Our first new phase II VX 950 person?

hey, Nick, I read your post below, you were kind of lost in other comments.  But I felt it was important enough to start a new thread and welcome you to a good place, you can come here and talk, ask questions and be admired and praised for the chance to do VX950.  You be a lab rat now and be proud of it.

Lots of smart folks here, we got spanked a little for some of our posts, so a few of us are still in snits.  But I think we are still family and this too will pass.  I can not emphasise to you how much we would welcome your progress, a few folks like me are in a place where VX950 is our last hope.  So, Nick, heres hope to ya and a big welcome!!

Keep in touch.

Willow

[prettydamscared]

Hello Nick, I second what Willows said.  Welcome to our forum - we look forward to hearing your experiences with Proof 2.  BTW, I'm currently in week 18 of Proof 1, but we don't get unblinded until week 20, 21, 22, 23, or 24.  We're still trying to find that out.

Speaking of vertex, APK where are you?  Didn't you have your week 20 visit last week, or am I mistaken?  A few of us here have been eagerly awaiting your results.  Did you find out if you were getting the real stuff or placebo?  Were you able to get all of your viral load info and, if so, when did you clear?

Mremeet and I are still waiting for our study nurse to get back to us as to when we'll be privy to that info since we were told we wouldn't be able to get it at week 20. Looking forward to hearing from you.

Char

[prettydamscared]

Hey, I just spoke to our study nurse again.  I initially called her last Monday to ask when we'd get results so it's been a week.  She still hasn't heard from the monitor and asked if I minded if she not "bug" the monitor.  She said she'd put another call in later this week and explain that she has someone that's "anxious".  Can you believe this?  I'm anxious because I want to know if we are or are not going to be unblinded at week 20 as we've been promised all along. Don't you think everyone in our study is going to want to be unblinded at week 20 because that's what we've been told all along. This is craziness.  So, where we left it is that we would give it another week.  If anyone else is in the Proof 1 study and knows anything about their unblinding process, I'd sure appreciate hearing about it.  Thanks in advance for any info.

Char

[mremeet]

I'll call you this evening. Talk to you soon...

[nick m]

Thanks for the welcome. I was moved and it reminded me that I'm not alone in this and its actually very exciting. I've got my final screening appointment wednesday and depending on the outcome of my last-minute biopsy last thursday (ie no scirrocis - forgive the spelling) I'm starting treatment. I've known many people do treatment from alpha interferon to combination and i always dismissed it as pointless - thought if i lived right and did milkthistle and chinese herbs it would go away or be manageable esp as 1b responded poorly anyway and my ALT's were ok. a decade later i have a different understanding and raised ALT's had got me lobbying for combination treatment. I was refused 3 years ago then discouraged earlier this year - told erroneously there was only a 10% success rate for genotype 1B. Then this came along. A phone call from the Hep C nurse in October tentatively offering a possibility to do this trial (or alternatively do combination therapy and no biopsy necessary - I've had 2 already). I checked out the new drug with Charles Gore at the Hep C Trust (i didn't even know its name) he said 'go for it - its had thrilling results in the states with geno 1 - and keep us informed (being english he uses the more seemly epithet of 'guinea pig' rather than your factually more accurate 'labrat'. Truth is i'm proud to be either. I also heard you say that for you and some others this is maybe the last hope. I hear you and honour you. The trial's taking place at the royal free hospital Hampstead London England. I'll keep checking in. Thanks
nick m

[NYgirl]

You sure aren't alone in this.  Im only on regular combo treatment (week 65 of 72 this week) but certainly get what it's like!

There are some TOTALLY awesome people in here and sharing experiences and side effects and just being able to blow off steam sometimes is such a great feeling. People in the "regular, nonhep world" just don't get it at all what we go through.

I'm glad you found this place - I think you'll really get a lot out of it.

Of course I"m dying to see how it goes with the VX.


