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Hep C Discussion Forum -> Clinical Trial Participants -> "I'M IN!! - The 8 week SOF/VEL/GS-9857 Trial"
Post Info TOPIC: "I'M IN!! - The 8 week SOF/VEL/GS-9857 Trial"
JimmyK


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RE: "I'M IN!! - Started the 8 week SOF/VEL/GS-9857 Trial"
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Pssssssssst,  wanna buy a watch?

 

no



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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."
Cinnamon Girl


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Hi folks, sorry about the time zone confusion!  What Tig said is right. This forum was originally set up by a group of people from the UK which is why we have a London (GMT) default setting.  When I first joined we had quite a few more active UK members than we do now, but we`ve always been an international forum. 

At my age I often get confused about what day it is, never mind what time, and I can`t even blame the riba!!  confuse

 



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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.

 

 
Tig


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I believe all editing and such, default to the GMT time zone. The forum was started in the UK and is still being handled that way. We are a global forum and I think it helps to keep the time stamp consistent. Especially when support issues arise. That's my story and I'm sticking to it!!! Ha, ha! biggrin



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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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Shadowfax


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Yes it did post correctly and I never see the error here on the avatar until it's the next day in the UK. It's odd.

 

Ah, here is a perfect example, I just did an edit of another post and although the post time stamp is fine, the edit was in GMT .. I am thinking this one will be as well  * -- Edited by Shadowfax on Saturday 26th of March 2016 02:10:48 PM

 

 



-- Edited by Shadowfax on Saturday 26th of March 2016 02:10:48 PM



-- Edited by Shadowfax on Saturday 26th of March 2016 02:11:21 PM

__________________

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 *
Tig


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I see that it posted as 9:18am in your avatar section. Is that what you're referring to? If you're looking at the List All Users section (who's online) it will list it in GMT.



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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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Shadowfax


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Canuck,

I won't tell you that my income tax was done March 15 smile .... Nope not mentioning that. I like to get it over with A.S.A.P.

 



__________________

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 *
Shadowfax


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Tig56 wrote:

Yep, we are currently on Greenwich Mean Time, or living on London time! If you haven't adjusted your profile settings to your desired time zone, it will indicate the forum default. You can go to your profile settings and all the way at the bottom you will see the selection.

 Hi Tig,

Yes I have my settings set to EST. It has made no difference that I have seen and will still take my posts to GMT but oddly enough, it seems only when the day changes. I will see what it posts now as it is 9:18 EST, same as in FL. Not the worst thing in the world and who said time travel was impossible.

SF

* The time is fine atm.



-- Edited by Shadowfax on Saturday 26th of March 2016 01:18:33 PM

__________________

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 *
Canuck


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SF, 

We understood what you meant Canuck (Really!!?? All of it??) so today, Friday March 26th would be day 16 :) Thankyou for reminding me, that it IS and WILL BE FRIDAY, for most of today, I needed that!

Actually I think the forum is on a UK time zone because if I were to post this in a few hours, it would already say Saturday even though I have it set to EST ** Shrugs   Don't confuse me now, I was on a roll!

You are moving right along with the rest of us and you seem to be your happy go lucky self.  Happy!!?? - my biggest trepidation at the moment is the pressing, looming, dreaded income tax (that i should have started on about a month ago!), to which I have just about run out of every excuse for procrastination in starting!   I suppose we have to call off the baby shower ...  Jeesh ... I knew I shouldn't have posted that one result - if I post you about a POS result, later, could you just mail me your gift then?? It is true that we are limited to 250 characters and due to that I removed the URL to the Harvoni Train. Oh thanks, huh, more confusion.  Please do keep us updated and I have to ask this. Are they monitoring HBV at all? It's probably a non-issue but I thought I would ask. NO! And I wish they would! Doesn't seem to be a parameter they wish to explore - I don't get that (dormant/occult and all that. But, I will keep asking/hinting about it. I want EVERYTHING! - I have HBV PCR envy.  My partner says - "Whaddaya want ... the world"!!?? - I say, (small voice) "yes please, I'll have one of everything please, thankyou".  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)
Tig


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Yep, we are currently on Greenwich Mean Time, or living on London time! If you haven't adjusted your profile settings to your desired time zone, it will indicate the forum default. You can go to your profile settings and all the way at the bottom you will see the selection.



