Thanks Malcom

We'll youy VL is better than mine  main thing is UND and all seem to agree on that for now      And the Standard?  I agree Has to be set , this is ridiculous   but it's all crazy

Summer must be setting in down there    Your catching alot of fish lately   We usually just drown worms out here

BS  

Mary Jane wrote:

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Ditto ...Quest Labs here... @ Bills to me from what I read and God knows I'm not a Doctor nor did I stay at the Holiday Inn..  you have been and are  still are UND... chillax my friend.. your gonna kick Dragon butt this time.. peace and love MJ

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 thanks MJ U too

   That sounds great  coming from you   I would gladly share some Platelets RBC HB whatever you need if I could   And i'm wishing you the best of luck so dose everyone else  

What still make me wonder is ( after breakthrough in June ) the original starting VL was 300,000,    then end of Week 2 was " Dect 26 "      week 3 Det < 25     week 4 was Det < 25     They looked into what this actually meant then said < 25 was UND Is that true? 

I'm trying to justify in my own head why they want 48 weeks out of me this time    If I didn't do the back to back TX  I would gladly  do 48 without complaining but by adding back to back Tx puts me at constant 96 weeks of Peg and Ribva when im finished I really think I should cut this down if I can  ( BTW I'm just bitching it is what it is ) Who the hell said Whatever don't kill ya  Makes ya stronger???? ( a lot of bad words in my head LOL )

thanks Malcom

Bill S

Hi Bill, this is from the Virologist/Molecular Biochemist at my lab.  Det<25 means there is viral material present, but the amount can't be quantified. <25 TND means the Target (synthetic piece of Viral RNA) cannot be identified. Why the hell can't this be standardised?

Hi Bill, good looking blood tests- do you want to swap?

My Lab. used the same Roche PCR test until April, 2012. Now they use a newer test, labelled 'vers. 2.0'. The only difference is the LLD. It has changed so instead of ' <43 TND ', it's now '<15 TND'. So, you are Undetected!- congratz.

Ditto ...Quest Labs here... @ Bills to me from what I read and God knows I'm not a Doctor nor did I stay at the Holiday Inn..  you have been and are  still are UND... chillax my friend.. your gonna kick Dragon butt this time.. peace and love MJ

I use Quest also, <43 not detected.

Phil G wrote:

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I also used Quest. "<43 not detected" is as good as it gets. Congrats.

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 Thats good to hear Phil  You how things can get in your head and can't get rid of them

Thanks

I also used Quest. "<43 not detected" is as good as it gets. Congrats.

 OK Got the 2 files attached  way at the bottem

First of all Week 16 doc says still UND

I'm adding to this thread        Because I keep getting different readings about viral load

Anybody know how I can find out if it's just test methods  or is the VL going up and down ect.

Below the  Aug 20, 2012 post is what they said about week  2 & 3  shows (1)  number < 25  I was using Labcore at the time  Labcore never said  in the result  " Undetected"  But the doctors have been saying that's what < 25 means  " Undetectable "        Note: The Doc's did said at week 4  they confirm < 25 is UND     I didn't get copies on all of them    Any test after that was said to be UND  I had a lot of delays w/ Labcore so

Now I go to Quest in NY  3 day turn-  have a different way of showing  the VL    I am now at week 16 still saying UND  but these readings are different and have been since week 12 but they do say NOT DETECTED now there are 2 readings shown

HVC RNA QN, REAL TIME  PCR <43   IU/ mL    Not Detected   and

HCV RNA, QN, PCR                <1.63  log  IU/ mL   Not Detected

I tried to attach a word file  shows this and the footnote on what it means but I don't get it  All I really want is a little re assurance that everything is OK  I don't want to go bring this pile of test to another dr for 2nd opinion

I don't think the file attached

 

Bills wrote: on AUG 30th

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 OK Back from Docs The important thing is VL  Start was 300K   .  week 2  VL (26)  .  3 weeks VL is DET / <25

( <25 ) means The viral load is below 25 but to low to read   Doc expects week 4 VL to be UND

I think so too Altough I have my share of side affects that everyone is talking about There are other things that feel better

