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Hep C Discussion Forum -> On Treatment -> Breakthrough - DAMN!
Post Info TOPIC: Breakthrough - DAMN!
globetrotter


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RE: Breakthrough - DAMN!
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Gracie

Well done for not giving in to the booze, fuel to the fire at the moment...I will update you with the sx's of triple that you don't have to endure any longer biggrin.

Riba rage on the bus today... sitting opposite me two 5 year olds spitting at each other and pulling hair while the mother of about 10 other snotty, unruly stinky kids was having an argument with her partner on her iPhone  at the top of her voice effing and blinding cos he was sh****ng the next door neighbour ...no shame whatsoever. Anyways thought I might have a word with her about Courtney and Chantelle spitting as I was getting more and more ragey inside etc until I saw the 'love and hate' homemade tattoo's on her hairy knuckles, dread to think what the neighbour looked like...husband ended up getting me off 3 stops early will take car next time!! confuse

A big hug your way



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Loopy Lisa


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Hi Gracie,

This rotten luck means the victory will taste even sweeter! I'm actually happy you don't have to do 34 weeks of interferon, this is really too much considering the new drugs on the horizen. If I didn't have other reasons I would have waited another year happily...

By time you completed and got over SX on this cure, you'd probably have finshed the new cure with small SX. So I am confident that this is actually the best thing for you and it is a good thing in a way. I hope you feel ok this evening..hugs x

 

 

 



__________________

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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Hi Gracie,

Glad to hear your ready to fight on! Down but never out Sister, keep your eye on the prize and it will be yours!

Heres a link to the Canadian Clinical Trials database:

Canadian Clinical Trials

 

Tig



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Tig

68yo 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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Rybronco


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Gracie,

So sorry to hear about your minor...and I mean minor, setback.

Please see this as a blessing in disguise.  Now you will get on a newer regimen and have none of the problems associated with the triple. You have inspired me through your fight and I am absolutely sure you will win this one!

 

 



__________________

49 yo. G1a prior tx 2005 with peginf and RIBA 12 weeks dc due to side effects. vl 7.8mm Current tx Sovaldi/Olysio 12 weeks started 2-21-2014,  UND at 4 weeks, EOT+12 SVR
Scruffy


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Well like every one else said better to find out now than at week 24 or 48. Just remember ( Scruffy points a finger at you) You might not be taking meds but your still in treatment. No drinking, No stress, healthy diet and try to stay well rested. Stay in training for the next round.



__________________

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!!!!
Gracie


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Tig56 wrote:

Hi Gracie,

I'm glad you avoided the wine tonight, good job! The SVR rates for Sovaldi lid and anything are high but I wouldn't try another Interferon combo again. You've been there and done that twice. It just isn't worth it with the new DAA's now. If you could do the off label with or without Riba I would consider it. If you can and are willing to wait another year or so, I would seek the Sov/Ledispavir combo. I don't know what Canada will do regarding Sov/Ledispavir when it's released, but it's going to be an improvement over the success we're seeing now. Can you possibly get into a study? You might be a hot commodity for the trial honchos right now. There may be some real interest in talking to you. It's worth investigating.

Tig

 Tig...how do you find out about clinical trials in Canada? Is there a website?



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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.
Gracie


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Thanks guys. It's still not real this morning. I'm sure when tonight comes and no apprehension about the shot, it will seem more real. I guess I'll keep busy, keep making plans, and keep reading about all the new peeps on here being retreated. I'll still be here as a cheerleader and researcher. This is my future after all, and I find out way more here than from my doctor and nurse.

So if you are being retreated after failing triple, drop me a note. Would love to hear some positive stories right now. Im thinking inteferon free is the way to go, especially with the affect it had on my ANC.

And your right M.O.M, I too was wondering what the point was of 36 weeks if I couldn't do the dose I required. And my doctor wouldn't give the rescue drugs. It was best to happen now so I didn't have to go through all those weeks and damage to my health caused by it.

It's a brand new day, not what I expected, but I'm alive, still relatively healthy, spring will arrive soon, and I've got several options for retreatment coming up over the next couple of years. I'll force myself to stay positive!

