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TOPIC: Jaz's Sof/Dac Journey Gen 3a

Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8142

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GAJ wrote:
Jaz wrote:
4 week results = detected

They didn't do a quantitative so will request one be done now and give me the results on 2nd feb.

Feeling a bit emotional. I knew I might be a bit slower to get to und with a 9 million vl so I shouldn't be surprised by this. I'd just hoped it would be und

Hi Jaz,

If it's any consolation, I am in the same situation. Waited three weeks for my results due to Xmas break then told the lab only ran qualitative on mine. So now further wait for quantitative retest results. I'm not worried about not being undetected at 4 weeks as I knew that was a long shot with my status/history but not knowing if there is any change at all is frustrating. (Though I assume there must be change as my LFTs were improved a lot and I feel heaps better :))

For others, may I suggest you clarify exactly what they are testing prior to the test to avoid this situation.

I remember reading your post and thinking how frustrating that would've been. I even knew there was a chance she would request a qualitative test but still did not remember to make sure she did the quantitative. Just before Xmas was feeling a bit overwhelmed with everything and completely forgot. When I realised a few days after the test was taken I just crossed my fingers she had in fact done v/l or if not it would be und and I wouldn't need to worry.

She said they will have to reasses whether they do quantitative in future for people at 4 weeks.

I'm glad you're feeling better and the lfts have improved, that is at least some sign that things are going along well.

Would there be a possibility I might need to think about doing a longer treatment?
3a F0 TX Naive
Started Tx 12/12/2015 Kingswood Sof/Dac

Pre Tx - ALT 71 AST 40 V/L 9 million
Day 11 - ALT 12 AST 15
4 week - LFTs normal - detected (same sample sent for v/l showed undetected) :/
6 week - UND
12 week EOT - UND
SVR4
SVR12
Last Edit: 3 years 10 months ago by Jaz.
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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8149

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Hi Jaz,

I can't remember whether you said you were going through a clinic/specialist or just via your local GP but in either case please consult with them as to the best course of action for you. But as it is a Friday afternoon I will just make some general comments to allow you not to worry over the weekend until you can talk to someone with more knowledge.

Okay, so I'm no medical expert but here is a post from Dr James on VL testing. It looks like you and I are in the 18% who aren't undetected at 4 weeks, but note all were undetected at 8 weeks. I have seen one person here who was not undetected until 10 weeks but from memory they tested at 6 and then 10 weeks so they may have been undetected at 8 weeks without knowing it.

fixhepc.com/forum/experts-corner/287-vir...-what-to-expect.html

There have also been posts on this site about people having very low detects of less than measurable quantity at even the full 12 weeks and still having an excellent chance of going on to achieve SVR12 or 24.

So what does this mean for you? Well you said your fibroscan was good (although I haven't seen anywhere what it actually was), but assuming that means F2 or less then I would think 12 weeks is normally more than enough treatment. If I was you, I would get another test at 8 weeks and see if that was UNDetected. If it was then I wouldn't worry and just finish your treatment. If it was still detected I would discuss further with your specialist/GP or maybe seek a second opinion from someone like Dr James via GP2U or similar.
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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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8158

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GAJ wrote:
Hi Jaz,

I can't remember whether you said you were going through a clinic/specialist or just via your local GP but in either case please consult with them as to the best course of action for you. But as it is a Friday afternoon I will just make some general comments to allow you not to worry over the weekend until you can talk to someone with more knowledge.

Okay, so I'm no medical expert but here is a post from Dr James on VL testing. It looks like you and I are in the 18% who aren't undetected at 4 weeks, but note all were undetected at 8 weeks. I have seen one person here who was not undetected until 10 weeks but from memory they tested at 6 and then 10 weeks so they may have been undetected at 8 weeks without knowing it.

fixhepc.com/forum/experts-corner/287-vir...-what-to-expect.html

There have also been posts on this site about people having very low detects of less than measurable quantity at even the full 12 weeks and still having an excellent chance of going on to achieve SVR12 or 24.

So what does this mean for you? Well you said your fibroscan was good (although I haven't seen anywhere what it actually was), but assuming that means F2 or less then I would think 12 weeks is normally more than enough treatment. If I was you, I would get another test at 8 weeks and see if that was UNDetected. If it was then I wouldn't worry and just finish your treatment. If it was still detected I would discuss further with your specialist/GP or maybe seek a second opinion from someone like Dr James via GP2U or similar.