PDS / Mr - I'm so mad that they are treating you guys this way right now I want to SPIT.  They said 20 right? Not someday in the future!  Give it UP you guys have been tough enough to be in the dark for TOO LONG I don't know how you take it!  I'd go crazy!(er) than I already am!!!!!!!!!!!!  You souls are much much hardier than I am!  Gosh I yell at the nurse if they don't give me my CBC results quick enough!  :)

[mremeet]

nick - that's interesting what you said about 1b's having such a poor chance of SVRing. I had previously heard that 1b's were the toughest to treat in the past as well, and always assumed it was true. But recently I checked on that and wouldn't you know, it just ain't true. In fact, I found a recent study that suggested 1b's are actually MORE responsive to IFN/riba treatment (and likely to SVR) than 1a's are. So don't worry, you've got a fighting chance even without the VX...with it, you're way in the money.

Also, I'm in the VX study right now, when you get started come back often and we can give you the...uhh....loooow downnnnn, if you know what I mean. ;-) That is, if you wanted to know the low down...and not everyone does!

nyg - Thanks for the kind words nyg, you're a real sweetheart. And you're right, being blinded all this time is more emotionally taxing than I had imagined when I started on this journey. I know PDS and pln feel the same way. Add into that the often confusing and contradictory information provided by our study nurse, especially when contrasted with apparently different rules at other study centers. Very aggravating!

[sunspot]

I see the addy is already posted. It's based in the UK but there are members worldwide.

[WillPower]

Where is the "Hepatitis C" forum?  Thanks.

[CitizenSmith]

Hi nick m ,if you have the time and inclination we at:

http://www.ronmetcalfe.com/hepcforum/index.php

would love to follow your progress lots of people over there are also looking at vx950 as their next possibility.Yu can be assured of a friendly welcome.It's the forum referred to ^^^^ up there and is UK based.

[sunspot]

Do you hang out at The 'Hepatitis C' Forum? A nice group of people there.

[dj83]

Just out of curiosity, how do you get involved in an experimental trial?  I've always wondered that, but never had a reason to look into it.

[chcnme]

Nick Congratulations! I just think it's SO exciting seeing another start in the VX!  I'm glad you came to the decision when you did that the herbs just weren't the way to go.  Sorry you were discouraged to not treat before and were told you only had a 10% chance of responding.  I had read some things recently (but didn't think it wasn't from reliable sources, i.e. data from any studies) that was saying something about 1Bs being "more difficult to treat than 1A's", but like mrmeet said, "it just ain't true!"  I'm glad you got the right information and that you are going forward with "the real deal".  Even if you don't get the VX and get a placebo instead  (or you go with the regular), you will be getting Peg and Rib (at least that's what I'm understanding now from your note), and your chances of responding to treatment are good!  It's for certain if you do nothing your chances are zilch&zero, and now that your ALT's are up, it's very important that you treat.  

Be proud to be a lab rat and guinea pig!  Yes!  Not only are you trying to help you  (which is the most important thing of all) by be willing to participate in these trials, you are also doing something wonderful for everyone else out there who's waiting on "science".  

So you've had two biopsies already eh?  And you're going to have another for the trial?  I was SO bummed I did not get in the VX here in the states. Waited on pins and needles for about six months to hear a "Yae or Nae", and when the word came "Nae", it was like being shot and severely wounded and not killed outright!:) Just kidding - it wasn't that bad, but it was almost that bad (if that gives you any idea how  much I think of VX :)  I found this forum googling VX-950, and it's a great place with so many knowledgeable people and so many who are willing to help, give support, give their views, etc.  It's just a great place.  Lotta great info, and a lot of laughs, too!

I just wanted to say hey again and that I'm wishing you the best. Keep us posted, OK?!  

And PDS! Don't those kinds of comments make you wanna reach in through the phone and grab her up by the top of her blouse and say "What did you say I am??"  lol - You hang in there!  Hope you hear something soon.  How are you feeling in general?  I'll see you around!  Smiles!

[APKhaos]

Great Prove 1 unblinding news this week.

First, its Arm C for me, which means I definitely dosed with VX950, and that there are just three more shots to go before TX is done. Woohoo!!

Second, it seems I've been UND since sometime in the second week. Still waiting for details, but knocking the VL down from my start point of 27 million to UND in a week or so is another strong data point. This is Geno 1B.

Third, all that matters now is holding UND status for the next 12 months. I'm confident.