do to look at the what part of the brain seems to be affected....Though it seems like the other MRI's of the brain should be able to tell ......

Well keep talking to me, I am interested.... you probably already told me....i have no memory....can your husband walk, swallow, talk, be fairly independent?

AVB

[jillannf6]

HI

I WOUDL LOVE TP TAKE PART IN SOEM RESEARCH /BUT HAV ENEVE RHNBEEN OFFERED AMY OS FAR

LVIKE IN HOPES

LO L JILL

XXXX

[mthteach in reply to jillannf6]

Jill we were not offered. I look up what research is being done in the U.S. Then I call the number on the web site to find out if they are still recruiting. The CN002003 will pay 1,300 for expenses for you to take part in the study.

We are leaning toward the C2-8E12-WW-104 study because it targets the TAU protein in the brain. It has only been done on rats and 2 human beings. They said it has shown to break up the TAU and slow the progression.

[Julia_A]

Hi

Do u know if u have to be in the uk to be able to be a candidate?

[mthteach in reply to Julia_A]

Julia_A,

I think the research is only in the U.S. Go to this web site and put in the 3 different studies that I mentioned. It will tell you where the studies are being done.

V=clinicaltrials.gov/ct2/show...

[Judymichelle]

My mother-in law is currently part of the TPI-287 research at UAB Hospital.

[mthteach in reply to Judymichelle]

Judy,

Dose your mother-in-law have PSP? We had to finish up the 1st study at UAB before we could join one of these. I told Linda we would let her know this week which one we decided on. How is your mother-in-law doing with the study?

We were actually thinking about the Bristol-Myers study or the C2N study. Because we were told they target the TAU protein.

[Judymichelle in reply to mthteach]

My mother-in-law has CBD. At this point any infusions she has had we don't know if she got the real drug or the placebo. When we take her mid-February for her next infusion she will for sure be getting the real drug. From then until the end of the study she will get the real thing.

[easterncedar]

Just a note, my guy had a diagnostic lumbar puncture a few years back and there no ill effects. He had very little discomfort and no headache.