cephtriaxone trial

psiep · 09-10-2009, 12:33 AM

Is anyone out there involved in a current cephtriaxone clinical trial?

psiep · 09-15-2009, 10:27 PM

Anyone? Noone??

KinzaDAF · 09-15-2009, 10:48 PM

My dad is *considering being part of a trial at The Ohio State University, but there *is a chance that he would be considered too old to participate. ( He will be 79 in November. ) My mom isn't too keen on dad's being part of the trial though anyway, since she said it would involve him having to get a Hickman catheter ( which she says Dad wouldn't like ), and lots of trips up to Columbus. ( My parents live about an hour away. ) If people don't participate in clinical trials nothing is going to be learned, so *I'd likely opt to participate, but it's not *me who has to make a decision. If it's not something Dad wants to do, I will support his choice.
FYI, I believe the Cleveland Clinic ( Ohio ) is doing the same trial. I have no idea how many people are willing to participate in these trials, but I *do know that people have to be in relatively the same "places" in their disease.

Debbie

Katie C · 09-16-2009, 01:11 AM

Debbie.. we're in a similar position. Glen has been asked to participate at UCSF. But with his cognitive involvement, his anxiety level is extremely high. He's very hesitant about the Hickman catheter, and has an added hesitation.. cephtriaxone can potentially be hard on the kidneys, and my father in law died of kidney disease. I don't know your dad's situation, but if high levels of anxiety are among his symptoms, I totally understand your mom's reaction... it's a tough enough thing to live with without doing something that will add to the anxiety.

We also live about 90 minutes from the University, but I'd be more than happy to do it if Glen were so inclined. However, if he's not I'm going to follow his wishes.

Don't know if you've seen the paperwork package that comes with the "invitation" but it has a lot of information on who they're asking, how many, etc. It's definitly interesting reading.

GlenBrittle · 09-16-2009, 05:33 AM

psiep,

Look down , way down. No silly, not at your crotch or feet.

At the bottom of the page , there is a list of similar topics . You will see more info on what you are looking for.

Glen

t34gib · 09-16-2009, 07:48 PM

I went for the screening, but did not qualify. Seems i am not bad enought yet. I have only Bulbar, which I would love to slow down but seems they want quicker progressors so that they can better measure the affects of the drug. Makes no sense to me or my Doctor, but that is the way it is. I was going to be the first in Jacksonville, but now have to wait until I get worse. Why not slow it down now? I don't know, but that is the way it is.
NancyS

peter57 · 09-16-2009, 09:00 PM

Hi,
I cannot understand, like Nancy why they wont take on all people on the trial.

Surely they would be able to gauge the progression on "healthy" people as well as those not so "healthy".

I would have thought if this, and indeed any thing worked in slowing dowm ALS then it would be benificial for all to be on the trial, for it might just might give those who are not so effected yet some more quallity time with their loved ones etc.

On trials in general.

I applaud those who are taking part in trials where ever.

Those of us who cannot participate for whatever reason (in my case and others "down under" we just dont have trials here) are waiting for "that trial" to show promise and then "jump" on the treatment some how. (if we can get past the RED tape)

cheers and good luck with all the trials
Peter

bleonard4 · 09-17-2009, 06:41 AM

My sister (47) is on a waiting list at the Cleveland Clinic. She is not sure if it is waiting to get her line placed or waiting to start the trial. They told her she was 10th on the list. It was her 1st clinic visit the day she found out about the trial so she was VERY overwhelmed and didn't ask what being 10th meant. She is waiting to hear back from the clinic nurse. I will keep you posted.
Barb

Al · 09-17-2009, 01:29 PM

They won't take me for trials because I've had it too long. doesn't make a lot of sense to me. Cure me then for sure it would work on the rest, right?

AL.

tdamess · 09-17-2009, 02:44 PM

your so right grampal

BethU · 09-17-2009, 03:01 PM

Peter ... off topic, but I love your avatar. Greatest ancestor photo ever. (I assume there's an ancestor under there somewhere.

)

peter57 · 09-17-2009, 07:56 PM

Hi Bethu,
Re the avatar.
The short story. I have always had the nickname of Ned, from Ned Kelly the most famous bushranger Australia had in the early days.
(we have some now but in other areas eg politics

)

so this is a photo of him just before he was hanged.

cheers (i guess yours is an ancestor though?)

Peter

BarryG · 09-17-2009, 09:00 PM

Peter, probably not the ancestor that you want anyway. My wife belongs to a book society and one of the books that she got was called "The Fatal Shore" which was about the early history of Australia. A fascinating read about a fascinating country.

SavoringLife · 09-18-2009, 08:09 AM

A comment on the ceftriaxone trial: we were also interested in the ceftriaxone trial, but given that half will get the placebo, decided against it. It seemed a lot of hassle -- installation of a hickman, daily drug injections for a year -- if you don't get the actual drug. (BTW...we realize that trials are for the greater good and would have loved to contribute, but were a bit selfish in this case.)

So, our neuro and primary care physician ordered Ceftriaxone off-label for my husband. He had a port-a-cath installed (very simple, easy to take care of) and we were trained on how to do the daily injections. He stopped taking it when he was accepted into the SB-509 trial. While he was on it, though, his liver enzymes shot way up -- 4x normal values.

tdamess · 09-18-2009, 09:20 AM

what does liver values show....(4x normal value