Dan's Twinvir story

This topic has 360 replies, 38 voices, and was last updated 7 years, 8 months ago by LondonGirl.

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5 January 2016 at 6:51 pm #8057
Enkel
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- Guardian Angel
@enkel
How she quantified 12? Strange

please email me the paper photo.

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
5 January 2016 at 10:18 pm #8067
Dan
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- Guardian Angel
@dan
This is the actual result paper. It says just present.
Attachments:
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
6 January 2016 at 12:38 am #8087
LondonGirl
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- Guardian Angel
@londongirl
‘Just present’ – Does that suggest you are just ‘on the line’ of detected / undetected ?

Either way, 8 more weeks should blast that away Dan I would think?

This whole detected / undetected thing is really confusing me I must say, I seemed to have grasped it at one point, but all understanding seems to have sailed away !

Think when my blood test time comes , I’ll do what you’ve done and ask .

Keep the faith Dan, you’re doing good, I’ll be joining you very soon and will probably be asking you stuff before too long !

Warm wishes to you

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
6 January 2016 at 2:33 am #8100
Dan
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- Guardian Angel
@dan
Thanks LG. I hope your parcel arrives tomorrow and good luck for tx.

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
6 January 2016 at 10:50 pm #8184
Enkel
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- Guardian Angel
@enkel
Dan,

here the data of one person that took Harvoni, its still normal to be detected:

Started Harvoni 12/08/2014 (12wks)
Finished Harvoni 3/1/15
5wk lab detected <15
8wk lab UND
EOT lab UND!
12wk post lab UND!
24wk post lab UND!

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
6 January 2016 at 11:51 pm #8185
Dan
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- Guardian Angel
@dan
Thanks Enkel

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
7 January 2016 at 2:41 pm #8257
zhuk
- Topics: 5
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@zhuk
With only 4 weeks down, you’re on the verge of undetected Dan…you will be fine

GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 – 6 weeks UNDETECTED
AST 26
ALT 26
7 January 2016 at 2:59 pm #8260
darbara
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@darbara
Yes I feel the same no need to panic. The real test is 4 weeks EOT AND 12. The rest are just for ones own satisfaction and to see if the meds work but they mean nothing in terms of a cure.

Treatment naive
F 3/4
Genotype 1 a & b
V/L 17 MILLION
Started Harvoni 11th Dec 2015 for 12 weeks
4 weeks VL UND
6 WEEKS ALT 32, AST 34
EOT 03/03 2016 ! UND
ALT 34, AST 26
04.04.2016 SVR 4
26.05.2016 SVR 12
16.08.2016 SVR 24
7 January 2016 at 3:22 pm #8263
Enkel
- Topics: 16
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- Guardian Angel
@enkel
What is EOT?

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
7 January 2016 at 3:26 pm #8264
sonix
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- Guardian Angel
@sonix
EOT = End Of Treatment ie. when you finish your course of meds.

M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
7 January 2016 at 11:25 pm #8299
Sirchinenge
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- Guardian Angel
@sirchinenge
If you’re at 12 at week 4 there is a possibility you may need to extend treatment I can empathize
I was in the same position, I had bloods done at week 10 and am waiting the results I am expecting to
have to extend by 12 weeks.

I wouldn’t get caught up in the detected versus undetected up too week 12 those results can go up and
down during treatment.

Actually Darbara the gold standard is six months post treatment.

Personally, I think there is a lot of miss information about viral loads during treatment and what they mean.

Sorry you’re having such a tough time Dan it seems to be very hard on you I am confident it will work out.

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.
8 January 2016 at 12:18 am #8306
Dan
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- Guardian Angel
@dan
Extend by 12 weeks. Sounds a lot.
I’m a bit confused about Viral load. Some people get <15 and they say it is UND. I have 12, which is less than 15, that is not UND.

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
8 January 2016 at 12:41 am #8309
LondonGirl
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@londongirl
I’m a bit confused about Viral load. Some people get <15 and they say it is UND. I have 12, which is less than 15, that is not UND.

Me too Dan, you’re not alone

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
8 January 2016 at 12:42 am #8310
Sirchinenge
- Topics: 7
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- Guardian Angel
@sirchinenge
You have to look at this over all okay the testing can only go as low as 12/15 ,between 0-15the virus is so
low they can’t say for sure hence you’re not Undetected.

In simple terms the virus is there in very low amounts if there is no virus the test clearly states you
don’t have the virus any longer.

There are two tests one tests as low as 12 the other 15 there is a wide miss understanding
about VL and what they mean over all while you’re in treatment.

Now, most of Geno Type 1 at week 2/4 come back Undetected 99 % will clear the virus with 12 weeks
of treatment and at six months post treatment be cured.

Look, you’re at week 4, test again in 2 weeks and then think about maybe extending with another DAA
which is what I’m probably doing.

The facts are, VL can go up and down in the 12 weeks of treatment, Gilead don’t consider you a failure if at
EOT you’re a 12 as you can go on to be cured seen as we pay I’m inclined to continue and the medical advice
I’ve being given( If my VL I’ve taken at week 10 is detected) I continue.

But, if at week 8 if you’re at a 12 it starts to look like you’re treatment resistant therefore its suggested you
continue for another 8/12 weeks to give yourself a better chance.

Look, I know how you feel, its deflating everyone else is UD why not me, it hard to get your head around, I think
its best to be aware you may need to continue.

Trust me, I thought this was a sure thing and for the most part it is, some of us take a little longer and
act like F4 with worse geno types.

Lastly,this is why its advised to have a consultant you can talk too, I’m like you a patient am by no means
an expert, I have read the research and spoke with James and my consultant.

Its important not to get worry about what anyone else results are and you understand clearly your own results
and what they mean too you. It would be great if you could chat to a consultant.

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.
8 January 2016 at 12:48 am #8312
splitdog
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@splitdog
The way I understand it, ‘Quantitative’ testing determines the actual number per ml of bloodborne virus. However, it is only accurate between 12 and 10,000,000. The ‘Qualitative’ testing is far more accurate, but can only determine present/not present. So you use quantitative to see how you’re doing until <12, then do qualitative to see if it goes all the way down to undetected. (zero). Dr. Freeman?

splitdog@roadrunner.com

Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
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