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Jaz's Sof/Dac Journey Gen 3a 6 years 9 months ago #5183

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Hi Jolie, That's great your sleep has improved. I have not been the best sleeper in the past so I hope it doesn't have any effect on my sleep, so far no trouble. So long as the sleep is ok I'll try take them in the evening. I'm not a morning person, it takes me a while to get going so I would rather be clearer in the morning. If being clear headed is going to be possible at any stage.

I slept through my alarm this morning but got up with some energy when I finally did wake up. Felt a bit groggy and had trouble staying focused on my work and took about half the day to get into the rhythm of it. I think the computer felt the same way which made for a frustrating few hours, my brain wasn't working, the computer kept freezing :lol:
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 6 years 9 months ago #5185

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Jaz wrote: I think the computer felt the same way which made for a frustrating few hours, my brain wasn't working, the computer kept freezing :lol:



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 6 years 9 months ago #5241

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That pretty much sums it up GAJ :lol:

So apparently I'm not getting a viral load test at 2 weeks and only a pcr? As in detected/undetected. I think I've only had one this year unless I had one earlier in the year that I'm not aware of. Is it done by financial year or Jan to dec year? Should I push for it or not worry?
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 6 years 9 months ago #5244

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Hi Jaz,

The time starts from date of the first test so rolling 12 months. Below is a link to Dr James recommendations and thoughts on what the tests mean to someone on treatment but please also be guided by your clinic who you say are supportive. The VL before and again early in treatment is really about seeing if you are responding quickly which seems to be a given with these new DAAs. It is probably as much a hang over from the old interferon days as anything (and giving you confidence) unless you are checking a new medication for RVR as the Doc was pre Redemption trials. Plus, if you get an undetected at two weeks for qualitative then that is just as good as an undetected for quantitative. But as the Doc notes, he hasn't seen anyone yet who isn't undetected at 12 weeks.

fixhepc.com/forum/experts-corner/364-vir...-vs-qualitative.html

In my case we used a VL Qty test at the start of this year investigating the surge in activity in my liver so my Hepatologist says to just do the 2nd one at 4 weeks to ensure I am seeing a rapid drop. If this is the case I will then wait to 12 weeks even if it is still detectable at 4 weeks.. But am confident that it will be good anyway as you should be for your Tx too. :)

G
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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Last edit: by Gaj.

Jaz's Sof/Dac Journey Gen 3a 6 years 9 months ago #5279

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Thanks for the info G. On second thoughts I think I got a bit mixed up and the intention was to have the qualitative one at 4 weeks and just lft etc at 2. They said there would be no point having qualitative so early. I guess it could be off putting if it came back detected with no other info.

I will also be two weeks on Boxing Day so will be having the lft on day 11 so I can see them On day 12 (Xmas eve). Then they will be away until the 11th so I won't get any further results until then. From what I understand the pcr tests take a week or two to get back? I guess it will just be best to wait until the 4 weeks since I'll have no access to my results anyway.

I did see a lot of people with UND at 2 weeks on here and was thinking how amazing it would be to see that so early. I'm just impatient and want to see some results! But it will be worth the wait. I am feeling confident that this will go well. Everything points to good results :)
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 6 years 9 months ago #5514

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Welcome Jazz, also fellow 3a, waiting for Sof/Dac to arrive and start Tx.

Good Luck and look forward to sharing your journey to Healing :)
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 6 years 9 months ago #5546

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Thanks Chejai!

Wishing you all the best 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 6 years 9 months ago #5854

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Heeey guys,

Just wanted to post an update. I'm on day 9 now and feeling pretty much back to normal. Had the foggy strange feeling mostly in the first 2-3 days but it started to clear up by about day 5.

I started to experience the discomfort in my liver area for the next few days but it has subsided a little now. It's not painful just a feeling where I have to readjust how I'm sitting all the time and make sure I'm not slouching. I had this a lot a few years ago but it eased almost completely and usually pre-Tx just comes and goes now and then.

Does anyone know if the qualitative test comes back quicker that the quantative? I'm getting some tests done on wed and seeing the nurse thurs and want to see if I get them done if it will be back by the following day for my appointment. I know the lft etc will be because I get them done at the hospital but just not sure about the pcr. I know the quantative gets sent to qld and takes a week or two.

Interesting week it's been with the news of the pbs listing. I have no regrets about starting tx. No delays to worry about. Fingers crossed what they are saying is true about no restrictions treating people and no waiting...looking forward to more details.

Hope you are all cruising along well and getting ready for a great Xmas xx
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 6 years 9 months ago #5945

Hi Jaz,

my VL come back at 19 about 3.5 weeks into sof/dac treatment. Other tests barring platelets were okay.

Clinic that did test seems wanting to save paper, so I only got the results over the phone.

Viral Load wise, I am told the virus retreats and in my case will likely hide among he scar tissue while on treatment anyway, so quantitive testing should only show what qualitative testing would - undetected.

While noting the importance of having a doctor seeing what's going on blood test wise during treatment, part of me would be happy to not bother with VL (indeed any other test!) until well after the end of treatment. Not a good look health wise though, so testing we will go.

Main thing I am trying to say is that most of us here have graduated with flying colours through the University of the Great Wait, so I am okay about a few weeks or indeed a few months waiting.

But then again, it was good to hear the 4 week test results........

Hope/know yours will be the best.

yours


J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.

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Jaz's Sof/Dac Journey Gen 3a 6 years 9 months ago #5976

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Thanks for your reply sabrecat. From reading a bit online I'm guessing that either test will take longer than one day so I guess I'll just have to wait til 4 weeks. I'll just need to be patient. Had my last day of work today so it will be good having Christmas and holidays as a distraction.
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 6 years 9 months ago #6832

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Happy new year to you all! Hope you all had a great Xmas. Very exciting times for those of you who have recently started treatment :)

I got my lft results from day 11. The day before I started treatment my alt and ast had spiked above normal levels for the first time in years. Little bastards must've known I was about to start a war on them.

So
Pre-tx 11/12/15: ALT 71 AST 40
Day 11 23/12/15: ALT 12 AST 15

Really happy to see these results. Although my alt and ast have nearly always been in the normal range they have always sat higher than the most recent results so I'm glad to see them much lower.

Next up 4 week viral load, results should be in 15/01. I found out my viral load pre-Tx was about 9 million. Had always thought it would be lower due to minimal symtoms but apparently not.

Treatment is going well, managed to get through a 7 day holiday without feeling tired like I would normally. Had plenty of energy for all the fun in the sun, it was great :) my appetite is good, will have to keep an eye on that though!
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 6 years 9 months ago #6860

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Ok, Jaz! I'll be waiting for your 15/1 date! :)
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Jaz's Sof/Dac Journey Gen 3a 6 years 8 months ago #8131

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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
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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Last edit: by Jaz.

Jaz's Sof/Dac Journey Gen 3a 6 years 8 months ago #8132

Yes. And post the results. It is probably <25.
;)
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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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Jaz's Sof/Dac Journey Gen 3a 6 years 8 months ago #8138

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Jaz wrote: 4 week results = detected

They didn't do a quantative 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.
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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