Dissapointing News

[Hatterasman]

I just received a copy of my week 4 PCR and it clearly states “! Detected*”.

The test was scheduled to be done at 3 weeks and 5 days.  I contacted the NP beforehand and expressed concerns about getting it done early and suggested that I wait until the 4 weeks was up.  I then mentioned that I had an appointment with the doctor on the week 4 end date and suggested that if it came back detected that I could retest.

I went in for my appointment and was told “We have great news; your test came back negative.”  To which, I responded “Undetectable?” She replied, “Yes” I said again “I’m undetectable?  I’m only going to have to treat for 6 months?  She replied, “Yes”

I’m now at the end of week 6, so no chance to retest now.  This *****.  I will never know if the extra days would have made a difference.

The PCR test that they did has a lower limit of detection down to 7.1, so I’m below the level of quantification, which is still an excellent result that I am in no way complaining about.  It’s just quite a letdown to be so misinformed.  I have told everyone in my family that I will only have to treat for six months.  I'm not a happy camper right now.

[can-do-man]

Not really jules, hrsepwrguy i believe in that link from will its not suggested for most people....

[hrsepwrguy]

I have no idea what mine is it never came up when discussing tx. Being late stage 3 it really makes no difference to me what the chances are I don't want to progress to cirrhosis and possibly on to ESLD, I'm willing to take the gamble on tx and following tx protocol gives me the best chance of SVR. But hey thats just me and my 46 yr old opinion.

[jules2551]

Is it really necessary to get the IL test?  My Dr told me regardless I needed to treat.  

[hrsepwrguy]

Treatment-Naïve and Prior Relapse Patients
HCV-RNAa
Triple Therapy
INCIVEK,peginterferon alfa and ribavirin
Dual Therapy peginterferon alfa and ribavirin
Total Treatment Duration
Undetectable at Weeks 4 and 12 First 12 weeks Additional 12 weeks 24 weeks
Detectable (1000 IU/mL or less) at Weeks 4 and/or 12
First 12 weeks Additional 36 weeks 48 weeks


http://pi.vrtx.com/files/uspi_telaprevir.pdf

[working dog]

did you find out if your cc tt ct ?my 4 week was <43..i was disappointed...i wish i got another vl test right away...but i waited till 8 weeks...my doctor wasn't going to do vl test at 8 weeks..i asked why...they said it wasn't necessary..that they were sure i was und..i got the test and was und...then 12 week und..19.5 week und and had to be taken off tx from eye trouble...i hope to svr .....i was suppose to do 48 weeks because the 4 week <43 i'm 2/2 and will have to do the tx next time without interferon......lots of things have changed over the years through many trials and treatments ... i look at how my wife tx years ago with soc and it was way different then now a days...and with the triple i expect things will change very fast as they find out how well the folks on triple do this year...at least with 1/1 or 2/2 ...if we stop at 24 weeks and relapse we most likely will get another shot with no interferon...my plan was to go the 24 weeks+an extra 8 weeks because of the 4 week test...but that didn't happen..there will be plenty of folks like myself that had to stop early ....time will tell how we do....good luck...billy

[Diane1186]

There are a few of us riding in the same boat.  My 4 week was still detectable but I didn't realize that this would extend treatment from 24 weeks to 48 weeks.  I thought I'd if I became undetectable during treatment with Incivek i would be fine.  Silly me huh!   I saw my NP this week and she gave me the news......OK, another addition to the journey.  Hang in there...we'll make it.

[hrsepwrguy]

Here is some great info provided to me by willbb about doing 48 wks of TX after not being UND at 4 wks

Keith..Don"t know if you are registered with CCO or not . If so, go to this site and  then go to the " Slides"   not the " launch program "   and there is some info. there you may find helpful. Scroll to the slide titled :

"SVR Rate BY HCV RNA Status (LLOQ vs. LLOD) for  Boce & Tela "

.http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20Assays.aspx

[Advocate1955]

While I know it's disappointing to first hear undetected and then find out you were detected, my guess is that two days would not have changed the outcome.  I think the best thing to is to ask for another VL check at 8 weeks and hope for UND at that time.  It will relieve your worries, even if it doesn't change the outcome for the length of treatment.  The most important thing is clearing the virus.
Advocate1955

[hrsepwrguy]

From my expirience 2 days is probally not going to make a difference on an UND status, I went through a similiar expirience with PCR testing at 4 weeks and did 3 test in 15 days all det below 43 ended up UND somewhere between 6 and 12 wks guessing I would say buy wk 8 but have no proof of that. Sorry to hear about the dissapointing news but all is not lost and you have had a great response and are still very much in the game doing the 48 wk plan. Can-do posted this and is great info for all on triple therapy.

http://www.medhelp.org/posts/Hepatitis-C/Clinical-relevance-of-detectable-but-not-quantifiable-hepatitis-C-virus-RNA-during-boceprevir-or-telaprevir-treatment/show/1644325

[pooh55811]

I am sorry to hear that you were detected at 4 weeks and also sorry that this news was made even more difficult because of the misinformation you received. Will you have another VL done at 8 weeks?  I was detectable at 4 weeks and I had another VL at 8 weeks which turned out UND. It was encouraging and a relief. I wish you the very best.