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Post Info TOPIC: "I'M IN!! - The 8 week SOF/VEL/GS-9857 Trial"


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RE: sides
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Thanks all for support. So I woke up today fresh as a daisy and feeling better Than I have at any point since I've been on the trial. I'm probably telling myself a story here, but the way I'm conceptualising it is that the meds were doing there final battle to slay the dragon now that my VL is low; and - having won - my body has woken fresh as a daisy today.... ....back in the real world, I think you guys were right and I had some kind of gastro flu for two days. On the point of hot and cold flushes I am certain that they are related to the meds as this side (albeit mild) started immediately after starting the trial. I mentioned it the trial doc who was a bit surprised and said that this wasn't a typical DAA side, so it is interesting to hear from Canuck that this is a unique side to GS-9857. Pablo

__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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RE: "I'M IN!! - Started the 8 week SOF/VEL/GS-9857 Trial"
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Hi Pablo,

Do you still have your Polaris/Gilead trial description hand-out?? Did you read the sides described in there?

While it was still being determined, which arm I was going ultimately end up being placed in, (the 8 week triple sof/vel/gs9857 arm, OR, the 12 week double sof/vel arm), there was a description of sides (one "might" experience), depending on WHICH arm you got. 

The sides were listed for BOTH arms (with and without the gs9857). If you re-read this section of the hand-out, you will see the "possible" sides for the triple was ever so slightly dif, than the sides for the double. Perhaps more G.I. or cold-like symptoms were reported by the gs9857 folks in feedback to Gilead?

I would think "known" sides for these drugs (vel and gs9857) are still being gathered. They could well be non-existent for some people. Known sides for sof should be well documented by now due to it's heavy use/reliance in all regimes now. Sides for vel (perhaps) a little less well documented, and sides for gs9857 perhaps even less so documented (just based on how many subjects have been ingesting vel and gs9857 thus far).

When you read through tkflex36's sof/vel (12 week double) sides - his, he said, were NIL. Webtomass's sof/vel/gs9857 (12 week triple) said "pretty much" the same thing.

For me, my sides, on the 8 week triple, were all in all, very manageable, and were, at times hard for me to really separate from some of my prior long-standing (pre-existing) symptoms. NO nausea (I did wonder on the very first day, if there WAS some nausea happening, as I commenced to have some burgling, gurgling, epigastric "roiling" going on soon after I got my first pill down my gullet, and faintly wondered about whether i was or was not nauseated on day one or two - but ended up deciding NO, that is NOT nausea - I did not feel "sick to my stomach" AT ALL, rather, it was just this weird epigastric burgling, gurgling "roiling" going on for a couple or few hours or so after I took each pill, maybe a small amount of erucitation along with it - but that was all, gastrically, it really didn't bother me (this roiling), I just noted it, every day, after every pill, like clockwork, as as a weird but not bothersome "thing". I took each pill at lunch, and there was always a cessation of this "epigastric roiling" within hours and mostly well before I got around to supper. It was really just a minor oddity, that's all. The gastric roiling persisted up until the last week, but oddly, it did decrease quite a bit, even before I finished the last week. I do think the non-bothersome epigastric "roiling" and erucitation was directly a mild side effect of the treatment/drug(s), I suspect the gs9857?, but I felt like I was "getting used to the drugs" in that last week or so, therefore less roiling? Roiling and erucitation was almost non-existent toward that last week.

I did experience some headaches, especially the first 2/3 weeks, then the headaches also decreased in intensity and frequency. Later half of treatment, they were "ever-decreasing" only a few, small and smaller, infrequent headaches, decreasing proportionately as I neared EOT. Again, I kinda like I was "getting used to the drugs". These were not "severe" headaches AT ALL, they were daily at first, some fairly strong/"moderate" at first, but i never took an analgesic once (I seldom ever have in my life), seriously thought about taking an analgesic once or twice the first week or so, but decided against it, it wasn't that bad, I didn't want to feed my liver any analgesic anyway, nor did i want to mask symptoms that  I was trying to discern as being caused by the drugs. I called my pills my "headache pills" for a while - but, the headaches started to decrease and were quite well tolerated, they got small or tiny and infrequent in the later half of treatment. I do think the headaches were a side effect of treatment/drugs tho.

Headaches (AND, the drugs themselves - I "think") made all my other (pre-exsiting) brain fog, concentration, memory, diplopia and tinnitus more noticeable.

I having been waiting this week (after my EOT) to try to discern how I am NOW feeling, off the drugs - it is still hard to say,! the jury is still out!!, but I will keep you posted when I get it better sorted. While on treatment, the drugs did seem to add an "extra layer" to my normal amount of pre-existing level of fog. This week (after ETO) I am starting to notice that this "extra layer" of fog has been slowly starting to lift. It was like the drug treatment did increase or contribute to how much fog I was having to deal with, it was thicker on the drugs. Additionally, during treatment, I woke feeling like I had an "extra kind" of hangover - like a "drug hangover" - I blamed the drugs. The A.M. hangover got a little less noticeable tho, even before EOT. Post-treatment, I DO think the fog (the "extra" portion for sure) has dissipated greatly, and maybe even some of my "normal" amount of fog is decreasing!! And the "extra" A.M. drug hangover is definitely gone now!!

