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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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Congrats on finishing treatment and Canuck I am sorry you were having such a difficult time. I hope you are feeling better now.

Please do keep us posted.

 

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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Noted Jimmy re antibiotics.  In fact, now that I remember when I had root canal before on the other side of my mouth that's what the dentist did.

Thanks Robert.  Yes, I had a few nerve wobbles in the early weeks of treatment.



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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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HI you Two Warriors. 

CC--  I have really enjoyed our on line relationship. Im so glad you finished and I can't wait for your 4 week post results. Your a fighter. Sorry to hear about all the post treatment crap going on with you, hang in there and take them on like you did the hcv. Remember how the stars lined up for you!!  Thank you for all the kind words of encouragement .  RC

 

James  (aka-Pablito)-- Congratulations on your Finnish.  I know it got a little dicey there in the beginning of your treatment, you stuck to it and it will pay off. We had a member on the forum that had the same dilemma with the extre bottle, and in the end he did the right thing just like you did. My hats off to you both.  I know you will keep us posted. RC

 



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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DO NOT DO A ROOT CANAL WITH AN ACTIVE INFECTION.

Get some Antibiotics, kill the infection and THEN let them dig.

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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I gave the extra bottle back today.  As Canuck predicted it was a spare one in case I lost any meds.

I've got friendly with one of the nursing assistants and I sweet talked her into giving me another fibroscan at the end of the trial (EOT+24).  Sweet!

Sorry to hear about your ear troubles Canuck.  Sounds unpleasant.  That reminds me that I have an abscess in one of my teeth that I've been putting off until the end of the trial.  I just didn't fancy root canal treatment...but as you know if one puts these things off...



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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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Hi you dragon slayers, you have passed the finish line, that is sooo exciting, and in retrospect must have gone pretty fast! Sorry to hear about the infections, they sound pretty painful. I hope they resolve that issue soon.

I look forward to reading both your UND, so you can be added to the Dragon Slayer hall of fame. Hopefully every person that visits here can have that honour sooner than later. :D



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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 

Tig


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Canuck,

Sounds like you've really had a go of it! I'm so sorry you're feeling like you got pulled through the keyhole backwards. I suffered with ear infections for years and I know how miserable those can be. I do hope they resolve, along with the other problems. With all those antibiotics, I hope you're taking a good probiotic and washing them down with a good yogurt smoothie. I know someone, can't think of his name, it's right there though, that has a great bunch of recipes! I'll bet he'd even make up a Canuck Special recipe. It's that guy with the attraction for funny computer systems, LINUX, I think, lol!! Good old Dave, he does have some interesting, if not unhinged ideas that benefit us all. All funnin' aside, I do hope and pray you get to feeling better and get past all those infections. Could be your immune system is going berserk right now. It's going after everything in it's path and letting you know it.

The blood work looks great! So many improvements across the board. I'd be very pleased with that. Two more to go and we know they'll be stellar, just like the rest. Speaking of rest, I hope you're taking the opportunity to lay low and let these infections clear up. Don't try to push yourself too hard. Keep up the extra hydration, sounds like you could benefit from a good constant flush. Green Smoothie time! Calling DAVE, oh DAVE

Good luck Sister, we're here for you and want to know how you're doing, often as you're up to it. You'll be pulling into the station in no time. We want you feeling like a million bucks!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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This has been an enjoyable read. Two people I care about are in fact doing better.

None of us got into the condition we have found ourselves overnight nor shall those conditions that we are now concerned about suddenly disappear.

What is cool however is to follow how closely each of us looks into that which ails us. It seems like just yesterday when all was thrown to the wind and reckless disregard was shown in the pursuit of things now considered so foolish. At least wise as far as my walk has been I can say without hesitation I am quite fortunate to be this side of the Daisy.

How very true the words,"For what is your life? It is even a vapor, that appears for a little time, and then vanish away."

Indeed life is beautiful and it is a privilege to travel with y'all.

 

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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Congrats pablito. Cracking that last, full bottle must have been tempting but I'm glad you didn't. Just look for to SVR now.