Ive had fluid in my legs for 4 years  (Cryoglobulin Complication ) when I was UND in May 2012 it was getting better When I relapsed in early july it came back pretty hard  I havent used Compression socks in at least 2 weeks There is so little fluid I only put them on if I know I'll be up and around all day

The wide spread body rash stoped is down to a few itches here and there. Doc said they think the rash goes down as you kill the HEP C  Most Lilkely you are UND already

Guys doest that just hit you in the gut ( choke you up ) When you heard that from your doc ? It does to me     So 8 more weeks of Incivek  and at least 12 more Peg in Ribv  again she's talking she rather see me do a year  If I have to I will   We all have a cross to bear  Nothing is free

The way I look at it some of us ( Me) kept abusing our liver for years  Should I really expect to fix it in few months ? I'm grateful it was caught when it was and I'm helth enough to tolarate this

Sorry Just speaking my mind and thoughts  I am beating it ( aka the Dragon ) this this time

Bill S

 

Bills wrote:

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Look What I got to day in the mail

All new bottles boxes and needles

I don't know if I can wait till tomorrow start using them

Anyway off to Doc monthly check up talk about Fat and Rashes etc

Maybe / Maybe they will have a week 3 VL I don't know

Later

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-- Edited by Bills on Friday 30th of November 2012 04:13:43 PM

-- Edited by Bills on Friday 30th of November 2012 04:32:49 PM

 OK Back from Docs The important thing is VL  Start was 300K   .  week 2  VL (26)  .  3 weeks VL is DET / <25

( <25 ) means The viral load is below 25 but to low to read   Doc expects week 4 VL to be UND

I think so too Altough I have my share of side affects that everyone is talking about There are other things that feel better

Ive had fluid in my legs for 4 years  (Cryoglobulin Complication ) when I was UND in May 2012 it was getting better When I relapsed in early july it came back pretty hard  I havent used Compression socks in at least 2 weeks There is so little fluid I only put them on if I know I'll be up and around all day

The wide spread body rash stoped is down to a few itches here and there. Doc said they think the rash goes down as you kill the HEP C  Most Lilkely you are UND already

Guys doest that just hit you in the gut ( choke you up ) When you heard that from your doc ? It does to me     So 8 more weeks of Incivek  and at least 12 more Peg in Ribv  again she's talking she rather see me do a year  If I have to I will   We all have a cross to bear  Nothing is free

The way I look at it some of us ( Me) kept abusing our liver for years  Should I really expect to fix it in few months ? I'm grateful it was caught when it was and I'm helth enough to tolarate this

Sorry Just speaking my mind and thoughts  I am beating it ( aka the Dragon ) this this time

Bill S

Bills wrote:

Look What I got to day in the mail

All new bottles boxes and needles

I don't know if I can wait till tomorrow start using them

Anyway off to Doc monthly check up talk about Fat and Rashes etc

Maybe / Maybe they will have a week 3 VL I don't know

Later

Just finished my 6 months and was in your exact situation. I'm feeling good and UND, hang tough. It'll be a ride!!

Look What I got to day in the mail

All new bottles boxes and needles

I don't know if I can wait till tomorrow start using them

Anyway off to Doc monthly check up talk about Fat and Rashes etc

Maybe / Maybe they will have a week 3 VL I don't know

Later

Hi Bills, that`s really good going!  You`ve really had a rough ride and this news must have given you a real boost.  The drugs are doing their job alright!     All best for your next results, keep going...Jill xx

Bills wrote:

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Daook

My thoughts will be with you. It's hard to wait. Good luck with your next results Please post the outcome 

BillS

 

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I will,  Thank you my friend.

Daook

My thoughts will be with you. It's hard to wait. Good luck with your next results Please post the outcome 

BillS

26 viral load after only 2 weeks, that is great! I guess this stuff works as miserable as it is.

Have 5 week bloodwork coming next week. I need to see good results.

