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VX Prove 1 - 24 Weeks Post TX
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.
I answered your question on the other side (the coummunity board). I see Dr. J. on Mon. July. 30th.
Susan
Susan
That is wonderful news, APK!! I'm smiling big (huge) just having read your note. It's been several months since I've been by here and also months since I've kept up with anything on VX-950) and so to come by and read your note the very first thing (on the drug I have maintained such high hopes for, as so many have) was good good medicine! I know you must feel a tremendous amount of gratitude to Vertex (and they do to you!)
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!
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!
Its great to hear from folks who were part of the journey, and a major part of my HCV education. I could barely spell HCV when first diagnosed, so there was lots of research and learning to do. Some of the best insights into treatment came from the many valuable posters here who seemed to have an indexed archive of research papers and facts. Impressive!
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 :-)
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 :-)
Way to go apk. I know we've had our differences, but I'm really happy for you. You and pln are the first vertex borne 24 week SVR's that I'm aware of - possibly the first or certainly amongst the first to achieve such a thing. I'd say that should warrant a wikapedia reference at the very least.
Anyway, great job and best of luck. Enjoy the rest of your life, it's probably going to be a long one.
Anyway, great job and best of luck. Enjoy the rest of your life, it's probably going to be a long one.
Consider yourself a very bright light in my dark tunnel. Thank you so for being so brave and helping pave a way. You are part of the greater success many will be better for. Hope - just what I needed! L
hey, hearty congrats! you labbies (my new name for you, we can ditch it if y'all want:) are so great about letting us know step by step what's going on, hopefully, y'all get SVR!
This is fantastic news! Congratulations! I can feel your excitement in your post.
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!
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!
CONGRATULATIONS!!!!
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
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
Ooops, forgot to add that I was Geno 1B.
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 :-)
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 :-)
I, for one, am glad that I'm not on Riba. I've come to realize after this being my 8th time of treating, (my 1st w/o Riba), that my system really does not handle Riba well at all. I double dosed Riba last course of therapy and it still didn't give me a remission. I did that double dosing of Riba + daily 15mcg of Infergen. I'm not giving up my hopes that the Group C that I'm in, could possibly still give me a clearance. VX is the only drug of this mix that my body doesn't have a resistance to, yet. I've already got interferon resistance and now Ribavirin resistance as well. It really doesn't matter to me though. I'm not running around exposing people to my resistant virus. Anybody that is in that close of a vacinity to me, already knows about Hep and is able to take precautions, so the only person my resistant strain is going to affect, is me. I am just hoping for the best and being a labrat. I have faith that if God wants this to work, it WILL work, no matter with Riba or w/o Riba.
Susan
Susan
Congratulations APKhaos!! well done. You can now put HCV behind you. I am so happy for you. I will find out next week. you are CURED!!!
Hello dear friends.Congrajulate to ur SVR.
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.
lol..... I'm so pleased to hear that another one of the trial participants has cleared. Thanks for posting APK. I'm really happy for you and for the prospects for many of us. Hats off to all lab rats!!
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
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
Congratulations AP. I hope that someday we can all experience the feeling you describe!
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
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
CONGRADULATIONS, WOOOOOOOOOOOO WHOOOOOOOOOOOOO!!!!!!!!!
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
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
Hello dear friend.Congrajulate to ur SVR.
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.
Congratulations APKhaos! It's hard to believe that you're 6 months post tx already. I've been following your progress from the beginning and this is fabulous news (and of course I'm jealous). Good job.
Hey Pammie! Your good news is just a few days away, too.
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!
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!
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