Canuck,

i didn't whisper behind your hand bag. Too scared I'd moz myself. But I'm so sorry you have been undergoing all this unrelated stuff since EOT.

the abscess in particular sounds excruciating. Not to mention infections in you ear canals. Have they gone away now? Make sure they are giving you the right antibiotics - as you know, I have been through many infections and sometimes the doctors consider their work done when the write the script. No follow up to see if the infections actually abating. And if it's not in the first 48 hours then it means that bacteria is not susceptible to that particular infection.,they need to test fir the type of bacteria you have and treat you with an antibiotic that works.,amazing that even with all that going on, you can still detect improvements in your energy levels and brain fog. 

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.



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I'd be extra sure of their intentions with the extra bottle first thing in the morning.

If it is indeed an extra then congrats on EOT Pablo. You've done a good job as an HCV warrior and I hope to see you do well as an HCV victor from this point forward. "Onwards and upwards!" for sure!!!



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57 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,+115wks = SVR-115

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I know Tig.  It's really putting temptation in one's path.  And like you say, that's some $30k in that bottle.  I can walk to the hospital so it's not like it would be hard to get a replacement.

I still haven't out ruled it being a mistake, as there was a lot of confusion at the beginning as to which trial I was joining...they even sent me the wrong consent form initially.  And the clinic is always so busy, seeing different staff etc.  And seeing that it's the same group running both trials it could have been a simple mistake on behalf of the nurse that day...but they would have contacted me by now so it must be a back-up bottle.

Canuck says she knows of one other person on the same trial that got an extra bottle, but she herself didn't get one.



-- Edited by Pablito on Sunday 5th of June 2016 06:30:31 PM



-- Edited by Pablito on Sunday 5th of June 2016 06:31:10 PM

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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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Honesty is always the best policy, but dang, that's probably a minimum of $35,000 USD! Whew! As smoothly as it's gone, too bad they don't draw your labs and then let you finish the last one! I know it would skew the 8 week trial results, but still. I hadn't ever heard of them providing a back up bottle, just in case. That was pretty forward thinking, but they also could've just mailed you or gave you any make up pills at your check ins. I'm sure the cost of that bottle coming from Gilead's research division costs them about  $10 USD! There's probably a clause in your contract that says you have to pay for it if it isn't returned. That shouldn't be necessary anyway, now you can prepare for SVR instead of EOT. One down, one to go.... smile



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Yes all, the last pill has now been consumed and I feel great.

The 3rd bottle remains unopened and will be returned to the trial tomorrow.  Initially, I thought they had made mistake in giving me a 3rd bottle (the background being that initially I was going to be in a different Polaris trial wherein I would have got 3 months of sof/vel/GS-9857 because of my genotype); but then Canuck pointed out to me that the extra bottle was in case I lost any of the tablets.

I'd be lying if I said that the thought hadn't crossed my mind to either lie and say I'd lost the extra bottle or opt of of the trial and use the spare bottle, but on so many levels that would have been wrong.

So thanks to all of you for your support during this time and I eagerly wait the result of my forthcoming VL tests.

Onwards and upwards!



-- Edited by Pablito on Sunday 5th of June 2016 05:50:51 PM



-- Edited by Pablito on Sunday 5th of June 2016 05:52:22 PM

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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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Congrats on EOT Pablo! Job well done ... another dragon dead and gone from this realm. Yay!

Happy for ya!!

 

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

 

Tig


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The last pill is down the hatch Pablo! You're officially done! How does that feel? Good job my friend, you did it, congratz!

Your Dragon is in flames......

image.jpeg



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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What a great few posts:

Relieved to know Canuck is not pregnant.

Awesome news about Pablo

And Tig said dragon azz and stool hehe. (Watched way too much Beavis and Butthead)

HUGZ,

wendy 

 

 



-- Edited by wendyo on Sunday 5th of June 2016 02:00:29 PM

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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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Afternoon chaps and girl chaps (?!?)

Yes, today is the last day....2 more hours and I take the last tablet.

