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Hep C Discussion Forum -> Post Treatment -> Failed sovaldi
Post Info TOPIC: Failed sovaldi
Huey


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RE: Failed sovaldi
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I hate just the way it sounds,  Failed Sovaldi,  Your days is comming,

we are all in this together Keep your stick on the ice. {Red Green Show}



__________________

  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
jimbob


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John--

Our tx histories are are different I know, and maybe the reason my GI feels so confident ; however, i'm obviously concerned. I'm going to take Isiscat's advice and have a 12 week Vl done thru my PCP if possible.

Onto the NEAR future John. The S/L combo is showing super results for non-responders and is ONLY 2-3 MONTHS AWAY!

Jim had excellent advice on walking in the woods, etc. Focus on staying occupied and healthy until the new stuff arrives.

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jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
Gracie


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This sucks big time and I am very sorry you are going through it. I am just starting now to come out of my post treatment failure funk. Didn't feel myself for the longest time, but I was doing the stinky incevik combo which was very hard on my system. I have heard the sovaldi/olysio combo has much better SVR rates for us non responders And can be used after our types of treatments failed after a few months to rid oneself of the residual RIBA crapola. as for maintenance best thing to do is eat clean and take milk thistle (Not sure how much good milk thistle does, but it makes me feel like I'm doing something), No fatty foods and as much exercise as you can fit in to fight fatigue.

I'm feeling much better now almost 5 months post failure and have started to get hopeful again after looking at all that is on the horizon for us. I watched a show on YouTube where a specialist was talking about the new treatments and she said within the next ten years, hep c will be A thing of the past....



__________________
  1. Gracie

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


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Hi John.

I would rest up and drink a lot of water. Try to slowly start to exercise a little at a time. Maybe go for a walk every day if possible and slowly increase the time. A walk in the woods is best if that is an option.

Mentally, when I failed triple tx, I just tried to focus on the fact that my liver got a little break and that I was not done trying. That I would be ready for the next time. I was grateful for the chance I had to try and get rid of it. Not everybody gets a chance. Stay the course John, your day will come.

 

ps I wish you could have done without the interferon. maybe you explained why already. I apologize if you did or even if you know why.

I would assume it's Gilead trying anything except a partnership with BMS.   Anyway......

 



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
JLynch30


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Thank you - in your case it looks great because you have not used interferon before!



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John   non-responder  

Undetected at week 2 on solvaldi/rib/interferon:  stayed through week 12 but virus came back as soon as I stopped.  on   Harvoni and ribravirin 24 weeks undetected after two. 8/2/15  12 week EOT  UNDETECTED!  SVR

1991-2015 RIP

 
jimbob


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Oh John, man I thought this was the tx. for you . I feel for you and know you had to be really shocked and disappointed.

I agree with Isis now about checking for. IL28 B or other possible flags that might hinder tx. Personally, I think too many professionals are relying on the 92% cure rate without giving it a second thought. That was the opinion of
my GI anyway who doesnt think it necessary to check my VL until the 6 month mark. I really thought this tx would be potent enough.

Try to stay strong John. I have no experience but the thought of it shakes me. I'm not sure I could be as strong as you are now, but you are taking the right approach by looking forward to the next step.

My hopes are with you and others here waiting for the the new combos.

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jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
Cinnamon Girl


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John, I`m so sorry to hear this, what a huge disappointment it must be for you.  Full marks for your determination though in going through another course of interferon based treatment, you should feel very proud of yourself for that.

Take it easy now for a while, nurture yourself physically and emotionally until the next and final round.

Sending all very best wishes, Jill

 



__________________

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.

 

 
Bills


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Sorry to hear the treatment failed Lynch 

I had my share I'm happy to you you want to move on . As you know the needle less cures are just about here. I'm on the bus with you Mugsy Hope to see you all at the bus stop

BS  



__________________

Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

JLynch30


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i WAS UNDETECTED FROM WEEK 4 TO 12.  5 weeks after I had labs and it was 8 million.  alt/ast sky hi.  Any maintenance suggestions while I wait?



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John   non-responder  

Undetected at week 2 on solvaldi/rib/interferon:  stayed through week 12 but virus came back as soon as I stopped.  on   Harvoni and ribravirin 24 weeks undetected after two. 8/2/15  12 week EOT  UNDETECTED!  SVR

1991-2015 RIP

 
Mugsy


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Disappointing news. I am so sorry. So now you're waiting for the "new treatment bus" with the rest of us. By Springtime, we will light this board up with SVR reports.



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62 y/o F     Genotype 1b  for 40+ years    cirrhosis    Started Harvoni  on 11/23  for 12 weeks       UND  12/22/2014     Ended treatment on Feb 15th.

12 week's EOT viral load      <15 
Zlikster


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:( sorry John, what happend exactly while you were on sov/rib/peg tx?

maybe Ledipasvir/Sovaldi combo will be one for ya?

Best



__________________

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


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Sorry to hear this John.

Next one will be no needles. Talking about herbalists I just got an e-mail from Lloyd Wright he says he misses me.



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
JLynch30


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Thank you all so much for the support.  I gave myself an hour of self pity and now I must move on.  I have to avoid my own mind telling me to look up every Chinese herbalist in los angeles.  Like Malcolm said (my mentor), give it a break.  there is a huge hep c meeting september 11th and my doctor will know then - October 10th is the next target date.  

 

I am going to pay out of pocket for fiboscan as my insurance does not cover it yet.  It is worth 350 to see what is going on.

