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


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RE: "I'M IN!! - Started the 8 week SOF/VEL/GS-9857 Trial"
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you got this Pablo! TRY to stay out of your head and have a good week. First things first



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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

 

Tig


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Quite the journey, no doubt! That's interesting background on your trial numbers. You were both fortunate to be involved in this trial. You couldn't have better timed things. Such an incredible treatment, thanks Pioneers!!

Pablo,

Don't sweat the test, it'll be Undetected - SVR24! We'll be waiting Brother...



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Ya bud, I know.

Sometimes ... it doesn't take much to get us back to feeling, well ... "fretfull". You had extenuating circumstances, that set you up well, for exhausting worry - pre-primed. And you had a very good amount of time to practice this. I still do it too, give in to fretting, but I accept it now, I don't feel bad about it anymore, seeing myself "in operation" and seeing all the other folk here who have entered into the "trust of treatment" (naive or otherwise), I have learned a lot from everyone, and, a little bit from myself too. Doubt is what it is all about, we have to have a little, just to get through it, and to get by it (you know what I mean? ... it's normal shat). I am no longer disappointed in myself for being a mini-doubter from time to time, or, of being appropriately joyous or worried at the "correct" or expected times). People do not have to justify their fear or doubt, just be aware of it, and juggle it into it's time and place.

For me the EOT+24 was "kinda" the easiest one, stress-wise, but I know this is NOT the case for MANY.

My 24 week result was SLOW!! Waiting for the official confirmation "paperwork" just about drove me crazy (again) like some of the other slow-return ones did. Many delays and screw ups, they did give me a verbal, but (because of my "prerequisite" doubt friend) I NEVER (truly) accept a verbal, (I made up my own stupid rules) - I make NO "absolute" announcement to others (nor fully accept it myself) until I see the actual written "paper" with my very own eyes! Glutton for punishment then, if the results come back slow. Murphy law self-torture rule.

Had my draw on Oct 17, called frequently, through many stupid miscommunications (their end!) ... vacations, not in today, they are too busy, forgetful, are not prioritizing my request, dumping duties from one staff to another, can't make the fax machine work, etc., etc.... to finally getting the "printed" paper confirmation in my hands on Oct 31! Not all is forgiven or forgotten (the things like the horrors in the blood letting room, or dealing with staff) as soon as you do get the official UND, but, it does help immensely.

You and I are are "double down dog" lucky we got the VOX!! See (when you get a chance) the details of our trial - there  were only 219 of us in our trial (world-wide)!! And of those 219 only half of us (110 souls) were lucky enough to get the VOX arm!! In Vancouver, I was one of only 5 available trial seats - I will be forever grateful. RC was right, I was under the bright shining light of my lucky polaris star!

I hope the next time you have to see the "new" doc there, he has taken some "don't be an ignorant a-hole" lessons. He really sounded like a party pooper. 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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Sorry, yes, I meant EOT+24.  I haven't been thinking about it at all but tonight I've become slightly nervous, not that I have any reason to be but, you know....

I should have the result by the end of the week so I'll keep you posted.

It's been quite the journey since 1996.  That's nearly half my life. 

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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Pablo,

You mean you're going to your EOT+24??, (not your EOT+12 in a couple weeks ,right?) - you already had EOT+12 (lest I forget)! But, hell, who's counting eh, hee hee. Sheesh you count just like me, with MY fog faux pas, I trust nothing that comes out of my head unless i have a calendar, clock or another human being I can rely on, right in front of me, to prompt me.

Yes, I have no great details yet about the "study", but off the top of my head, I would really quite want to (as it would help me and others, I figure) BUT I don't know yet how much is involved, how many trips, how long - I just don't know if I can afford all these long expensive stay-over trips down there continuing! And I think it was supposed to start in Jan? - not great safe travelling weather over our mountains either. I think it's supposed to be an every 3 month thing?

I'll let you know, when I know more.  Keep me posted on what you find out about this from your end too please bud. 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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Hi Canuck

I have my EOT+12 appointment in about 2 weeks, but so far they haven't mentioned anything.  I'd certainly be interested in an add-on study if it meant I'd get ongoing fibroscans.

You going for it?