I DO think I noticed slow and subtle improvements in fatigue, even before EOT. I was starting to experience less of those overwhelmingly irresistible crashing daytime naps that used to overcome me, sometimes on a daily basis! I was "crashing" less and less the last couple weeks on treatment, and even less now! I know I am feeling "some" less fatigue, but mental clarity and fatigue levels are taking me a while to truly sense and measure well yet. Like I say, I'll update you as i go along.

I hope your symptoms are short lived, dissipate and are not sides. I did have some night sweats on occasions during treatment, but I did before treatment as well. Perhaps just like Tig's "man"opause. Of course, me being emotionally liable, moods, irritability factors, frustration with concentration etc., abilties/disabilites were noted during treatment, but I did so before treatment too.

I AM pleased thus far!! biggrin C.

 

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hi Pablito,

i agree with RC.

if you have a temperature, it sounds like an infection - gastric flu, cold or whatever - if you still have it tomorrow maybe you should go to the doc - you might need antibiotics.

it certainly doesn't sound like any reaction to your Hep C meds I have come across on this forum. 

maybe a good excuse for a day in bed with a bottle of water on your bedside table.

Take care,

Syd

 



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Hi Pablito,   I'm hopeing you have the two day flu. If you were on RIBA this would be about the time you would start feeling side-effects-  hang in there your doing great! RC



__________________

 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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Hi all

So I had my first lot of side-effects the last 2 days on the sof/vel/GS-9857 trial: nausea, gastro upset, tiredness, hot flushes and some emotionally lability*.  Worse in the morning (I take the meds in the evening).

I suppose I can't complain as I am week 5 and the first 4 I had none.  And my worst day on the DAAs is still better than my best day on interferon/ribavirin by a long shot.  Nonetheless it does make getting up for work tricky.

*The mood swings/irritability could well be to the stress of worrying about the trial working out for me.

Pablo



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Aaww syd,

Jeez, now compliments! - my good-ness!!, my head is just a-swimming!! - and is getting bigger and bigger by the moment. Thnaks - keep it up!! - you are my very best morale builder!! I heard a ding dong from my computer, and it was you!, always glad to get a ding dong from you - why is it that we often we seem to cross paths at 3AM my time! Ships in the night? Man, when my partner wakes up in the AM, I gotta show him this one, right away! He won't believe I've got you fooled SO goodl!! HE SEES me counting on my fingers! He will get a special chuckle when he reads the clarity part!! Oh well, feels real good.

No, my friend is very ill, and sadly, will not recover, only 66!

Me too!, fer sure ditto what you said, about being on this journey at the same time as you - perfect storm I'd say! Aren't we all lucky to have each other like this.

Now, I am going to go off to bed, if I can manage to lift my overly-inflated ego and my real puffed up head off this sofa. Thansk syd. C



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Dear Canuck, 

your depth of knowledge plus your ability to clearly explain anything medical has been appreciated by a great many of us. Added to that, your compassion coupled with a keen sense of the absurd, makes your posts always interesting, funny, moving or any combination of the three. I feel so lucky you have been on this journey at the same time as me, and whatever you have gained from being here, is small compared to the contributions you have made to so many of us. You go out if your way to write long posts to newbies, clatifying their situation and easing their anxiety.

i hope your friend's health is improving and look forward to hearing what your latest results are.

Thank you for being such a vital part of the support network for me on my journey.

Big hugs,

Syd

 



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Hey everybody,

I neglected to thank everyone, for their very kind, and always enjoyable, bouying, funny, weird, ever-so-cute, creative and supportive posts about me eating my last pill and my EOT. Don't know what I'd do without all you guys! What a wonderful motley crew we are! It truly is, very much, a great privilege for me to be able to share my life moments, fears, happiness and celebrations with you all, and I am truly humbled and honoured to be able to share in yours. 

Since my trip down to my ETO appointment on May 5, chaos and busy-ness has fallen upon me. Too much happening around here. I have a friend who is very ill, and time just goes and goes and goes.

I will post more soon, about my appointment, and perhaps both (the balance) of my 4 weeks labs that I only received May 5, and as well, the newest EOT 8 week VL and labs done May 5 as well - hope I can receive the 8 week EOT VL this week! (Anti-climax tho - we ALL know what it is going to be!) Still exciting tho - I can't wait to see those dang zeros again!

Thanks to each one of you, you are good friends. biggrin  C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Pablo,

AH! I missed that - your 2 WEEK VL was 1000! Whal!, all the better yet! So I'll revise ... SUPER STELLAR! (I read too fast, and wrote too fast, but did later wonder to myself ... why there was no 2 week load mentioned!! I slowed down tonight, re-read and saw, that I had just I skimmed right by understanding that it was JUST your 4 week appointment, AT WHICH you received your 2 week load. Makes perfect sense now! Get ready for further feelings of relief with your 4 week result! (I pm'd you back BTW on your other ques.). biggrin  C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hi all

Thanks for the comments.  You are, of course, right.  A VL at week two of 1000 is not much and the one taken today (i.e. week 4) will no doubt be much lower again.