 

Thanks again.



__________________

John   non-responder  

Undetected at week 2 on solvaldi/rib/interferon:  stayed through week 12 but virus came back as soon as I stopped.  on   Harvoni and ribravirin 24 weeks undetected after two. 8/2/15  12 week EOT  UNDETECTED!  SVR

1991-2015 RIP

 
TazKat


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Still here cheering for u!!! keep the faith. heart is sunk & this is only temporary. know that!!! ur friend  Taz



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
thepoet


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I know the feeling of a failed treatment. I have had it twice with the interferon and riba and when I had it, there were no new treatments available except the Incevik and my ins would not pay for it because it wasn't suggested for g4. The blessing is that there are new meds coming down the line soon and you will have another opportunity. Keep the faith brother!

Your sister in the fight.



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DJ...dx 2005...geno 4c...twice interferon/riba failure....completed 24 weeks Sovaldi & Riba on 10/18/14....SOT VL 600,000 after 16 days VL <43. Day 45 <43 again. Day 59...8 weeks UNDETECTED.

Happy and grateful to God for new life....
Fireman Rob


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John,

This is only a minor set back. Keep fighting the good fight. We're all here fighting with you.

-Rob



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Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
wmlj1960


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Sorry to hear this news John. I'm pretty new here and just started TX, 1st time. I'm scared to death of failing once. I can't imagine 5 fails. But as has already been posted, the 100% SVR - w/ no Inter. is just around the corner.

You are in my prayers.  



__________________

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

Mike

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Dee Dee


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This is really sad news John.. I know you must be heartbroken. Think of positive thoughts ... There will be a cure around the corner for you and all the relapsers...stay positive.

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G1a prior tx 2005 with peg & RIBA -quit due to bad side effects. Follow up visit showed it was back. Current tx Olysio/sovaldi 673,000 vl on 3/21/14. May 1st undetected vl. EOT 12 weeks undetected!
Caryn


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John, I am very sorry to hear this news as well.  I just hate hearing this. I'm keeping you in my thoughts and prayers!



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
Gator Man


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John, I of course concur with all the preceding comments about this setback. I believe we are tantalizingly close to a 100% "cure", but unfortunately as you can attest, not quite there yet. The good news is that the next DAAs are just weeks away, and you will no longer have to suffer with Interferon as Malcolm stated. Like Matt, Greg and others, your time will be here soon!

John 



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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
Groupergetter


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Sorry to hear this John.  Believe me I DO know some of what you are going thru.  As with you I'm on the wait and wonder?  Sometimes it is very difficult to understand.  Perhaps there is no understanding it?  Just hope we get another opportunity.  Be well sir.



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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.
hepcinbama


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hey jl sooooo sorry im on the same treatment an im testing negative for the hep c after 7 weeks but I have to continue then come back in 6 months an see if it came back .is that what happened toyou? an im very sorry for you I have been very sick an know what you are going through what is your geno? mine is 3



__________________

hep c geno 3     2,600,000 viral load   started 12 week tx of peg pen rib an solvaldi the wonder drug! first time being treated after living in Egypt for 6 years on a river called De-Nile!
Tig


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Hey John,

Sorry to hear your news as well. There have been a few others with similar results and it's never easy to hear those reports, I don't care who you are. Give yourself sometime to recoup and make plans for the final assault this fall or shortly thereafter. Hang in there 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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mallani


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Hi John,

I'm really sorry you had to go through that again. It's like a kick in the guts. No more Interferon for you.

You know the next time will work. Whether it takes 6 months or a year doesn't matter. Take it easy buddy.



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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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Some people just are not Interferon sensitive.  Usually they have a TT or CT IL28b allele.  And, Sovaldi needs a good second (or perhaps a third depending on the treatment and its duration).

I don't know why all docs don't check the IL28B before Interferon tx and really think about whether they want to continue putting people on the same tx over and over again.  Especially when there are other options so close.  



-- Edited by Isiscat2011 on Thursday 31st of July 2014 12:44:03 AM

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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.
hrsetrdr


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JLynch,

I am shocked to hear that the sovaldi/interferon/ribravin regimen failed , so sorry as you must be very disappointed. Hopefully one of the other new tx will do the job for you.

Tim

__________________

"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
Isiscat2011


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Well, I'm just going to say what we might all be thinking.   I'm afraid the real world Sovaldi isn't looking quite as promising as the hype at the moment.



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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.
Isiscat2011


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I'm so sorry, JLynch.  It is especially heartbreaking when someone has repeatedly given it their all.   I know you must be feeling so disappointed.  

This wait shouldn't be too long, though.  No more Interferon treatments for you.  All orals will get the job done and you really will SVR next time.  Stay strong, buddy.  



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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.
Matt Chris


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Hello JLynch

So sorry that you have yet to achieve your goal, I can understand the pain. Perhaps the new Gilead combo for 24 weeks might do the trick, its what I will be going for.

Depending on your liver condition there has got to be something that will work for you in the next couple of years.

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! 
JLynch30


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I have failed the 12 week sovaldi/interferon/ribravin.

 

The waiting begins....



__________________

John   non-responder  

Undetected at week 2 on solvaldi/rib/interferon:  stayed through week 12 but virus came back as soon as I stopped.  on   Harvoni and ribravirin 24 weeks undetected after two. 8/2/15  12 week EOT  UNDETECTED!  SVR

1991-2015 RIP

 
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