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 Pablo,

My dear Vox bro. We are like twins, not identical, but twins all the same, sharing everything, including our thinking, feelings and drugs!! REAL kindred souls, bound by blood - literally! Hee hee.  I am so glad you are my bro, I could not have hoped for a better one!

I do ponder how our other VEL trial pals are making out, Oombant, tkflex36, and webtomass - not only the "with" participants, but the "without" (the VOX-less contingent) too.

Have a question for you ... when you went to your last appointment, did they mention to you or ask you if you wanted to participate in a further"add-on" study/trial (more bloods for the purpose of "following" your genetic parameters, and, to further collect and follow your LFT's and fibroscans - can't rightly recall this moment, but I believe abd. U/S's were to be part of it too)?? They asked me, and said they would contact me about participating it in, in about 3 months from now. I think this "further assessment/data collection" was to be done every 3 months, for a while, not sure how long.

Just wondering, if they ran the same thing past you, or to our other pals who got VEL by trial. 

The only thing I would not look forward to, by participating, would be the long expensive trips, and filling out those gall-darn weirdly posed/poorly phrased, and hard to "accurately" answer questionnaires! Probably will be questionnaires tho, drat! Gilead science rocks, so, anything for the cause I figure.  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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Pablito wrote:

Thanks Cinnamon girl...I note the colour of your cardigan matches your name!


 biggrin

I`m glad you noticed that, Pablo, I do try to co-ordinate my `look` to my online user name!   Not so easy for everyone, I suppose!  Lol



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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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Thanks Cinnamon girl...I note the colour of your cardigan matches your name!



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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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Pablito wrote:

Panic over....they use dummy initials and DoBs to conceal the identity of the trial participants!

That was an anxiety-provoking 24 hours.


 

Ah yes, of course!! It all makes sense now, Pablo, what a relief!!  Wouldn`t it have been helpful if someone had warned you of that beforehand, I`m sure it must be confusing for others on the trial, on clinical trials in general. 

Well... congratulations, you can officially relax and celebrate a successful outcome!!!  Cherish your SVR and your life free from Hep C at last!  w00t.gif



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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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Indeed, yes, it is a bit OTT, but actually I find it reassuring as you never know what PhD student will have access to the data set further down the line, perhaps even someone who knows you.

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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Pablo,

That very thought passed my mind last night! But I said to myself ... naaah!, what a dumb and time consuming twisted safeguard that would be! Of my trial data (whatever printed results I was "allowed" to physically take away home with me, to own) - not one piece of it actually had my name "printed" on it, period!!! (Hmm, was it really mine!?) Some degree of trust was required it seems. Everything they wanted (not to be revealed) was "redacted"/blacked out, or physically "cut off" (with a pair of scissors, or torn off on the sharp side of a table!!). They were loathe to email anything, period. They wanted it to be hand delivered, if they did email or fax any trial results, they did not want to send it to me (to "home" equipment), only to another doc's office (I assume they considered another doc's computer more "secure") - that was my trial operators method. She would "hand write" on my results my name and the date of the testing before handing it over to me!

Now, where were we ... oh ya, back to this Zero Club party, my fellow puddle jumper! OK, ya sure, what the hay, top mine up with a little VOX, why not! Clink, congrats Pablo, it's officially, party-time! 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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Panic over....they use dummy initials and DoBs to conceal the identity of the trial participants!

That was an anxiety-provoking 24 hours.



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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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Thanks Canuck and Syd.

Yes, it seems I will ahem to wait a few days now until I can officially say I'm UND. 

The blood form is a strange one as it reports the correct date, time my sample was taken and appointment (EOT+12), as well as the gender and age being correct.   It's just the pesky DOB and initials.  Either there was another male of the same age with an EOT+12 taken that day or it's an error.

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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Pablo,

What a discovery! That happened recently to my Dad. Same name and birthdate but it came down to his government social security number. It reinforces the importance of reading everything on the page. If you got a verbal of your undetected, then congratulations is in order! Well done, you did it. SVR baby!!!

You and Canuck need to start a new thread in Post Treatment. I don't think there will be many more in the Sov/Vel/Vox trials. It appears we are witness to the next greatest thing since peanut butter!

image.png



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Pablo,

Ya and sometimes even the nicest people with the best intentions are dummies too! BROTH-ER!

