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1554289 tn?1297130104

EOT +4 week BAD NEWS

     EOT +4 week PCR results revealed HVC virus load @ 11,000. I  had a RVR and was UND @ weeks 2-12 at which time my study/treatment arm ended all my Tx. I am a geno type 1 early stage 2 Fibrosis who was in the Vertex-222, Telaprevir and SOC study.
      Tx basically kicked my A$$ at the end of which  I was experiencing some Retinal and vision problems which concerned my Physician at the time, thankfully all have subsided except a half dollar size rash on my abdomen.
      I am not really to devastated however was told I probably won't ever treat with Interferon again due to Sx leading a growing concern how long it will be before Interferon will no longer be part of SOC should my need for Tx arise sooner than I would expect,,,,
When my study nurse spoke with me she, off the cuff, suggested maybe 12 weeks simply wasn't enough time which IMHO I am whole-heartedly in agreement with.
Keep on Truckin'
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1554289 tn?1297130104
As I stated I am not really devastated or anything mostly worried about how I will treat in the future and know I will remain positive in any case afterall I have had HCV for 25-30 years and no point in getting down now. Thanks for all comments too.
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Avatar universal
Like everyone else I am sorry you didn't make SVR.  I think that you're wise to stay positive.  RobertBeWell mentioned the Lambda interferon and you may want to speak w/ your doctor to see if there are any trials you could get into.  (There are a few threads on here re lambda.)  Wishing you courage and good luck,
Susan
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Avatar universal
sorry to hear this news. keep your head up. something will come along in the future to help you.
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1554289 tn?1297130104
As far as knowing which dose I received (100 or 400mg) that is still blinded but  was told I should know soon. Again my study nurse indicated more would be learned at the Fall meetings she will attend....
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Avatar universal
Sorry to hear that Steve. Perhaps you can look forward to the new Lambda Interferons in trial now. There are supposedly much fewer side effects. At stage 2, at least you have time on your side.

I agree with the longer tx time as well. My doctor basically told me the same thing. He said:

"We treat it till we can't detect it, but even when we can't detect it, we know there is still some there. That is why we treat for so long - to get the ones we know are there, but can't measure."

Best of luck with your next go round.

RBW
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Avatar universal
I am very sorry to hear this.  It's bad news for you and bad news for all of us.

Many years ago they did a triple therapy arm with the option to stop at 12 weeks.  I think they ended up with 17 people +/- end had about a 40% SVR rate.

They once again have a small group and we will see what the SVR rate is when the numbers are tallied.  We will also have a sense of viral kinetics; how fast the viral load drops and the effect of the kinetics on SVR rate.

Do we know which dosage arm you were in?  The 100mg of VX222 or the 400mg?

I'd guess that tuning this form of TX will be the dosing and duration, maybe emphasis on the duration.  We may here more on this at the Spring EASL; preliminary results.

Very sorry Steve. There are still a number of excellent drugs and therapies coming.  You are a responder; something will work.

Best,
Willy
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Avatar universal
I am very sorry for your outcome Steve.
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1491755 tn?1333201362
I'm sorry to hear this.
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