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Did you SVR by Boceprevir or Telaprevir?
This board saw me through a failed tx with SOC drugs and a successful tx in the Vertex Prove 3 trial.
I'm not a regular here since being cured in 2008 and lost track of many people. People like "Willy50" and "Tippyclubb" corresponded with me via in-mails about treatment options with P.I.s but I don't know what decisions they and others reached.
It would be interesting to hear who's SVR'd on the new drugs. If you have a minute would you weigh in below?
For those who don't know me I was a geno 1b. Experienced a viral break-through on SOC tx at week 36. Took a year off of tx and got into the Prove 3 arm that got VX950+INF+RBV for 12 weeks followed by another 12 weeks of SOC. Went UND between week 1-2 and remain that way. Very minimal liver damage.
My life has literally reset since SVR. Like MREME said before, it seems like a dark dream now.
Wishing SVRs for all.
miked
I'm not a regular here since being cured in 2008 and lost track of many people. People like "Willy50" and "Tippyclubb" corresponded with me via in-mails about treatment options with P.I.s but I don't know what decisions they and others reached.
It would be interesting to hear who's SVR'd on the new drugs. If you have a minute would you weigh in below?
For those who don't know me I was a geno 1b. Experienced a viral break-through on SOC tx at week 36. Took a year off of tx and got into the Prove 3 arm that got VX950+INF+RBV for 12 weeks followed by another 12 weeks of SOC. Went UND between week 1-2 and remain that way. Very minimal liver damage.
My life has literally reset since SVR. Like MREME said before, it seems like a dark dream now.
Wishing SVRs for all.
miked
Isobella SVR'd on Telaprevir and so did Andiamo - his 7th attempt at an SVR. Mremeet also SVR'd on Telaprevir. There are a number of folks also who did on Boceprevir and I don't know their names off the top of my head but there were a number of "blue pill" celebrations in here over the last while. If anyone knows, please kick in ... I think some folks could use a little cheering up and hope. Thanks.
I was hoping for more as well, maybe all the people who SVR'd on new drugs are out living their lives. I appreciate you asking
D
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Good to see your comments again!
So you are still watching and waiting...understandable as long as your liver is holding up. I'm sure that you are monitoring.
Look at all the good news coming out about PIs. The odds of people being cured in less time is really exciting.
When we left off you were considering a trial. What ever came of that?
Feel free to send me an inmail vs. talking here.
Good to hear from you.
miked
So you are still watching and waiting...understandable as long as your liver is holding up. I'm sure that you are monitoring.
Look at all the good news coming out about PIs. The odds of people being cured in less time is really exciting.
When we left off you were considering a trial. What ever came of that?
Feel free to send me an inmail vs. talking here.
Good to hear from you.
miked
Yep I remember you as you helped me so much with my endless messages. I was in the Illuminate no placebo trial so there was no doubt I got the real drug telaprevir. Fortunately, I was randomized into the 6 month arm. Although, you know I had no intentions on continuing tx any longer than that.
I have been SVR for almost two years now. By far doing tx was the worst experience of my life. I had just about every side effect possible, except the mouth sores. The first year post tx was awful also due to my thyroid, high iron and PCT. It took 8 month to resolve the PCT issue and had numerous phlebotomies.
I still have some skin issues and definitely some cognitive issues. I consider myself to be fortunate to have cleared the virus. My life is back to normal and I feel like me again. Yes tx is a distant bad memory, one I try not to think of.
Glad to hear your doing well!
I have been SVR for almost two years now. By far doing tx was the worst experience of my life. I had just about every side effect possible, except the mouth sores. The first year post tx was awful also due to my thyroid, high iron and PCT. It took 8 month to resolve the PCT issue and had numerous phlebotomies.
I still have some skin issues and definitely some cognitive issues. I consider myself to be fortunate to have cleared the virus. My life is back to normal and I feel like me again. Yes tx is a distant bad memory, one I try not to think of.
Glad to hear your doing well!
Yeah, I'm still alive and kicking. I'm self employed and my work load has been increasing to the point that I can't keep up, and so I have less time for on line.