Too bad you fav gal likely sent you the wrong papers, I am sure she meant well!, but, until Thurs. then, you are just stuck with having to take her at her telephone verbal "word" that you were EOT+12 Und, until they fax/email you the real (your own!) confirmed (in print/writing) wallpaper.

We all know you got an A+ marked right at the top of the exam paper, but now we just forced to wait to see it show up on the report card.

Glad your ZERO result was right on time, but now we just have to wait, for the award trophy to adorn your abode.

Why is it they always seem to be able to come up with one way or another to rain on a parade! I vote we ignore them, sneak past them with happy zeal and jump up and down with great fun in celebratory vel/vox puddles until we are exhausted and thoroughly drenched in joy!

You stared them down bro, no more whites of their beady little viral eyes. Velparized. Poof! Such magic we have been allowed to have! You've been "in like flin", more than 12 weeks ago, to the ZERO CLUB membership!! 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 Pablo,

congrats and yes, I totally get the length of the journey, the psychological toll, the hope which begins to pop, mouse like,  timidly,  momentarily. Well I'm a long way off from a confident, post treatment swagger but I certainly have a new found, occasional smirk, and a bit of a spring in my ancient step. I hope you get to this milestone soon. 

Have to tell you that my son's girlfriend, who's very shy and cute, confessed that she had some itching "down there" last week. What's this got to do with the end of treatment you say? Hang on, hang on, I'm getting back to you via a tangent..... I said it's probably just thrush but maybe have it checked out by a dr. Off she dutifully trotted only to say upon her return that yes, he thought it was thrush and he had asked her how she got it!!!!! I rest my case. Many doctors are ignorant, sanctimonious idiots who just like a bit of a salacious story. 

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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Pablo!

8 + 12  = 0

Nobody, but nobody will "git" this math 'cept me and you bro. Well, I guess oombant does too! It was a small class, but look at what great students it produced! We all pass, graduate, and all we had to do was some hard work and achieve a great big fat ZERO!!

What lovely numbers you own and what a very good day today is!! A very special day indeed. I am really, really happy you are finally here!

SO well deserved, this reward, after all your hard work. Such a good job you made of it all brother.

I am so lucky to have you to keep me company, to be at my side through this journey my friend. (And, both you and I are so lucky that everyone here kept our company so well).

Nice you got your well-liked gal to give you the good news, helps (sorta) to take some of the sting out of that Dr. A-hole encounter the other day.

I think we should celebrate with a round of sofa/velpa (with or without vox) for everyone!!

I wouldn't give a tuppence about breaching your contract now! What are they going to do about it - pixelate you? hee hee. Post away, they ARE YOUR results! I'm framing my printed VL for mounting on the wall!

Speaking of gangly contracts ... what about those stacks of questionnaires every appointment!! (I too signed on for the deluxe all-inclusive total immersion/disclosure form-filling vacation plan.) Geyawd, the poorly phrased questions are so conflicting, ambivalent. Causes me endless consternation, and internal debate, just as to how to answer them each time, with ANY accurate and useful purpose!! Essay answers would be one solution, but, then i would be at their office for a week at a time, versus just all day! Oh well, I am happy to do it, they were very good to me!

I am so happy you are finally SVR pal. It's a really good daybiggrin 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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That's great news James.  UND is a understatement-  YOUR CURED !!!     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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Got my EOT+12 VL today: UND.

Most pleased, to put it mildly!   

I usually get an email from the trial manager but he's away so I called up and got straight through to one of the nurses I really like and she gave me the result on the phone, but also emailed me the paperwork...which was the first time I have an official piece of paper with UND on it.   I tried to upload it here but it pixilated...probably best not to post it anyway as I'd probably be breaching some paragraph of the contract I signed.

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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Pablo,  "Read" into this one ... I get what you mean about "staff" should know better how to "ask" you something ... like gee, how did you get hep c in the first place!!! OMG.  Too bad, you would think they would get it by now! 

Common and Less Common Symptoms

 



__________________

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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Oh Canuck, you have such a way with words indeed.

On the theme of trauma, it's only really sinking in now.  Because the SVR rates are so high and the side effects so few I underestimated the psychological aspects of treatment...