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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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Shadowfax


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smile

We understood what you meant Canuck so today, Friday March 26th would be day 16 :)

Actually I think the forum is on a UK time zone because if I were to post this in a few hours, it would already say Saturday even though I have it set to EST ** Shrugs

You are moving right along with the rest of us and you seem to be your happy go lucky self. I suppose we have to call off the baby shower ...  It is true that we are limited to 250 characters and due to that I removed the URL to the Harvoni Train.  Please do keep us updated and I have to ask this. Are they monitoring HBV at all? It's probably a non-issue but I thought I would ask.

Have a wonderful weekend

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 *
Canuck


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Ahem ... sheesh it's dark in here, foggy or sumpin.

And hey, guys, a girl wouldn't mind a wee bit of direction (once in a blue moon), if her driving WAS a little off kilter eh - just say so!

My last post below? The one where I say with certainty that I am writing this on Weds. March 24 (canuck time)?, well most of what i said was true, except for one minor detail, I was ACTUALLY writing that on THURS., so we'll revise that for anyone who is confused (me), to say THURS. (all day) March 24 (you know ... like as in Thurs., your time)! Sigh. 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)
JimmyK


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Thanks for the update Sis!

Tally Ho!



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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."
Linuxter


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Hiya Canuck,

Happy day to ya ... your Tx is movin' right along ... soon you'll be a quarter done then soon after a third ... it goes fast ...

"I do wish they had a pre and post-trial brainfog/I.Q testing thing though. smile C."

I'm not so sure I want that test ... if I took it right now I'd surely forget where my pencil is ... they say ignorance is bliss, well brainfog is (bliss?, not so much).

 

Foggie Doggie,

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

 
Canuck


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Hi everybody,

It's Weds. March 24, 3PM (canuck time)- DAY 15 - of my 8 week SOF/VEL/GS-9857 treatment.

Just killing time.

Tried to update my original signature line - but apparently that line is reserved for and limited in capacity for the non-verbose! Thus why I'll update, as I go along. My lab info results will always be lagging as I will always receive them late.

Signature Line update : March 10, 2016 - accepted for and started DAY ONE of 8 week SOF/VEL/GS-9857 trial. March 10 labs taken just before starting treatment - VL 844,000, AST 64, ALT 86 (my VL in last 6 months, before treatment, decreased from being over 10 millions to under 1 million!)

Other pre-treatment labs: IL28B - CC. Ferritin 541 (ref. 15-300), Iron 37 (ref.9-32), Iron Sat. Index .71 (ref.15-.45).  PT 13.6 (ref. 9.7-12.3 sec), INR 1.3 (ref.0.8-1.2). C&G Crt&clr 58.6 (ref.75-115.0). Glucose 107 (70-100). Urine ph 5.0.  

AND, to whomever may have thought it within the realm of possibility ... it will be a relief to know that I am NOT pregnant (hee hee), AND, that I tested NEG for opiates, amphetamines,cocaine and MDF (whatever that is!).

I do wish they had a pre and post-trial brainfog/I.Q testing thing though. 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)
robertsamx


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How's the Canadian club doing? I just stopped by looking for an up-date on ya!  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   
Canuck


