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Hep C Discussion Forum -> Clinical Trial Participants -> Fight the Good Fight - Sofosbuvir Working for Me, now for SVR.
Post Info TOPIC: Fight the Good Fight - Sofosbuvir Working for Me, now for SVR.
sandyw


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RE: Fight the Good Fight - Sofosbuvir Working for Me, now for SVR.
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I am taking Sofosbuvir and Daclatasvir. Started since 2 weeks and viral load has gone from 2 million to 285 thousand. No side effects besides what I already had which was the full body itching.

Quite amazing. Hope yours work well.



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sandy
Tig


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Hi Scot,

Your location is just fine and this post would be suitable for either. I'm glad you got on this trial, it's a good one and I believe you'll do very well on it. I've seen statements regarding the use of Riba as unnecessary, and some that show a felt benefit. Whatever your position on it is, if you can tolerate it, no harm done and it will provide one more arrow in your quiver.

Good luck and keep us involved in your progress. This time SVR is yours!!!!

Tig



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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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scotu


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Perhaps this post should be in the Harvoni Treatment Train... I'll leave that to one of the moderators.

Thanks to all for your support!  So here we go again.

My Harvoni Trial (Gilead: 90 mg of ledipasvir and 400 mg of sofosbuvir) Train has left the station.  And it still includes Ribavirin.

End of Week 1 virus down from 790,000 (at week 24 post Sovaldi+Riba) to 67, not quit undetected. 

At week 4 undetectable.

This is another Gilead (24 week) trial through the University of Pennsylvania for Geno 1A'ers, relapser's, and all those other things.

My thoughts, prayers and support go out to all.

Side effects are negligible or maybe I'm just used to it; insomnia, low energy, etc.

But this time IT'S GONNA WORK!  SVR here I come.

 



__________________

ScotU - Age 61, Geno 1A, Diagnosed 1999. Cirrhosis (so no more biospy's), but decent MELD score.  Too many studies, trials, and treatments to remember!  24 Week Harvoni (w/ Ribavirin) Trial - SVR @ 24 Post - 8/28/15
Dzdayscomin


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Hey Scott , sorry to hear of your set back that really bites, but hang in there and be strong for the next go round, we are a ll here thinking about you and praying for your successful tx to come.

Blessings to you good man stay strong and you will overcome!

Duane



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Groupergetter


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Truly sorry to hear this Scot.  It's good you can stay positive about it.  With the new meds there are such high hopes and expectations that we often lose sight of the down side.  I will go into any future tx with a much more guardedly optimistic, and realistic view.  Next time will be 4 for me.   Give the little one a hug, it will make you both feel better.  Be well sir.   



-- Edited by Groupergetter on Friday 19th of September 2014 12:52:13 AM



-- Edited by Groupergetter on Friday 19th of September 2014 01:03:33 AM

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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
mallani


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Hi Scot,

That's really disappointing!! Obviously Riba isn't the drug to control Sovaldi variants in your case.

You've been through the mill, and you must get it right next time. I'd talk to the docs, and see what they think about the AbbVie trio. Your liver has had a good holiday so you've got time to carefully consider the next (final) step. Tough luck mate!



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Isiscat2011


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Hi Scot:

So sorry to read of your relapse at 24 weeks.   Rather an odd protocol you were on for a gt 1.   Adding Ledipasvir could work but I'd still be a bit concerned about Sovaldi RAVs which are, in all likelihood, the reason for the relapse.  How about going with the ABBvie combo in December? Any thoughts on that?

Just hate to see you go through this yet another time--and for 6 months--you need to SVR for good next time!    



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Tig


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Hey Scot,

Damn!! is right  I'm so sorry to hear your news. I'm stunned frankly! If 48 weeks of Sovaldi and Riba weren't enough to kill your beast, then it must be one mean and nasty variant. What's your plan? Are you going to jump back on it right away or spend some additional time recovering? I would almost lean toward going right back after it. Let us know when you have a chance. Do your best to keep your spirits up. I hope you keep us in the loop. We're here to help if we can Scot, just let us know. The newest "kids" on the block seem to really offer some good hope for the future. I hope they will finally offer you the results you've long deserved. Good luck buddy!

