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Dan's Twinvir story 7 years 1 day ago #9533

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Yes Dan, I have posted this for detectable at EOT and still cured.

Among patients treated with sofosbuvir/ledipasvir, with or without GS-9669 or GS-9451, 100% had HCV RNA <LLOQ according to the Roche assay and 90% did so according to the Abbott test. There was 1 relapse, yielding a positive predictive value of 98%. Further, 6 patients with HCV RNA >LLOQ but detectable (in the at 14-64 IU/mL range) at the end of treatment achieved SVR12, for a negative predictive value of 0%.
Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured

Dan's Twinvir story 7 years 1 day ago #9536

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:+1:
Bloods done today. Praying for best VL result next week
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

Dan's Twinvir story 7 years 1 day ago #9538

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Dan what week are you at in treatment and when did you have your last VL test done I would have waited at
least another two weeks between tests.

You know, I have to say again I think comparing those on Twinvir and their VL results at any time throughout
the 12 weeks is not helpful to anyone least of all the people taking those drugs.

VL testing is not a competitive sport I really would like to ask some posters to be mindful this can
be a very stressful time for those waiting on results.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
The following user(s) said Thank You: Vororo, Chejai, Gaj

Dan's Twinvir story 7 years 1 day ago #9541

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Week 8 + 1 day

Done VL 1 week 29, from 400000
Week 4 VL 12
Week 7 Detected
Week 8.1 Today at different hospital, VL result next week
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
The following user(s) said Thank You: Chejai

Dan's Twinvir story 7 years 1 day ago #9545

Hey Sirch, I know what you mean. but then again, who can we share our news with apart from each other?
It's a tricky balance. There doesn't seem to be any pattern to it does there, I guess length of infection, original VL, age and just our immune systems all play a part, Plus if we get a cold, dont sleep enough pre rest, it may all play a part, who really knows? Worth bearing in mind . Maybe after these treatments are studied, some kind of vague pattern will emerge? Until then, all we can do is our best and hang on in there :)

Although I guess we're not the most patient types ha ha
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Dan's Twinvir story 7 years 1 day ago #9549

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I'm not suggesting we don't share VL results of course its right to want to tell everyone how
its going I was thinking more the comparison of results between each other.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
The following user(s) said Thank You: Chejai

Dan's Twinvir story 7 years 1 day ago #9555

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Thanks Sir, I agree with your comments.

I suspect that as a group we are placing too much emphasis on VL results and doing the tests too often.

Probably testing at week 4 to confirm a large drop from commencement of Tx is sufficient to ensure the meds are working and give us confidence with another test at 8/12 or 12/24 depending on length of Tx to confirm we haven't developed resistant viruses which would show as a very significant rebound.(Note that I am not even suggesting we need to be UND at those points based on the research)

In my case I was concerned when the lab only gave me a detected result at 4 weeks so it was a relief to come in as <15 on retest. My next test will be at 12 weeks (I'm on 24 week Tx) but even if I had tested a couple of hundred at 4 weeks I like to think I would have been prepared to wait till 12 weeks for the next result as all the research says that we are only looking for a significant drop to confirm the meds are working.

So what is a significant drop? Basically anything where we go from hundreds of thousands or millions down to a couple of hundred or less would qualify. A significant rebound would be the same in the opposite direction.

The above is my understanding of the science which I like on a rational level but I also have an emotional side so can understand the need to have it confirmed that we as a person are doing really well. But as you say it isn't a competition or race to get there first, we just need to reach the finish line together, at low levels of detection. :)

Edit: For most of us the second test for resistance is not really a requirement but in my case with prior exposure to Dac it will give me a warm and fuzzy feeling when I pass it. ;)
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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Dan's Twinvir story 7 years 1 day ago #9557

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I'm not testing it too often. My plan was always 4 weeks, 8 weeks and 12 weeks, which I booked with my GP.

The week 1 and today's tests were offered by the hospital, so I couldn't refuse that. :-)

I'm also not doing it to compare VL with anyone, but to make sure that the treatment is working andif the response is slow, can have time to get the extra treatment without interaction.

Of cause at some point "what if" comes out of nowhere and the worry process begins. :dry: :lol:
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
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Dan's Twinvir story 7 years 1 day ago #9558

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Hi Dan,

Sorry, my post wasn't criticism of you, just a general comment on how we sometimes seem to get caught up in the testing and results around here.

And I hear you on accepting free tests when they are offered. I went to my GP to request vitamin D & B12 testing and he suggested full bloods and LFTs as well. My response was that I didn't really see the need because I could feel the improvements but he said that he wanted to see the results so I wasn't going to argue with that! :lol:

Yes as you say, I also suffer from "What If?" #roflmao
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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Dan's Twinvir story 7 years 1 day ago #9559

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;)
:idea:
My Vit D still not ready. I was told it takes 2 weeks.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

Dan's Twinvir story 7 years 1 day ago #9560

Dan, I understand your concern, I too hope I am VL undetected by 8 weeks. But you were VL 12 at 4 weeks! That is very good, so maybe you are VL 2 or 3, with 4 weeks to go. I told you my plan is undetected plus 4 weeks, but I am only going to extend to 16 weeks at most and then see what happens after 12 EOT, because as noted the VL does still go undetected after treatment ends. At that point I would retreat with this drug and the newer drug simeprevir or something like that.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20

Dan's Twinvir story 6 years 11 months ago #9966

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Week 9 today.

Got my week 8 VL result from the different hospital and it is UND. :) :) Should I still take extra 4 weeks?

The nurse is surprised, as she thinks that my immune system got read of the virus. 

Apart from that, my eczema is a bit better, but get very lightheaded, hands and legs get numb more frequently and get very cold.

My GP doesn’t want to do any further investigations until Hep C is cleared.
Should I ask for any scans/tests from my GP.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
The following user(s) said Thank You: Chejai, Hieupham

Dan's Twinvir story 6 years 11 months ago #9969

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Dan, you have been UND since 4 weeks. Dr Freeman have tested it where many have been UND at one week.
Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured

Dan's Twinvir story 6 years 11 months ago #9970

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Is it based on the 4 week result, where my VL was 12, which is <15?
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

Dan's Twinvir story 6 years 11 months ago #9972

Got my week 8 VL result from the different hospital and it is UND. :) :) Should I still take extra 4 weeks?

Yay - So pleased for you!

The nurse is surprised, as she thinks that my immune system got read of the virus. 

Weeeeellll that is quite possible no?

;) Great news Dan.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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