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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.
mindovermatter


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Hey Gracie,

You know what, you will be fine. You know, you would have had to continue on this treatment for 36 weeks more. 

With the newer treatment you would have to treat for only 12 weeks. With the all orals likely to be there in the near future you would be able to avoid Interferon and that is huge.

 

Remember just a couple of days back, when I had posted about having neutropenia, you had told me about your neutrophil counts.

I was actually wondering how would you have continued with interferon for 36 weeks more with neutrophil counts that low.

You will have access to all orals in a short time. And you will not experience too many side effects and you will be cured.

Trust me on that!



__________________

31 year old Indian

Starting viral load 2.3 million

Started treatment: 31/12/2013 with pegylated interferon and Ribavarin.

Fibroscan score : 5.3 kpa

GT : 3

EOT: 16th June 2014
AngieV123


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My heart goes out to you. I can imagine the frustration. It sucks. The only good things are that you found out kind of early on in tx and that there are great meds out there that will be ready for you the next round. Knowing that there is more promising treatments makes it easier to swallow, I hope. Though, nothing can take away the disappointment and anger right now. So sorry hun.

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Type 1a. Had HCV my entire life via blood transfusion. Did peg & riba in 2000, relapsed. Did triple tx with sovaldi in early 2014 & I am now undetected 
Barnacle


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So sorry to hear about this setback. I have a week before I start my Tx and I am nervous as hell. Now that new meds are here you have a very good chance of success in the near future. Hang in there.


__________________

57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!
Tig


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Hi Gracie,

I'm glad you avoided the wine tonight, good job! The SVR rates for Sovaldi lid and anything are high but I wouldn't try another Interferon combo again. You've been there and done that twice. It just isn't worth it with the new DAA's now. If you could do the off label with or without Riba I would consider it. If you can and are willing to wait another year or so, I would seek the Sov/Ledispavir combo. I don't know what Canada will do regarding Sov/Ledispavir when it's released, but it's going to be an improvement over the success we're seeing now. Can you possibly get into a study? You might be a hot commodity for the trial honchos right now. There may be some real interest in talking to you. It's worth investigating.

Tig



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Tig

68yo 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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Matt Chris


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Hey Gracie

It is a day of distress thats for sure, many of us have been there and can sympathize with the pain. It may bother you for a few days but remember your future has not been wrote yet. The future for HCV treatment has never ever been brighter within the next 2 two years their will be 4 or 5 very high percentage SVR treatments that will not include interferon. By the end of this year two of them will be avaiable for dosing.  

Gilead's Sovaldi is the biggest gun (and its a powerful one) and anything in combination with it will be successful. We have allready been surprized by Doctors prescribing off label treatments and the insurance companies mostly approving them so we can look forward to having some of the most effective combo of meds we have ever seen. Imagine Solvaldi and Mercks PI meds together it will be a power house.

Remember this statement -- Better Meds equals better Outcomes 

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! 
Gracie


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Well I managed to get through the night without having a glass of wine. I am still pretty upset, and of course wonder if I'll ever get rid of this. Guess I'll finally try one of those sleep aids as its probably the only way I'll sleep tonight. I'll start researching new treatments tomorrow but would love some thoughts on them. Should I wait for an inteferon free treatment? What are the statistics of non responders to triple getting SVR with the new sovaldi? What's new that looks promising for us?

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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.
TazKat


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RE: RELAPSED - DAMN!
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Gracie, been there done that.. I am  cirrhosising. got  a call from a pharmacy today about the sovaldi. getting info. yay.. they already had most of my info from the incivek. so waiting on bcbs to approve the sovaldi. so there is hope.. I have got to  keep the faith & I know YOU will. it is not the end. I cried & cried after my relapse, but u will be ok. I promise u!! 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..

 

 
Cinnamon Girl


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Oh Gracie, I`m really sorry to hear this, you must be so disappointed.  Cry tonight and get your frustration out...tomorrow is another day and you know this isn`t the end of the fight.  You gave it your best shot and did all you could, but this wasn`t the right treatment  The next one will be though and it will be a breeze compared to the 12 weeks of the incivek triple you`ve just done.