Then I'm off for my EOT appointment and bloods tomorrow.  Then there's a 4 week wait until the next appointment and EOT+4 bloods; but I should be able to chase down the EOT blood results in about a weeks time or so.

Fingers crossed!  It'll be fine.



-- Edited by Pablito on Sunday 5th of June 2016 12:30:06 PM

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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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SF,

That was on the 31st, it's entirely possible today is it. Pablo?? Are you hiding something? Have you reached the Station today? Can you add those three letters to your signature, EOT? I believe it's close enough to say, CONGRATULATIONS!!! You made it Brother!

Time for a little update and then a trip down to the Dragon Azz Pub for a shot of success! The first stool is yours!!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Pablito wrote:

5 days to go!


 That was 4 days ago so if I counted right on my fingers tomorrow should be your last day .... counts again.

Well done and it's a good feeling to down the last one. Please keep us posted.

 

SF

 

ps. Hi Canuck, I as well have been very delinquent around here as far as posting but I always read. Looking for forward to your next results.



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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 EVERYBODY,

So sorry I have not been able to post much lately, so many new people coming on to the site that I would love to start up conversations with, but I have been spreading myself a little too thin lately.

I regularly dip in and read about you all (old friends and new folk) and then have to wisk away again.

I will get caught up one of these days, I hope!

Pablo - you are finishing your last pill of the 8 week sof/vel/vox trial on Sunday, Jun 5? Yay! And I finished my last pill (of the same trial) before you on May 5.

My trusty partner (driver, walking time-piece/calendar, speller, math/fact checker, and back-up memory bank) and I left for our long drive down to the big city to see the hep doc on Thurs. Jun 2, for my 4 week post-EOT appointment, on Fri. June 3. We always stay over at a motel.

Got back home late Friday night.

I'll let y'all know what my 4 week post-EOT VL and labs are, as soon as I get them back (this coming week I hope), but, we can all predict what they are going to be - can't we!!

Oh, I almost forgot to update you on the 5, or is that 6, pregnancy tests Gilead has done on me now so far!!, I know you will all be very relieved to know with assurance, that this long-ago post-menopausal senior citizen who has only been on hormone replacement therapy for about the last decade, and who has been practicing only the most secure and severe form of 100% proven method of birth control/contraception ever known to man for quite some time now, has succeeded in not yet conceiving by immaculate conception.

Since EOT, I have not been feeling 100% - (little things) cold/flu/allergies/coughing/wheezing, and as well (starting before I finished my trial) a crop of rotating ear canal pustuales, some of which got large and painful!! I'd get one ear cleared up with antibiotic drops and another one starts! Very inconvenient, and bad timing! Drat it all! It's raining on my parade. The local docs in my small town have been seeing me for my ears and a forehead thing. (On my Jun 3 appoint. the hep doc did give me a puffer to try, and referred me to a ENT guy, and,oh BTW, I only have about 1 1/2 veins for bloodletting, I know what Wendy means when she give the phlebotomist the eye and states emphatically "butterfly"! With 1 and a 1/2 veins, I am lucky if they can try 3 times. I came out a pincushion Jun 3, but lucky in the end, I was starting to wonder if I would have to do a Jimmy and get it drawn from my leg! - Pablo and skimily - I at least consoled byself well for my pincushion condition by eating the delicious huge )

A couple weeks ago (to add to my small bag of complaints) I also got a glorified pimple on my forehead, which (oh thanks) turned into a nice stubborn abscess, which painfully grew (double thanks) to which a week of oral keflex I tried was too late, and was never going to work, until it had to to be cut open and drained last week! Just damned unlucky it seems!! Just when i am trying to discern how much better I "might" be feeling (post-treatment), I am being plagued with all these little things, which in turn, camouflage how much better I might be!

Despite these small ill-timed irksome maladies, and through the last 4 weeks since EOT, I HAVE(slowly) been able to discern ... possibly ... an increase in strength, less fatigue, and my brain fog has at least returned to pre-treatment levels, if not possibly improving a bit from pre-treatment levels!

