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Author Topic: relapse after 1 year  (Read 79022 times)

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Offline Patty

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  • Posts: 25
Re: relapse after 1 year
« Reply #100 on: July 13, 2016, 06:39:42 pm »
Patty, just to correct the record, HCV is NOT a slow moving virus; its a very rapidly replicating virus, which means that being undetected in two subsequent blood test is a pretty good indication that the virus is not vital and will cause no problems down the road..   In order to survive, this virus must replicate, and it does so rapidly.  It doesnt hang out in small numbers waiting to attack.. Just doesnt work that way.

What's slow is usually the progression  of liver disease which results from the virus...

Hope I cleared this up for you.


Dragonslayer

Dragonslayer,
 You are correct, I miss quoted. Thank you for clearing that up. Virus is fast moving, the damage is slow moving.
Patty
Geno type 1a
Fibrosis stage 4 severe
Infected by a patient I worked on 2003
Went thru Interferon combo for almost a yr in 2004 was taken off because hemmorage behind my eye
Harvoni 12 week treatment startered 4-14-2016
1 yr later Hep-C undetected

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: relapse after 1 year
« Reply #101 on: July 13, 2016, 06:54:00 pm »
Hi Patty,

Glad to hear you are feeling better. And in other good news, the Dr and Hep C Nurse's I have been in contact with have many patients that have been cured for several years. First, some have cleared the virus on their own, then others from Peg/Riba (small number) and more recently last two years DAA's like Harvoni.

Those professionals (and new data) specifically state there is a cure.
I'm told that 24 weeks SVR is the gold standard and at my GI's office there is no record of relapse after 36 weeks (non compliant patient) going back 2+ decades. 
Clear the virus for a year and safe to say your immune system, along with help from the drugs, = HCV cured. YES!
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Patty

  • Member
  • Posts: 25
Re: relapse after 1 year
« Reply #102 on: July 13, 2016, 07:30:57 pm »
I fightis thetitis,

Congrats, on being cured !! I'm sorry I can't say I feel better just yet. In fact I feel worst than I did when I started, but I keep hoping I wake up tomr feeling better. The Professionals at Tampa General transplant and Heptology center told me, we hope we can help, but your a tricky case, because you have no immune system. So we are not all the same and we can not all expect the same results, but here's to trying !! YES !
Geno type 1a
Fibrosis stage 4 severe
Infected by a patient I worked on 2003
Went thru Interferon combo for almost a yr in 2004 was taken off because hemmorage behind my eye
Harvoni 12 week treatment startered 4-14-2016
1 yr later Hep-C undetected

Offline Lynn K

  • Global Moderator
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  • Get tested, get treated, get cured, fight Hep c!
Re: relapse after 1 year
« Reply #103 on: July 14, 2016, 02:28:28 am »
Hi Patty

Below detectable means ther may or there may not be some virus remaining lower than the tests ability to detect that is why we have to wait 12 weeks post treatment to be declared cured. In those 12 weeks if there was a very small amount of virus remaining it is possible the virus could come roaring back and v eat pre treatment levels in that sort period of time. If it is not back in 12 weeks the idea is it likely (99.8%) it won't be coming back.

The experts do believe that if we make it to SVR 12 and better yet SVR 24 and beyond that in fact we are cured and we do not have the hep c virus in our bodies. That the virus truly is 100% gone.

Virus populations grow exponentially so if there was any virus it would very quickly repopulate.



Awesome news congrats Audrey!!!! I think i would be looking to find that lab tech and give them a piece of my mind but I don't have a lot of mind to spare lol!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline AussieRosa

  • Member
  • Posts: 226
Re: relapse after 1 year
« Reply #104 on: July 14, 2016, 12:12:18 pm »
Congratulations, Audrey. Some great news at last.
Gt 1a
contracted 1983
Fibroscan 6.1
Treatment naive
VL 2.97M
ALT 38
AST 47
Started Viekira Pak + Ribavirin Tues 19th Jan 2016
Week 4: VL Undetected!
March 5th Ribavirin dose reduction to 800mg from 1000mg
EOT April 11th 2016. VL Not Detected
12 Weeks post EOT: SVR12. Cured with a capital C!!
6 months post EOT: Undetected :-)

