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Clincal Trials/Protease Info

Hi everyone.  I am new to this forum and am hoping to gain information for my Aunt.  She was diagnosed approx 4 years ago with Hepatitis C (Genotype1A).  She has been on treatments off an on (Interferon ?, I think and possibly others) and apparently nothing is working.  She is 54 years old and living in California.  I am in Illinois, as is the rest of our family and we feel completely helpless as we have so many miles between us.  She told us that her Dr recently took her off of all treatments and said that they are not working.  He mentioned possible Liver transplant and also mentioned something about "ProTease" but apparently stated to her that it is not FDA approved, that if she were a candidate for a Clinical Trial he would not recommend her for it as he has never receommended patients into trials!  This made no sense to me at all and I was wondering if anyone has any information at all or knows of someone we could speak with to obtain more information, at the very least, on this Treatment option and any clinical trials that may be out there.  Any help at all would be greatly appreciated.  Thank you so much.
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Avatar universal
Check this out:

80575 tn?1207132364
To best help your Aunt, you can start by educating yourself about HCV, treatments (tx) that are available as standard of care (SOC), in clinical trials, experimental, etc.

We abbreviate a lot here so I'm showing you some of the shortcuts.

Also it would help to know more about Aunt's condition. Her age is 54, geno 1a.  Find out what STAGE she is, 0 = perfect liver; 4 = beginning of cirrhosis.  Find out how her GRADE of inflammation; does she have liver cancer or liver failure, etc.?

You indicated that your Aunt failed SOC.  What type of Interferon, with Ribaviri?  What was her starting VL (viral load); did she get a 2 log drop by Week 12 (2 log means if she started with an initial VL of 800,000 at Week 12 she should be 8,000 or less to be considered to be responding).  There's a lot to learn.

links1999 above gave you a place to read up on new drug advancements; invest some time researching the Protease Inhibitors (PIs) and Polymerase Inhibitors.  New trials can be found at http://www.clinicaltrials.gov then type in HCV.

I failed SOC and tx'd again on the Vertex VX950 x with this new PI.  I think I'm cured because 12 weeks after stopping tx with VX950 I'm still undetectable (UND).  In March I'll be tested again and if still UND then I'm considered cured.  94% of people where I'm at go on to be cured.

Vertex makes VX950, Schering Boceprir, Roche R1626 are pretty far along.  VX950 may be approved in the next couple of years.

This site; Janis & Friends; HCV Advocate; HIVandHepatitis.com; AASLD 2007 are all good places to dig in.

As for your Aunt's Doctor, I don't like his attitude.  If she lives near a large city check out what universities have HCV clinics and participate in trials.  They are listed at htpp://www.clinicaltrials.gov.

Good luck with your research and come here anytime with questions or comments.

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