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Author Topic: Last Harvoni Pill Today - Finally Courage To Post Here  (Read 16252 times)

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Offline Heather

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  • Posts: 7
Last Harvoni Pill Today - Finally Courage To Post Here
« on: March 29, 2015, 05:30:32 pm »
First, let me say - thank you to all who participate here. I have been reading, learning, laughing and crying with you for some time now. However, I've only just created a profile. (anxious, I guess) I tried to create my signature with the basic info of my HCV history, although, I really don't know how long I've had HCV. I took my last Harvoni pill today - 12wks. Tomorrow, I'll get my labs drawn and see my GI doc. I know there have been lots of questions about reading results here, but I'd like some feedback regarding mine, if that's okay. The type of lab test was not available through my patient portal - here's a graph of past RNA results:

                             1/11/12     1/19/15     2/2/15      3/3/15
HCV RNA:           Positive      Positive     Positive    Detected
Log HCV IU/ML:   6.64          1.25          <1.08       <1.08
HCV RNA Quant:  4405844    18             <12          <12

Now, when the GI office called to tell me the results from 3/3/15 (8wks into treatment) she said, "Good news, your labs showed you are negative for the virus so you won't need to go beyond the 12 weeks of treatment." I was so excited because at my 8wk appt, GI doc told me that if the labs came back with the virus still detectable, he would ask for an extension to 24 wks of treatment. Bottom line is that I checked the patient portal today and found these results. Can anyone enlighten me as to why she told me over the phone that it was "negative"? Thanks in advance and sorry if I broke any rules - I really tired to follow forum etiquette.
« Last Edit: March 29, 2015, 05:32:16 pm by Heather »
Diagnosed 2007 HCV, genotype 1a
Liver Biopsy 2008, 0-1 fibrosis
Normal Liver MRIs/Ultrasounds 2013-2014
Harvoni started 1/4/15; last pill 3/29/15=12wks
Pre Tx : "Positive" AST/ALT 96 & 58; VL:4405844
2wks on Harvoni: "Positive" ALT/AST:19 & 13; VL: 18
8wks on Harvoni:"Detected" ALT/AST: 20 & 15 VL: <12
EOT labs 3/30/15: Not Detected!

Offline Lynn K

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Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #1 on: March 30, 2015, 12:41:51 am »
Kinda hard to interprete what you have posted the results look jumbled on my iPhone can you just post the last one you received that corespond with the phone message?

However results similar to less than 12 detected are being interpreted negative by some. The important test result is the 12 week post to see if the virus has returned to prior to treatment levels. Here is an article by Lucinda you may have missed

http://blogs.hepmag.com/lucindakporter/2015/03/new_hepatitis_c_trea_2.html

Good luck
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Heather

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Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #2 on: March 30, 2015, 10:33:43 am »
Wow...that really helps clear up a few things (both the article and your reply), thank you. I've just left the lab and I'm on my way to my GI appt now but won't know my newest lab result for a couple days. Most of my confusion came from the fact that my result from Feb 2nd said "positive" and <12...then on Mar 3rd, it said "detected" and <12. Both done at the same lab and GI staff called me with a verbal "negative". I did end up having to get drawn at a different lab today due to the fact that my PCP had some fasting labs also ordered there.I figured one poke, you know? It will be interesting to see if that new lab used a different test.
« Last Edit: March 30, 2015, 10:35:41 am by Heather »
Diagnosed 2007 HCV, genotype 1a
Liver Biopsy 2008, 0-1 fibrosis
Normal Liver MRIs/Ultrasounds 2013-2014
Harvoni started 1/4/15; last pill 3/29/15=12wks
Pre Tx : "Positive" AST/ALT 96 & 58; VL:4405844
2wks on Harvoni: "Positive" ALT/AST:19 & 13; VL: 18
8wks on Harvoni:"Detected" ALT/AST: 20 & 15 VL: <12
EOT labs 3/30/15: Not Detected!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #3 on: March 30, 2015, 11:52:03 am »
Hi Heather,
Let us know what your doc says - this is a very complicated situation since we don't really know what to do because what your doc suggested was a bit off protocol. Technically, 12 weeks was enough, but your doc confounded it a bit by proposing a different strategy.

Finger crossed for a great outcome (and statistically, the odds are on your side)
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Heather

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  • Posts: 7
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #4 on: March 30, 2015, 12:26:23 pm »
Hi Lucinda. Okay, this was his statement today: "We have beaten down the virus from 6million copies with every draw and at 8wks, was somewhere between 1-11 copies left in your bloodstream. Then you took 4 more weeks of treatment, which theoretically would find and destroy the last few copies. But we won't really know if you're going to relapse until the 3 month and then 6 month post treatment labs."

He did not clarify why he said that he would ask for another 12 wks previously. I wonder how many GI docs are learning about Harvoni as they go through it with their patients?
Diagnosed 2007 HCV, genotype 1a
Liver Biopsy 2008, 0-1 fibrosis
Normal Liver MRIs/Ultrasounds 2013-2014
Harvoni started 1/4/15; last pill 3/29/15=12wks
Pre Tx : "Positive" AST/ALT 96 & 58; VL:4405844
2wks on Harvoni: "Positive" ALT/AST:19 & 13; VL: 18
8wks on Harvoni:"Detected" ALT/AST: 20 & 15 VL: <12
EOT labs 3/30/15: Not Detected!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #5 on: March 30, 2015, 12:59:27 pm »
Thanks Heather, and although he didn't clarify his earlier statement, he is following the guidelines. One thing I'd add is that your 24-week f/u viral load is pretty certain to be the same as the 12-week results.