Offline audreywald

  • Member
  • Posts: 33
Re: relapse after 1 year
« Reply #105 on: July 24, 2016, 02:49:05 pm »
I need you guys opinion very much. I contacted an attorney about my "lab results" that showed the virus had come back, and then waited for new lab results after they decided to take a new viral load. My best friend said this is bad karma, I think it is just and fair. A carrot was dangled in my face and it said "you're well." 6 months later the carrot was taken back that said, oops, some error, you're not well." At my age it was like death sentence cancelled, death sentence reinstated, death sentence cancelled again. Is it wrong to hold people accountable who you are trusting to tell you by their expertise if you are cured or not of a life threatening disease.

Plus, the lawyer won't take it if he thinks there is no chance of winning. Because no money up front is required.

And I was scared to death, my h8usband too, and I needlessly scared so many of you.

So please, opinions needed.

Ty - love you all, Audrey

Offline AllShookUp

  • Member
  • Posts: 30
  • "itching like a man on a fuzzy tree" - Not anymore
Re: relapse after 1 year
« Reply #106 on: July 24, 2016, 04:16:15 pm »
IMO, I think your friend is right. Just let it go. Be happy that you that you got rid the of virus.
The lawyer is dangling a carrot. Bringing in a lawyer is just going to cause you anxiety. Lawyer will get lion's share of settlement in the unlikely event that he/she wins.
Male - BabyBoomer
1995 - diagnosed HCV
2002 - Peg + Riba - quit after 5 weeks severe anemia
2015 Nov -start 12 weeks Harvoni +Riba + Procrit
Gen 1b - VL 1,500,000 -ALT93-AST143
Comp cirrhosis - enlarged spleen - platelets 35
Week 5 of Tx - HCV undetected - ALT/AST normal
End Week 12 of Tx - HCV UD - ALT/AST normal
Jan. 25, 2016 EOT
April 4, 2016 - SVR10 UD - ALT/AST normal
May 5, 2016 - SVR14 UD - ALT/AST normal
Aug 5, 2016 - SVR28 UD - ALT/AST normal

Offline FutureThinker

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  • Posts: 711
  • Onward and upward!
Re: relapse after 1 year
« Reply #107 on: July 24, 2016, 04:58:22 pm »
Hey Audrey, I understand your wanting to do something about this; it scared you and your family to death, and also all of us who read about it!

Before going to an attorney, perhaps reviewing this lab's policies on complaints, errors, etc. would be helpful. You can probably find it on their website somewhere; if not,  by contacting the lab's manager.  And maybe instead of filing a lawsuit, file a formal complaint with the company.  They must have a process for complaints and that may be the way you can obtain some satisfaction in this wrong.  This lab obviously needs to review their procedures, at the very least, if not also reprimand the lab tech.

I had a lab order once for general annual bloodwork in which the tech failed to get all the ordered tests. This was a fasting draw, so I wasn't too happy! I contacted the manager to formally complain, and they readily agreed to another draw at no charge (of course) and were very apologetic for the error.  And, I have to say I never saw that tech in that lab again...... I made it very clear I would never let her perform my labs again. I knew I'd be using this lab in the future due to my hepatologist's office preferring them, so this was the route I took.

Hope this helps, and again, we are all so very happy this was an error!! FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Mike716

  • Member
  • Posts: 15
  • Here's looking at you. . .
Re: relapse after 1 year
« Reply #108 on: July 30, 2016, 04:45:05 am »
I would not be surprised if you went from stage 3 to stage 2 or 1 (I went from nearly a 3 to a 0 when I relapsed from PEG+RBV)

The editorial commentary that dragonslayer posted a link to (http://jid.oxfordjournals.org/content/early/2013/11/14/infdis.jit543.full.pdf) says:

"It is likely that we will be able to cure
almost all patients with HCV infection
within the next 3 years, but we might
only heal the livers in some of them. A
recent long-term analysis found that only
about 50% of cirrhotic patients experi-
enced a reversal of cirrhosis after achiev-
ing SVR, while a significant number of
patients achieving SVR in the absence of
cirrhosis still progressed to cirrhosis
despite being cured of HCV infection.(20)

20. Poynard T, Moussalli J, Munteanu M, et al.
Slow regression of liver fibrosis presumed by
repeated biomarkers after virological cure in
patients with chronic hepatitis C. J Hepatol
2013; 59:675–83."