I think this has been posted before but I found this link very useful.  I've pasted the take home message below. The gist of it is that the new DAAs damage the HCV's replication process and, as such, even if one is still detectable at week 4 (or even end of treatment for that matter (as long as the VL is not so high)) one will likely achieve SVR12 as the remaining viral cells can't replicate properly and die over time.

Cheers

Pablo

"Low negative predictive values of HCV RNA at week 4 underscore the importance of continued therapy for patients who fail to achieve undetectable levels of HCV RNA early on during treatment because the likelihood of achieving SVR12 is still high," the researchers concluded. "Contrary to past experience with interferon-containing treatments, the presence of detectable HCV RNA at EOT [end of treatment] is not predictive of relapse in these studies."

 

 

 



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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JimmyK wrote:

Pablo you are doing great. Outside of trials you would not even get a 1 week or 2 weel VL Count. It is for data gathering right now is all.

The 4 week also is nothing to sweat. It is good to see the UND sure for a moral boost, but fact is EOT + 12 is the true show your hand test.

You are doing great no worries.

 

JimmyK


 I concur with what everyone has said and just like Jimmy mentioned, it is because you are in that trial you have this information. I finished a 12 week TX of harvoni one week ago today and not one VL was taken for HVC. My very first one was taked the day after TX ended and I am waiting for my results. I have to believe just like you that our LFT show what is going on with the dragon and mine have been so much better than they have in 40 years. Even they at their new low, are higher than some that have HVC so these indicators are just that.

Hang in because based on what you are telling us, you are certainly going to be just fine.

SF



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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Firstly, and most importantly ... your VL drop IS brilliant, it IS a VERY profound drop, it IS a VERY telling drop - everyone is scared that their treatment won't work - more so when you have failed a treatment prior - you will just have to go through and deal with this fear - we all do - you have EVERY SINGLE indication to the contrary of failure, you HAVE EVERY SINGLE indication that you ARE responding EXACTLY like the rest of us (who have been lucky enough to get these sof/vel/and/or gs-9857 drugs, and have also experienced a STUPENDOUS dizzying crashing of their alts/asts and VLs. (I am speaking for myself) when I say, as a "desperate" beggar, I could NOT be a chooser, no matter how much I might have wished for it to be otherwise. None of us "on trials" get much "choice", except for getting in a "good" one, with "good drugs", maybe, if we are lucky enough and try hard enough to get there, and be positioned for it . Lucky "Polaris" stars. We had no choice but to accept the vel trials that were currently offered up and running (what was available), the arm(s) we got, the trial(s) and arms that "happened" to have any of the few seats still open and available for us, the particular trial we happened to "qualify" for, within their "narrow" inclusion profiles, it is for the most part "out of our hands. We have no control of this, no choice (in the end, my actual arm was ultimately decided on, by a computer!, and my synthesized parameter data).

We did VERY well to position ourselves to get in the way of this magic velpa comet and grab the tail of it before it sped by us. I hear through the unofficial grapevine, and "depending" on one's country, sof/vel "might" soon be available on the "open" market .... (vaguely "in general" it seems these are the promising announcements), but who really knows (depending on the country, and many other factors), really, how "soon" sof/vel (and especially the triple sof/vel/gs-9857) will be truly be readily available and easily accessible to people everywhere.

Ignore your stellar alt and ast, for just a moment (if you can, for pete's sake!). Look at your CRASH AGAIN!! From 2.1 million!! decimated down to 3000!!! in LESS THAN one week!!! Good-ness me!  Breathless!!Then steady as she goes, still crashing down to only 1000 at week 4!! You have ONLY a mere, minor load of 1000 (already injured, dying) stragglers left to be easily wiped off the face of this earth and you still have half your ammo left!! No brainer. DO YOU REALLY THINK, AT THIS STUPENDOUS RATE ... that another 4 weeks of this MAGICALLY lethal drug combo,  is NOT going to fry up the last few mere bits of maimed virus into oblivion!! They are exploding, imploding, committing suicide, jumping ship, being starved out, poisoned, tortured, torn apart, beheaded, gutted, de-limbed and eaten alive, all the while, and at this very and every second we speak!! WE ALL decimate at our own rates, "personal" warfare style is allowed and condoned, whether you be a Harvonian or a Ribalander. To each their own way.  I can't say if prior load really plays too much into the speed of decimation, with vel or not, maybe, don't matter, you got lots of ammo left. Slam dunk. I had less than half your load, tkflex36 less than me (if I recall correctly). Can't recall webtomass's load at the moment. Maybe it does have a "small" bearing - what is important is that this magic stuff is OBVIOUSLY very effectively lethal ammo and you are following suit, just like the rest of us, you have crashed your ALT/AST/VL SPECTACULARLY! Do the math (if you need to, insist or want to)  but your annihilation/ "kill rate" is as good as mine!! You and I are doing very well indeed, to say the least - we will soon be out of the trenches. Had I actually started my trial when I was at my 10 million load a short time ago, then yes, I guess (knowing me) I would have probably wasted time luxuriating in more worry, more than I did - but I do think, with this potent new regime, that load is very much less a factor.  

