Incivek week 4 <43 (detected or not?)

[Cuda22]

I started my triple therapy with Incivek on 7/10/11  My week 4 and week 8  VL from Quest Lab was reported as <43 IU/mL (with no mention of detection or not)

But my week 12 and week 24 VL from Quest Lab was reported as <43 IU/mL (HCV RNA Not Detected)

I have since done a VL from Quest Lab 7 weeks post treatment and it was reported as <43 IU/mL (HCV RNA Not Detected)

My question is, why did Quest not report a Detected or Not Detected on my first 2 labs (Week 4 & 8) ?

My Doc had told me at that time that I was UND. So I only did 24 weeks total. But I just recently got the hard copies of my lab work (4 weeks after I stopped treatment)

Is there a chance that I was NOT UND at week 4? And if so, why would a doc report that as UND?
Any one know what your chances of SRV are if you only do 24 weeks total, but were DET at week 4?

Thanks!

[vanessa103081]

I just did!! I'm gonna look for myself... Will, my thoughts exactly. I don't want him on this if he is not responding at all. There is no need for him to continue enduring all these side effects in vain. We can find comfort in knowing that we did all that we could and move on with our lives. I hope the nurse is mistaken and we can continue but if not, its okay. Thanks... As soon as I get them I will post them!

[willbb]

And idyllic   brings up a great point ,some of the verbal  conversations passed on information by nurses that sometimes do not understand lab reports can be suspect

Will

[willbb]

Well the Victrelis is supposed to start atthe end of week 4 or the beginning of week 5 (being the same)

However when studies were done on this drug for those that did not have at least a 1 log drop(90% approx. to make things simple for clarification) then the odds of success are dramatically reduced.

If your BF truly has had "no " viral load drop at all it would be prudent for him to talk to the doctor about not introducing the third drug at this time as he is not responding at all to the Interferon.,and possibly waiting on another form of tx.

Will

[Idyllic]

Ask the nurse to fax or email his labs. It would be a good idea to understand the basic lab values as well as track them yourself. Vague information from some nurse at a doctor's office is not very helpful.

Lots of places are closing early today so you might want to call soon if you are going to.  :)   :)

[vanessa103081]

Genotype 1 ... He is on Interferon injections, ribavirin, and he is to start the third next week, Victrilis

[willbb]

What genotype is he and exactly what meds is he taking?

Will

[vanessa103081]

We spoke to the RN.. Doc out of town but she mentioned that his viral load has stayed the same... Its been a hell of a month, so needless to say we are freaking out

[willbb]

If your BF is on week 4 and you have not recieved labs ,how do you know viral load??

Will

[vanessa103081]

My boyfriend in on week for. We have yet to receive lab work but we know for sure his viral load has remained the same... What does this mean?? Is his body responding??

[Cuda22]

It sounds like you are doing good Billy!!!
Good luck!!!
RP

[Cuda22]

Thanks Lydia I will.
Good luck to you too!!!
RP

[working dog]

i had to stop tx at 19 weeks because of interferon causing retina damage...so i'm about 5 weeks ahead of you....after i was und 2 months post...my np said all i have to do now is cbc and alt blood work...the cbcs because my blood work isn't quite normal yet...but its fine...and the alts once a month just to see if the virus returns...she said if the alts stay normal then theres no reason to do a pcr.....she said if the virus comes back the alts will go up...i did a 3 month post alt and was normal....and a week from now i'll do my 4 month post alt and cbc...my tx symptoms were i think were as bad as they get before you get pulled off tx...in fact i had to stop riba twice...i did keep up with full dose of interferon and incivek..but stopped incivek 5 days early too...funny i thought i would breeze through tx...guess not...good luck...billy

[his3707]

Yes, that is right.   Weird experience for sure.   It will be interesting to see what the tagman says after I finally get the numbers.   I also meant to say how sorry I am that you had to go through your ordeal.  I cant get over all the confusion about treating protocol.  How ignorant the docs are!  Unbelievable how much misinformation is being put out there TODAY on everything HCV!
Best wishes and please keep us up on how you are doing!
Lydia

[Cuda22]

You had a heptamax at week 8 that reported <5 (I think that is below detection)
But your week 8 study labs reported you detected?

I would say that you were undetected at week 8

You only have a few more weeks, your kicking ***!

[his3707]

The incivek dosing study I am in keeps the actual test numbers blinded until the study is over.   I could not wait and had my own private tests done.  I was shocked when the study's test (tagman) came back detected but they would only tell me it was under 1000 so I could stay in the study.  the same day at week 4 and 8 I had tests done privately. My quest came back <43 with no mention of det or und.  I also had my 8 week test done the heptamax and it came back <5 but also did not say det or und.   Also My study 8 week test also still came back det but they could not give me a number only that it was under 1000.  My 12 week study test came back und. At week 45 I have so far remained und.   I have not had any more private tests done as it only matters what the study result is.  I can only say now that I have whacked this virus in the head with a sledgehammer.  