Are you certain that your fibrosis reverted after Tx to an earlier stage? This goes against most available data. What tests were used? Were they truly comparable, especially over time?

M.
Diag. 2008: HCV geno 1a
Biopsy 2008: F1-F2
Fibroscan 2012: F2-F3
Fibrotest 2015: F4 (& AST 150)
Tx 2015: Sovaldi+Olysio, 12 wks.
EOT+3mos. VL: UND
EOT+15 mos. VL: UND

Offline Mike716

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  • Posts: 15
  • Here's looking at you. . .
Re: relapse after 1 year
« Reply #109 on: July 30, 2016, 04:51:50 am »
HCV is NOT a slow moving virus; its a very rapidly replicating virus, which means that being undetected in two subsequent blood test is a pretty good indication that the virus is not vital and will cause no problems down the road..   In order to survive, this virus must replicate, and it does so rapidly.  It doesnt hang out in small numbers waiting to attack.. Just doesnt work that way.

The editorial commentary that you posted a link to (http://jid.oxfordjournals.org/content/early/2013/11/14/infdis.jit543.full.pdf) says:

"An antiviral might lead to a sub-
stantial fitness cost to a virus, which
means that only very unfit virus might be
able to resist elimination, which in turn
requires the mutated or selected unfit
virus to revert to higher replicative capac-
ity, which might take several months or
years."

and

"harbored virus might have an intrinsically low
replicative activity, making it less vulnerable
to antiviral pharmaceuticals."

Is the author wrong?

M.
Diag. 2008: HCV geno 1a
Biopsy 2008: F1-F2
Fibroscan 2012: F2-F3
Fibrotest 2015: F4 (& AST 150)
Tx 2015: Sovaldi+Olysio, 12 wks.
EOT+3mos. VL: UND
EOT+15 mos. VL: UND

Offline dragonslayer

  • Member
  • Posts: 873
Re: relapse after 1 year
« Reply #110 on: July 30, 2016, 09:06:05 am »
The editorial commentary that you posted a link to (http://jid.oxfordjournals.org/content/early/2013/11/14/infdis.jit543.full.pdf) says:

"An antiviral might lead to a sub-
stantial fitness cost to a virus, which
means that only very unfit virus might be
able to resist elimination, which in turn
requires the mutated or selected unfit
virus to revert to higher replicative capac-
ity, which might take several months or
years."

and

"harbored virus might have an intrinsically low
replicative activity, making it less vulnerable
to antiviral pharmaceuticals."

Is the author wrong?

and:

" A recent long-term analysis found that only
about 50% of cirrhotic patients experi-
enced a reversal of cirrhosis after achiev-
ing SVR, while a significant number of
patients achieving SVR in the absence of
cirrhosis still progressed to cirrhosis
despite being cured of HCV infection."



M.

No, Im not saying the author is wrong, but insofar as this could be an explanation for delayed relapse, it happens in an extraordinarily small number of people.  In addition, the article was published in 11/13, a full year before Harvoni was approved, and before other contemporary DAAs were in wide circulation and, even so, it was offered as a hypothesis only.  Words like 'might' fill the text.  The landscape is changing fast, and I wouldnt cling too hard to any one explanation for unusual phenomena at this point.