GOT GOOD NEWS 

1st round  Viral load results are in

Aug 3rd baseline Viral load before Incivek 300.000 ( my origial load was 9 million last year )

After Aug 16th   2 weeks of INCIVEK

Viral load is  26

Yes 26    ( not 26,000  Thousand not 2600 )  just 26     she said the lowest reading you can have is 25 otherwise your considered Undetecable something about the test being done dosent go that low

I have to clarify that statment

IT'S WORKING

So I'll have the 3rd week result next week  Expecting a UDT 

Visit for more meds Thursday

Even as bad as all the symptoms and time I've spent in TX This gives me the strength to keep on  13 months of feeling like s#*%@ just melted away I have at least 5 more months maybe more but I would kill someone who stands in the way of me finishing this TX            When I'm free I intend to live

For today I'll Pray  Give Thanks and take deep breaths

Bill s

PS and THAN YOU ALL and  TO THIS FOUM Cause  I ALMOST QUIT 4 weeks ago

Thanks for your support. mallani  

Seeing a lot people here in treatment writing undetectable is very encouraging It's so unbelievable to see so many 50-60-70 yrs just getting treatment or tyring another drug. If it wasn't for this form and finding it when I did I was ready to drop out I wish you well with your treatmrnt   

We all have it tough some worse than others. 24/48/72 weeks 1st timers 2nd & 3rd timers. I think of this like doing time, every day I wish it was a week or 2 later It go's so slow. The light at the end of tunnel will be an undetectable blood test.  

Judging on what I felt when the virus broke through or relapsed My legs where getting fluid again (I have cryoglobulin-anemia )    Link  http://www.medhelp.org/posts/Hepatitis-C/Cryoglobulin/show/1057400     

I was feeling a lot worse and I knew something was wrong  But now 3 weeks took 4th injection yesterday Fluid had left my legs ( that seems like a good sign ) Other indicators lead be to believe it's working   Also hemoglobin was down 9.5 from 10.5  so they reduced Ribv reduced one pill I  Still Haven't gotten  the 2 week viral verdict yet  I can't wait to post good news.  For now I just lay low take meds.

By the way how is Australia Looks like your having fun there It's one of my must do destinations

Bye for now Bills

Hi Bills and welcome, You've had it tough. Hope your 4 week VL is undet. That's a really good indicator for you Incivek folk. Good luck.

12 days I think

The triple tx is tough  It's every-bit what you all say.  The rash was bad, fatigue, restless, no appetite,

I had my first 2 weeks appointment tomorrow But they canceled

Said because there is not much to say been checking my CBC nothing to discuss there

I did draw a baseline Viral load Friday that I started but that's not going to show any changes so I got orders to get viral load Thursday that's a 2 week mark so when that comes back I'll see what 2 weeks of telapivier has done then see them at 4 weeks

Other than that not much to say

Bill  S

Thank you         hrsetrdr 

The triple tx w/ inveck is harder than the last Trial DEB025 I haven't seen any post of others who tried that I think I read there were less than 500 lab rats in the world. I'm taking it easy this time took leave from work  Still can't believe i'm going right into Invrck after 48 weeks trial  I'm so close. i am determined to keep going. Once I start getting V-L numbers and UND  That will get me through the rest 24 weeks

I've taking sick leave went real good My co workers can't believe I've been under care fo 4 years and never told anyone I'm thinking what ever happens this forum inspired me to keep going I'm glad it's here I'll be posting Thanks for the welcome note

BS

Bills,

Welcome to the forums, and here's hoping that you finally slay the hep c dragon.

Started Treatment Friday 3rd instead  Daley 1 day I had to get cleared by skin doc I had a poison Ivy like rash arms & legs

1st dose Inveck   at 3PM  Ribv About 7PM  intf & Night dose Inveck 11:30 /  12Am  I very rarely get good sleep anyway but I was hit really bad Sat Morning  Took AM Inveck and Ribv laid in bed half sleep till noon

This additional treatment  now just as I finished 48 weeks of a Trial. Virus break through @ 42 ? weeks   Ive been on Inerferon & Ribiavin for a Year already no break That injection was #49  at this time I'll do another 24 weeks That's 72 weeks The logic is my viral load is low right now 100,000 +/-

I didn't expect to feel that way 1st time I forced myself out Sat & Sun  i'm giving in to the reality that I can't keep hiding this anymore from work

I decided to take short term medical leave.I need this next 24 weeks to be the final ones 