Tig



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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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TomF


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I am sorry to hear your disappointing news.  cry  That really hurts -- just when you thought you were safely through.  "Damn" does not even begin to cover it.  You are a far better man than I!

 

This is also a painful reality check for the rest of us who are currently being treated.  The new medicines are amazing, but they are not perfect.  That is difficult to think about, and even more difficult to write about, but it is something we all need to accept.

 

Fortunately the medicines keep improving.  Sofosbuvir/Ledipasvir will be even more amazing.  I hope it is the one for you!



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Tom

HCV GT1a since 1983.  1998 - Interferon/ribavirin null responder.  7 Jul 2014 - started 12 weeks Solvaldi/Oysio, VL 5.5 million.  UND at SOT+4, EOT+4, and EOT+12 weeks.

scotu


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Unfortunately, my 12 Week Post Sofosbuvir/Ribavirin jubilation was dampened @ Week 24.

The beast is back. 

Damn (please excuse my language)... from Day 3 through 48 Weeks of Meds and 1,4 and 12 Weeks Post it was undetected.

Even Mr. Doctor and staff were shocked, they said (mostly teasingly) that I had messed up a research paper they were set to publish.

Sorry 'bout that!

Anyway if all goes well I'll start another 24 Week regiment of Sofosbuvir, Ledipasvir and of course good old Ribavirin.  



__________________

ScotU - Age 61, Geno 1A, Diagnosed 1999. Cirrhosis (so no more biospy's), but decent MELD score.  Too many studies, trials, and treatments to remember!  24 Week Harvoni (w/ Ribavirin) Trial - SVR @ 24 Post - 8/28/15
Matt Chris


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Hey Scot

Its such happy news to hear that you have made to 12 weeks EOT UND, You have been a super trooper in the HCV treatments with a never give up attitude which we all need to have.

Thanks for keeping us informed

matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Cinnamon Girl


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Hi again Scot, how wonderful to hear this news...many congratulations!!

You`ve waited a long time and fought a tough battle and how fantastic that you`ve got there in the end!

Hope your recovery is going well...how are you feeling now?  Apart from being overjoyed, that is!! 

Onward to SVR!!  biggrin

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

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

UND @ Wk.4, UND @ EOT, 

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

 

 
mallani


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Hi Scot,

You've made it at last! Congrats, buddy.

Good to see that drop in portal venous pressure. It will continue to drop, and your liver will start to improve. All the best, and thanks for sharing. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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Congratulations Scot!!!! Such good vibes are flowing on the forum this weekend! You've fought a long and repetitive battle but finally a successful blow against the beast. I know you're enjoying an almost unbelievable bit of news, but true it is and it's your time to celebrate my friend. I can't be happier for you!  .5% relapse??? I like them kinda odds! Good luck....

Tig



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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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scotu


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Some of the Best News I've had in a long time!

After many trials (since 1999, Interferon in various formulations and enough Ribavirin to fill a room), and prescription drugs (Incivek was the worst)...,

then 48 Weeks of Sofosbuvir (7977) and Ribavirin (undetected at day 3 on)

12 Week Post Treatment:  HCV RNA PCR TAQMAN 2.0 -- HCV RNA not detected.

According to trial coordinator, if undetected @ week 12 post, there is less than .5% chance of a reoccurrence. Next check is 3 months.

Looks like some of this poison we take to fight the dragon may actually work!

To those on treatment, hang tough!

 



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ScotU - Age 61, Geno 1A, Diagnosed 1999. Cirrhosis (so no more biospy's), but decent MELD score.  Too many studies, trials, and treatments to remember!  24 Week Harvoni (w/ Ribavirin) Trial - SVR @ 24 Post - 8/28/15
scotu


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Pressure test went well.  Pressure was reduced from 19 (at the start of the trial) to 14 (last week) which is good (I'm told) showing I have mild portal hypertension.  Cirrhosis and portal hypertension were requirements of the Gilead GS7977 study.  Had post treatment blood work last Monday (same day as pressure test).  2 week post treatment blood work this Friday.