As for the quote regarding cirrhosis, this was very troubling to me when I first read it.  The idea that a non cirrhotic liver will still  progress to cirrhosis post SVR in a 'significant'  number of cases sounded beyond fatalistic and more than a little depressing.  I dont have enough specific knowledge to comment on this, but we know the liver is one of the few organs that will regenerate in the absence of the initial stressor.   Why some dont experience this, I cannot explain.
« Last Edit: July 30, 2016, 09:12:15 am by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Lynn K

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  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: relapse after 1 year
« Reply #111 on: July 30, 2016, 01:40:36 pm »
I have said from time to time hep c is a slow moving virus in that it takes many years to cause liver damage in most cases however like any virus it replicates in an exponential maner which is why when treatment fails the virus returns with a vengeance.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: relapse after 1 year
« Reply #112 on: July 30, 2016, 01:46:06 pm »
Here is more info from another hep c page about reversibility of cirrhosis

"HectorSF


Alimentary Pharmacology & Therapeutics Review Article: The Reversibility of Cirrhosis

A. A. Sohrabpour; M. Mohamadnejad; R. Malekzadeh
Aliment Pharmacol Ther. 2012;36(9):824-832.

Abstract and Introduction
Abstract

Background Cirrhosis is the end result of many types of chronic liver diseases. Recent developments in the understanding of the process of hepatic fibrogenesis have revealed that the process is a dynamic one and a capacity for recovery from any degree of fibrosis including those associated with cirrhosis is plausible.
Aim To review current evidence of histopathological reversibility following drug therapy of more common aetiologies of cirrhosis.

Methods
A PubMed search was performed and the evidence for histopathological regression of advanced fibrosis/cirrhosis following drug therapy was reviewed as of the end of February 2012.

Results
There is abundant clinical evidence in support of the idea of the reversibility of cirrhosis in patients with different aetiologies of advanced hepatic disease including viral, autoimmune and metabolic/infiltrative liver disease.

Conclusions The concept of cirrhosis has changed from being a form of static and irreversible entity to a dynamic and reversible diseases stage. Novel therapeutic strategies are under investigation to target specific steps in the process of fibrogenesis with the aim of reversing advanced fibrosis/cirrhosis.

Cirrhosis, also know as "stage 4 liver disease", can be classified into sub-stages. The chance for reversibility of cirrhosis declines as the liver goes through more advanced substages of cirrhosis.

"Compensated cirrhosis"
May have no complications or symptoms at all. Blood tests may be normal, but there is usually a low platelet count (12 mmHg) portal hypertension."
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mike716

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  • Posts: 15
  • Here's looking at you. . .
Re: relapse after 1 year
« Reply #113 on: July 30, 2016, 03:45:03 pm »
HI, LYNN.

Yes, there are papers on both sides of the subject. And I believe, from all that I've read on it, that there are at least as many cases of worsening as there are of improvement. Or we could say it the other way round. It's a case of whether the glass is half full or half empty.

My hepatologist in the large hospital I belong to in Buenos Aires, which has the largest hepatology department in Argentina and treats the most cases of hep-c, says that of the hundreds of cases he has treated in the past ten years he has seen very few cases of improvement, that is, reversal of fibrosis grade, and those primarily in patients who were in an early stage (F0 - F3) before treatment. Once cirrhotic they remain cirrhotic, according to him. Which is why the hospital's standard protocol is to continue blood tests and ultrasound for the life of the patient, not only to watch for incipient HCC but because of the ongoing risk of portal hypertension, varices, and hemorrhage.

We are talking here about people who have been cleared of the virus, or at least are UND for over a year, later developing esophageal varices that bleed as well as other consequences of portal hypertension and cirrhosis (ascites, low platelets, low prothrombin, etc.).

Too downbeat? Perhaps. But it's better, in my opinion, to be prepared for the worst and be happily surprised when it doesn't happen, than to live in a fool's paradise. Denying reality can result in insufficient surveillance. That is the danger of thinking that once you are cured of the virus nothing further can go wrong with your liver.

M.
Diag. 2008: HCV geno 1a
Biopsy 2008: F1-F2
Fibroscan 2012: F2-F3
Fibrotest 2015: F4 (& AST 150)
Tx 2015: Sovaldi+Olysio, 12 wks.
EOT+3mos. VL: UND
EOT+15 mos. VL: UND

Offline Lynn K

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  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: relapse after 1 year
« Reply #114 on: July 30, 2016, 05:32:19 pm »
Hi Mike

I prefer to be glass half full I have had cirrhosis for 8.5 years at this time so I will of course continue with my every 6 months blood testing and abdominal ultrasounds plus my annual upper endoscopies and specialist visit and hope for the best. My main concern right now is HCC which will remain at elevated risk for me and others like me with cirrhosis. 