Currently, in Canada (this IS my understanding - so correct me please, anyone, if I AM wrong!) I would STILL be waiting (since Jul 2015), if I had wished for my provincial govt. to "allow" me to have even sof/dacla. This is REMAINS the current provincial situ to date, as far as I know, I STILL cannot even get sof/dacla where I am located, even though it was "approved" for use (generally in Canada) "long" ago. International/national/federal/provincial things, such as "approvals" can differ and tend to move slowly and get impeded "in practice" to the reality of wonderful news announcements of the fast-tracking approvals (in theory) that people are truly, desperately wishing and waiting for. Insurance (for some), govts. (for others), "best practices", and the almighty "dollar"gets in the way of what people really need today. Things move slowly, country to country. Here, I was only offered the Provincial govt's  first in line favourite", what's on the "books" (the govt's recommended preference) namely, 24 weeks of sof/riba, AND, I would have had to fail that, before i would even possibly "qualify" for sof/dacla. In my province even sof/dacla is not yet truly "approved" as an easily obtained "first choice"!! Debating, deliberating, deciding was short and mostly mute for me, as far as comparing cure "rates", sides, RAV's to ANY of the drugs that were available to me in my Province. I readily chased the tail of this velpa comet with both hands as my best choice, and feel lucky indeed to have grabbed it, to get myself into this 8 week sof/vel triple trial opportunity. As a 3a, hands down, it was my best choice, had I been a 2 or 4, better yet!

biggrin C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Thanks all.  I will stay relaxed about it all.



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Don't sell yourself short my friend, that is impressive for short period of time!



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hello Pablo,

That`s actually a very good drop in viral load at just 2 weeks in!  And I would say it`s highly likely that your viral load has dropped to `undetected` since then.

It`s only natural to worry and to compare your results with other people`s, but try not to!  You`re well on track at this point and the fact that you`re feeling so much better is also a very good sign. 

The drugs are obviously doing their job, relax!  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Pablo you are doing great. Outside of trials you would not even get a 1 week or 2 weel VL Count. It is for data gathering right now is all.

The 4 week also is nothing to sweat. It is good to see the UND sure for a moral boost, but fact is EOT + 12 is the true show your hand test.

You are doing great no worries.

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hi all

I had my week 4 appointment today for the sof/vel/GS-9857 study (8 week arm) and whilst there's been a big drop in my VL i must profess that I was a little disappointed and slightly worried that the drop wasn't large enough when I compare it to other peoples' drops (which, I know from a psychological point of view, that I shouldn't do).  Anyway here are the results...

Pre-treatment VL: 2.1 million

Week 1 VL: 3000

Week 2 VL: 1000

I had the week 4 VL today and hopefully I should get the result at next appointment in 2 weeks.  I'm going to try and remain a positive attitude, but the whole 8 weeks vs. 12 debate has re-emerged in my mind.  My LFTs normalised after the first week and I have been feeling really healthy for the first time since 1996/7 so I was kind of expecting the week 2 to be in the low hundreds or even <15.

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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LOL!



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Woo Hoo for Canuck

and Syd...the virus has turned its toes up....dead virus ruby red.jpg



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi C

        Let me deal with these goose bumps first!  I can't believe your done!!  You have been on an incredible beautiful journey, you did it like a pro.  I"m so very happy for you. As your post treatment results come back, it will just keep getting better for you. congratulations!! RC



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 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   

Tig


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Hey Syd,

You mentioned a laparoscopy to check for varicies, you mean an endoscopy, right? A laparoscopy is the insertion of a scope into the belly. The endoscope looks inside the esophagus and stomach/upper small bowel. Sounds like they'll have you mapped out from bow to stern when they're done! 

You will need a chocolate sundae when they're done! Maybe you and Canuck can enjoy one together on Skype! Video indulgence....biggrin



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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Such great news Canuck. I hope you are taking some photos of that beautiful countryside in late spring, either before or after your chauffeur makes a quick and, ah so deserved deviation, into the drive through of the pearly M golden gates. And yes, a choc sundae seems like the perfect way to go. 

I agree with WMLJ1960 think that sweet smell is your body thanking you because the virus has turned its toes up.

And yes, I did get your message - it was lovely - you have been a firm hand pulling me along and have handed me many cyber tissues (and belly laughs). 

I still haven't got my latest bloods back but suppose what will be will be whether I'm in the know how or not. My specialist wanted me to have an ultra sound to check on ascites, because I had developed that such a short time before treatment that she's hoping I may have slipped back into compensated mode - I had it today, but of course no results yet. I am also booked in for a laparoscopy to check for  varises and they are doing a colonoscopy at the same time - there will be no stone unturned.

Anyway I'm really looking forward to one of your lyrical accounts of the journey, the appointment and of course, the chocolate sundae.

Syd

 



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Oops...just found the post where you mention VL undetected.  Sunning result Canuck.



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Heh Canuck

Congrats of finishing treatment.  It's a biggie.  And, yes, time flies...I'm almost at the half way stage in no time.

Am I right in thinking from your previous post that your VL test was undetectable at some point during the trial?  (Sorry - I'm still orientating myself to the website and find I get a bit confused with the cross referencing of posts and user names).  If so, that's great news...obviously our presentations are similar and we're on the same trial, and you get the 8 weeks vs. 12 weeks worry, so I'm watching your progress with interest.

