Paranoia has set in....or have the VX people all went on vacation?

[willows]

I feel like I was watching a soap opera and somebody cut off my cable tv.  Char was struggling so much with her "29" and was looking for additional info and now she is gone, I have not read anything from her about resolution.

I did read the conversation about the doc telling mremeet that the doc did not think the 29 was of much concern and that viral rebound was usually a "major event", meaning the numbers were usually larger.  That may be true for SOC when the testing is not done weekly or bi-weekly or whatever, but for the VX folks, they are tested so much more often than a regular joe like me on SOC.  So how long does it take for vl breathru to become a major event?  Wouldn't any breathru start at tiny numbers and eventually grow to the big numbers the doc was talking about?  To not validate that there was virus present seems to be less than grasping all the facts.  God, I hope I am wrong.  Anyone here must hope the same thing.  These VX folks went thru some sh it and are still on tx, which is pretty h ellish itself.  Are they okay?  Does anyone know the middle installment of this story?

So, am I the only one worried for pds?  Am I the only one who has noticed that the talk of VX has dropped to nil here?  Crumbs, the banter of the VX folks was a bright spot in my day, a puzzle of medical insight, a quick glimpse into "what may be" for all of us someday.  Call me paraniod, call me worried, call me a nosy b itch, just drop a line here if there's anything new to say.  Heck, if it is less than positive, I will cancel my bx!!

Willows

[prettydamscared]

My ambien is kicking in now but but I just wanted to briefly ask you what your grade and stage were at your last bx and how long ago it was. When's your next one scheduled?  I can see why this would be a roller coaster ride for you, just like it is for us. Hang in there and don't be scared by the rash (if you are)because they were able to get a handle on approx. when the "rash" sets in, approx. 58 days into vx dosing.  That's extremely preliminary but my doc did tell me that seems to be the case across the board in this study. Even that tidbit of information has got to be helpful to them in determining efficacy.  I don't believe the rash or any side effects are going to be "deal breakers".  That's just my gut instinct.  My guess is everything will hinge on svr data results which were promised in the first qtr. of 2007.  They may be a bit lacking as they were in their press release of Dec. 13th, but it'll be something.  Every little piece of information that's released is a help in putting this  protease inhibitor puzzle together, right?

Now, I really am going to say good night and I'll hopefully talk with you tomorrow.
Char

[prettydamscared]

Hi,

Thanks so much for your concern and sorry not to have replied.  I left Thursday a.m. to go skiing & just got back tonight. (FYI, I passed on the skiing this trip, but it was still a lot of fun!) PLN called me Thursday after we'd left and told me a lot of people had replied to my post with questions & concerns.  I asked her to briefly post for me that I was going out of town until Sunday and wouldn't have access to the internet.  I'm so sorry to have left you hanging.  Maybe PLN did post my message for me....I haven't even had a chance to check that thread yet.  

I wasn't able to get in touch with my doctor Thursday morning before I left but will put a call in to him first thing tomorrow.  I'm beating myself up for not thinking to ask that question while I had him on the phone....it's a pretty basic question. DuH!  I was taken aback and didn't even think of it.  He's really good about returning calls so I should have an answer tomorrow, even if it's just to tell me that they have to check with the lab and get back to me.  That'd work as long as I know an answer's coming.  I will keep you updated, I promise.

Talk to you tomorrow probably,

Charlotte

[ladybug52]

Hope the times go by quick while you wait. I'm praying for your good results. I'm sure it's going to be good news.

[pln]

LOL, somebody cut off my cable tv. I know what you mean though. Char has been out of town, she comes back tonight. Char has had several UND PCR since her 29 number.My study nurse had know idea how a 29 could show up when the test only goes to 30? I take my last shot tomorrow (24) TX has been hard, but I already know waiting for post tx vl to come back is going to be the killer. Pam

[pln]

Thats no idea.

[crsrph]

i think jim was correct in his assment that if over 30 it is reported as a correct number value but if between 10-30 below the level of quantitation its stated as a number 29 . however if as pln stated her  16 and 20 weeks came back und i would think that this may have been just a last shot by the virus to rally to survive . due to the large amount of pcr test done if only taking vl's at normal time periods may have never been noticed . i think she is still good for svr and that this occurance might be more common than we thought due to the fact most people if any dont get 10 viral load labs in the 1st 12 weeks of treatment hope pds is doing well and not letting this blip in vl bother her . just my thoughts chuck

[chcnme]

Oh yes! That is good news! I was wondering, too, and was beginning to get worried. Wishing them all the very best!

[mremeet]

We're still around, just layin' low I suppose. I think PDS went skiing with her family, she'll probably be back anytime now.

[willows]

It has been almost three years since I was on tx, but when I read your line about "take my last shot tomorrow", man, everything about IFN that I hated came back to me.  I am so glad it is your last shot, I remember it took me about 5 days and I felt like a new person.  Like I was reborn.  Even tho I knew I had suffered vl breakthru, to take that last shot was the happiest day of my life.  So you enjoy the return of feeling better while you wait for your test results.  

I've got an appointment for another biopsy and then one with my Hep C doc, if I have advanced much, I'm not sure what he will want to do.  He has had me wait for two years now, sitting on my hands, but I think the do-nuthin time has come to an end.  

I'd rather take a whoopin than go back on IFN, can't tell you how bad it scares me.  Couldn't this virus suck just a little less?  I will be happy for you and your last shot and put my head back in the sand until I go back to see my doc.  The view is really okay from there!

Willow

[Imagine]

LOL, Willows!
Reminds me of a song, "All I Want Is My MTV" :)
Also you can call me Johnson, you can call me Smith, you can call me anything but don't call me Uninterested. :)
Everyone needs a little break from discussing their situation. I think pds and others involved will let us know.

PLN, waiting for those results can seem like an eternity but hang in there and GOOD LUCK!!!!!!!!!!!!!!!!!!