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RE: "I'M IN!! - Started the 8 week SOF/VEL/GS-9857 Trial"
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Oh syd!,  you have such a good way with words and explaining things. Love it, LOL, very loudly, rolling around, tears in eyes kind ... re: your reply - you got it in a nutshell. And just whaaaat pink bits do you refer too?? You might have to explain that for the boys, as they are likely thinking about rosy cheeks, or perhaps the inside of craniums, etc. Ah youth and age it IS all mind over matter, no? God yer funny girl. I just love it. Come to think of it, hey there are waaaay too many "funnies" on this website - WTHay - something must be wrong with us! I am thoroughly enjoying the so many fun, funny, hilarious, kind, soothing and distracting things us people are coming up with. You and so many are soooo good at it. Loved the riba rage redlight district, and the burrs on the butt looking fer a fence post depictions. The sequins rash is another visual I will treasure, as is the neighbourhood orgy party sharing drugs over the sink. You're a riot. Is there humour tutorial section, that I have been missing in the website, that you and Jimmyk and everyone must be going to gain your inspiration? C. biggrin



__________________

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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I'm dying over here, lol! "Pink Bits, orgies and sequined senior pole dancers"? I busted out laughing when I read that Syd. You cracked me up with that! Sounds like a flashback reference to the 60's and 70's! I'll have silly visions of this for a week, thanks!! biggrin



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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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Sydhanrahan


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Hi Canuck,

glad you are feeling so positive and hoping the headaches are only temporary. 

I would regard being warned to take two forms of birth control in a very positive light. You must look as though you have pink bits that MIGHT still work!! What a compliment!! Nobody, but nobody, has warned me about birth control. It'd be the same usefulness to have somebody going into old folks homes to warn residents about the dangers of pole dancing ie. falling off poles and being grazed by the sequins in their skimpy outfits. 

No lunch or healthy wrap and watch you take your meds for us Down Under either.

what do they think you are going to do when you get home? throw a large orgy for your neighbours which involves everybody having unprotected sex whilst taking turns to juggle at least 10 of your tabs over a sink full of running water? 

Canada sounds beautiful. One of my sons worked there for 6 months a decade ago. I should have visited him, although if the girl friend he brought back was any indication of what he did there and who he did it with, I think it would have been a stay with quite a few awkward moments! 

Take care,

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.
Tig


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"I'M IN!! - The 8 week SOF/VEL/GS-9857 Trial"
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Sounds like a very productive and refreshing trip. Also a "somewhat" informative day with the doctor too. I like the while catered lunch thing! What a great service that is. Sometimes those fasting tests take til lunch to complete and you end up starved! 

I'm glad that the first week is done. Hopefully the next 7 will go by without much fanfare. We all wish you the absolute best! Don't forget, HYDRATE AND USE TWO FORMS OF BIRTH CONTROL. We have compliance drones to make sure you're following doctor's orders..... biggrin

Let us know how you're doing. We're looking forward to some great test results! Good luck!



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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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Linuxter


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"I'M IN!! - Started the 8 week SOF/VEL/GS-9857 Trial"
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Hiya Canuck,

Thanks for the report on your trip, sounds like your doc takes life quite seriously ... probably a good thing for a doc.

I like that they bring ya lunch, that's a nice feature but with the watching you take your pill it's like they apparently condense your whole treatment down to just the few hours that you spend with them, oblivious to what you do once you leave ... amusing.

Glad things are going smoothly, the headaches don't sound much fun, I know, I had to fight one off myself today. Mine was probably self induced, I was on the road taking Jo to the doc, then we went to Wal Mart to spend $300 then we went and got tires put on the car, that took another 3 hours ... car runs smooth as a baby's behind now though ... got home and I had to throw the charger on my truck battery since I left my lights on yesterday and it was dead as a doornail when we went to leave to go to the doctor ... needless to say it was a long day and I did drink some water but not nearly my norm so I had a whopper of a headache by the time I was done ...

... we're back home too now ... it's always nice to be home,

Oh, congrats on moving into week 2  smile

 

Dave

 



-- Edited by Linuxter on Saturday 19th of March 2016 01:28:45 AM

__________________

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

 
Canuck


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Hi everybody,

Signature Line update : March 10, 2016 - accepted for and started DAY ONE of 8 week SOF/VEL/GS-9857 trial. March 10 labs taken just before starting treatment - VL 844,000, AST 64, ALT 86 (my VL in last 6 months, before treatment, decreased from being over 10 millions to under 1 million!)

