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VX Prove 1 - 24 Weeks Post TX
by APKhaos, Jul 02, 2007 12:00AM
The story so far....
- Initial HCV infection around 30 years ago during surgery.
- Confirmed HCV diagnosis in 2005
- Joined the Prove 1 trial and started dosing in July 1006
- Initial conditions included VL = 26,460,000, Liver histology stage 3, elevated ALT & AST
Reached 6 months post tx follow up date last week. This was a simple one tube draw this time. All my labs have been in teh normal range since maybe a month or so after tx, so VL was really all I wanted to know anyway.
Results back today are UND!!!!!!!
Six months clear = good enough for me to call CURED!!
Can't tell you all how good this feels. I'm in far better than post tx shape, with much increased energy levels and more, but the shadow of a possible relapse has been hanging over everything UNTIL NOW!!
Can't tell you how grateful I am to the folks at Vertex to makign this possible after just 12 weeks of VX + SOC followed by 12 weeks of SOC. After facing a 50% shot at SVR after 12 months of SOC, the Prove 1 trial was a winner for this lucky lab rat.
All you TXers and triallers keep the faith. Its truly possible to be rid of this bloody dragon.
- Initial HCV infection around 30 years ago during surgery.
- Confirmed HCV diagnosis in 2005
- Joined the Prove 1 trial and started dosing in July 1006
- Initial conditions included VL = 26,460,000, Liver histology stage 3, elevated ALT & AST
Reached 6 months post tx follow up date last week. This was a simple one tube draw this time. All my labs have been in teh normal range since maybe a month or so after tx, so VL was really all I wanted to know anyway.
Results back today are UND!!!!!!!
Six months clear = good enough for me to call CURED!!
Can't tell you all how good this feels. I'm in far better than post tx shape, with much increased energy levels and more, but the shadow of a possible relapse has been hanging over everything UNTIL NOW!!
Can't tell you how grateful I am to the folks at Vertex to makign this possible after just 12 weeks of VX + SOC followed by 12 weeks of SOC. After facing a 50% shot at SVR after 12 months of SOC, the Prove 1 trial was a winner for this lucky lab rat.
All you TXers and triallers keep the faith. Its truly possible to be rid of this bloody dragon.
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I wonder when vertex is going to release the data on the 24 week results
Ron
In addition to participation in the study thanks for the many excellent posts in which you all so clearly explained what you were going thru. We all owe you a debt of thanks for that as well.
PS.......I shouldn't hype the company too but they seem to have made a great compound. It will be great when we know just how good it really is. Here's also to that happy day.
Willy
Please tell me which genotype you had?
Did you use VX950 monothrapy or with peg interferon?
How a bout side effects? explain more plz.
Please tell me which genotype you had?
Did you use VX950 monothrapy or with peg interferon?
How a bout side effects? explain more plz.
I am like so happy for you and admittedly jealous of your HCV negative status....wow, just think about the fact that you don't have this disease anymore! HCV negative....gone!
I've been watching you for some time now and was hoping this would be your outcome. Go celebrate and keep us informed about how you're doing in the future.
Since my diagnosis, three years ago, I have been a diligent student of HCV, treatments both SOC and trials and protocols. I personally have come to the conclusion that for geno 1s; 12 weeks of VX950+INF+RBV followed by 12 additonal weeks of SOC is the secret sauce.
I'm week 8 in Prove 3. I'm getting Ribavirin so I know that I'm not in Group C. Public knowledge states that Arm C will only receive VX950+INF only, no Ribavirin. Dumb move by Vertex in my mind because if I was designing the trial, there is no way that I'd have Arm C without a Ribavirin placebo.
My gut tells me that I'm not in Group A, the placebo group, because I "feel" different with this tx. Another dumb move by Vertex in my opinion is to subject people who already have proven that SOC will not work for them but we'll put them on the SOC rat poison for up to 24 weeks to see how they fair....statistics say 1-3% of non-responders may clear on their 2nd tx of SOC. I think Vertex should have had added an Arm E that included 30-50 Vertex researchers and managers that would be put on 24 weeks of INF + Ribavirin just to verify the safety and efficacy of this SOC!
If all the above is true that could leave me in Group B which is 24 weeks of VX950+INF+RBV followed by 24 weeks of SOC. In my opinion this is overkill.
Or in my dream Group D which is APKhaus' protocol; 12 weeks of VX950+INF+RBV followed by 12 weeks of SOC. I really believe this is the winning combination.
I'm off on a rant but my primary reason for posting today was to wish APKhaus well!
Mike
Thanks to all for the kind words. The thing that surprised me most about the end game was how seriously worried my family and close friends remained even up to this point. Despite the strong signs ever since we saw unblinded VL results at week 20 of TX, the chances of the treatment failing were still high in their minds, even though they were happy that the 'progress scores' were good.
This six months post result is the first time they've heard me use the CURED word, and that made a big difference. Janet & I were up at Watkins Glen with the race car this weekend. The number of people who remarked on how rough I was looking last year vs now was really surprising to both of us. The majority of your friends will treat you as if everythimg is fine, despite being worried as hell that you look like a grey shadow. I thought I soldiered on fairly well, but aparrently not :-)
Susan
Its been terrific having contact with you and our other fellow travellers in Prove 1 right through this little adventure. The MH community in general has been a truly valuable resource [OK, with a little insanity thrown into the mix], but being able to share questions and experiences with our fellow lab rats has been golden.
You and I have been just a week apart at every stage for more than a year now, so for me its kinda like watching over a sister. You go girl. The C word is waiting for you too!
I'm in my 10th week of Prove 3 and I'm PRAYING I'm in Group D (12 weeks VX & SOC followed by 12 weeks SOC)....
Again, congratulations on your SVR!
Susan,
I have tried to contact you, but I obviously have the wrong e-mail? I would love to talk to you and see how you are doing?
SJL
I hear you about, that a clear for me. That is definetly something to cheer for.
HAVE A WONDERFUL FOURTH, YOU NOW HAVE INDEPENDENCE!!!!!!!!!!
Cajun
;)
And a huge thank you to you for all the times you put information up here to help others and to keep those of us interested informed. Your input was always much appreciated by me (and others' was too). Your name and some others became synonymous with VX-950 when I was reading here regularly (I guess that's why I read your note first - lol.) I'm glad I did read it first! It's been great to see you and others and to get updated.
Way to go! Wishing you continued success and wishing everyone the best!
Anyway, great job and best of luck. Enjoy the rest of your life, it's probably going to be a long one.
Its also good to hear from the new folks just embarking on this journey. You guys have found a deep well of help and support here on this forum. Use it well.
I'll keep checking back here from time to time. Still have more follow-up visits to the trial clinic at 28, 36, and 48 weeks post-tx, but chances are that these will simply confirm the SVR. If not, I'll be back here and lining up for whatever comes next :-)
Susan