....going back 20 years ago to the initial shock of getting the diagnosis, the shame associated with it, then battling with hospitals for years to get treatment, followed by the huge disappointment of a failed treatment, a period of giving up, renewed enthusism upon the discovery of the DAAs and then a few more years hustling to get onto a second treatment...

....all rolled up into an anxiety-provoking week's wait to get the EOT+12 result.  But it's not a week is it?  It's been a 20 year journey.  All the time navigating the healthcare system and its imperfections, doctors (many of whom I've outlasted in the various clinics I've been in) and their attitudes (some good, some bad).  So when the energetic new doctor I saw 3 days ago for the appointment asked me how I got HCV - why's that even relevant now, and isn't it the notes anyway? - 2 decades worth of emotions get stirred up.  I kept my composure, had an internal sigh, and gave him the answer he wanted.

Not to mention that in between one must crack on with life with all its ups and downs.  Thank the universe for this forum!

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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It IS a lot to go thru. Suffering, for each of us is relative, isn't it. No matter the cause, the grief that can accompany it can be profound. Life and time seems to have a way to balance this out. I have been thinking a lot lately of the smattering of comments made on this site. Basser expressing feelings of "PTS" (with his unbelievable added LOL) about his lengthy ordeal, I really got that! All of us, at one time, stuck in a place of plight, angst and worry, and glimpsing at how each of us grow ourselves from it. Analogies for things hard to deal with, to explain, to find a place for ...  Syd's "black dogs" padding along with her, occasionally taking off to visit elsewhere. Shadows following us, fighting black days, blue spells, long nights, emerging from  stinking filthy clouds, strife, dealt with by covering it, smothering it with multi-layers of camoflaged work, business. Shifting the fear to anger instead. Substituting with completely new creative addictions. Pavlov and idiot savant time are tried and true things for me! hee hee It is all just so much exhausting work at times!! Sometimes seeing the strength or example of a friend/stranger, or just a brief respite, smelling the rose, a forest walk, helps us. It takes practice to get out of an uncomfortable place. We all deal with life on our own terms, I consider myself a child of life, so my vacillating learning style is totally forgivable. I tried to use poetry and walks to help myself, when I scared myself:

Where's the bad poetry section?

RE: Where's the bad poetry section?

smile



-- Edited by Canuck on Wednesday 7th of September 2016 07:22:24 PM

__________________

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 Wendyo and Canuck

You are, of course, right.  I woke up feeling fine and dandy.

It's quite a lot to go through, treatment, trials, waiting for tests etc on the back of 20 years HCV.

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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Yes big congrats to Oombat.

Pablo I had the same worries, anytime I was tired or felt anything I would immediately go to did IT return. I have to remember I also have a disease that centers in my mind and try not to project. (easier said than done) 



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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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Pablo, 

Nice oombant posted eh? Good to know we have another VOX brother or sister out there as the case may be. Hope we get more news from oombant, and webtomass and VOX-less tkflex36 too!

Yup, I can assure you, if you weren't sure already, that you are just human - we all do it - interpret/mis-interpret, it is SO easy to do. Even braveheart Loopylisa does it! RC (and just about everybody else in the whole wide hepc world) can tell us, over and over again (and I will never get tired of hearing it), we have bombed the shat out of it with VEL.

But, it's always nice to have it "in writing", isn't it! A comfort when you have been burned once before. 

It's a done deal bro! Is gonna be a very happy 12. 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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Congrats Oombant as well.    That trial you guys all got on is the BOMB   It's looking like everyone on that trial all got to SVR, and it doesn't get any better than that. I'm really happy for all of you .     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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Congrats Oombant!  I hope you are feeling better daily. Great news.



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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Welcome Oombant

Reassuring to hear your results.  I had my EOT+12 bloods yesterday and must profess to feeling a bit anxious.  I've been feeling very positive but in the last few days a few doubts have crept in and I've started to interpret headaches and minor physical ailments as a sign of relapse.  But I suppose this is only human; I'll be fine.

Anyway, congrats again.

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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Hi Oombant,

Welcome!

Real happy to hear of your EOT+12 result from sof/vel/vox.

Me too, SVR12 on this regime -  via Canadian trial. I am a "former'" GT 3a!

What country did you receive your trial?

