Hey Buggers!!  I don't come by often anymore, either.  I've not had much time lately, and when I do have had time to drop by, I usually just read the notes very quickly these days and .... don't have time to respond.  I've also been in a "quiet" mode  (or mood), too.    

And I totally agree with you - Mremeet has been fabulous with the info he's had on his end with his take on things, and I have very much appreciated what he's had to say with respect to his experience with the study and his opinion on Hep C and tx matters (I think he knows that.)  He has helped me many times and has been generous with assistance -- to everyone who asks for it.  As far as I can tell, so has APKhaos.   I've not been here the entire time nor have I examined notes to the extent I believe I can tell someone else they don't have their story straight.   I just don't like to read that kind of stuff.   It makes Hep C all that more depressing.  (Guess I shouldn't read it then, eh?   lol.)    For all anyone knows, trial coordinators might be monitoring boards for information.  I barely know APKhaos and infact don't know him -- only what I've read here, and I have read quite a few notes by him and have no reason to believe he is anything other than who he says he is.   I refuse to be swayed by accusations made by others  (even if it's the majority making them) when I haven't seen something with my own eyes yet  (and in this case,  I haven't seen it with my own eyes.)  

Anyhow... I am glad to see you're doing OK  (or that you are at least still here - that means you're alive and kicking ! )    Do you still have your thermometer handy?  hehe.  I put my box of salt away, too.  My thyroid appears to be OK according to labs and palpation by docs,  (they say there is no prominence)  and so I've concluded that if there is a prominence like I seem to think there is, it's probably just a tumor growing in my esophagus that will some day be the size of a grapefruit and can't be denied :)  

How is the SOC going for you?!  You feeling OK these days?  Still hanging in there?   I sometimes wish I was on SOC and getting this treatment behind me, but - tis not the case, and I have no regrets, I suppose.    I'm still waiting to hear on the HCV 796 or... better yet -- I'm hoping for good data to be released on VX and to FEEL in a better position to hold off some more - even if it's a few years.   I'm not really "hip" on the 796  (especially with no rescue drugs). And if I go with SOC,  it's not going to be at a clinic 3 hours away when I can do SOC here (locally).  I went to Duke for VX.  Oh well.  

I also want another biopsy before I make any tx decisions.  Even though it's been close to 4 years,  Duke refuses to get another.   Says I'm fine and don't need one.  Says HCV 796 doesn't want one, either.   This second hep doc said he would get one if I want one.  I was grade 3 / stage 2 in June 2003.   Labs have been OK since that time  (except platelets).  I've had this virus for 33 years. I deserve another damn biopsy without getting in an arguement over it, ya know, and so - I've found a hepatologist who agrees.

This past month, I've put Hep C and any treatment decisions on the back burner.  If Duke thinks I'm doing so fabulous liver-wise that I don't need SOC and can wait and wait some more on HCV 796 and don't need a biopsy and don't need rescue drugs anymore, well - I think I need to wonder about some things with respect to  "state of the art" research centers.   They are considered "state of the art" for a reason, and for some strange reason I'm  beginning to think it's not ALWAYS because they are doing hundreds of thousands of patients such a wonderful service, ya know?  Oh sure - yeah they do that too,  but ...I think you know what I mean :)  

Let me shut up :)  Good seeing you and talking to you!   Hope to see you around some.   You hang in there.  Whew - I talked enough today to last a month eh?  hehe!  

I surely understand your frustration. So imagine mine.

This instance is typical. I make a simple informational post, based on fact. Out of the clear blue sky, mremeet turns up with a raft of misinformation and hearsay and falls easily into his conspiracy theory riff.

Despite having now confirmed that his post on this thread was entirely wrong as regards the lab report contents, he does not have the spine or the decency to admit a mistake or apologise for yet another false accusation.

Nobody going through the uncertainty of this disease should be subjected to the kind of baseless accusation and innuendo that I'm getting from this whacko.  

APK - Well for once at least you've answered a question directly and without evasion. Congratulations, because that's a first. One of the reasons you've taken on a fishy smell is because you've been asked very specifically and directly several times about legitimate contradictions in your story. And when these questions have been posed to you, you either don't answer at all, or you respond with some sort of non-sensical/illogical retort that does NOT answer the relevant question, usually combined with some kind of ad hom.You responded this way (or not at all) to nearly every question I've posed to you (and not all of them were posed to you in an accusatory fashion either). Just like the last question to you regarding your 8 week labwork - you respond with a weak ad hom combined with an irrelevant reference to your 4 week labwork (which is obviously not what I was asking you about, nor what you had posted the results for in the first place). And of course your latest accounting for when your 8 week post tx date was conflicts with some of the treatment stop and start dates you've provided in the past. And as you well know, you've been asked about this many times in the past. You never ever explain yourself, nor provide any reasoning whatsoever behind why you have provided various/conflicting dates. And like I explained before, when you take into account our trial logbooks which must be filled out multiple times a day, every-single-day (with year, month, week, day, and times all referenced from the exact start date) combined with our lab hardcopies which have all of this same info printed directly on them AND the strictly scheduled office visits (which must be scheduled, remembered and adhered to by the patient)...then "forgetting" when you started, stopped or what week you're on either during or post tx is downright puzzling. Your explanation for this?? Nothing, nada, stony silence.