Not sure about the Micky Ds...surely you have some tastier bites in Canada?  In fact, I know you do, as I've been there.

I continue to essentially be side effects free.  One day in seven I wake up feeling exhausted, but that could well be from working silly hours 'til late at night (occupational hazard, work in dance music). 

P

 

 



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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YAY!

Wonderful News

Nice Work Canuck

EOT is here, EOT is here

So Happy For Ya!!

YaaaaaaHoooooooooooo!!

smilesmilesmilesmilesmilesmilebiggrinbiggrinbiggrinbiggrinbiggrinbiggrinsmilesmilesmilesmilesmilesmile

 excited-kid.png



-- Edited by Linuxter on Wednesday 4th of May 2016 02:04:27 PM

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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 



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Congratulations

We finished 2 days apart. I cannot wait to hear your results.

I am so happy for you.

 



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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Congrats on finishing Tx Canuck! EOT does have a "good smelling/enticing aroma" to it because you've eliminated that nasty, foul smelling dragon from your life. Now all that's left to do is cover up it's grave and slap an SVR tombstone on it. Job well done!



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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WOOOHOOO!!! I'm so happy that your day to end treatment is upon you. You did it my friend and look at that Dragon after your 8 second ride, they're dragging it out of the Hep C corral now. LOOK>>>> it still has your Velpa spurs dug into it's side!! 

Congratulations and thanks for showing us how it's done! On to SVR....



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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I am so excited for my lil Sister. The day is here.

Sis please go back and reread the first post in this one.

http://hepcfriends.activeboard.com/t61707886/waiting-waiting-waiting/

Also all you folks that find yourself waiting your day is coming. There is an all out war on this Dragon and your day is coming not only to start treatment but also to arrive at the beloved end thereof.

Well done little sister, well done.

Your Brother

Jimmy

 



-- Edited by JimmyK on Wednesday 4th of May 2016 08:35:10 AM

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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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Well done, Canuck, May 4th has arrived!  Congrats on last pill day!!   chew.gif  smile

Onwards to SVR!! 



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(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Thinking of you today Canuck. And just so you know, when I don't feel like driving to DQ, I do go to McDonalds for a sundae as it is closer. Happy EOT! 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hey Canuk, happy last day of tx ;) on to the SVR!



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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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Hi ya syd, 

Thanks - ya, happy day! My last pill will be devoured at lunch tomorrow (which will be May 4), I will be traveling down to the big city at that time (for my EOT appointment the next day May 5), and of course will be forced to stop at the first McDonald's I see to wash it down with some celebratory low fat something (don't tell Linux!) I'll look for a DQ on the way home, just to keep wendy and SF company. Yup, Tig is always right, it has felt like an 8 sec rodeo ride! Hey, I PM'd you BTW if you didn't see it.

Hey Pablo, that is really great you can feel something good! A really nice treat.

Ole syd and me will just have to feel satisfied with our real gorgeous looking VL's and ALT's (for the time being), I'll have a double order of that thank you!!, (syd - do you smell molten chocolate!!??) then, we will get to immerse ourselves devilishly with great unabashed abandon in the delicious velvety sweet syrup feelings of improvements, slowly, savouring it up ... our long awaited decadent dessert, all the sweeter. Oh these just desserts will come - I study the menu and drool! A la mode everything!!

Actually, this last week, and maybe especially the last few days I do discern something dif, better, kinda sweet, but can't quite define it (taste it) yet, but it is some kind of good smelling/enticing aroma. That's as close as I can describe at the moment!! 

I'll fill ya'll in when i get back. biggrin C.

 

 

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hi Canuck,

May 4!!!! Finally understand that we are in front of you by world clock standards, if nothing else, so you've probably got two more days to go. 

So pleased for you.

Syd 

 



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Hello Pablo,

Great to hear you`re feeling a lot better, I would say that`s certainly a good sign that it`s all going well.  smile

The question of whether to change your toothbrush (and razors) on a regular basis while on treatment has been discussed on the forum many times before, and opinions differ as to whether it`s necessary or not. 

Everyone who has ever been infected with HCV will always carry the anitbodies, but they don`t offer any immunity to being reinfected.  Having said that, I believe the risk of re-infecting yourself this way is very low indeed, and personally when I was on tx I didn`t change mine any more than usual.  It`s good hygiene practice for anyone to change their toothbrush fairly frequently in any case, and maybe best to do it for peace of mind if nothing else.

Here`s a link to previous discussions on the subject, if you`d like to have a read of it...

http://hepcfriends.activeboard.com/t44673475/change-your-toothbrush-and-razors/



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hi all

Thanks for your support and tips...I do switch between mental states of optimism and pessimism, but actually my body feels so much better 3 weeks into the trail that something good must be going on.

But I have a very important question to ask; actually one raised by my mother...do I need to dump my toothbrush and get a new one?  The doctors on the trial didn't mention anything about doing so and I don't know if one has already developed antibodies to the strain of HCV that one has already and therefore can't be re-infected by same said strain; but it's such a small thing to do i am going to do it anyway...but does anyone know the science around this?