I just read through a long Vertex thread here and it was a good read and I was poised to make a few points..... but really just didn't have time. Most days I am up at 6ish and many days come home in the dark.
My status is about the same; I was enrolled into the Phase 3 vertex trial for TVR (3 years ago; june of 2008). When I got my biopsy and it was a 1/6 ishak I dropped out to wait for a better trial. I know; it doesn't get much better than that.
I recently passed on the quad therapy trial for TVR and VX-222. I didn't like the odds I was looking at, but then again in all trials there are those arms that serve as control arms, or those which may provide insufficient dosing; that's just the nature of trials, they have to differentiate.
Anyway....at minimum I figured that some of the newer control arms may provide triple therapy and better design and support (such as response guided or with additional minor improvements of sides). I know that I should treat but I (perhaps unwisely) figure that I may have a bit more time and that there are going to be better and better options available.
For now I bide my time and wait, try to keep my head above water and nose to the grindstone. I do construction work....restoration work and it is *kinda* physical. I'm pushing the envelope on what I am sometimes able to do and I am somewhat mindful that TX....that "box of chocolates which you never know just what you are going to get" could either provide that lady or the tiger scenario. It could end up rejuvenating me (after 24-48 weeks of TX and recovery) or it could slow me down enough that It could tax my threshold ability to do my present work. I am mindful of a certain prolific and wise poster here who had to resort to voice recognition software so that he could type post TX. They do not make such helper devices for circle saws and masonry pointing equipment. : )
And so I wait a while longer......
Howdy to everybody.
best,
Willy
I just read through a long Vertex thread here and it was a good read and I was poised to make a few points..... but really just didn't have time. Most days I am up at 6ish and many days come home in the dark.
My status is about the same; I was enrolled into the Phase 3 vertex trial for TVR (3 years ago; june of 2008). When I got my biopsy and it was a 1/6 ishak I dropped out to wait for a better trial. I know; it doesn't get much better than that.
I recently passed on the quad therapy trial for TVR and VX-222. I didn't like the odds I was looking at, but then again in all trials there are those arms that serve as control arms, or those which may provide insufficient dosing; that's just the nature of trials, they have to differentiate.
Anyway....at minimum I figured that some of the newer control arms may provide triple therapy and better design and support (such as response guided or with additional minor improvements of sides). I know that I should treat but I (perhaps unwisely) figure that I may have a bit more time and that there are going to be better and better options available.
For now I bide my time and wait, try to keep my head above water and nose to the grindstone. I do construction work....restoration work and it is *kinda* physical. I'm pushing the envelope on what I am sometimes able to do and I am somewhat mindful that TX....that "box of chocolates which you never know just what you are going to get" could either provide that lady or the tiger scenario. It could end up rejuvenating me (after 24-48 weeks of TX and recovery) or it could slow me down enough that It could tax my threshold ability to do my present work. I am mindful of a certain prolific and wise poster here who had to resort to voice recognition software so that he could type post TX. They do not make such helper devices for circle saws and masonry pointing equipment. : )
And so I wait a while longer......
Howdy to everybody.
best,
Willy
He's still around here once in a while I just havne't seen him lately. Why dont ya send him a PM I'm sure he'll answer you.
All is well still SVR can't beat that right?
It's nice to see you posting again!
All is well still SVR can't beat that right?
It's nice to see you posting again!
Hi Deb - I was hoping to catch up on the many people who were waiting for PIs. Any idea what's the status of Willy50? I actually put him in touch with the doc who cured me. Hope all's well for you. miked.
I hope to be on your top line in 10 weeks.
As of 12 weeks post I was not detected with after treatment with Boceprevir.
Glad to hear your dark cloud has dissipated.
As of 12 weeks post I was not detected with after treatment with Boceprevir.
Glad to hear your dark cloud has dissipated.
Yes I started tx triple therapy with Boceprevir but I couldn't complete it for a myriad of reasons, both health and work wise. That said, there was never any doubt in my mind that Boce was doing exactly what it was supposed to do and my blood tests proved it. Boceprevir="cleans like a white tornado"!! BTW, I am working toward tx'ing again and again I will use Boceprevir!! Yea!!
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