Best to you 
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mike716

  • Member
  • Posts: 15
  • Here's looking at you. . .
Re: relapse after 1 year
« Reply #115 on: July 30, 2016, 08:19:25 pm »
Lynn-

I've got to hand it to you, you're doing even more than I am. I progressed to cirrhosis also before Tx-ing, and I'm continuing with the blood tests and the unltrasound scans, but my hep MD hasn't said anything about an upper-endoscopy lately. Thanks for reminding me.

I agree with you, HCC is a very serious concern. It was brought home to me just how serious when my girlfriend here in B.A. passed away in April from liver cancer. Maybe you knew that. She didn't have HCV or even cirrhosis, as far as we knew, but somehow a carcinoma got started in her liver and it grew so fast that there was no treatment that could save her. Horrible, and very scary for us heppers. Considering how fast her liver cancer grew, I wonder if bi-annual US scans are enough. The whole thing has me very worried. I mean, she didn't have a chance, you know? In January she was fine, still working, no symptoms yet, and in April she was gone.

This is why I think that telling people they can expect fibrosis regression once they're cured of the virus isn't a good idea. It breeds complacency. Any one who got to an advanced stage of fibrosis or to cirrhosis before a successful Tx should remain highly vigilant and not act as if now they've got nothing to worry about.

Don't you agree?

Mike
Diag. 2008: HCV geno 1a
Biopsy 2008: F1-F2
Fibroscan 2012: F2-F3
Fibrotest 2015: F4 (& AST 150)
Tx 2015: Sovaldi+Olysio, 12 wks.
EOT+3mos. VL: UND
EOT+15 mos. VL: UND

Offline Lynn K

  • Global Moderator
  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: relapse after 1 year
« Reply #116 on: July 30, 2016, 08:31:08 pm »
I believe in being optimistic but realistic.

I have the annual endoscopies because I previously had grade 3 varicies that required banding back in 2012

So sorry to hear about your girl friend. We lost a member her recently also to HCC less than a year after she was cured of hep  c.

But again I prefer to look to the future with courage and optimism.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mike716

  • Member
  • Posts: 15
  • Here's looking at you. . .
Re: relapse after 1 year
« Reply #117 on: July 31, 2016, 12:15:31 am »
Lynn-

Quote
I have the annual endoscopies because I previously had grade 3 varicies that required banding back in 2012

I didn't know that. You must have suffered a lot and been scared.

Quote
So sorry to hear about your girl friend.

Thank you.

Quote
We lost a member here recently also to HCC less than a year after she was cured of hep  c.

Was she diagnosed with HCC before she treated the hep-c?


By the way, your profile says:

24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, NOT DETECTED!

Didn't you have an EOT+12mos. VL (PCR) done? You only mention a 44 weeks Fibroscan.

Cheers.

Mike
Diag. 2008: HCV geno 1a
Biopsy 2008: F1-F2
Fibroscan 2012: F2-F3
Fibrotest 2015: F4 (& AST 150)
Tx 2015: Sovaldi+Olysio, 12 wks.
EOT+3mos. VL: UND
EOT+15 mos. VL: UND

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: relapse after 1 year
« Reply #118 on: July 31, 2016, 12:59:01 am »
Something showed up on her 6 month post treatment ultrasound last fall she passed away in January or February I think.

My annual visit was at 44 weeks post so we did all the normal stuff and I asked for a viral load test at that time 44 weeks not detected.

About the varicies I had an upper endoscopy once a month for 4 months for the bandings. My best guess is I have had a total of 12 give or take over time from the initial one with grade 1. Since the bandings I haven't had any reoccurrence.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mike716

  • Member
  • Posts: 15
  • Here's looking at you. . .
Re: relapse after 1 year
« Reply #119 on: July 31, 2016, 01:37:54 am »
Lynn-

Quote
Something showed up on her 6 month post treatment ultrasound last fall

I'm surprised she didn't have a heart attack right then and there.