Pablo 



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Hey SF,  

I finish May 4! Not long now. biggrin C. 

Hi Pablo,

Glad you know your some of labs. Welcome reassuring relief when you see your LFT's normalizing, isn't it.

Maybe you should do even more reading on the trials and synopsis's of the drug trials, it is reassuring when you read all of it, including the most recent (which i believe Jill posted) it was showing (right above) under a title of "2016 - Hepatitis C Breaking Conference Reports (2016-04-24) - News and reports from the 2016 EASL Conference, Barcelona - EASL 2016". Lot's of updates/reports on SOF/VEL/GS-9857 and with differing GT's, and GT3's like me, all in one spot

I know the trial data, up to now, has been limited, small groups, differing parameters, but try not to focus in on the few (and I must stress strongly, the VERY few failures, shown on this protocol. This stuff is appearing more and more amazing, everyday, as the feed back starts to creep into view.

The Barcelona feedback has many old data results included for inspection, but they keep dissecting, re-visiting, re-viewing, and re-examining in a refreshed manner, complete with graphs, to which everyone in that industry is riveted on, we should keep casting our eyes to their reviews.

You, are like me, in that I was lamenting for 12 weeks vs 8 (out of fear and worry), you will find some comfort and relief from your reading about how powerful and effective these drugs are, and from us. I hope you are reading tkflex56's thread, as well as webtomass's journey, these help too, when you can see how well these drugs are working for them. tkflex56 did not get the gs-9857. Both of these gentlemen have done superbly well. 

Tig mentions how powerful/quickly this regime is working (also mentioned in the Barcelona info). That is what I, as well, was posting about in some of the data in that thread ... "General Discussions - GT 3's and SOF/VEL trials". tkflex 56, like me, also vacillated in and out of worry (right up until the end). I drew his attention to that same data, about the super impressive viral decimation seen to start occurring as quickly as within 3 days!! 

I realize your relapse experience has shaken you, but these drugs, are a whole new ballgame. Read about the how these drugs are shrugging off RAV's at start. Near magical stuff. It's working, regardless! Even in the rare failure, good news re: RAV's at end. This really does seem to be a "new" kind of drug, better to fail this regime (than other drug choices) given "in-class" cross-over RAV's, as I am understanding it. 

Sorry about your troubles and your subsequent bout of drinking. I don't know if you should, or can, correlate the drinking, (directly) to your your "aprox" F status. I strongly stress "aprox". So many variables in play over time, but yes, drinking we all know is forboden, just on principal. On one hand, consider this, how do you know your liver biopsies were really 100% accurately showing 0 - biopsies are a tool, a good guess at that sliver spot of time. On the other hand, same applies to fibroscans, as being a "tool" and a good guess, if your fibroscan is 100% accurate, then (on my scale), you have to be at 12.6 to be over the cusp to be into F4, and you have to be at 9.6 to be over the cusp to be into F3. 9.2 would be within F2.

Your biopsy and fibroscan results "may" have well-been quite accurate .... but I am Pm'ing you about fibroscans. 

I think 8 weeks will be the new normal, with maybe 12 weeks reserved for F4's? Just guessing.

I believe you have made the best possible choice with this regime. I'll look forward to hearing more on your progress. smile C.

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Hey Pablo,

While the results of the 8 week regimen aren't in, there are a number of reports regarding the efficacy of the 12 week program. Incredibly high SVR rates are reported. "High sustained virologic response achieved with sofosbuvir/velpatasvir and GS-9857, even in patients unsuccessfully treated with direct-acting antivirals The study showed that 99% of patients with HCV genotype 1, 2, 3, 4 and 6 who had previously received treatment, achieved SVR 12 weeks after treatment using this triple combination". That's the deal with these trials, consider yourself a pioneer and be honored (I would be) to have the opportunity to prove that the shorter course of treatment is viable. Your success and from what I read, there is no reason to doubt otherwise, will mean a lower cost and patient impact across these genotypes. Your willingness to step up and do this is important for everyone affected by this. The 12 week protocol results indicate rapid declines in viral load, I mean in a matter of days after starting. Since you are non cirrhotic, 8 weeks of this magic bullet provide a very good chance of achieving SVR. Stay positive and do your part. I think you've got an excellent chance of defeating this disease right now, you should too. It's an anxiety ridden time right now, just wondering if things are working. Do your best to throw those doubts and concerns aside and fix your thoughts on success. You'll get there!



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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Hi all

I decided to stick with the 8pm dosing and not change it.  And thanks for the pill organiser tip...in fact, I actually forgot one day whether I had taken my dose so had to count all the pills in the jar to check.

I had my day 14 appointment today - boy time goes quickly - and my week 1 VL isn't in but my LFTs normalised after one week so it's clear the triple therapy is a strong combo.   The clinic was quiet today so I got to speak to the doctor for quite a while and he told me that one of the reasons they think people fail treatment is that reservoirs of HCV linger in the body's organs so that whilst the DDAs clear the virus quickly from blood it's these hard to access pools in organs that cause the problem, and hence why people with cirrhosis need longer treatments...