You may have noted Pablito, in the U.K., was on the same triple trial as mine.

tkflex36 - 12 weeks of sof/vel (Epclusa) trial in U.S. Webtocomass's trial - Canada. And 2 others, in U.S., recently started Epclusa are posting on this site.

Glad you posted, welcome to the club! Please tell us more! 

BTW - you are no longer a newbie! biggrin C.

 

 



-- Edited by Canuck on Tuesday 23rd of August 2016 02:33:56 AM



-- Edited by Canuck on Tuesday 23rd of August 2016 02:37:51 AM

__________________

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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Started Clinical Trial Study for SOF/VEL GS-9857 in February 2016. Just received 12 week eot labs and am UNDETECTED, SVR12.



-- Edited by Oombant on Tuesday 23rd of August 2016 12:20:28 AM

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Tig


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Hi C,

Thanks for your reply. I reformatted a few things and it's still off the map on my mobile devices. I use a tablet most of the time, so I see the problem more often than people that use a laptop or desktop. I'm on my desktop right now and as you said, it's fine. So it's limited to mobile devices when it happens. When threads get this long, anything along the way can do it sometimes.

Congrats again on all your good news! WOOT! 



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



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Nope, not me TYG. I don't see/notice nuttin' dif.  confuse 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)

Tig


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Hey Everyone,

Is anyone else having trouble viewing this page? It's too large and the page jumps all the time making scrollong difficult. I might need to edit some information into a different format. 

Thanks!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Hey, tanks everybody. Yup, safe to say Pablo and I had super outcomes being lucky recipients of our 8 week triple trials (sof/vel/vox)! As did webtomass on his 12 week trial, and tkflex36 on his "double only" sof/vel (Epclusa) alone trial. Pleased to see our first (by regular/approved/on-the-market scripts) Candace's hubby and Ivery about to get their 12 week cures via this wonderful new Epclusa. Epclusa as a triple (or double) has long been my wish for RC too.

Thnaks K8, I really wish you could have had the Epclusa as well, but YOU DID SO WELL!, even tho you had to persist with the riba. I'm still reserving judgement about anything likes "sides" that I can or will attribute the VOX portion of my triple sof/vel trial. But I am leaning to something about that VOX! Others did not sense any sides, and or very few on their trials! We had an easy ride compared to yours I am afraid. I hold much respect for those who have endured getting good cures, but had to utilize riba and or lengthy durations. I will NEVER be able to acknowledge what it was like for those during the interferon times! Tougher, braver than I will ever know. On Thurs. for your EOT+4, will you have a VL drawn? Keep us posted so we can celebrate! 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)

K8


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Great news, Canuck.  so happy to hear this.

Did you have any side effects from the VEL/GS?  I have a friend who is just diagnosed with Hep C.  I assured him the new meds are much better but I cannot be cheery about my recent tx with SOL/RIB

Thanks for the update.  I see my doc on Thurs for one month EOT - so your positive note gives me encouragement and gratitude that you are SVR.

 



__________________

K8

65 yr female.Gt 2 B.  Contracted Hep C approx 71, 

tested 2007 - vl 10mil   RIBA/PEGI in 2007 6 months,  undetected EOT,  VL 600,00 in 2008

tested in Feb,2016 VL less than 2 mil, SOT 4/25/16  SOL/RIBA for 3 months , EOT July 17th, 2016

AUG 12th blood work - undetectable 

 



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Hey Canuck, huge congratulations on your 12 wk post EOT result, SVR it is!!  biggrin   I missed your post too, just catching up with this!

Many thanks for sharing your trial journey with us, and also for the abundance of great information you bring to this forum! 



__________________

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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Canuck said:

Huh, tried to post late this afternoon and I couldn't log in! Bummer, and weird, I tried everything to see what the problem was, and tried stuff to sort it, but ultimately I just had to leave it alone, until tonight, and now, I can log in just fine. Strange.

I was wanting to announce this afternoon, that I FINALLY succeeding in wrestling my EOT+12 week VL result out of them today (drawn Jul 28). It was like pulling teeth to get the results sent to me. Argh.

I am a big fat ZERO again! Love Gilead, a lot!

 

***********************

Wow, I actually missed this and five days ago was before me I think. I am thrilled for you, for us and for everybody that has been on this journey with us and those who came before and mostly for those yet to come. This is great and my draw was the 26th so you actually got news before I did. We LOVE waiting don't we? grrr.