While I was on treatment I DO think my brain fog got thicker. I noticed, in the very first several days to 1 week after EOT, that the "extra" layer of the drug-hangover feeling I was experiencing while on the meds (which contributed to my fog), left!! That was very nice! And it also feels good to feel a bit stronger, and, I am no longer so subject to those profound overwhelming irresistible naps that used to overtake me which occurred pre-treatment despite how much sleep i got!!

On my previous May 5 appointment (my EOT appointment) my poor doc asked "Uh, WHY am I doing this"? (I had presented him with a shopping bag/wish-list of extra lab work I pined for - things I knew Gilead would not be ordering). I replied,"Because ... it would make me feel better?, because .... they are things I would like to follow?, because ... I would find it reassuring, just like I feel when my other tests return and show "UND, NORMAL or IMPROVED from before"?, because .... my past TIBC's, iron load and lipids were high before?, because ... I have a fatty hard liver?, because ... it would help me feel more comfortable with my paranoia about my history of having a case of spontaneously resolved HEP B back in the 70"s when I first contracted the HCV then as well?, because ... at the very least I want to know if my lab work shows that after all my "extra" insurance of my recent double dosed HEP A/B immunization, that my immunization antibody titres are indeed showing up as "technically immune" to A/B by way of immunization?".

He kindly starts ticking boxes on the lab req, mulling it over, carefully gauging what tests were warranted and justifiable, what was logically acceptable to look at again, and, what would placate me. He refused imaging/ultrasound/fibroscan (I will ask again later for the U/S, fibroscan), he also refused the HBV PCR to rule out dormant/occult HBV as that likelihood (as I already knew) is remote. (SF will relate to me pining for B and iron info).

So, the results from my shopping bag/wishlist of extra tests:

Testing (for the outcome of my 6 month series of A/B immunizations) resulted in: an A test showing I have now recently achieved immunity to A, and an immunity antibody titre of 17 to B (B immunity has to be over 10). Prior to immunization I had no immunity to A, and my B antibody titre was too low (below 10) at 6/7.

Altho, not very high, I really did prefer to see my pre-trail AFP of 10, go down to (post-treatment) 4! (normal limit is 0 to 8).

My lipid panel is still not right, but not too bad - chol. for instance: was at 6 pre-treatment, and is 6.33 post-treatment (normal should be less than 5.20). But I think some of the other lipid parameters look improved - I'll have to confirm this with the doc.

Pre-trial my ferritin levels ran at 462, 443, 541 no matter what I tried to do myself to lower it (normal is between 15-300), I am happy now (post-treatment) that my ferritin level showed a decrease to be within normal limits at 191!!

Pre-trial my T.S. (iron saturation index) that was always too high at .47, .81, .55, .71 (normal is .15-.45), post-treatment it's down to within normal limits at .39.

Pre-trial my serum iron ran up to 42, 37 (normal is 9-32), post-trial it is now 22.

So, I am glad to have some concrete, objective lab tests to feel good about, and will wait patiently to discern and clarify further the more elusive subjective physical improvements.

I am so looking forward to my next UND and Alt! smileC.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Hey Pablito,

Your almost there ... wow, time does fly ... less than a week to go ... smile

 

See ya at the station,

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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Thanks Jill.  Yes, time has flown.

And, yes, I more relaxed about the results.  I have some understandable anxiety but it's small and well contained.



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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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Nice!  Seems like it was only yesterday that you arrived here, Pablo!  Hope you`re feeling more relaxed about your results now... smile

 



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(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

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

 

 



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5 days to go!



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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 Robert.  I know what you mean by love/hate relationship: part of me can't wait to finish and part of me wants to keep taking them!

I really hope your situation works out...you've been through the wars.  



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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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Hi Pablito,  Your geting closer to the end of treatment, way to go. Its a love/hate relationship with the meds. Your liver will be so much better now.Im looking forward to the trial results from this trial.RC



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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Thanks for the endorsement Tig.  9 days to go.  Woo-hoo.  



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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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And so it shall be Pablo..... I have a window into the future

                                   

magic 8 ball.small.jpg



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Yes, that's the best description as to how I feel: clean on the inside.  That icky slightly toxic feeling has been gone for weeks now.  