Day 8 of my treatment!

I write this on Friday, March 18 at 4 PMish (canuck time).

We're back from our overnight trip to the big city for my March 17 WEEK ONE blood draw appointment. It was such a good day (for the trip down there, Weds. March 16, and coming back, Thurs. March 17). So happy to be on treatment! Weather was peeerr-fect for both parts of our trek. Beautiful spring weather driving at sea level, gorgeous clear blue skies and sun showing off large amount of pristine snow all along the pass mountain tops. Trees in various states of pretty blossom in the streets of Vancouver, and the skiing is still great I hear. If I managed to get any good pics of the snow driving thru the mountain pass, and if can figure out how to post it, I will. Must be a velpa side effect this happy spring euphoria! heehee

My lab work results will always be lagging (by the time they give it to me) but I will post results as soon as I receive them. I am also trying to update my signature line, and when I figure out how to do it, I'll keep updating that too as I go along my 8 week treatment. My WEEK TWO draw should have been sheduled for March 24, but, due to the doc unavoidably being away, it is postponed for 5 extra days! - means I won't get my WEEK TWO appointment (nor my WEEK ONE VL results) until March 29!!

My looong list of burning questions for the doc always seem to get edited down to only a few things, due to time constraints I guess. I do come away with some answers. Some parts of the appointments are funny. Like the poor gal who is obligated with the gravely important job of repeatedly ensuring I know about using at least 2 forms of birth control (or more) whilst on treatment because "the effect of these drugs on a pregnancy is not known" ... must be hard for her to perform this drill when she knows I have been post-menopausal for like ... what? the last 10 years maybe!, additionally, that I have been on HRT, for how long now?, that I cannot remember what libido is, and we won't even get into the grey hair or pension handicap thing that might impede any likelihood of eminent risk of child rearing - oh well, "an abundance of caution" just in the case of immaculate conception I guess. She doesn't really expect an answer from me, but she just keeps bringing the subject up! I have prepared an answer for her next time though, that I practice "waaay more" than just 2 mere methods, that I observe "a multitude" of very reliable, effective, back-up contraception methods.

Nervous-like, I ask the doc ... er, um, mmm, maaaybe if we don't see like a quick and ROBUST response to the drugs, sluggish like, then, uh .... maaaybe you would just consider rolling me straight into the 12 week Polaris 4 trial??? (meaning, just adding another 4 weeks of treatment to my 8). "No." was his answer (man of few words).

Then, on to my next burning question ... in my horribly expressed way (I do not do well when winging things verbally), we finally got my concern identified and expressed about my history of HBV (torture for them, I am sure!). My concern was not the immunization per say, which will be due to be completed in April with the last inoculation being a double dose of B again, to keep me well over "minimum 10" immunity titre level (the "abundance of caution thing again"). This doc came late into finishing up the already started double dosing immunization game plan (as i started with a dif. doc) - he did not disagree with the double dosing regime for B. The part that I wanted him to talk about was the risk of resurgent dormant/occult HBV - round and round I've gone with this, only to arrive right back where I started and what I thought in the first place! - that my risk of B resurgence is remote, miniscule. Figuring out HBV in general, on my own, was an arduous meaty task, just in order to double check that what I was thinking was indeed correct, but, as a bonus it did lead me to very interesting studies like on occult HBV, and studies about folks who first contract both B and C at the same time!

Doc did try to re-assure me tho, expounding a bit on his succinct "No." regarding my query on Polaris 4, because (1) he has plan B drugs in mind in case of failure, (2) he intimates there will be no need for a plan B for failure as he does not expect failure, and (3) he echo's me, in that the B resurgence risk should be relegated to the back burner.