And before I decided to ask you these questions, I first asked myself - Self, would I be offended if someone queried me about the specifics I've provided on this forum and any possible inconsistencies in those specifics? (which had at least some kind of reasonable premise) And self, would I have any problem whatsoever explaining and clarifying any suspected inconsistencies in my telaprevir trial experiences to another trial participant who thought I might be disengenous in some way? The answer to those two questions was an immediate and definitive NO, and NO (respectively). If someone started questioning my veracity in regards to my participation in this trial, and confronted me with (seeming) contradictions in my story, then by god I'd step forward with vigor, enthusiasm and zeal and politely set that person straight with the FACTS. And I wouldn't take it personally at all, in fact I'd find it humorously curious to see if I actually did manage to say anything that was somehow contradictory. I'd want to get to the bottom of it right away and find out what in the world that person questioning me was talking about. And the reason I would quickly and enthusiastically do this with utter confidence and forthrightness is because I know what the facts are. And the reason I know what the facts are, is because I'm for real. I'm actually experiencing this trial day after day after day in all of its glorious detail. So I don't have to worry about keeping stories straight, or remembering what I said earlier, or forgetting when I stopped or started, or what my pills tasted like, or what my rash was like, or when my labs were taken, or what's on those labs, or anything else for that matter. When you're actually experiencing something day after day after day, giving an accurate accounting about that experience is easy (barring any trivial typos or IFN induced oversights). Especially when you have to keep a daily, dated diary of that experience. Everything falls into place - it's simple, that's the great thing about the truth. So it confuses me why you don't feel the same, nor can keep track of what you've said as well as any of us here (and I watch what the others have said too, and none of them are like you in this regard). Does that seem THAT unreasonable to you? It doesn't to me.

Anyway, it's good to see you respond and go on record with your results. Thank you for that, I'd like to see more comments from you helping to clear the air. And to explain a bit further, your posted 8wk results (which included ALT and AST) were quickly noticed and they actually prompted a specific query to a Prove 1 trial nurse about whether or not Vertex was measuring ALT and AST at 8 wks post tx. The nurse actually called Vertex and inquired as to whether any other trial participants (nationwide) were having ALT and AST measured at 8 wks post. The answer came back as a definitive "no", barring special problems/circumstances (which obviously you're not having). And another group C participant was told their 8 wk bloodwork will NOT include ALT/AST for that reason. So that's what prompted the question to you. Hopefully you don't find it offensive and can understand on some level why it is being posed to you?

But, maybe this trial nurse got it wrong, or she was somehow misinformed by Vertex? Possible I suppose. I guess we'll just have to wait and see what the others post tx labwork consists of. In the meantime why not try and see it from our perspective for once? Why not be a little more understanding and forthcoming from now on? If you do, I promise I'll definitely keep an open mind and be much more willing to give you the benefit of the doubt.

Guys,  I really appreciate the information that both of you post here on this forum.  You are both intelligent and well educated about the topic of HCV; I've learned a lot from your experiences....especially as I'm considering entering into the Prove 3 trial.  Where else am I going to get the first hand information that you guys have?  Thanks for sharing with all of us.

What I don't appreciate is the attacks made at each other.  It's absolute **** having to sort through your bickering to get to the knowledge that both of you post here.  You seem like too intelligent of people to go to that level.

Do us all a favor and tone it down, please.

Mike

haven't seen you post in quite awhile. How are you doing? I'm not on as often, maybe I just missed your posts. Guess I'll go read what all the fuss is about. Mremeet is usually a very considerate person, really haven't followed the trial stuff since I'm on SOC. Take care.
bug

whew - I went back and read the stuff from Monday.   When I posted "awesome awesome" on Monday to your good news,  I had only read your note from that day and a few posts down.  When I went back just now to re-read the entire thread, I got purely nauseous and dizzy while reading  (to see the allegations again and the fault-finding and personal attacks just made me pure feel ill feeling.)   I mean.... if a spy IS here, who cares as far as their treatment or future treatment needs??  Does someone think a spy is going to impact their future treatment if a spy IS HERE?  I guess if someone is here on account of their portfolio - well, then all I can say to that is what a brilliant way to forecast and manage one's investments.  The results from VX are going to be what the results are going to be - period - no matter WHO on this board says WHAT about PROVE 1, 2, 3, phase II / phase III.  I'm grateful to everyone who has given information on their experiences with VX-950.  I just think it's "trippy", for lack of better words,  to be reading the spy stuff again.  I don't know whether to laugh or cry.  I can't help but wonder if HCV 796 is going to implant a spy here when their stuff gets rolling :)

Anyhow... I'm still glad you got good news.