And, yes, Canuck that's the inner child in me that really, really reeeealllyyy wants this.

 



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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, 

Had feelings like that too (excitement/worry/dread, big and small celebrations along the way). It was an odd celebration when I finally got that bottle #1 empty!! Then the countdown, to the last few pills of the final bottle #2 was also exciting. Each day, of my last 3 pills, I would look over and show my partner a great big silly grin, and rattle that bottle, until there were none! The silence of that bottle was lovely. I would, along with my big grin, say things, just-like- that .... I reaaly, reallly, reeeeaaaaly hope this works!! Already knowing, all along, that I had EVERY indication that it HAD already worked!! Mind is a funny thing (at least mine is), that's fer sure! Your UND will make your mind feel better. I was not so lucky as to be able to physically feel it (yet), that would have been nice, I had to be satisfied with a lovely crashing ALTS and VL drops, until I got the "technical" soothing UND.

I loved Tigs analogy to me about being on a short 8 second rodeo ride - my only job was just to hang on, and not get bucked off. Easy!

I told him (in ref. to my short course) - a little dab should do me!

In no time, you will see the results you are needing! Just hang on to the horn. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Wow, loads of congratualtions here to give. It is soooo good to read positive things. I love the name Saskia too, beautiful and has a ring to it.

Pablito, wow, congrats, I an relate to how you feel, I can't wait either after 20 odd years to feel normal, I mean what is that?

I like that idea - clean on the inside. That is my new thought for the weeks ahead!!! :D

 

Arghhh, such positive people, I needed that :D x



-- Edited by Loopy Lisa on Tuesday 24th of May 2016 03:34:06 PM

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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



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As of today I have only 12 tablets left of sof/vel/GS-9857...or sof/vel/vox, as it is now called.

Where does the time go?  I feel great, so clean inside my body.  Looking back, I only had some fatigue and hot flushes for the first few days and then a strange gastro thing at week 4 (that may have been unrelated)...other than that it's been plain sailing.

As you all know I retain some anxiety around the week 4 VL coming back at 269, but I'm managing this worry well.

I really, really, really want this to work because I feel so great and, looking back, I realise that I was minimising the effects HCV was having on me for nearly 20 years (deliberately so, actually, as a coping mechanism).

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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Sydhanrahan wrote:
On a much lighter note, Saskia was born at 10.00 am this morning. She weighs 8Lbs and mother and baby are well. I am so relieved. Spent the day with the other two. Michael 1, put on a brave boysie face and didn't cry for her at all. Alannah spent the day picking her flowers, making hearts out of play dough for her and drawing her pictures. By dinner time she broke a bit and just said I miss my mum. I wish it was possible to protect these precious little beings from all that life seems to heave into the path of most of us.

I went round there at 3 am when I got the phone call,so to be still here at 11.04 hovering around my "no place like home", I must have a truck load more energy than I had six months ago.

Syd


 Hey Congrats, wonderful news Syd! I think you were WAY more nervous than your daughter ... how nice to hear Mother and Daughter are doing fine smile

Feel free to start breathing again any time Syd ... you were starting to turn blue ... lol.

Hope you get some rest soon ... you'll probably need it.

I agree, Saskia is a very beautiful name.

 

Happy for ya,

Dave



-- Edited by Linuxter on Friday 20th of May 2016 07:18:24 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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Congrats on the new family member Syd.  Saskia is a beautiful 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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Please excuse me chiming in here too... I just popped in to see what was going on here and I see Syd`s great news!  Hugs and congratulations to you, what a joyful day for you and your entire family!  You must be floating on Cloud 9, Syd!!  floating.gif



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Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

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

 

 



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Hey,

I DID NOT make syd cry!!! Nor did I ruin Harvoni dreamland! I am innocent of all charges. 

syd, DON"T try any kind of "sweeping" (like your daughter) ya,ya, I know, it may sound like a good idea, does get things "moving" (but ask her, she knows a sweep is not the most pleasant experience). No spring cleaning for you!

EVERYBODY ... take a nap, right now! Starting with newest girl, Mommy, GRANNY, 1 yr old, and eldest born. Lights out!