In these very busy, labour intensive appointments where time is at a premium, we do, for occasional milliseconds, show each other our teeth. We stop and grin at one another at apropos moments, indicating our non-verbalized mutual genuine pleasure and satisfaction that I am getting the drugs. He seemed pleased that I am only too happy and willing to experience the whimpiest of the sides, and, seems mildly entertained by my non-standard selections of descriptive medical terminology for his edification, i.e "roiling/burgling" stomach. Next week I will describe for him that I call the drugs he is giving me "mild headache pills", as that is what often happens when I take them.

I still can't get over it, that they actually buy and bring me lunch as soon as my labs are done! Thinking it doesn't look too good to be ordering and eating certain fast foods - and in discussing the menu, this really nice nurse actually brought me a "healthy wrap" - unreal! It was gigantic, and good too. Guilty pleasures.

On WEEK ONE "lab" day, you are not allowed to take your meds that day UNTIL AFTER your blood is drawn, and of course it goes with out saying for the GS-9857 arm, not until AFTER you have finished your lunch meal as well, AND (funny) that when you DO take your "right after lunch/on a full stomach" pill, THAT ACT of taking "said pill" HAS to be witnessed by them before you leave. Huh?, OK, no-never-mind to me, happy camper, no biggy at all, but when you think about it, who verifies that I've actually been taking my pills at home all week?

Ah, my troubles are as short as a rabbits tail, and my joys as long as his ears! C.smile



__________________

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)
Canuck


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Hi everybody,

Hey, thanks. Yes, I've been excited (not always in the best way) since July 2015! But NOW, I am excited in the very BEST way. Much relief came when I got accepted, and started - NOW I am actually starting to allow myself the thrilling thoughts of being JUST LIKE TK and crashing my virons so blazenly! And you are always right Jimmy, I AM on my way to a different life (I tremble in anticipation a bit)! Nice thoughts. My infection will also soon be just a pin-prick moment of time in my life. Ya syd, my partner is a crucial support in all this, he is great (as are all of you), I have to be careful tho, can't tell him too much how great he is as it often just goes straight to his head, he hates it when I tell people that he actually does dishes too!! I am feeling pretty great, no real changes in feeling better, (per say energy wise, etc.) but nor have any big sides shown themselves, stomach roiling, some tolerable headaches, really minor on the scale of things (the GS-9857 I am guessing). Well, I'm packing my bag again, off to the coast tomorrow for my appointment on Thurs. Huge smile on my face. C.biggrin



__________________

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)
Cinnamon Girl


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Hi Canuck, I`m really pleased you`ve got into this trial, these are excellent drugs and we`ll all be cheering you on to the finish line!

The fluctuation viral load really isn`t anything to be concerned about, and RC and Tig have given you very good explanations of why and how it happens. You summed it up exactly when you said " A VL IS just one pin-prick point in time", yes!!

Best of luck, keep posting your updates! 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.

 

 
JimmyK


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Hey Lil Sis don't listen to those guys. You had it right the first time. I did it.

LOL no I just love being an idiot sometimes! LOL!!

We are all pulling for you sis. You are going to do great and are on your way to an entirely new life!

Jimmy



__________________

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."
tkflex36


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C,

I'm so glad you finally got your ticket punched! The 8 weeks will be a breeze, plus just think if you were anything like me your vl is just about nothing right now after 5 days of meds, ain't that a relief!! VELPA WARRIORS UNITE!



__________________

36 yo M, first dia in 2002, geno 3A, TX naive, starting trial of sof/vel 12 weeks on 1/6/2016

VL on 12/21/15- 507,000

12 week EOT 3/30/16, VL-UNDETECTED ALT-23, AST-24

24 wk post tx  10/16 VL-UNDETECTED! ALT-16, AST-18

SVR24+all LFTs normal=1 DEAD Dragon!