All I know is at the fibroscan they said my liver looked perfect and they had absolutely no concerns so I assume F0? Yeah I am going through a gastro clinic at the hospital.

Those stats are reassuring. I will try to stay positive about the outcome. I appreciate you taking the time to reply GAJ, thank you I do feel a lot better now.

I'm having another qualitative test at 6 weeks so hopefully I will get both results at the same time. I am a bit concerned that I'm using up all my tests before EOT! But I'll just have to foot the bill I guess if I fall a bit short for the post Tx ones.
3a F0 TX Naive
Started Tx 12/12/2015 Kingswood Sof/Dac

Pre Tx - ALT 71 AST 40 V/L 9 million
Day 11 - ALT 12 AST 15
4 week - LFTs normal - detected (same sample sent for v/l showed undetected) :/
6 week - UND
12 week EOT - UND
SVR4
SVR12
Last Edit: 3 years 10 months ago by Jaz.
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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8339

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Hi Jaz, glad GAJ, put your mind at ease. When I spoke to Dr James the other day, I started Sof/Dac 13/01/16, he said since Medicare only covers 2 Quantitative and 4 Qualitative tests p/y that I should only get Qualitative at 4 weeks. If you're at a Public Clinic that's probably why they did that. I'm G3a too and Doc recommended 16 weeks Tx for this Genotype, how long are you treating for?

Good Luck and keep us informed of how you're doing. I look forward to reading everyone's journey because we are all different and our body's will react a bit differently too.
All the Best :) #love
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8347

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Hmmm my plan is still to go quantitative at 4wks, then again at EOT because I'm providing info for Redemption-2 (though it turned out I couldn't be an "official" trial participant after all lol I am submitting the stats) Qualitative at 4/8/12 SVR (with luck)

As GAJ says, don't think you have anything to be concerned about Jaz...a 6wk test sounds like a good idea. You're going to be going in the right direction, whatever the specific numbers.

Hey great to hear you're off and running now, Chejai! Look forward to hearing how you get on :)
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
Last Edit: 3 years 10 months ago by zhuk.
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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8380

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That's interesting Chejai that you are doing 16 weeks. I had only planned for 12 weeks but will get some further advice on it. I thought that was all I would need based on my lft's always being good for the past 10+ years and apparently no damage to liver. I wasn't expecting a 9 million v/l either so that was a surprise.

I would have preferred the quantitative at week 4. I'm not expecting to need another v/l past this point so why not use them at a point they can provide useful info and also encouragement to the patient. Maybe its a bit of a case by case thing, it may not be as necessary for people with lower v/l as you'd expect to be und at 4 weeks. I'm not sure if it's right to assume someone with lower v/l will reach undetected more quickly? It sounds logical but seeing as v/l does not correlate to patient wellbeing I don't even know :huh:

I'm sure it's all going along the way it's meant to be though :) hope you guys are travelling along well with your Tx
3a F0 TX Naive
Started Tx 12/12/2015 Kingswood Sof/Dac

Pre Tx - ALT 71 AST 40 V/L 9 million
Day 11 - ALT 12 AST 15
4 week - LFTs normal - detected (same sample sent for v/l showed undetected) :/
6 week - UND
12 week EOT - UND
SVR4
SVR12
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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8393

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It was me that was still detected at late week 5 there was concern with my profile I was behaving
like a f4 I decided to extend treatment due to factors outside my control I could not take bloods till
week 10 at that point I was UD who knows when I became UD.

Personally, knowing what I know now I would only do bloods at week 4/8 and 12,its to easy
to get caught up with other results which is not healthy or fair on ourselves.

Jazz, F0 is a very low score you're perfect for treatment ,Geno types also play into the equation
I would not worry at week 4 you're not clear..........


Question One:

"What does this test mean?" This question is accompanied with test results such as:

HCV Viral Load (Log IU/mL) <1.18 NOT DETECTED

Answer: This is the very best news.

Undetectable means that hepatitis C is gone, and presumably all gone. The confusion over this test is because viral load tests don't measure down to zero. Further, viral load tests vary. For instance, the Abbott RealTime HCV assay (assay is a fancy word for a test that determines and measure the ingredients of something) measures down to 12 IU/mL in a 0.5 mL sample of blood. This means that if you have 12 IU/ml of hepatitis C (HCV RNA) in your blood, the test will detect it and count it. If you have less than 12, the test might not see it, and if it does, it won't be able to count it. .

