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Post Info TOPIC: GT3 relapser


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Zlikster wrote:

thanks folks ;)

@Caryn, we can be relapse buddies until we get to be tx buddies again :) It's all in the mindest...we are full of latent virus particles, it's just hard (for me) to put HCV in the basket with other much less harmful "guests" i know i have (eg. EBV and CMV). I really wanna get rid of HCV, but not with destroying my hearing (or who knows what else) even more with interferon. I am lucky to have great hepa. She is fighting to get me some Sofosbuvir directly from Gilead. I do not have high hopes, but it's still nice from her to do that :) It's pretty sad to see her desperate to get her hands on newer meds for her cirrhotic GT1 patients. Vertex is asking for 80k KM (55k $) for Incivek for Bosnian market and i doubt our national health insurance will cover it at that price (average salary here is round 500$). I am getting more and more angry lately cause of this big pharma greedy politics. I am not (still i hope) in bad liver condition to be desperate, but i know there are really sick people @ hepatology clinic waiting for new meds. I am looking around the world for clinical trials, waiting for any response and i am willing to move anywhere to live for 3-6 months during trial cause i have calculated that it will be still cheaper to live for 6 months abroad than to pay 80k $ to Giled for 90-180pills of Sofosbuvir Still no luck in finding clinical trials...until then i have to pet my poor liver :)

best







 I am  a 3,,,, I will let you know, my eot is comming up. I was off the meds for 3 days on the 2ed to last week, other than that everything was right on target.  I hope you can retreat. 

/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

 

Tig


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Hi Zlikster,

I'm waiting as we speak for my EOT +12 results. Actually they are overdue in responding. I was told the bad winter weather here has delayed the results. I had the tests done in a different lab (VA) and I guess I'm to believe they sent my samples from Florida to somewhere in the northeast. That's seems unlikely, but I have to go with it, lol! Typical government intervention... Regardless, my nerves are twisted badly.

I hope you can get that fatigue under control soon. Keep your spirits up, I know how much you want to get this behind you. Soon...

Tig



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

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Since i heard horror biopsy stories from my hospital (punctured lungs), i don't even think about getting one (here) :)

Tig, nah man....without skiing, i have been sleepy. Well at least liver seems to be coping well with everyday viral replication in it ;)


Malcolm, i don't trust CAP measurement. Normal ultrasound shows moderate steatosis (3 different US checks), but this FS shows S0(-S1). I am not sure what probe it was to be honest. It was different compared to the one i had previous FibroScan check. My hepa did lots of measurements (highest was round 6 kPa i think, lowest round 4 kPa). She said sampling of the liver was taken from the depth of 4cm and how this is in some cases better than biopsy.

That doesn't sounds that bad what Toshiba is doing no or is it pushing sonographers with having too much burden on liver prognosis?

strange, now i see Echosens webpage that they have it's own "FibroTest" algo blood check called FibroMeter?

how are you 2 guys doing?

Malcolm, hows your liver? :)
Tig, still waiting for EOT24w SVR? when is it due?

all the 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!




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Hi Zlikster,

Yeah, the Echosens 502 is pretty easy to use. My doc's practice has one, but they don't believe the CAP measurements. The XL probe is so much better than the old one.

Toshiba have incorporated Fibroscan in their new Diagnostic Ultrasound range. The sonographers are not happy, as they now have to incorporate a Fibroscan result, while doing a routine liver Ultrasound.

Stay patient, buddy. Something will turn up. 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

Tig


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Hey Zlik,

Cool info Brother! I'm glad that you've got minimal fibrosis and access to that Fibroscan. Much easier than those pesky biopsies, lol! What have you been doing lately? Climbing mountains and entering ski competitions might be causing you that fatigue, lol! Hang in there my friend, good to talk to you again!

Tig



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

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wow new FibroScan @ hospital is pretty cool! Echosence 502 touch model...

I am still F0-F1 (4.7 kPa) and S0-S1. My hepa told me that even after unsuccsessful tx, fibrosis can regres a bit and after succsessful/SVR tx usually it can drop 2 stages. So i guess i still got time to get to F2 and recover to F0 :) I am gonna do FibroTest to confirm these numbers in 2 weeks time.

Been lately really tired, not sure is it HCV related :/

cheers



__________________

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!




