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So first thing that I want you guys to notice is that I changed my shirt. Second, thing you should notice is that Mandi hijacked my bed. Finally, I'd love some feedback on this blog post and some answers to my questions at the end. Thanks guys!
Friday, July 17, 2009
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6 people had something to say...:
Hi Ronnie...keep up the great work!! I just wrote you a huge blog about my experience and just lost it all...but anyway, wanted to tell you quickly...my name is Joslyn I'm 31 w CF livin in Cali...but yes, I was on a clincial trial last spring...it was the MP-376 trial that targets Pseudemonas. I have mucoid and non-mucoid strands of PA...so it was a good fit for me. Don't know yet if I received placebo or med. I'll know in a few months. But on the trial, I can say that I remained stable...I had been in the hospital two months prior and while on the mystery med, I remained stable while getting a lot of junk out of my chest. It was a %75 chance that I was guarenteed the med, so that was high. I sort of feel as if I was on the med because of my stability. I received the eflow to adminster the med and it was so quick and convenient...geez it was nice. But anyway, yeah, I think it is worth it. Like you said, find the best one that fits your needs...I am looking into, this fall, participating in another anti-infective med that is a double-antibiotic targeting pseudo and another trial that is the actual corretor of the CF gene...VX-809...so that's exciting!!! Keep up the great work Ronnie...and stay healthy!!!! Cheers to ya ;)))
Ugh. Can't view any of the videos from here in the hospital. I'll have to watch when we are home next week!
I, like you, haven't been in clinical trials in years. If I remember correctly I was in the TOBI and Pulmozyme trials, but don't quote me on that. It was many moons ago and I was much younger so I didn't really understand what was going on.
It looks like you're doing well!
I particpated in one clinical trial, probably 11 years ago. Half way through, I got sick. It tunrs out on was on the placebo, so they pulled me from the study so I could begin other treatments. I guess if you introduce new meds or change you routine through the treatment, you can mess up the study (?) At least I think that is what they said. I have CF clinic next week, I'll ask my doc what trials are going on around San Francisco.
I'm gonna be doing a clynical Trial next month, its going to me a mixture of Tobramycin and a new med. (but i forgot the name)..It targets pseudomonas too! Its going to be a 6 week clynical trial, and each time i go in they are going to pay me 50 bucks! Sorry I don't really have that much information on it right now, but I will call and try to get as much info as I can for ya!
Goodnight!
I just got signed up to start the AzLi clinical trial so I should be starting it within a couple of weeks. I will let everyone know how that goes as time goes on.
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