[Sentinel13]

Hi Cuda:

I found a link suggesting riba can stay in the body for 6 months after treatment is ended.

http://www.spfiles.com/mgrebetol.pdf

Page 1 of the link states, "Do Not become Pregnant within 6 months after discontinuing REBETOL therapy."

I'd say that's a good indication that it takes up to 6 months to detoxify. During my last treatment, I was still itching 3-6 months after stopping riba, which convinced me the riba sticks around a long time -- occasionally making my life miserable.

Cheers, GB

[Cuda22]

I hear ya brother!!!

I did 1 1/2 years of maintenance therapy but had to stop (I got mersa from low w/count) that was 3 years ago.

I feel much better being on interferon with a 0 VL, than having that nasty virus in me.

What has me so upset with my doc is, I already did the heavy lifting with the incivek. I could have done an xtra 24 weeks without a problem had I known there was a good chance that my week 4 <43 might have been DET.  

But the Doc talked me out of it.
I had not done enough home work to now what the odds of being <43 DET might be.
But by the time I found the data (20% chance or more)  I had already stopped!!!

Thank you for the info on Riba! ....makes me feel better.

Cheers to you too, RP

[Sentinel13]

Cuba: Like you, I am familiar with what it feels like when the virus is ravaging my body. Whenever that happened, I would either go on the full treatment or go on pegylated interferon liver maintenance therapy to stabilize myself.

I recall reading that riba can stay in the body for 6 months. Maybe the bad days you are experiencing is your body trying to deal with the residual toxins from all the nasty drugs you were taking during treatment. Cheers, GB

[fretboard]

That's a terrible shame that some people are undergoing more tx than necessary due to a test result that is not fully understood.  Tx is hard enough without the added stress of a test result that is not understood by all concerned.  I wonder how many people have been told by their doctors to continue txing b/c the <43 IU/mL result was mis-understood?  That's just insane!  If one person goes through tx for any amount of time, it's too much in my book!!  I wonder who can be contacted to correct and enforce better and easier to understand test results?  

Would it be that hard to just make a test result detectable or not detectable?  Are the numbers always needed?  Reminds me of the saying about being a little bit pregnant.  You're either pregnant or you're not.  It seems to me that you would either be HepC positive or not.  Viral load or no viral load.  Detected or not detected!!  Argh!!!  I'm just sayin'!

[Cuda22]

Did you do the lab test with the study after you first got results from Quest lab week 4 <43 (with no mention of DET or UND)

And that was how you found out that you were indeed week 4 <43 DET?

[Cuda22]

Yes this is bull!!!!

I thought I did my home work too.  But my doc had no idea of what he was talking about when he told me that my chances of being <43 DET were slim, and not to worry about it.

So I stopped at 26 weeks!!!

Sorry, I needed to vent......

[Cuda22]

Hi Billy, how long were you on tx before you stopped?
I started July 10th and I stopped at 26 weeks. But I do not know if I was <43 det or und at week 4.

I am now 10 weeks and 4 days post treatment.
I was und at weeks 12, 24, and also 6 1/2 weeks post tx.

At week 1 post tx I started to feel better. At week 2 post tx I felt great!
But at week 3-4 post tx, I was sure that the virus had come back. I was getting that sickening feeling back. The one I always have when the virus is present.
(I have been on treatments and the relapsed 3 times prior to this, I know how I feel with and without the virus)

I tried to persuade my liver doc to do labs since this was driving me crazy and I needed to know,  But he refused and said to wait for the 24 weeks. So I had my primary Doc do labs at 6 1/2 weeks post tx, and it came back und.

Since then I have been up and down. I will feel great for half a day and then it hits me and I feel like crap and I am 100% sure the virus is back.
Or I will go 2 days feeling incredible like I am 30 years younger and then I will feel bad the next day, convinced that I have relapsed.

But the last few days have been good!
And I will keep you posted

[his3707]

I had the same issue. have ended up doing 48 weeks.  I am at week 45 now so it is about over.  It was hard to take when I was told it was detected unquantifed on tagman at the study and private quest <43 no mention of det or und.   It shouldnt be this hard.  I thought I did my research and agonized over what test to take.  Now I think anyone should just do the labcorp quantisure or the heptamax.   This really is bull$

[crossroadsec]

I'm with you! A common standard or language is vital to those of us treating. I was relieved to hear the "resident experts" response. I'm not there yet, but thinking about the same thing. Haha. It sounds like you're in FINE shape. Truly happy for you. Karen :)