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thanks folks ;)

@Caryn, we can be relapse buddies until we get to be tx buddies again :) It's all in the mindest...we are full of latent virus particles, it's just hard (for me) to put HCV in the basket with other much less harmful "guests" i know i have (eg. EBV and CMV). I really wanna get rid of HCV, but not with destroying my hearing (or who knows what else) even more with interferon. I am lucky to have great hepa. She is fighting to get me some Sofosbuvir directly from Gilead. I do not have high hopes, but it's still nice from her to do that :) It's pretty sad to see her desperate to get her hands on newer meds for her cirrhotic GT1 patients. Vertex is asking for 80k KM (55k $) for Incivek for Bosnian market and i doubt our national health insurance will cover it at that price (average salary here is round 500$). I am getting more and more angry lately cause of this big pharma greedy politics. I am not (still i hope) in bad liver condition to be desperate, but i know there are really sick people @ hepatology clinic waiting for new meds. I am looking around the world for clinical trials, waiting for any response and i am willing to move anywhere to live for 3-6 months during trial cause i have calculated that it will be still cheaper to live for 6 months abroad than to pay 80k $ to Giled for 90-180pills of Sofosbuvir Still no luck in finding clinical trials...until then i have to pet my poor liver :)

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!




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Hey Z,

I know how you feel. The first thing that I wanted to do once I realized the treatment didn't work for me is to find my next option, and FAST. I had made the commitment to treat so I was not ready to end the fight!  I found some trials that were a few hours away from me and emailed the trial coordinators, but the trials were closed. I told my doctor about the trial and he said that some will not take recently failed patients because of a wash out period. Just an FYI!  There are not any trials in my city that would even work for me right now. Everything is for treatment naive, which counts me out! I am just waiting until my Dr.s  appt. at the end of the year to see what he thinks I should do at this point. From what I am seeing, I am not sure I am willing to take the chance with just sofosbuvir and interferon like previously discussed by my nurse, but I also don't have any details from him. 

Hang in there!! I can honestly say I know how you feel. Who knows, maybe we will be starting on the same day again!!



__________________

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!



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Hi Zilkster, just wanted to let you know I'm thinking of ya smile ...You fought well. Next round will come, when it is ready for you.

"The treatment failed YOU and not any other way around.".... good words Dillo

Many blessings, 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 naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

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



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Really sorry to hear about you Zilk.  The treatment failed YOU and not any other way around. Hopefully You'll get a chance at a better treatment soon. Hang in there buddy.



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GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.



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I am thinking about it, depends this month if they give Gilead the go ahead in the States, this will indicate the future for Europe. If its not available I will do the horrible trial, but my poor husband would have to do the injection.

I had a tetnus shot a couple of weeks ago. The nurse had no gloves on, was happy to just show me the needle. I told her off for not checking my records, wearing no gloves and showing me the damn needle, I start shaking like a baby, pathetic!

I think my husband will have to bribe me with chocolate every Saturday lol ;)

 

 



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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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Cheers :)

tnx Lisa for invite. I got friends in .nl and in USA, so thats not an issue for me, but burocracy is more a of problem (rezidence, citizenship,etc). As i heard Interferon Lambda is much easier on sx? There is one BMS trial with Int Lambda + Riba + Daclatasvir? And i saw it's available in .nl, maybe you should try it?



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!


KLG


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Oh Zlikster, I am so so sorry it didn't work out. I hope the next round goes a little smoother for you.

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Geno 3a, stage 3, IL28 cc, diagnosed 94, interferon 1year, relapsed immediately, started RIBA/int on 2/1/13, 4 wk und. Female, age 55, EOT 7/18/13. 4 weeks UND, 12 weeks UND, 6 months UND!!!



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Hi Zlikster,

I feel so bad for you. What a terribe, terrible time you had and to have this! Don't worry about your viral count, I have 1 million and I am ok. I too am a little worried about how many 3s relapse.

I have searched trials, I can do here Lamba but is still a interferon based therapy, I can't face injecting myself I would be in a state every Saturday.

If any trial comes up in the Netherlands, you are welcome to stay in our home if it helps.

GT3 totally sucks!

 

 



__________________

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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thanks guys n girls :) but as i/u know me, i can't sit on my hands and do waiting game...gotta work on plan how to evict liver occupier :)

i am so jelaous when i see all those clinical trials i could participate in :/

this trial from Gilead would be perfect for me...maybe i should move to NYC for 6 months if they would accept me as a foreigner?

http://clinicaltrials.gov/ct2/show/study/NCT01909804

or this one:

http://clinicaltrials.gov/ct2/show/NCT01826981

BMS replied, Gilead nothing yet :/ can't find Merck clinical trials contact email.

only trial from BMS that would suit me would be with interferon lambda+Riba+Daclatasvir:

http://clinicaltrials.gov/ct2/show/NCT01616524

anyone on these trials?

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!




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Sorry to hear about your relapse, Your youth and liver stage is on your side and I hope time will improve your chances to cure.  Eat well and enjoy what you can ,while you can and follow what ever your dreams lead you to. Best of luck. Cheers.



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Don't sweat the small stuff, it will only give you hair loss.



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Hey Zilkster - I am so sorry to hear this.  You had such a rough time!  Ughhh!!! Stay strong, something will come your way!



