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Hep C Discussion Forum -> Post Treatment -> It's back...
Post Info TOPIC: It's back...
Bills


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RE: It's back...
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Hi Brian,

I remember you as well, and remember how much you gave. There are quite a few us just on this thread who have had to to deal with this disappointment. we have a little club of our own. This form has given me the strength to accept these setbacks. Not that it was easy. The good news new stuff is getting out there. I sometime get very anxious and want to get right back out there fighting. but I set back and think I don't ever want to hear this bad news again. Our livers did get a break, I'm trying to stay still and let my body heal from the damage the drugs may have done. I do get strength to carry on from everyone here relapsed or SVR we are in good company.  I rather really know the ODDs before my next TX  than waist time being a lab rat again. Our day is coming we've been through the worst. Hopefully when we do the treatments we won't even feel like we on treatment. I'm pretty sure we will all be in round 2-3 or 4  but this will be the last. we'll be in it together.

Bill s 

Ps  nice to see you Joanneh you look well thanks for stopping in 

       



__________________

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.

Shep


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Oh Brian--so sorry to hear your news. Keep the faith--I hear the newest meds are better with less sides! Everyone is pulling for you!


__________________

Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
joe oil


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Brian,I rarely post to the forum but still  read the posts weekly because this forum helped me a lot  and I will never forget that. It is all a lot of us TX have. I am so sorry to hear this from anybody, I know what you went through. You are definitely a  warrior. If you endured the dreadful Incevik, the next TX will be a cake walk. Stay strong, Peacepeace.gif



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58yr m/G 1A/ VL 9,000,000 / F 3  / STARTED TRIPPLE TX (Incivek)7-14-12 / UND WK-4-8-12-16-20-24-36- 48- 12 weeks post tx UND. SVR 1-10-14
LaBajista


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So sorry to hear that, but glad you're ready to keep on fighting.  Be well.



__________________

genotype 2, initial vl 69,000 -- Pegasys/Ribavirin started 10/5/12 UND since week 1
dustbear


Senior Member

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My heart goes out to you after reading the news.

Keep your chin up and look to the sun each morning to brighten your day.



__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
Iris Dragonfly


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Hi Brian, am sending you a >>>hug<<<

BB, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naďve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
gatekeep


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Just wording on people's thoughts on the resent released drugs for new Tx. Seems like they change the names as they are morphed? Who's in the lead ? And what's the promise for the near future? Your input would greatly help me get back in the game I admit I tried to put all this behind me after a few moths SVR. 

Thanks. Brian 



__________________

25 yrs HepC. type 1a geno. 6mill viral load,3.5 out of a 4 liver biop.started Sept.19, 2012,Tx.Rib.,Incivek, Peg,4wk. Vl 61,undetected @12 wks,undetec.Wk 24
dragonfly


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Sorry to hear this; I know how it feels but new things are just around the corner.  Hang on in there.

Dragonfly xxx



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Greg


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Hi Brian,

So sorry to hear the news, But I know you will pick yourself up, dust yourself off and give it another go. You have given your liver a real boost and your will to fight this dragon is an inspiration to us all. Especially to those of us who have to face this beast again, you're not alone and we are with you all the way. Remember in this fight you can hit below the belt. Give him one for all of us mate!

All the very best,

Greg



-- Edited by Greg on Wednesday 29th of January 2014 09:44:18 AM

__________________

The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
hepcat60


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Wow I am so sorry to hear the bad news.  It must be devastating.  I am preparing myself for the possibility, as I am one month post treatment.  Your resolve is inspiring.  I hope I can be as determined if I get the same news.  BTW, my guitar playing vastly improved during the past year due to all of the time at home during treatment.  ,



__________________

Hep C 1a since probably 1981.  Incivek, riba and interferon-48 weeks.  UND at weeks 2-4-6-8-10-12-16-20-24.  Previously Interferon alone for 6 months non-responder.  SVR 48 weeks 12/11/14
gatekeep


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I've known since they first started testing around 35 years ago I had Hep. The doctors  at the time told me that this is a $ desease and there would be a cure in the future And the longer I can wait the better the cure will be. At the time the AIDS drugs were coming around and the hep c cure rate was around 25%. I've watched and waited along with my doctors for as long as I could then dove into what became my personnel Hell With the trip.Tx. Well here I am now waiting for approval of that $1000 a pill treatment that has a 90% success rate that I hope will finally put a end to this thing that has been in the back of my mind since first diagnost.