...which got me to thinking (again) about the length of the trial I am in (8 weeks).  I read 2 studies which were relevant, both in difficult to treat populations.  The first showed SVRs of 99.5% with no relapsers on 12 weeks of triple therapy.  The other gave SVRs of 89% on 8 weeks with a handful of relapsers.  In the second study there were arms with 4 and 6 weeks too, both showing much lower SVRs.

So it does seem that length of treatment is important. It's frustrating to think that an extra 4 weeks of treatment would almost certainly guarantee success*.  But I guess I'm probably not in the difficult to treat category: my pre-treatment VL was only 2 million and I don't have cirrhosis.  The only negative prognostic factor is my failed prior treatment with I/R.  So my analysis is that the trial arm I am on is similar to, or perhaps slightly better than, the alternative route, via the NHS: 12 weeks of Harvoni, which also gives SVRs of around 90% across the board.

On the note of fibrosis, I'm a bit confused.  My last 3 biopsies placed me at F0, whereas my recent fibroscan score was 9.2, placing me at F3/4.  There's been a 2 & 1/2 year gap between my last biopsy and last month's fibroscan so there's probably been changes in the interim.  But that's a lot of progression is a short time.  Unfortunately, I had a 4 month relapse (following a difficult divorce and subsequent custody battle) when I drank a bottle of wine a night shortly after the last biopsy, which probably caused the damage.  Thankfully, aside from those 4 months I haven't drank or drugged since I contracted HCV, which is probably why I don't have more fibrosis.

Anyway the past is the past, and it seems that people can reduce their fibrosis score by at least one stage following SVR; and I suspect further healing is possible over longer periods of time.

But, overall, I don't want to moan as I am lucky to get on this trial and to get no side effects from the meds other than fatigue.

Pablo

*I have toyed with the idea of going to India to get an extra 4 weeks of the meds.  I wouldn't be able to get the experimental drug but the other 2 I could get.  But it's quite a big decision to make and fraught with hassle and uncertainty, and it would mess with the trial results so I won't do it; but I have thought about it.



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Welcome Pablo,

You will get all the right answers here!

Canuck!  How many more days for you? I have lost track!

It seems you are still doing great on it. That is wonderful!

 

SF



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



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Hi Pablo.

 While we are on the subject of taking your medicine I would like to suggest getting a pill organizer if you don't already have one. It helps if you're not sure if you took your dose for that day or not. You don't want to miss any doses or take double the dose and this is a good way to quickly determine that without having to count pills. Welcome to the forum. smile

[Pill organizer images attached]



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Pablo,

I try to NEVER vary the time the time I take my sof/vel/GS-9857. I started taking it at lunch (with food, as instructed) and will continue to do so no matter what. Being that you and I are on such a "SHORT" treatment arm anyway (8 weeks), AND, you are already WELL into your course now (for over one week?), AND did not (?) really express any debilitating sides?, then I would not be going to all the trouble to radically shift the dosing time from night to day.

In any course of ongoing daily "systemic" treatment, the idea is to keep supplying a CONSISTENT/EVEN dosing - you have already established this time, for a week now, your daily peak and wane of "saturation time" (as JimmyK mentioned), AND, are already "used to" taking your dose everyday at a particular time ... so ... although it is not impossible to change the time of day (only on advice of your doc, like Gracie said), why bother if you have had no major troubles?

I was repeatedly reminded (just before I got my meds, and on day one) to "strive" to take my med at the same time everyday, so I will, and they ask me, at each appointment about my timing ... they usually ask me "what time did you take your pill yesterday?", and, "what time do you usually take your pill?" - I have a feeling consistent dosing time is important for them to know (when they are looking at your fasting blood draw values/concentrations in relation to your last dose), timing (specifically and or in general) may be of note to Gileads data collection. So, just easier/better all round I figure to maintain a consistent, predictable pattern for them and for you.

If timing is problematic for you, then I would only change it as they advise.

Just curious, did you have any older labs to share with us, ie old ALT's, AST's?

I am glad you are starting to feel more confident in your choice. And I lament your bad experiences. Speaking of conditioning and emotionally driven thinking - I think it is a self-protective necessary thing we all seem to juggle/struggle with - I found being driven by my outright panic/fear was helpful to me in the beginning as it only helped to propel me at hurtling hysterical warp speed to land me as quickly as possible to the right place and drugs. I feel the the waves of fear falling away from me in great sheets of relief, as I go along, like the glee of the happy babes Syd so aptly describes whilst unwinding them from their pig's in a blankey cocoons.

I fondly recall one person's "mantra"  here - she posted something to the effect of ... "but what if I fall? ... oh, but what if you fly my dear!". Loved that one! (Mine tends to go more base I am afraid ... "Kill, kill, kill!" - you might have to go to the warped poetry section to figure that one out).

Dare to dream! Your ALT and VL may have already started to crash, and you just don't know it yet. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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You can switch times. You have to do it over time though. Ask your doctor. Maybe an hour each day or something like that. 



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1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



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Hiya Pablo! Welcome.

 

It is best not to switch up. If you have been taking it at a particular time stick to that time throughout treatment. Your saturation will be more consistent.

Regards

 

The 5:55a Guy!