 

Don't stop fighting til the dragon is DEAD!
Sydhanrahan


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Hi Canuck,

so glad you posted. I have been wondering how those first days had been. It must be a huge relief not to be imagining the ongoing damage that the virus was doing to your system every day after you found out how urgently you needed treatment until when you actually took the first tablet.

i hope the treatment slides by with few side effects. I can't say there are any with Sofosbuvir or daklinza. It was the riba that replicated each of my unique neuroses and magnified them 100 times over. Now when I read others' stories and it says 24, 36 or 48 weeks of riba, and for some plus, interferon, I know they are the true pioneers of this journey we are on.

I have more energy, and motivation, than before I began treatment. Not a huge amount, but some. I should have known I was really sick when I couldn't get excited about a new project. This week I have finished one. A Minnie Mouse dress for my three year old granddaughter's birthday.

i would love to post a photo but know her parents never put her image online.

your partner sounds supportive and funny. I hope he is bringing hot soups, clean towels and good jokes when he is off chauffeuring duties.

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.
Canuck


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Yes, now that Tig and Robertamx "say it out loud"!!, I can be more objective. Early on, I tried to do much researching about high loaders and found the same info as you (that you very kindly) redirect me to and remind me of. Load fluctuations, speed of replication, but found little hard and firm data on actual people history's of "speeds" on such - I first started out asking someone who had posted, about their load tripling after failure - so, it's good to know how fast your load(s) rebounded (twice!). Helps me review, repeat, and firm up info - my load drop is not such a mystery - hard to shake the high load worry, so, regardless of what constitutes a "hi" load nowadays, (over 6 million, over 800,000, or over 600,000, depending on how old school you are in your evolution of thinking) - I am just pleased my load was already lower at the start of a short course. I am still a little stuck in the "longer is better, more (drugs) is better, and less load is better" school of thinking even if I am wrong. A VL IS just one pin-prick point in time, a slo-mo moment in the life of a whirl-wind vortex of virus that operates in blinding speed.

Ya, the 20% (if it really is that much, give or take I guess), both SF and I lamented that we had not been of the lucky and the few who did spontaneously resolve their C. Wouldn't that have been nice. Thnaks for the good objective info. C.smile



__________________

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 Canuck,

I'll echo the previous comments, the viral load can fluctuate quite rapidly. Your immune system often determines those ups and downs. When your health and immune system are strong, they attack the viral load and are able to wage a little war of it's own. That's how some are able to spontaneously clear during the acute phase of the infection. That amounts to about 20% of those infected. Not great odds, but a wonderful thing for those fortunate few. Another thing, total viral load doesn't impact your chances for success. Some protocols allow for shorter courses of treatment if the total viral load is less than 6 million (Harvoni).

Glad to hear that you're on the tracks and rolling! We tell everyone, stay rested, hydrated and nourished and you'll experience fewer sfx. Best of luck on another pioneering effort by one of our own Warriors! Thank you for setting the pace for others to follow!



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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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Shadowfax


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We had the seat saved for you for quite awhile now.

Congrats and welcome aboard.

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 *
RAGDOLL


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OPPS I thought RC had logged me on.. Chris



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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!
robertsamx


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Hi Canuck, No worries, I have had hep C for 40 years and my viral load has been as high as 9 million and as low as 600,000. It's not unusual. It's like the stock market. Glad you are getting your treatment . Best drugs today for you!!



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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   
Linuxter


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

Don't know nuthin' 'bout the drop in VL but I would guess that the latest Trial test was an accurate one.

That's great news, all the less dragon offspring to have to eliminate ... hit 'em while they're down, kick some butt and don't back off till they're all dead and gone ... kill, Kill, KILL ... LoL smile

Nice to hear my Northern friend ... very nice, indeed!

 

Dave



__________________

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

 
robertsamx


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Hi C.      I would also have a tall stack of nickels for the same reasoning!  It's funny how we all would just like to experiance what normall is. Like you I've had hcv 33 years, and question what would I have felt like had I not contracted hcv?

As for the V/L numbers in question, I have seen on this forum the same wide swings in numbers. Every day  the HCV virus multiplies  by the hundreds of millions to a billion!! How fast our immune system can kill them off each day shows up in our viral load. Looks lke the day you had your second V/L test your immune system was working well and in overtime. When I relapsed the first time my load went from UND to 18million in 4 weeks. On my second relapse I went from UND to just 9,990 in just 4 weeks. 