Im going to Tuffs Hospitol Boston the 12th. They are involved in largest successes and failure Study's In regards to new liver Tx. We have excellent health care around here but IMO once you go to Boston it's " GAME ON". 

Thanks for all your support ...Brian 

 



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25 yrs HepC. type 1a geno. 6mill viral load,3.5 out of a 4 liver biop.started Sept.19, 2012,Tx.Rib.,Incivek, Peg,4wk. Vl 61,undetected @12 wks,undetec.Wk 24
Gracie


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Same as Joanne, I waited years for retreatment. Lucky there are so many upcoming options and shorter durations and less side effects. This beast won't be with you for much longer.

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  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.
JoAnneh


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Heart breaking! Love your attitude to keep
Up the fight. I remember how you suffered.
My prayer is God will lead you to the right treatment.
It was 10 years before there was an option
After my 1st tx failed.
Keep fighting to beat Hep C.
This forum is a great ministry that's why I continue
To stay in touch. I am glad you have your talent
To play music as that's such a wonderful escape
From our worries. Hang in there Brian!

__________________

JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
DeRanger


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From someone who just went thru the 48 weeks, you folks who lost a round or two with tx but are coming back for the next one inspire me. Your attitudes that you will go after it until you beat it will be in my heart as I go through the 6 month wait for SVR.  My 3 month test is next in Feb, but now I know that my own determination to beat this is strengthened by yours.  Thank you for your willingness to share your disappointment and your resolve.  We will beat this.



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1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
hrsetrdr


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Hi Brian,

You fought hard and brave man,  you'rve got a lot of blood, sweat & tears invested in this, I can tell that you're more determined than ever  to continue the battle to a sucessful conclusion.    Best of luck for the future, we'll be here to see you kick the dragon a good one! 



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"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

 

 
Alaska Fred


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Hey Brian, I've been thinking about you all day. My heart goes out to you and I'm sorry for all you went through. When my treatment failed the disappointment consumed me for awhile too! However the new DAA'S are a game breaker and our time is coming!! Keep the Faith

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Fred lambert
Bloomster


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Sincerely sorry to hear that the virus is back. 

Good to hear that you are finding out what new options are available for you - I'm sure you will get a win in the future.  All the best.  Caroline



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My husband had genotype 1a, 46yo, started triple therapy (peg/rib/vic) 23rd July 2012, VL prior to treatment 14 million, UNDET 12, 24 weeks, EOT 24th June 2013, EOT +1.5 weeks UNDET, EOT +12 weeks & EOT +27 weeks UNDET; SVR January 2014
gatekeep


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Thanks for the kind words everyone. It was a shock after being svr for so long. Anything will be better the Telaparvar. First 12 wks were shear Hell the blood clot was 4 wks of even more pain. And to top it off the burning rash the last two weeks of the 48 wk treatment almost killed me they said. SO BRING IT !

__________________

25 yrs HepC. type 1a geno. 6mill viral load,3.5 out of a 4 liver biop.started Sept.19, 2012,Tx.Rib.,Incivek, Peg,4wk. Vl 61,undetected @12 wks,undetec.Wk 24
JIme


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Hang in there brother. Something else is waiting down the road for you. Stay as healthy as you can and get ready for the next round.

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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

 

 

 

 

 
tonib


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I am so sorry for this.  I went through 12 weeks of hell before I found out I was unresponsive, and it hurt so bad, I can't imagine how much it must have hurt for you.