If i had a job that just anyone can do I'd go in  But I need to be responsive  about projects I taken  I can't  keep up with the high demand and will look worse if things fall apart  Next week sleep late do nothing or what ever I want  no physical challenges unless I feel up to it I'ts hard to think of how I'll spend this time 

When I get my baseline blood results I'm going to track it better keep a log showing ups & downs My first goal is reach UND within 4-5 weeks so I'll post that when I get them I saw others do that I thought it was helpful to see them

OK back to look at the ceiling again

BS

The Rash is killer itchey the Fog is thick i wanna just live day to day and hope I'll forget my name LOL I hope the symtoms die down so I can go somewhere

Tomorrow is a milestone  It's the last day of 48 weeks I turn back anything i have left the diray the remaining ribv empty injections     The study I was on was stopped mid stream  about 32 weeks in Since I relapsed about 40 weeks in  I was being set up for Invicek I was to keep doing the peg and ribv I was feeling worse as the virus climbs

The drugs hit harder and viral sicness increases Like the last year never happend  The drug company gets my last donation of blood ( wheres my check?)  so they can put my case in the files stamped RELAPSE  It wasn't a total waste I did clear for about 3 - 4 months

Now I have all new stuff  4 weeks supply Invicek Interferon and Ribavirin  You may know what its like looking at new boxes again right away I Wish this was a bad dream

Another good point is they want to go right in 2nd treatment ( I must look healthy enough to do it ) tomorrow  starts 12 weeks Invieck + Intf Ribv and 12 with just  the 2  (Ribv & Intf) 24 more weeks

I'm going to watch this round closer ( the first study was double blind for 9 months ) This time I want all my numbers all the time  Not that knowing before would have helped much  But I can make better decisions I if something does go wrong  As stupid as this sounds It will be nice to see all the DRs and lab techs 

I'm very greatful that signed on to this fourm last week      Thank you all for encouragmeent and being here. I'll post what happens

I'm going to look at the ceiling for a while,  Later

BS

Hi Jim

True a year with less virus is a good thing  otherwise I've been very careful to not cause harm no alcohol for ?? 4 years  no smoking about 5

I'm told since I stated treatment in 2008 there has been no signifigant change in my liver numbers  but I still feel like I'm watching a clock tic away

I was floored when DEB 025 was pulled out and I got really depressed when the virus broke through i was ready to quit  I can't believe I'm still going to this I know I have to try while the virus is low  I got a lot of info here and need to process what has happened and focus on my next visit Thanks again for all the info   Bills

Thanks for acknowledging I'm in this forum Joanne   I wish the best for you and success at the end Ive seen some other post on Invicek Sounds really hard to deal with      I agree with you I feel I have no choice but to do this now.  If I was to get worse they may not treat me and I'll be waiting for a liver ? I accept a lot of this and I know I may not ever clear this But I refuse to be an invalid and sit around decline and be a slave to meds and life support of some kind I'f I can't do for myself  and stand up on my own  I'd rather lay down and give up  I'm not suicidal just realistic  i am quite amazed how many of us there really are. On the positive side I kept up a fight for last 4 years  i have not missed work because I am too sick only use time for doctor visits. I need a vacation now  only 2 people at work really know what I have  My cousin and the owner I have good medical long as I keep working  well We'll see how this turns out I'll be around here somewhereand again Hope you suucceed and get on with your life too

Bill S

I'm brand new to any chat discussions and support  I'm not new to hep C I may have been infected 25 + yrs

I'm Geno type 1  I have cirrhosis stage 3  I can see there are some people here that sound the same as me 

2008 tired ribv and intf cut off in 12 weeks non responder 

Aug 2010 started a trial / study DEB025  the trial drug was pulled in April 2012  I was NDT but have relapsed 44th of the 48weeks  Now Drs want me to continue with Telaprevir / Intf / Ribv another 24 wks so I.m looking at 72 continuous weeks Intf ? Ribv and now a 2nd add on drug

viral load has climbed to 50,000 in 2-3 weeks could be 100,000 by now ? the VL is climbing even though I still do Intf / Ribv

Anybody else try switching to telaprevir like this? what happened ? How many times can you do this? or how long before the Meds really get to your system or Liver ? Are there any similar nightmares out there ? Some of your stories sound bad but encouraging at the same time

Anything you all may say is welcome

Bills