So now, you get to practice the fine art of waiting game.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Heather

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  • Posts: 7
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #6 on: March 30, 2015, 01:29:14 pm »
I'm going to do my best not to make myself crazy while waiting for the long-term results. But, I'll post back with today's EOT results.

If I may ask one more clarifying question - when we talk about SVR12 (and subsequently SVR24) are we saying SVR12 = today (end of treatment) OR 12 weeks after today? I thought I understood this but the more I read it, I start to question myself. Especially since the doc said he would check VL again in 3 months and then at 6 months.
Diagnosed 2007 HCV, genotype 1a
Liver Biopsy 2008, 0-1 fibrosis
Normal Liver MRIs/Ultrasounds 2013-2014
Harvoni started 1/4/15; last pill 3/29/15=12wks
Pre Tx : "Positive" AST/ALT 96 & 58; VL:4405844
2wks on Harvoni: "Positive" ALT/AST:19 & 13; VL: 18
8wks on Harvoni:"Detected" ALT/AST: 20 & 15 VL: <12
EOT labs 3/30/15: Not Detected!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #7 on: March 30, 2015, 03:19:55 pm »
Last day of meds is EOT (end of treatment)

SVR is a sustained viral response at some time after EOT so SVR12 is a susstained viral response (continued not detected) 12 weeks after last med taken

So yes your doctor will be testing for SVR 12 and SVR24
Hope that helps
« Last Edit: March 30, 2015, 03:21:26 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Heather

  • Member
  • Posts: 7
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #8 on: March 30, 2015, 03:27:42 pm »
Yes, it does. That's what I initially thought, thank you. Here's to hoping for the cure...for all.
« Last Edit: March 30, 2015, 03:29:13 pm by Heather »
Diagnosed 2007 HCV, genotype 1a
Liver Biopsy 2008, 0-1 fibrosis
Normal Liver MRIs/Ultrasounds 2013-2014
Harvoni started 1/4/15; last pill 3/29/15=12wks
Pre Tx : "Positive" AST/ALT 96 & 58; VL:4405844
2wks on Harvoni: "Positive" ALT/AST:19 & 13; VL: 18
8wks on Harvoni:"Detected" ALT/AST: 20 & 15 VL: <12
EOT labs 3/30/15: Not Detected!

Offline Mike

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  • Posts: 999
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #9 on: March 30, 2015, 07:55:43 pm »
Congratulations, Heather,

Looks like you're going to slay the dragon!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Heather

  • Member
  • Posts: 7
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #10 on: March 31, 2015, 07:54:47 pm »
So the EOT lab draw HCV RNA test was done by COBAS TaqMan. My previous 3 VL's were done by Abbott assay. This last result came back: <15 and Not Detected!  ;D








Diagnosed 2007 HCV, genotype 1a
Liver Biopsy 2008, 0-1 fibrosis
Normal Liver MRIs/Ultrasounds 2013-2014
Harvoni started 1/4/15; last pill 3/29/15=12wks
Pre Tx : "Positive" AST/ALT 96 & 58; VL:4405844
2wks on Harvoni: "Positive" ALT/AST:19 & 13; VL: 18
8wks on Harvoni:"Detected" ALT/AST: 20 & 15 VL: <12
EOT labs 3/30/15: Not Detected!

Offline coloradogirl

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  • Posts: 70
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #11 on: March 31, 2015, 08:45:24 pm »
Yaaaay! Not Detected!!!! Congratulations! That is good news! I am happy for you!
HCV 1a diag 2002
1st tx 2004 null responder
2nd tx 2010 clinical trial relapsed
Last biopsy 2010 F2-F3
Fibrosure inconclusive some parameters out of range
Abdominal Ultrasound 7/2015 - No sign of Cirrhosis
Pretreatment  vl 580,000
Started Harvoni 3/2/2015 EOT: 5/24/2015
4th week 3/27/2015 vl < 5.3 Undetected
8th week 4/23/2015 vl <5.3 Undetected
12 week EOT  5/28/2015 vl <5.3 Undetected
4wk after tx 6/26/2015 vl <5.3 Undetected
12wk after tx 8/19/2015 vl<15 Undetected!!!
I'm Cured! Yes!

Offline Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #12 on: March 31, 2015, 09:08:19 pm »
Great news Heather Congrats!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Heather

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  • Posts: 7
Re: Last Harvoni Pill Today - Finally Courage To Post Here
« Reply #13 on: April 02, 2015, 10:51:41 am »
Thank you all. I've been feeling pretty awful the last couple of years.  My docs have said they cant be sure what symptoms came from the virus and which came from other ailments. Here's hoping I'll regain some health now. I'm pulling for each of you as well! We'll be watching and waiting for those final SVR24's...
Diagnosed 2007 HCV, genotype 1a
Liver Biopsy 2008, 0-1 fibrosis
Normal Liver MRIs/Ultrasounds 2013-2014
Harvoni started 1/4/15; last pill 3/29/15=12wks
Pre Tx : "Positive" AST/ALT 96 & 58; VL:4405844
2wks on Harvoni: "Positive" ALT/AST:19 & 13; VL: 18
8wks on Harvoni:"Detected" ALT/AST: 20 & 15 VL: <12
EOT labs 3/30/15: Not Detected!

 


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