 

Hopefully you will have better luck with a trial than I have this is pretty much the standard for me:

Phase II HELIX-2 Trial  Thank you for your interest in this study. Unfortunately, at the present time, the study has been oversubscribed and we are not seeking new patients for participation.

Best regards,

 

John Z. Sullivan-Bólyai, MD, MPH

Vice President, Clinical Research

Idenix Pharmaceuticals, Inc.

 

please keep us posted if you get any trial information or acceptance.  Fingers crossed for us all!



__________________

 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
Caryn


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Hang in their Brian!! my viral load never went und and creeped back up at week 8. I was on the minute with my meds and did everything I was supposed to do. Don't even try it figure it out, I did and couldn't come up with anything! :)  It is disheartening, but we all have great options ahead!! Going in two weeks to my dr to discuss treatment options. 



-- Edited by Caryn on Tuesday 28th of January 2014 03:54:02 AM

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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!
mallani


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Hi Brian,

Really sorry to hear the news. You did your best and you'll get there next time. At least you're in the USA where there will be options. Peg. obviously doesn't work for you, so go for the all orals.

 



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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
ucbgal


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brian,

i feel for you buddy....be kind to yourself & treat yourself well prior to starting a new regimen

be comforted in knowing it was the meds not you!!!! also at least the new stuff has less sx & shorter time frame.

sandy,ucbgal



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newmex


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Brian and Zlickster,

Sorry to hear that about you both, Hang in there, seems like with all the new meds coming out, the new treatments will be way more effective and sx wont be much worse than a round of antibiotics. Best of luck to you both,



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John
Zlikster


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Hi Brian,

don't worry man, at least new rounds could be without Interferon (and even riba) after the hell you have gone thru, next round will be kids game ;) I was wrecking my head what went wrong (i have relapsed too), but it's just not worth it. We will get rid of livermuncher soon one way or another! :)

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!
Matt Chris


Guru

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Hey Brian

I'm very sorry to read the news. I know it can be hard to move on from all the time and effort that you put into the treatment but that is exactly what you will have to do.

With all the great new options coming out for treatment you, me and many other relapsers will have much better, shorter and more powerful HCV vanquishers now and in the coming months.

Its really only a matter of months until you decide what are your best choices and beat the dragon for good.

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! 
Cinnamon Girl


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So sorry to hear this, Brian, what very disappointing news.  It must have come as a dreadful shock to you, so take some time to come to terms with it and lick your wounds while you get ready for the next round. 

As Tig said, you`ve given your liver a very worth while rest, so it wasn`t for nothing that you went through this treatment, and you`ve proved just how strong and determined you are.

You gave it your best shot, and you`ll beat this virus in the end with the amazing new drug combos that are coming along.

Take good care of yourself and do keep in touch, we`ll still be here!  ~ 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.

 

 
Tig


Admin

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Hi Brian,

I'm sorry dude. It's hard to hear these reports and know what to say. You did everything you possibly could and yet the Dragon survived. If I know anything, it's that you did your part and did it well. The virus was stronger than the medication, this time. The new drugs are better, more effective and thankfully cause fewer side effects over a shorter course of treatment. You didn't go through it for nothing, it has been documented that your liver benefits from the treatment, regardless of relapse. 

Get rested, get ready and plan to fight it again! Good luck and keep us in the loop. You know we're here if you need us!

Tig



__________________

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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gatekeep


Senior Member

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I did everthing by the book,and went though hell and back. Just got my 5 month results and I have a recurrence. no

Off to Boston soon to get latest on new treatment.

 



__________________

25 yrs HepC. type 1a geno. 6mill viral load,3.5 out of a 4 liver biop.started Sept.19, 2012,Tx.Rib.,Incivek, Peg,4wk. Vl 61,undetected @12 wks,undetec.Wk 24
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