No one in their right mind should be pulling the 3AM to 11 shift.

Waaay too many female hormones gone a-wild over there in Australia.

After you have had a nap syd, I will explain how to remove those toothpicks from your eyes that are painfully propping them open, hmmm, reminds me of a couple movies I've seen ... seen that one where Mel Gibson is mind-controlled, by aid of eye propping and drugs in "Conspiracy Theory"? Or, perhaps it was Anthony Hopkins face mask in "Silence of the Lambs", or, more like the behavioural modification that went on in "A Clockwork Orange"?

Sweet, an 8 pound prize for you all. Congrats to the Mommies.

Wendy, loan your killer "black talking dog clip" to Pablo please?

Rest up everybody.smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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, I feel weird!!!!

Tig, are you messin' with my mind, or is it just my vision improving?

Are you tinkering with your avatar?

Things look dif. from time to time.

Paranoid now. I refuse to use any wireless device today.

Getting out tinfoil as we speak. 

oooom, C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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(although you look way better than this grandma)

CONGRATS lady!



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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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Let me sneak in a big congratulations on the new grand daughter Syd!! My best to Mum and baby, as well as the entire family! smile I love it!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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(although exciting hope can be scary and has to be weirdly balanced out with the oxymoron safety of fear and dread)

Canuck

I am sitting here bawling my eyes out. I have tried to verbalise that fear of hope thing which you have nailed so succinctly my whole life. Ever thought of taking up a writing career in the neuroses area?? Seriously you are marvellous at it. 

Now, I can see how an outsider might see I'm making some progress but am still much too scared to allow myself a peep at it. And I can't imagine life now with out popping HCC fear in my handbag wherever I go. It's pathetic, but at least you've put me in a headlock and propped open my eyes so I'm forced to see it. 

On a much lighter note, Saskia was born at 10.00 am this morning. She weighs 8Lbs and mother and baby are well. I am so relieved. Spent the day with the other two. Michael 1, put on a brave boysie face and didn't cry for her at all. Alannah spent the day picking her flowers, making hearts out of play dough for her and drawing her pictures. By dinner time she broke a bit and just said I miss my mum. I wish it was possible to protect these precious little beings from all that life seems to heave into the path of most of us.

I went round there at 3 am when I got the phone call,so to be still here at 11.04 hovering around my "no place like home", I must have a truck load more energy than I had six months ago. 

Pablito, man, I'm glad the left side of my brain must look like a very small piece of over boiled cabbage if the torture you're capable of inflicting on yourself is what you get for having a high functioning one. Don't go there with the stats.

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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Hi Pablo,

Sorry I could not reply to you and everybody sooner. Was a funny day for me. Doesn't take much for my day to be too short. Friend of mine is very ill, her days are short as well. Those kind of pressing things..

But I couldn't wait to get back to you to tell you HOW GLAD I was that you DID get your VL today (well that was yesterday really, it's now 4:00 AM my time)!! What great news (well, I consider it so). And you did well, in your job of pursuing your VL, even though it made your already busy day much more thick.

I am jumping in late here. But, I just want to re-iterate that you are exhibiting EVERY indication that the drugs are working well. Wonderful you are only 200 and something now! I am very pleased for you. Did I miss reading about what your ALT was?

De je vu all over again, you are doing the same micro-looking stuff I was trying to do (and still do), except .... in that you ARE good at remembering stuff, good at math, actually know how to figure out folds!! OMG, envy here!, and have good command of your well-developed analytical/logic-driven mind. That doesn't always help fear or trepidation much tho. Had you been UND at end of week one, you would still be doing the same thing, counting/reading, comparing stuff. It does kill time and it's a good learning opportunity!

Using your left hemisphere (only) you have already managed to soothe and reassure yourself a bit by use of sheer logic alone, by days end!

The bigger picture IS important, to slot the (limited) published data in order of priority. Concentrate on the most important known fact, that you HAVE been showing all along, that you ARE on your way, IT IS working!! I am thrilled for you.