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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Thanks all for the warm welcome.  I am feeling increasingly more confident I made a good choice.  I will ask for VL results soon...it's really that I am scared to potentially get bad news (even if it is unlikely to be bad news).  I had a 10 year 'battle' with the previous hospital whose catchment area I previously lived in (and, therefore, was treated by, as per how the UK healthcare system worked; or at least how it did back then) to get Int/rib treatment. Back then there were no things like the NICE guidelines hospitals had to adhere to and each one made up there own guidelines...I was always told that I was not a priority as other were more sick than me.  So it was such a big disappointment when the treatment failed after 10 years of asking for it and finally getting it, I'm almost conditioned to expect a bad outcome when it comes to HCV.  I know on an intellectual level that the odds are hugely in my favour but my response is more emotion-driven.

I did have one question though...what is the best - if there is one - time to take the medication?  I take it at 8pm.  My thinking being that if I got side effects then I'd be asleep for a whole chunk of them.  The reality has been, as mentioned already, that I'm not getting any side effects other than feeling tired in the morning and struggling to get out of bed.  It's not a problem per se as I work for myself from home so I can start work whenever I want.   That said, I'm thinking that taking them in the morning might be better so I don't feel sluggish when I wake up.

Cheers

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.

Tig


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Welcome Pablo! You're on a fantastic trial and all indications are very positive that this is another block buster treatment. You've got a great group of supporters here on the forum and we'll be here to cheer you on. Good luck!!



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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So happy to hear you're in the ZERO club, Canuck. Nice for you, Pablo, to have others on the same trial a bit before you. No sides sounds good.

Hugs,

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Hey Pablo,

Welcome to the club! Congrats on getting yourself to and into this trial.

Very glad you showed up here. Glad to have a fellow trial mate to compare notes with. So ... now we have (the count to date, including you), at least 4 of us here, "testing" out sof/vel +- GS-9857, and, maybe a 5th coming to start soon. (I hope you have found the other threads for tkflex36 and webtomass as well).

Lucky you! to get in on this opportunity, especially knowing you are starting with little or no cirrhosis! I am fully expecting you will follow suit, just like, tkflex and WTM and me, and have your VL decimated in short order. I think you have made good moves, a wise choice, and good you kicked the "to enter or not to enter" decision around with an experienced hep guy. I agree with your thinking on the "gamble", but it is ALL in your favour. It is only natural you needed to feel firmly comfortable in your choice and in having a plan c (for after vel) given your disappointment with interferon/riba - and anyone asking for a 3rd treament after 2 failures would get priorty anyway - but please try to concentrate on what is happening now ... tkflex and I are 3's (historically "typified" as "harder to treat" G's, me, packing a higher F status than tkflex), and WTM (like you) is a 4 (but with cirrhosis, and a prior failure under his belt), AND WE ARE ALL responding perfectly. The response to these new drugs is very exciting!

It is hard to quell worry tho, we all vacillate in and out of it, but it IS kind of useless worry, it does serve a self-protective purpose, but like all of us in trials we have no choice in length - 8 weeks/12 weeks/with or without - we are just fortunate (indeed) to be getting these powerful drugs, period, and at short lengths (another really nice bonus) that they have already been successfully testing out and are proving work fast and effectively. I believe the very design of this sof/vel/GS9857 IS to be short.

Really nice to hear you have already discerned a "dif." in how you feel after only one week (with the lessening or absence of the hangover you have been packing), and in feeling no sides! (good to know). I am not much a of a "betting person", (but boy do I ever enjoy winning) and I feel strongly all of us velpa people are going to trump this spectacularly.

I bet you "might" knuckle and ask for a VL. If not, then you should be able to continue judging, by how you feel, and just based on what is happening here to the rest of us on this magic star dust.

Glad you joined. smile C.

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

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Hi Pablito, Welcome to the forum. Great score on the trial you have stated, you'l do well. Glad you found us and ask away  with any questions  you have.  RC



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 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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Hi Canuck and everybody

Just joined the forum and glad to hear of your progress.  I have also just joined the same trial and am in the 8 week triple therapy arm too.  I've been on the treatment for one week now.

I don't know my VL and other bloods.  In fact, I deliberately didn't ask for them.  I know how my mind works - I can get a bit obsessional about these things - so I'd rather not know until the end of the trial.

However, I can tell something good is happening...that slightly toxic - like a mild hangover - feeling I've had for years on end is now completely gone.  And practically no side-effects.

I do worry that 8 weeks is perhaps not long enough though.  I had a failed Interferon/ribiviron treatment 7 years ago after which my VL bounced back to 7 million or something like that.  I'm male and have had genotype 4 for 18 years so have some other negative prognostic factors.  But I have no cirrhosis and haven't drank/drugged for over 15 years so they are positive factors.

If it doesn't work though I have will have the option of a longer Harvoni treatment via the NHS after the trial so I figured the study was a good 'gamble'.  Albeit I'd have to push hard for further treatment as there are plenty of patients with more advanced disease who would be at the head of the queue, but I've learned that being a 'polite pest' is the way to get what you want from the UK health system.

I sought out a 2nd opinion from a Professor of Gastroenterology before agreeing to join the trial and he thought that 8 weeks on the triple therapy was a good option, but I would be interested to hear other peoples' views on the issue.

Thanks

Pablo



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.

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