why don't we hear from more trial people

[streamline569]

I would like to hear the experience from people without cirrhosis and diffenent degrees of liver damage and how they did in trials with 24 and 48 weeks. We never hear from this group of people. It would be nice to know who reach SVR and who didn't without just reading trial information that is so limited as to the individual personal situation and end result. They are out there, how do you find them?

[suezeeque]

Whoops.  VL *week 12.

[suezeeque]

I'm in phase 3 for BI 20133 (or placebo).  It's double blind.  I wasn't asked to sign anything stating I wouldn't 'talk'.  :)

I believe I'm in week 10 now but I must admit, I've lost track.

I'll get my VL week `1 but what I'm not clear about is if that will be a week 8 VL or if the blood is drawn on week 12 visit for that...  Wish I knew!  I guess I could make a call but I'm kind of not wanting to know right now if it's the latter.

[curiouslady1]

I think it is up to the mods to determine what is fair or not fair or what is useful or not or what other people with other diseases on other forums wish or want or need in terms of internet tools and communications.  My inquiry was not about whether it is a good idea or not.  It was about whether others would be interested.  At this point, it does seem as though there is little interest in this idea at least with the people who have decided to respond to the query this afternoon.  Nevertheless, hopefully, people will post information that is potentially helpful to others either through a thread with a clear subject title or in a journal that can easily be accessed by interested others.  I very vigorously disagree with the idea that there is little interest in trials now that the tele/boce trials are over.  And that "most people" want to take the triple.  I get quite a few back channel requests for information and have seen interest generated in the regular forum esp for trials which do not include SOC.  But that is only the people who have been able to find out that there are alternatives for them.  The flurry of interest has only been generated in the past two months re the all-oral trials which have only gotten underway within the past little while.  I think it will only increase.  

[blondie717]

    Well I would tx as long as I had to so I did not have to do it again. And I probally would not be thinking that way if I had sx... My trial always has more paper work for me to sign lately (there changing the rules???)  Now they are looking for late relapse. I guess later than the usual.  And maybe they might be looking for mutant or occult virus.  Dont know Im usually with out me spects and cant see what Im signing.  
    My thoughts are maybe you should go 48 wks just incase. since there already looking for later than usual relapses in de trials. Oh also I agree. They do look for the healthiest folks in the trials. Not fair.But it will rule out some reasons for failure. Lets say you and I went in I got a good ticker you got a bad one. you die ya had a bad ticker ;-)..we both die and WOW must be something wrong with their study drug. because I was only 21 and had a good ticker ;-)... Have a good day and I hope your 48 wks flies by as mine did... Ps ins. might not want to pay for second go around too. well gotta go feed a gut ;p)  ginger

[streamline569]

Hi, wonderful story and so happy for you. I'm not in a trial. I am on triple therapy with incivek. I finished the incivek and reach my first and very important goal ervr. I was undetectable all the way through to my 12 week and now am finishing up my last 12 weeks with riba and interferon.

They do recommend the 48 weeks for me and I guess I'm looking for answers to justify my wanting to cut treatment to 24 weeks. I feel I have a good chance of permanent SVR because of my ILB28 cc , first time treating and the fact that I responded quickly and everything is right on target. I'm just looking for answer as to why some people clear permanently and some will relapse. I know in trials they don't use people who aren't in the best of health so in some ways I feel trials don't give the rest of us a fear and adequate percentage of our SVR. I looking for the latest data to that comes out and that only through people who have been through trials. Although I am feeling so well the longer I am off of the incivek that maybe the 48 won't be so bad. There is a part of me that wonders how much damage the extra time will do to our livers. We know damage can start to reverse but no until off therapy. we have never heard of damage reversing while on therapy. Which in my mind if we could find out that 24 weeks is just or almost as good it may be better to go that route.Thanks for you reply, your story is quite amazing and I wish you much luck and health going foward.

[willbb]

Well hello there... :)