This stuff is new, REALLY good (I believe), but too new to have enough clear data to lend to reassurance along the way. Have faith!

I can't wait until they publish some new data.  biggrin C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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syd,

This may sound a wee bit nutso (but keep in mind where it comes from, hee hee) - here goes - I am glad you have been slowly semi-ooooming and morphing in and out of que sera sera kinda mode. These states can be rounded out and well-balanced with good doses of fear and anger. This is ALL excellent exploration even if it is exhausting (being forced to have to go through this whole plight, from start to finish), not YOUR big idea, and arrived at against your will! The battle fatigue IS proving to be doing you some good, believe it or not (in my opinion)! I DO understand the need for good self-protective modes that CANNOT be shaken (weird, how fear serves good purposes, no matter how backward that may appear to others) - fear helps battle fear. Go into whatever modes you fluctuate in and out of, they are ALL OK and necessary it seems, maybe even "required". Glimpses forward and backward can be scary (a couple years from now, your forward and backward views WILL be quite different). Even thinking about that right now can be a scary event! I recall early on how allowing myself a few seconds at a time of the exciting, thrilling, trembley feeling of hope for cure to languish around the inside of my head was almost too much to fathom, too much to bear, too much comfort to allow, too exciting, not safe to do too long, too early - a weird state. I allowed that hopeful thinking in, more and more, bouncing back and forth between bouts of joyous bliss and desperate terror. A weird journey.

I wish I could find your original sof/dac/riba then sof/dac thread, the place where you posted all your labs, but for now, i will just rely on your sig below to highlight one item. And this one item IS what you should (every once in a while) go back to look at - clear your mind of everything else (and I mean everything else) and just stare at the words - "UND 9 WEEKS". I know, I know, it will unleash a torrent of self-protective "but, buts", and "what-abouts", and "what-ifs", but it IS a reality, and by looking at this a bit now (although exciting hope can be scary and has to be weirdly balanced out with the oxymoron safety of fear and dread) - you will glean moments of respite from fear and get "glimpses" of your future (before the usual defenses kick back in again). Short re-visits to the words "UND 9 weeks" (and nothing else) is good practice for all that is coming your way. Your function(s) will improve in suit, in good time.

See how many of us feel 'stunned' when cured - can be a hard adjustment, fear takes a long time to give up. The battle is a whole package deal - not confined to just drugs and virus. Fear, being a tool and a symptom, people wait for it to dissipate bit by bit (SVR 12, SVR 24, SVR 48!), and will pack it a long time, until finally one day they can enjoy the vacation without packing along the fear bag. Some may never let go of it (completely) and always drag a bit along with them, you know, just in case, for safety sake! (Prolly me)! Practice up a bit now (like a wee mini-vacation), it will make "later" a little easier, for when you receive your next happy too-exciting VL, and then the next, and then the next!! I was not kidding about the "perfect storm" of excitement, EOT, baby, VL events. Vacations and happy events ARE stressful. I liked your description of being shaken about by the scruff of your neck - from the beginning and through this journey, the WHOLE process IS altering for us, including recovery in the end.

Prepare a bit for it, acclimatize, in advance, for your recovery (I think you already are doing so, and you just haven't caught on to yourself), so that that part is not such a surprize/shock, but (perhaps) more enjoyable in fits and starts. Dare to dream a bit. 

From your nutso pal,  smile C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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 Dave.  I can certainly relate to feeling better, even though I still have a small amount of the virus left. I intuitively knew something good was happening within a day of the first dose.  I always struggled to describe to doctors what HCV felt like, and I wasn't even sure myself if how I was feeling was in fact related to HCV.  It was an icky/toxic/mild hangover feeling that I had most days for 20 years.  If that ever came back I'd know instantly it was HCV even without any blood test because it is such an idiosyncratic feeling; one that has only become truly apparent by its absence, if that makes sense.

As an aside, I have been thinking of late about the possibility ongoing DAA treatment for the subpopulation who are undetected on drugs but who cannot achieve SVR off them.  Just like the anti-retrovirals in HIV...people take them everyday ad finitum to keep their viral loads load down.  I don't understand the science behind DAAs enough to know if this would work in HCV and obviously the current price of DAAs would make this unfeasible, but it's food for thought!



