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Hep C Discussion Forum -> Post Treatment -> im confused, need advice please
Post Info TOPIC: im confused, need advice please
dustbear


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RE: im confused, need advice please
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I hope you get the new tx without the peg and that it is successful!

I wish you all the best.



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Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
ucbgal


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april,

it saddened me to learn of your results. i know it's difficult to get news like that but we all have to remember it was the meds that failed .

2014 will offer you more options when you're ready to retreat.

sandy,ucbgal



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Cinnamon Girl


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So sorry to hear this, April, but you gave it your best shot.  Take some time to heal and recuperate now, and you`ll be ready for the next round of treatment when the time is right. 

Keep in touch, and best of luck.  You`ll beat it next time, I`m sure!  smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
aprileee


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Thank you for thinking of me! I am trying to stay positive because I just KNOW this new treatment is going to work!!! :)



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33 years old Genotype 3a NO luck with Peg & Riba in 2013 but am undetected after 2 weeks of Sovaldi with Riba 2014 :)
Tig


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April,

I'm so sorry to hear your news. I wondered about the outcome when your doctor's office had you restart a brief period of treatment. I was really keeping my fingers crossed. You've been here long enough to know that the new treatments are effective and much less harsh on your mind and body. Keep your spirits up and look forward to this next course of treatment as your last! Keep us in the loop, you know we're here for you. Good luck at your appointment!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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aprileee


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Well i tried a couple weeks of additional treatment as i explained before, and it did not work. In fact, i am worse off than i was in the beginning. I have an appointment with my doc tomorrow afternoon to discuss possibly starting this new treatment. Sounds better since there is no injections but still scary...we will see what happens. Thanks for everyones advice and support. April

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33 years old Genotype 3a NO luck with Peg & Riba in 2013 but am undetected after 2 weeks of Sovaldi with Riba 2014 :)
mallani


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Hi April,

Unfortunately, that does not seem to be a Lab error. Their LLOD is 10-13 and LLOQ is 15, and you're 31, Detected. As Jill said, it would be worth repeating, but you're probably a relapser. Your time will come.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Cinnamon Girl


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Thanks, April, that`s very helpful. So your lab results definitely say that the virus is still detected (HCV RNA detected) with a viral load of 31. IU/ml.  Well, wait and see what the next test comes up with and take it from there. 

Best of luck, and keep us updated.  smile

 

(ps - I edited my post this morning so that`s why it`s now showing in the wrong order!)



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
aprileee


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Ok here is my lab results from last week...they are having me do one more week of peg and riba, then more labs before they decide to put me back on or not. I don't know if any of this means anything to you but it is worth a try I guess!



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33 years old Genotype 3a NO luck with Peg & Riba in 2013 but am undetected after 2 weeks of Sovaldi with Riba 2014 :)
Cinnamon Girl


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Hi April, no wonder you`re feeling confused!  Malcolm is right, if your VL gives a result of `31` then it means that the virus is still detected, but in view of what you`ve told us I think it would be a very good idea to request a repeat VL test.  I haven`t heard of anyone else being instucted to do additional time with Peg/Riba after EOT, that isn`t the accepted protocol at all, and I`m not sure it would make any difference anyway at this point.  I expect your side effects from the shot last night were worse because you`ve had a break from it.

Sorry you`re having to go through all this and deal with such a confusing situation, and I hope your doctor can give you more information when you go to your next appointment. 

Keep us posted, won`t you, and best of luck!  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
aprileee


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Ok, thanks. I read your response and the other post you mentioned and i think i might be even more confused. i have an appointment with my doctor in 5 days but meanwhile i am going to continue taking the peg and riba. I hope its just as simple as the lab making a mistake. Hopefully it all works out. For some reason the side effects from my peg last night were worse than usual so i hope this isnt all pointless. They have never given me a copy of my viral load but i will ask for it when i see my doctor. For now i will continue my xanax, resting and chugging water. Thank you very much for your response.

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33 years old Genotype 3a NO luck with Peg & Riba in 2013 but am undetected after 2 weeks of Sovaldi with Riba 2014 :)
mallani


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Hi April,

This is a confusing topic. If you look in General Discussion, I have done a 'Sticky' called 'Making sense of Viral Load Tests and results'.  Have a read through that, and the subsequent posts.

It sounds as if your Lab. has changed its version of the PCR VL test. If previous results had a LLOQ of 43, that was the lowest limit they could quantify. The LLOD (lowest limit of detection) would have been lower, probably 7 or 10. So, using that test, an Undetected result would have read '<43 Undetected' . A low positive result would have read '<43 Detected' .

Now your Lab is obviously using a newer, more accurate version of the test. The LLOQ is now 15 i.u./ml so an Undetected result would read '<15 Undetected'.    Unfortunately, the fact that you have been given a number, 31 i.u./ml, means you are still Detected. If you could post a copy of your Lab result, that would be helpful.  Taking some left over Peg and Riba isn't going to change anything, I'm afraid.  With such a low VL it would be worth getting the test repeated , particularly as the test is new to your Lab, and there may be an error with the dilutions.  Good luck!



-- Edited by mallani on Friday 22nd of November 2013 12:18:08 AM

__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
aprileee


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Ok, so i finished my treatment on 11-9-13. My first viral load was 587,000, second was 18,000, third was 46. Today they called with my final results...but i am totally confused and sounds like the doc and nurses are too- they (when i started treatment) said that as long as they have treated patients for this, the lab cannot detect anything under 43, so "less then 43" is the best result i can hope for. (Also called undetected) But now, my lab has changed this. Now, "less than 15" is the best? Thats weird in itself. But anyway... My final viral load is 31. So they came together and decided to give me some "samples" of peg and riba that they have in the office for a couple weeks to see if i can get rid of the rest. That sucks, but of course i agree and am willing to do what it takes to get rid of this, but it sounds like if this were a few weeks ago, i would be fine since the "less than 43" would be my best result...right? Am i just confused, or are my docs screwing things up again? Last time i had an issue, i had to correct them myself so im worried that the same thing is happening again. They are calling it an experiment? Lol it seems like its really my only option right? Has anyone ever heard of this being done before? Also, i may be over paranoid but i dont wanna screw up anything with my insurance because of this. And what, do they plan on doing a viral load every week now to see if its "less than 15?" Dont see how my insurance is going to understand that. I am going to the doc tomorrow morning anytime but i thought maybe i could get some input from you guys before i made any decisions. I want to trust them to get rid of it but also dont want them to screw anything up. Thanks in advance to anyone who feels like helping!

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33 years old Genotype 3a NO luck with Peg & Riba in 2013 but am undetected after 2 weeks of Sovaldi with Riba 2014 :)
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