I was pulled from the trial

[susan400]

I don't feel like saying a lot, but since I was allowed to report when I went on the Vertex trial, then, I'm reporting to you that today, I was pulled from the Vertex trial.  I did not get the viral response necessary.  I knew it was a chance, but it is still disappointing for me. I am still holding for hopes for all of you currently treating.  

Susan

[susan400]

Fortunately, I have not had progression to cirrhosis, that's the GOOD News.  I am still at Stage 2 Grade 2 Bridging Fibrosis as of about 7-8 weeks ago when I had my pre-trial biopsy.   I, unfortunately, had not had any reversal on any of my biopsies.  When comparing each of the biopsies to the previous biopsies (I've had 4 total), I always had either progression of fibrosis, or as in my last biopsy, no change in fibrosis.  From biopsy #3 to #4, which was a 3 year space of time, no change.   I see that the fact that there has not been progression to cirrhosis to be a definite positive.   But, taking into consideration all the times I've treated and I've not cleared, nor had reversal of fibrosis, makes me concerned about what's going to happen with it, if I don't get a clearance over the next few years.  It's doubtful at this stage in the game that my body would just 'spontaneous clear' the virus, as having it for 23 years.  It is conceivable that I could stay in this stage for another 20 years.   It's the not knowing that's a problem for me.  Anyway, I'm going to try not to dwell on it.

Susan

[painterlady13]

Susan I am so sorry to hear this, it just sounds like this horrible disease and it's treatment has taken it's toll on you.  Maybe you can "just take time for yourself"  in NC when you get to go.  You didn't say your stage and grade... Just curious if the various treatments reversed some of the damages caused by the Hep?  Hopefully it has.... (((((Hugs))))))  Just cause you need it
Nicki

[susan400]

You and NYGirl said that same thing.  I have an interferon and Riba resistance.  I've done RIBA with every treatment until this one.   The last time I treated before this trial, I was on 1600mg of Riba and went out to 44 weeks and yet, I still didn't clear.   I have, though, been blessed to get rid of 1 of my genotypes.  Now, instead of being 1A/1B, I'm just a 1A.  I don't know what I'll do, if anything, in the future as far as treatments.  I can't say that I'll totally rule it out down the road.   At the moment, I can't even think about it.  I'm just tired of itching and tired of the on treatment/off treatment rollarcoaster.  I've been doing these different treatments always trying the next thing, etc., all the way back to 1997, 10 years, now.   Time will tell....     I do know that I'm not going to do the alternative med, nature approach.   Believe me, it's been suggested to me by various people (non-professionals) and I've even tried it a few times.  But, it's not something that I can do.   So, I'll probably be around Medhelp for awhile.

Susan

[frijole]

You know, Susan, If I were a doctor I would love to study you all by yourself.  You might give some good insight into why people relapse.  You have treated far more times than anyone else here.  You must have some kind of interferon resistance.

Good luck
frijole

[stacyb321]

Im new here - but just wanted to say my heart goes out to you.  I read you treated 8 times - you're an amazing girl!  I hope I can be half as strong as you are when it comes time to treat.

[susan400]

Thanks to all of you people, (my online family), you've really encouraged me with your kind words.  Take care of yourselves.

Susan