A viral breakthrough :o(

[beeblessed]

Haven't been posting recently because I was trying to wrap my head around some disappointing tx news.  I was hesisitant to post at all but....as always.....if it can help someone else in similar circumstances.......

Triple therapy w/Victrelis; Week 8 UND; I previously happily posted that I was also UND at week 12.  I was misinformed (long story).  At the 12 week mark, I was actually <43, which indicates a small viral breakthrough. I do have a copy of the labs now.  

I just did Pegasys shot #15 last night, and shot #1 of Procrit.  For several factors that pertain to my medical history, I was placed on a long term RIBA reduction.  Wait....I can hear some of you sighing.  You'll just have to trust me when I say......as much as I hated the idea of a dose reduction, I did feel better.  Unfortunately, my HGB has other challenges so my docs were not rushing to bring the dose back up.

My tx nurse (over 20 years in Hepatology and has been involved in clinical trials), who is also African American, is confident in my course of treatment but also reminded me of the risks and difficulty in treating African American patients.  Clearing the virus is harder.  Still, she said I am doing excellent in terms of the reduction in my VL from the original pre-tx of 10,700,000.  The head doc of the department has also weighed in on my case, so it is more than the opinion of my doc and tx nurse.  Took me a lonnnnng time to trust their care but I do.  Not happy about this development at all but they feel........the first goal is to keep me alive/safe (first, do no harm?).  They are looking at this as temporary and doing their best to get me to clear the virus.  My outcome is uncertain at this point (in the sense that, we are all monitored each month to check we are still UND), so we will take it one week at a time.  Could mean longer treatment time, among other things.

Question --- If anyone has information on viral breakthroughs and SVR, please post the link.  I am curious as to data for 1 time breakthroughs of <43.  Please be gentle.  The mental aspects of Anemia and possibly depression are getting to me and my AD was just increased. Thanks.

[orphanedhawk]

You don't need to reply to me, but I  definitely would want another pcr.
Tests can mess up.
What have you got to lose?

OH

[beeblessed]

Anne & Advocate -- Thanks so much for your support.  There is something called the "Gold Standard", which means they do double check, BUT I am not sure if that applies to this particular test.  I will ask and see if I can find out.  But at week 15, I'm more concerned with what happens from here on out, so we'll see.

Thanks again,
Bee

[beeblessed]

Hector -- Yes, a horrible shock because I felt I was clear with the person I asked for my numbers (which came back after my appt).  I do have supportive people in my life, but was too in shock to share this until I got a better understanding of it myself.

"These analyses showed that 4-week lead-in response helped predict SVR..."

Thank you for the studies Hector!  It helps.

Can Do Man -- Good to know your experience in this too.  Thanks for the great info.!  "There are at least a few people here who have SVRd and reported a blip at or after week 12 and you have no way of knowing if this is one or not..."

Frijole -- Thanks.  The confusion was with the person I spoke to, who must have misunderstood what I was asking.  From here on out, I will have the labs in my little hands before I go celebrating.  I know about the different sensitivity tests.  I am going to ask for a QuantaSure test, for sure on the next labs.  As for re-running the 12 weeks.....at this point.......I'm guessing they may have already done that, but even if not, I am more interested in my next labs anyway.

Flcyclist -- No, it wasn't a misinterpretation on the numbers, I think it was a misunderstanding in my question of -- Am I still UND at 12 weeks (which sounded like a pretty clear question to me, but there you have it).  My 8 week says: Not detected; my 12 week says: <43 Detected.  Thanks so much

Suezee -- Thank you for your support :)  I think you may be right.  Because of ancestry, we are in the same boat.

Indy, Starshine -- Amen, amen!!  Thank you so much for the prayers :)

Sandy, Screaming, Keith, Belle -- Your support and kindness are truly wonderful.  Thank you.

Willy -- Prior to tx, I was Vitamin D deficient, so I am on supplements for that.  Thanks :)

Dave -- This helps me, so thank you so much.  "My trial doctor did not consider that a breakthrough. He said a real break through would mean that my VL had climbed several hundred or more."

Billy -- Thank you for your kind words.  I do feel the love here :)

Will -- I will be going for labs now every week (becoming quite the pincushion), so we'll see what happens from here on out.

Thanks everyone for being in my corner.  It has been a difficult few days.  I have faith I will make it through this.  Given the data and encouragement you have given me, I feel even better about that.  Bee Blessed........

[Advocate1955]

I hope your doctor will re-run the test or use a more sensitive test.  Best wishes for UND.
Advocate1955

[Anne1717]

I agree that you should retest and hopefully it was a glitch.  It all sounds too iffy to me.  Best of luck and we'll all cross our fingers for you.

[spectda]

This is the labcorp test used in the Victrelis trials. I don't understand why your doctor is not using something more sensitive quantifiable to 43. Hopefully the procrit will allow you to take more ribavirin when it kicks in.

Hepatitis C Virus (HCV), Quantitative, Real-time PCR (Graphical)
HCV RNA Quantitation, TaqMan®
Test Number: 550070

"The limit of detection of this assay is 7.1 IU/mL for HCV genotype 1, and the quantifiable range of the assay is 25 IU/mL to 69,000,000 IU/mL."