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ScotU - Age 61, Geno 1A, Diagnosed 1999. Cirrhosis (so no more biospy's), but decent MELD score.  Too many studies, trials, and treatments to remember!  24 Week Harvoni (w/ Ribavirin) Trial - SVR @ 24 Post - 8/28/15
Loopy Lisa


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Thank you for letting me know, at least I wont have to worry about being a bag of bones on my TX when I start. Keeping my fingers crossed for you! :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 
lauralou57


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Congragulations on being undetected!



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scotu


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Thank you all,

Lisa,

I actually wish there was some weight loss, but I gained a little.  I'm over weight to being with, and my body is probably getting used to this "stuff."

Malcolm,

Cirrhotics and portal hypertension (I've had a couple esophageal varices banding procedures) were requirements of this trial. Transjugular hepatic venous pressure test was also a requirement at the beginning and the end.

Scot



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ScotU - Age 61, Geno 1A, Diagnosed 1999. Cirrhosis (so no more biospy's), but decent MELD score.  Too many studies, trials, and treatments to remember!  24 Week Harvoni (w/ Ribavirin) Trial - SVR @ 24 Post - 8/28/15
Loopy Lisa


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Hi Scott,

Congratulations on being undetedected! I was wondering if you had experienced any weight loss on this combination? The old treatment we heard a lot about weight loss and this combination....

 

Thanks...



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Cinnamon Girl


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Hi Scott, nice to hear from you again!  I really admire your determination having been through so many different treatments, and I`m so pleased this trial has gone so well for you...Und from day 3 is fantastic!! 

Thanks for sharing your experiences with the side effects, this is very useful for us to hear about.  Even with 48 weeks of fatigue, insomnia etc, this must have been a breeze for you compared with previous treatments, and especially with incivek!

Wishing you all the best for SVR, I`d say you have good reason to be optimistic this time around!

Keep us posted! 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.

 

 
mallani


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Hi Scot,

Good to hear from you! Wow, that's a lot of Sovaldi- it sounds easier than the Incivek triple.

I'm interested in the transjugular hepatic venous pressure test. Is that only for cirrhotics? It's a hell of a way to test for portal hypertension but certainly accurate.

Onwards to SVR. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Matt Chris


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Hey Scot

That is great news for all to hear, wow 48 weeks of Sofosbuvir have not heard of that trial.

Hope all goes well with your other issues and please stay in touch, SVR is on its way.

matt



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
scotu


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Haven't posted in a while... was kinda of scolded by trial coordinator for posting/sharing too much.

Coming to the end of 48 weeks of Sofosbuvir (400mg x 1 a day) and Ribavirin (200mg 3 x am, 3 x pm).  9 days left.

Undetectable from day 3 on.  This stuff works for me.  Sad to hear it now costs a grand a pill.

Side effects:  some loss of energy/drive, insomnia, some general aches and pains, but no worse than the many other treatments.

Next visit is Trans-jugular Hepatic Venous Pressure test.  Had one going in and one coming out. 

Next milestone is post treatment SVR.  All fingers crossed.

My thoughts and prayers continue to go out to the entire HCV Community!

If your on treatment, hang in!!!  Fight the good fight.

Thanks to those who have been through the various clinical trials (as i have) to test these concoctions. 

I've lost track of how many times I've taken Ribavirin, Interferon (of one form or the other),  and Oh! the pain from Teleprevir/Incivek but it would have been worth it if there was SVR.

 



-- Edited by scotu on Friday 7th of February 2014 04:29:55 PM

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ScotU - Age 61, Geno 1A, Diagnosed 1999. Cirrhosis (so no more biospy's), but decent MELD score.  Too many studies, trials, and treatments to remember!  24 Week Harvoni (w/ Ribavirin) Trial - SVR @ 24 Post - 8/28/15
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