Give yourself a break from it all, let yourself recover and then you can start looking at your options. 

Take good care of yourself, and remember we`re here for you anytime.  Sending hugs xx



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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 Gracie,

Sorry to hear the news. You know it's only a temporary setback and that a new treatment will be available soon. You can afford to wait. 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
Scruffy


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Gracie I know your upset but even though you stopped treatment doesn't mean you stopped the fight. Don't drink that wine you can wait. Drinking that wine is just what the virus wants you to do. Have a glass when you SVR after your next round of tx. If you want, drink that wine  to victory not to your relapse.



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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!!!!
Tig


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Hi Gracie, 

I'm sorry to hear this as well. It just blows, hard. The upside of this is that you don't have 36 more weeks of Int/Riba. That would've been a difficult road and it seems apparent that this combination of drugs isn't effective. God knows you tried hard and did everything by the letter. As Sandy mentioned, it's the drugs that failed you, not something you did wrong. It doesn't help the shock and disappointment (anger) right now but it will. I just missed the time frame that ushered in Sovaldi and Olysio, and wished my doctor had mentioned these new DAA's were just around the corner.

I was fortunate and have remained undetectable post Tx, but I worried because the rates of success were far less than these new drugs are offering. If you had to relapse on your treatment, it would've been nice if it had happened weeks ago, but at least it's week 12, not week 24, 36 or 48. Now you know that Interferon isn't for you and found out relatively early in the big picture. Rest up and if you want, you can investigate the new Tx, but I really like the new combo of Sovaldi/Ledispavir coming soon. Since it's a single pill combo, there won't be all of this off label bickering going on that we're currently seeing. Whatever you choose, give yourself time to regroup and recharge. You will hopefully clear these last drugs quickly and will be feeling stronger soon. 

I don't encourage you to drink wine to ease the irritation, but if you do, make it a last small glass of the best. Toast to yourself and your brave assault on the beast! Then toast to the Dragon and it's upcoming demise...

Tig

 

PS: Best to avoid any boxes of potato flakes for awhile!



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Tig

68yo 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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Gracie


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Well, it does suck, and I'll allow myself tonight to cry, but tomorrow is a new day, and I am encouraged by all the UND with the new treatments, even from the relapsers. I am going to make an apt to see my doctor and tell him I want to be first in NB on them. And it's better to relapse now then after 36 more weeks of inteferon and RIBA I guess. I'm upset, but not defeated! And I may just go have a small glass of wine... (I hear the collective gasps coming from all of you, but damn it, tonight is an exception).

Tomorrow, I won't look back, I'll look ahead.....

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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.
OldenSlow


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So sorry, Gracie. And after all that effort.. ugh. If there's ever been a good time to relapse though, it's now. Your liver's in decent shape and you've got time. You're gonna LOVE the new meds. :)



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
JIme


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Hey Gracie, I had it happen to me after 8 weeks of Incivek. It is a bummer. But at least you tried.

And, your liver got a little break for a while. Rest up and stay as healthy as you can.

And get ready for the next round. Which will probably be the last round. That's the one that counts anyway.

Take care, Jim

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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

 

 

 

 

 
Loopy Lisa


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Oh Gracie, I'm sorry, I really feel for you, I hope you build up your strength fast and recover for round two. Hugs x



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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 
Scruffy


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Sorry to hear that Gracie. After 12 weeks of incivek your right it sucks big time. Keep your head up the newer tx's will probably have little to no sx's.

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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!!!!
ucbgal


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gracie,

my heart goes out of beat for you. you have worked so hard to slay the dragon and have openly shared your journey w/us all.

remember it's not you it's the meds.

please have a movie/pj week & treat yourself well.

sandy,ucbgal



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Gracie


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He says not to worry - I don't have cirrhosis and he will get me the new treatment within a year. But DAMN - it sucks. My VL was up to 100 at 12 weeks. Guess I'll just be here for the company now and not the complaining ...lol.



-- Edited by Gracie on Saturday 29th of March 2014 01:03:13 AM

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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.
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