-- Edited by Caryn on Wednesday 23rd of October 2013 01:54:25 PM

__________________

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!



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Thanks for info!

I might be perpared better with Neupogena next round of Interferon, if i decide so...but as i said, i would gladly be on any clinical trial from Gilead, Merck or BMS if they would accept me (i got Croatia/EU and Bosnia citizenship). I am prepared to travel or live in the country where clinical trial is held. Relative close country locations to me are: Italy, Hungary, Austria, Slovenia, Switzerland, Germany.

I know i had bad time with interferon regarding Neu counts and aural side fx, but then again i responded well too? 51 IU/ml @ 4w, UND @ 8w that was a solid result, no? My hepa hoped that Ribavirin would be more toxic (Hgb,RBC) since she had some experience with better SVR results in people with higher riba toxicity during tx. She mentioned that quite few times during therapy.

Why is viral load so high during relapse than pre tx? I do not understand kinetic/dynamics of viral activity very well. But being @ 123k IU/ml now compared to 22-25k pre tx makes me wonder is now virus in full force munching my hepatocytes confuse

i am gonna write few emails to Gilead and BMS, can't find any contact for Merck tho, offering myself to their clinical trials. Hope someone will respond :)

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!




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Hi Zlikster,

Buddy, IMHO, Interferon is not for you. The bone marrow depression is too much, judging by your Neutrophils during the last Rx.  Try looking around at the new Merck drugs.  Phase 3 Trials should begin fairly soon, and should be worldwide if Merck is to make up lost ground. They are said to be pan-genotype but we know more in a few weeks. My doc has a bunch of Geno 3's that have relapsed, and he doesn't even offer a second try of Peg/Riba. With the lack of any chance of access to the new DAA's here for 5 years, and with many of them being cirrhotic, it must be depressing. You have youth and a good liver on your side. 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



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Zlikster wrote:

 I am also considering moving to some country for 3 months just for a clinical trial.


 Hi,

Generally not the worst idea, but I know, that in germany only persons with a german passport are allowed by law to participate in a study.

The chief hepatologist, whose waiting room is full of not german speaking patients let me know this.

So if you intend to realize your idea first you have to inform in which country this would be allowed.

 

good luck



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cheers folks! ;)

i am not that depressed (much). Just went to see my hepa and she said after EOT+24w PCR i can opt in for another 6 months round of Peg+Riba. She is also going to some seminar that Gilead is organising in Croatia and she will ask em any chance there will be some clinical trials in Bosnia (doubt it). I would be first in line to test Gileads DAA combos here ;) Other option on my mind is, wait for new DAAs to get approved in USA, gather/loan 50-100k $ (not an easy task over here) and buy em and get on therapy Riba with DAA with my hepa controlling it. I am also considering moving to some country for 3 months just for a clinical trial.

Again big decision is in front of me, repeat "jolly good fun fun" times with interferon or continue with waiting game?

what do you think?

seems GT3 is indeed the new GT1 :/



__________________

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!




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Hello Zlikster

i was disappointed to hear of your relapse, it can be very depressing I know but their is a lot more living for you to do and a lot better treatments to come. 

You might be thinking why and how did this happen, sometimes we can put our finger on it and sometimes we just have to move on. The point is try to keep active and don't leave yourself thinking about it all the time. Its ok to examine but don't get obsessed, try to keep your good healthy habits and before you know it you will be on the new Tx and cured.

waiting with you.

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! 



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Very sorry Zlikster, your a great contributor to this forum and have helped many of us.

Keep your chin up and you will beat this sooner or later. ~Bob 



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~



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Oh Zlikster, I`m shocked to hear this news, and don`t have words to say how very sorry I am.  We know your treatment journey wasn`t at all easy, and you certainly gave it your very best shot. 

Take good care of yourself until the next time, and many thanks for all the helpful support you`ve given to other members along the way, as well as your lovely sense of humour. 

Do keep in touch, you`re always welcome here!  Sending hugs and all good wishes your way.



__________________

Jill 

(70 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.

 

 



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Zlikster buddy,

For once I am speechless. So sorry to hear the news, after all your problems. I guess nothing can be taken for granted and I did worry about the dose reductions. As a young F0-1, you've got plenty of time.

Take it easy mate, and be patient. Your time will come. Go skiing and forget HepC for a while. We'll be here when you go again.



__________________

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

HR


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I am very sorry to hear this. Keep up the great attitude. Your day is coming.



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14



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Hi Zlikster, I'm so sorry, you had a terrible time during your therapy and now this result.

with best wishes



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Got my PCR today, 132k IU/ml.  Knew something was wrong when i saw high ALT numbers. So i am now off to diet and ultrahealthy life until new DAAs that work on GT3 arrive.

all the best to all folks still fighting, waiting or SVR relaxing  :)





__________________

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!


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