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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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Hi Pablito,

I was <15 Detected at wk 4 and although I am still waiting on my SVR I have ZERO doubt that the Dragon is Dead, Gone, Finito!

My EOT was 04/12/16 and since then I am feeling stronger, more stamina, better at times than I can remember feeling in the last 20 years. I haven't even cleared all the Riba (it does still catch me if I forget to drink enough water or don't get any exercise) but I can tell my body, my system is working better overall. So far this is only anecdotal since I haven't had any more RNA testing done since wk 4 (and won't until wk 12 post Tx) but I know I am cured of HCV.

I was initially upset that I had to wait until wk 12 to finally see Undetected (that was during the last 4 wks of Tx) ... upon completing Tx, however, I have only concentrated on doing whatever I needed to improve life and help my liver and system heal from 40+ years of HCV and the treatment that I had just gone through.

You will do fine, micro analyzing things at this point, as others (and you yourself) have said is not going to help ... you must have faith in a higher power, yourself, these remarkable drugs and your newfound friends here that you will be fine ... thinking positive will eliminate stress that will otherwise only work against you ... no need for that ... thinking positive is a tool that you can use to help fight this battle and heal after ... use that to your advantage.

 

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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Jimmy - thanks for taking the time to do the graphs...encouraging!



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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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Hi Pablito.

Because of the type of work I do I am supposed to be able to put together quick data to identify trends.

Here is what yours looks like in a matter of 4 weeks.

So long as the trend line remains on a downward path you are doing fine.

Your chart and then mine.

You are concerned because you are normal. But your concern is premature.

As long as you continue on a downward trend you are cool. If the trend rises then you have something to discuss with your Doctor.

Presently I am UND and to be honest, it does not mean jack until they tell me that on December 23rd of this year.

Hang in there brother!

 

 

 



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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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Having looked into it a bit more, it seems a two sided coin...

- the positive predictive value of being undetected at 4 weeks is very high, i.e. the chances of achieving SVR12 are very high

- at the same time, the negative predictive value of being detectable at week 4 is low, the chances of not achieving SVR12 are still low, if a bit higher than above

Is there anything I can do about it? No.  Am I in my head and worrying unnecessarily? Yes.  Is it human to worry about not receiving good news? Yes.  

It's an emotional response, not a logical one.  I've seen people on here flip out because their 4 week test came back at <15 IU/ml detected so please forgive me if I am disappointed to have a score of 269, one that puts me in the 3% or so of people who aren't undetected at this stage...even if it still means my chances of SVR12 are good it would have been reassuring for the VL to be <15 at this stage.

On a practical note, do you know of other members on here who whose VL was >15 at week 4 (or later) who went on to achieve SVR12?  I think I would find that reassuring.

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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Get out of your head Pablo and enjoy today. You are projecting and that does no good. All we have is this moment......enjoy. 



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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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Relax Pablo and put away your calculator! The percentage of people being undetected at a given point during treatment may be a nice morale booster, but it doesn't impact the SVR12 rate of 96% in the category of patients you are with on this train (trial). You'll be successful, I think you should relax and enjoy the scenery as your journey nears the station! 



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61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hi all. I was literally just logging in to this forum when I got a call from the trial nurse. So my week 4 VL was 269. Just to recap, my pretreatment VL was 2.1 million, week 1 was 3000 and week 2 was 1000. So all heading down but I am worried that given that 97% of people on previous trails of Sof/vel/GS9857 are undetectable at week 4 that 8 weeks isn't going to be long enough for me. I know week 4 is just week 4 and this doesn't mean I won't achieve SVR but if you plot the curve of decline the rate is slowing down, and even if I maintained the 4 fold drop achieved between week 2 and 4 for the remaining 4 weeks of the trail I still wouldn't get below 15 IU/ml, never mind having a few last weeks of the trial at undetectable to nuke the few remaining baddies. So I haven't thrown in the towel but I am realistically concerned. 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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