Congrats again on getting into the Polaris trial.             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   
Canuck


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"I'M IN!! - The 8 week SOF/VEL/GS-9857 Trial"
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Well, about time I changed myself over from writing in "Awaiting SOF/VEL/GS-9857 trial" (under  "New Members" area), over to this "Clinical Trial Participants" area, as  "I'M IN!! - Started the 8 week SOF/VEL/GS-9857 Trial"!

I'm already on Day 5 of the trial thus far. My journey in getting here can be found in my first "Awaiting ... " thread mentioned above.

I will have to update my tardy signature line and other bits of data as I go along, but I can see, now, that my trial lab results are going to be very lagging from when they are actually done. But I will post them as I get them.  

Two bits of news to share today:

(1)   Other than some rather minor stomach "roiling", and some small headaches, I cannot attribute these complaints  to being side effects of the drugs I am on, or not! Yay, really minor anyway, on the scale of things!

(2)   Even better news! Blew me away to learn this ... 

      (Uh oh, hmm, I should back up a bit here, and explain the historical progression of things for clarity.)

Had hep B (and C) in 1973, I was very ill. Didn't know about the C! I beat off the B all by myself (naturally spontaneous resolved my B, just lucky, no treatment required, deemed a non-carrier of B), unbeknownst to me or anyone then, I had also contracted C at the same time I had the B. The C I only found out about, the hard way, some 40 + year later. Too bad I was not as lucky with the C to spontaneously fight it off in 1973 as well. I finally found out why I was not doing so well health-wise, when my C was finally discovered by happenstance Jul of 2015. Explained years of wondering what was wrong with me and my health. Wish now I had a nickel for everytime I had secretly wished I could jump inside somebody else's body, just for a bit , to check out  what normal was! Decades of chalking it up to just being unlucky, or just aging poorly, etc., etc., all the while thinking this can't be right, this can't be normal! After the initial shock/realization, finally finding out, "being diagnosed" in Jul 2015 that I had had hepc all this time, it answered a lot of my decades long questions. Since Jul 2015 I tried to shove fear aside enough to read and inform myself as quickly as I could. Generally, one would not think sharing a seat with fear would be helpful in the early days of diagnosis, but it was helpful for me, I let it push me/propel me at warp-speed panic mode leaving no stone unturned to find the best possible treatment I could muster up for myself as quickly as I could.

 

NOW - back to the (2) "blew me away part" ... sorry for the interruption ... my first and ONLY Viral Load, done when I was first diagnosed Jul/Aug 2015, came in at a whopping 10 million (10,182,417) to be precise, or, 7.01 log in old school language.

 

Aug 2015 "Pre-treatment" VL was over 10 million.

Then, fret along for many months thereafter trying to get into treatment. Fast forward through 6 + months of many other outside tests, labs, and preparatory assessments, finally getting to my second  VL (done  by trial/for trial inclusion) in Feb 2016.

 

Feb 2016 "Pre-treatment" VL was (ta-da!) only 844,000!!!!

 

What! How can that be??!! Now, I've heard of VL fluctuations, but I never heard of this! How can someone have such a large 10 fold drop in their VL, all by themselves, before even being treated!! Like - yay!, I will NEVER complain about a having a lower load, no matter how I got there!, but I have never been more surprized nor confounded by this new news. A wee pleasant mystery, I'd say, unless someone has a good explanation for me. I didn't have to do a gall dang thing and I got my own load down 10 times from what it was?! - without treatment??!! Does not compute.

First thing I did, of course, was to query my doc - how could it have gone from over 10 million to be below 1 million in the course of 6 months without treatment - he just said ... "hm, yes, unusual". I figure it must be JimmyK's doing. Unless any of you could enlighten me further. 

 

Any idea's?  Have any of you seen this before?  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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