Congrats my fellow Canuck! Now as Jimmy said, What's next?

 

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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Hey Candace,

I really have to update my bi-line one of these days! You got it figured! - the 8 week trial thing versus 12 week script. How are are you and he doing now? You and he have been, and are, going through a lot of stuff!

Any more skin things, or is all quieted on that front? Time warp seems to be a side - altho parts seem excruciatingly long, before ya know it, you're at the finish line, puffing, thinking HEY!, what the heck just happened here!! 

Tig had my short trial well described when he said it would be like a 8 second rodeo ride, and all I had to do was hang on to the horn, and not get bucked off!. Yee-haw. 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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RAGDOLL wrote:

Canuck,   Sorry I missed this with all that is going on.  A BIG CONGRATS for your success.  I forgot RC had mentioned this to me.   So glad you got the new triple with Giead trial.  Hoping and praying RC can get these drugs to stop some of the damage.  Praying for a miracle now. Many blessings sent your way .  Chris


 Hi Ragdoll,

I hope so too! Long enough! Last I heard it was on the radar - them talking about starting the HCV drugs - please let us know when you know. My thoughts are with both of you. C.



-- Edited by Canuck on Sunday 14th of August 2016 03:00:47 PM

__________________

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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Canuck,   Sorry I missed this with all that is going on.  A BIG CONGRATS for your success.  I forgot RC had mentioned this to me.   So glad you got the new triple with Giead trial.  Hoping and praying RC can get these drugs to stop some of the damage.  Praying for a miracle now. Many blessings sent your way .  Chris



__________________

F 63,  1b  1974, no cirrhosis, fibro scan 5.8 F0-F1,fibro test .37 ,V/L 702987, ALT 90, AST 75.  ABBVIE Topaz II on 10-30-14 Viekira Pak no RIBA , EOT 1-22-15 SVR, ALT 37, AST 29, 4-15-15 SVR12 - fibro test .22,  1-21-16 SVR 52 ,  1-21-17 SVR 104! 1-21-18 SVR 3 years ,2020 5 years, 2022 7 years!



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JimmyK, thank you for your kind words and explanation.  I wish you well :)
JimmyK wrote:
CandaceV wrote:
Ah I see...I missed the Trial part.  If it clears it within 8 weeks, are there 4 more weeks of treatment or is it done?  Just trying to understand the difference.  Please excuse my ignorance.  I know that they know what they're doing, just a little confused here. 
JimmyK wrote:
CandaceV wrote:

My husband just started Epclusa, but for 12 weeks. Why only 8 weeks, if you don't mind me asking? My husband's gastro said Epclusa is the magic bullet, and very very mild headaches and a little tiredness for a week or so. My husband started it last week, the headache and tiredness is already gone. Very very happy for you!


 Candace one is a trial and the other is a script. It is the magic Bullet and you are witnessing a clearing and SVR 12 with 8 weeks of treatment.

12 weeks is simply a bigger bullet so your husband is on an extremely good protocol.

 

JimmyK


 


 Ignorance of this is nothing that needs to be excused. You already know more than the vast majority of folks out there. Also you desire to seek knowledge is commendable so no worries. One day you are likly to be in a position to help others seeking information.

That is just kind of how we roll here.  ;)

The 12 weeks your husband is on is most likely going to show via an HCV RNA at 4 weeks after beginning treatment that he is UND. He will then go on to complete the 12 week course allowing the additional 8 weeks to go on a seek and destroy mission to ensure all is right. Think of it like a horrible Forest Fire that is brought under control in 4 weeks and then the fire fighters going in and searching for and if found extinguishing hot spots.

A trial is a fixed regiment that they study to gain more knowledge from in order to understand effectiveness, saftey and other data needed to properly launch the drug for public use.

Your husband is on a program that is the results of those trials now fine tuned to ensure the best results.

In both cases the full regiment is necessary be it 8 weeks or 12.

 

You have some incredible days ahead of you for you and your husband and I am most certain they will be framed in success and happiness.

Keep learning. The World needs you to assist in this ongoing battle, and yes, one day it will be YOU calming the fears of others.

Warm Regards to you and yours.