Each test has its own detection range, some lower than others. The main thing is this:

"Not detected" = negative for hepatitis C
"Detected" or an actual number of how much HCV RNA you have = positive for hepatitis C

If you are concerned that you may have some residual HCV swimming around in your body, hoping to set up shop in your liver, rest assured, as this is quite unlikely. Hep C replicates a trillion times a day, so "not detected" might as well be zero. It is extremely unlikely that a small amount of HCV will remain alive in your body without having replicated to much higher amounts. In fact, viral load tends to replicate at much higher numbers when treatment fails.

Question Two:

I am on treatment with Harvoni. My pre-treatment viral load was X million. My week 4 (or week 8 or week 12) viral load came back detectable. I am devastated. Should I be?

Answer: No.

In the old days, back when treatment was long and used interferon, there were clear milestones that helped us know what our chances were of permanently clearing hepatitis C. Ignore all of that. New research funded the NIH Clinical Center showed that low levels of HCV RNA at the end of treatment are not predictive of treatment response among patients with hepatitis C virus treated with interferon-free regimens. (Clinical Infectious Diseases, March 2, 2015) In fact, low levels of HCV RNA detected at the end of treatment, and even post-therapy, do not signify treatment failure.

Here is a bit more information. Sidharthan and colleagues enrolled 114 subjects with chronic HCV/genotype 1 and no prior treatment. Six patients with detectable viral load at the end of treatment achieved a sustained virologic response (SVR12). You can read more about it: Utility of Hepatitis C Viral Load Monitoring on Directly Acting Antiviral Therapy - S Sreetha Sidharthan, et al.

The bottom line is that a detectable viral load at the end of treatment DOES NOT mean that treatment failed when using Harvoni-based treatment.

Important:
Don't despair if you have detectable virus during or at the end of HCV treatment.
Be sure your doctor doesn't stop treatment just because you have detectable HCV RNA. The HCV guidelines recommend viral load testing after 4 weeks of therapy and at 12 weeks following treatment completion. If quantitative HCV viral load is detectable at week 4 of treatment, repeat viral load testing at treatment week 6. If viral load has increased by greater than 10-fold on repeat testing at week 6 (or thereafter), then discontinuation of HCV treatment is recommended. There are no other recommendations to stop or extend therapy based on viral load 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.
Last Edit: 3 years 10 months ago by Sirchinenge.
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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8396

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Hi Sir,

Thanks for that post, very informative. I agree with you about running fewer tests under new DAAs however in my case (and from what Jaz said also her) the lab only ran the basic qualitative test so all my clinic could determine was that I have HCV. Now this test would have been fine if I had come up as undetected but I didn't so currently they don't know if my V/l has gone down, up or even sideways, which is why they have requested the lab to retest. In theory my LFT dropping may indicate response but it has dropped to those levels in the past although not for a long time. I'm not particularly worried or feeling rushed given the need to treat for 24wks anyway but with prior exposure to Dac in a trial 3 years ago it would be nice to confirm no ns5a resistance by actual results sooner rather than later. :)
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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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8397

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I thought all tests come up with a number other wise they have no idea if you're
VL is going down.

The only time its suggested you stop treatment is when you're VL increases.

What test did they preform exactly I agree its important you know its working.
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.
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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8400

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Basic qualitative, no attempt to quantify even whether above or below limit of detection, just "RNA Present: Yes/No".

The answer was Yes so I have HCV apparently :whistle:
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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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8402

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That's a pointless Test I'm lost why they would bother its not helpful.
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.
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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8403

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I think if it's detected it's above.the 15 limit. I could be wrong but that's my understanding . That was the same test I last had which came up UND.
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8404

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Errrrm, yeah! Who knows? (we really need an animated shrug) The frustrating bit is that with Xmas/New Year and people on leave, etc. I didn't get that result for over three weeks, unable to determine what went wrong and now waiting on retest results.
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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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8405

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Hi Paul,

No apparently the nurse can't even determine that. Not a lack of experience either so I'm keen to hear what she finds out next week.
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:
Last Edit: 3 years 10 months ago by Gaj.
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Jaz's Sof/Dac Journey Gen 3a 3 years 10 months ago #8407

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Hi Jaz,
We both have a big viral load, 9 mil. :woohoo:
Unhappy your 4 weeks viral load is not the desired UND.
But as Sirchinenge pointed out there is no problem for reaching SVR12! :cheer:
Thanks Sirchinenge for your well documented post.
I also wait my 4 weeks viral load, this monday.
Wish you UND as soon as possible! :lol:
HCV since I don't know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful :)
virus not detected 06.02.2016 & SVR24
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