 

JimmyK


 



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CandaceV wrote:
Ah I see...I missed the Trial part.  If it clears it within 8 weeks, are there 4 more weeks of treatment or is it done?  Just trying to understand the difference.  Please excuse my ignorance.  I know that they know what they're doing, just a little confused here. 
JimmyK wrote:
CandaceV wrote:

My husband just started Epclusa, but for 12 weeks. Why only 8 weeks, if you don't mind me asking? My husband's gastro said Epclusa is the magic bullet, and very very mild headaches and a little tiredness for a week or so. My husband started it last week, the headache and tiredness is already gone. Very very happy for you!


 Candace one is a trial and the other is a script. It is the magic Bullet and you are witnessing a clearing and SVR 12 with 8 weeks of treatment.

12 weeks is simply a bigger bullet so your husband is on an extremely good protocol.

 

JimmyK


 


 Ignorance of this is nothing that needs to be excused. You already know more than the vast majority of folks out there. Also you desire to seek knowledge is commendable so no worries. One day you are likly to be in a position to help others seeking information.

That is just kind of how we roll here.  ;)

The 12 weeks your husband is on is most likely going to show via an HCV RNA at 4 weeks after beginning treatment that he is UND. He will then go on to complete the 12 week course allowing the additional 8 weeks to go on a seek and destroy mission to ensure all is right. Think of it like a horrible Forest Fire that is brought under control in 4 weeks and then the fire fighters going in and searching for and if found extinguishing hot spots.

A trial is a fixed regiment that they study to gain more knowledge from in order to understand effectiveness, saftey and other data needed to properly launch the drug for public use.

Your husband is on a program that is the results of those trials now fine tuned to ensure the best results.

In both cases the full regiment is necessary be it 8 weeks or 12.

 

You have some incredible days ahead of you for you and your husband and I am most certain they will be framed in success and happiness.

Keep learning. The World needs you to assist in this ongoing battle, and yes, one day it will be YOU calming the fears of others.

Warm Regards to you and yours.

 

JimmyK



__________________

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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I was on the very same trial, 8 weeks too.  The 12 week data for Ecplupsa and SVR are extremely good.



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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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Ah I see...I missed the Trial part.  If it clears it within 8 weeks, are there 4 more weeks of treatment or is it done?  Just trying to understand the difference.  Please excuse my ignorance.  I know that they know what they're doing, just a little confused here. 
JimmyK wrote:
CandaceV wrote:

My husband just started Epclusa, but for 12 weeks. Why only 8 weeks, if you don't mind me asking? My husband's gastro said Epclusa is the magic bullet, and very very mild headaches and a little tiredness for a week or so. My husband started it last week, the headache and tiredness is already gone. Very very happy for you!


 Candace one is a trial and the other is a script. It is the magic Bullet and you are witnessing a clearing and SVR 12 with 8 weeks of treatment.

12 weeks is simply a bigger bullet so your husband is on an extremely good protocol.

 

JimmyK


 



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CandaceV wrote:

My husband just started Epclusa, but for 12 weeks. Why only 8 weeks, if you don't mind me asking? My husband's gastro said Epclusa is the magic bullet, and very very mild headaches and a little tiredness for a week or so. My husband started it last week, the headache and tiredness is already gone. Very very happy for you!


 Candace one is a trial and the other is a script. It is the magic Bullet and you are witnessing a clearing and SVR 12 with 8 weeks of treatment.

12 weeks is simply a bigger bullet so your husband is on an extremely good protocol.

 

JimmyK



__________________

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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My husband just started Epclusa, but for 12 weeks. Why only 8 weeks, if you don't mind me asking? My husband's gastro said Epclusa is the magic bullet, and very very mild headaches and a little tiredness for a week or so. My husband started it last week, the headache and tiredness is already gone. Very very happy for you!



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

And it seems like just yesterday......

Congrats Sis, you made my day.

 

JimmyK



__________________

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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Congrats! Congrats! Congrats! You did it Canuck. Welcome to the "zero" club. 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

Mike

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"Hee hee, wheeee - KILLED IT! biggrin C."

 

Nice Gowin Canuck!

 

Music to my ears!!

How wonderful, very pleased to hear the most excellent news!

 

Happy HCV-Free Livin'!

Dave



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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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