Quote
she passed away in January or February I think.

Same time-frame as my girlfriend. HCC doesn't give you a chance. Did they try any sort of therapy for the cancer, or did they figure it was pointless because it was already too far advanced when they found it?

Quote
My annual visit was at 44 weeks post so we did all the normal stuff and I asked for a viral load test at that time 44 weeks not detected.

Maybe you could edit your profile to make that clear. As it is, it sounds like you are saying undetected by Fibroscan.

Quote
My best guess is I have had a total of 12 give or take over time from the initial one with grade 1.

12 endoscopies? You are a very brave person. I bet you did them without a general anesthetic, too.

Quote
Since the bandings I haven't had any reoccurrence.

You've been lucky. I knew someone who died of hemorrhaging varices. He otherwise had more or less compensated cirrhosis, except of course for platelets and prothrombin time, which were way down. The hospital tried everything but couldn't stop the bleeding (or so they claimed). This was the main reason i decided to finally treat when I did. My platelets were dropping fast (in one year, 2014/2015, from 145k to 80k) and my coagulation factors had also started down.

By the way, I meant to ask you, what's the story with all your ultrasound tests. Did they detect portal hypertension early? What was the blood flow in your portal vein at different stages, like when the varices appeared, do you know? (Sorry to be so nosey but this stuff interests me, as ultrasound has been my primary test and the only ongoing one)

M.
Diag. 2008: HCV geno 1a
Biopsy 2008: F1-F2
Fibroscan 2012: F2-F3
Fibrotest 2015: F4 (& AST 150)
Tx 2015: Sovaldi+Olysio, 12 wks.
EOT+3mos. VL: UND
EOT+15 mos. VL: UND

Offline Mike716

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  • Here's looking at you. . .
Re: relapse after 1 year
« Reply #120 on: July 31, 2016, 02:33:14 am »
dragonslayer-

Quote
Im not saying the author is wrong, but insofar as this could be an explanation for delayed relapse, it happens in an extraordinarily small number of people.

That remains to be seen. The study that the editorial refers to had people relapsing as long as 6.5 years post-EOT, and that was still when they were treating with INF/RBV, which doesn't exert anywhere near as much pressure on the virus to mutate as the DAAs. I think we will have to wait and see just what the relapse rates are with the DAAs. From the reaction of the nurse at Gilead, which someone posted here somewhere, relapse after Harvoni was not negligible.

One thing that worries me is that it no longer seems that the time it takes the variants to revert to wild-type is as short as originally thought. This is very worrying as it could be getting longer as the treatment meds become more specific. We could end up turning HCV into a stealth virus. This is always a danger when trying to cure virus infections with chemicals, and these new ones aren't beeing administered with much care (knowledge about outcomes). I'd like to see more money going into research towards a vaccine.

I always have in the back of my mind some papers I read a few years ago about new epidemics of old diseases that had been thought to be conquered, like tuberculosis and pneumonia. The indiscriminate application of pathogen-specific antibiotics finally drove the bacteria involved into becoming so resistant that there are now strains that resist all antibiotics, creating a new epidemic. Microbes don't sit around waiting to be eliminated. They fight back.

Quote
In addition, the article was published in 11/13, a full year before Harvoni was approved, and before other contemporary DAAs were in wide circulation and, even so, it was offered as a hypothesis only.  Words like 'might' fill the text.  The landscape is changing fast, and I wouldnt cling too hard to any one explanation for unusual phenomena at this point.

Perhaps. But there has to be some explanation why some people relapse, and as long as 6.5 years after Tx (INF/RBV).

Sooner or later modern medicine is going to inadvertently create a microbe, virus or bacteria, that is unbeatable and which decimates populations. It has happened before in history, at various times and from various causes.

Quote
The idea that a non cirrhotic liver will still  progress to cirrhosis post SVR in a 'significant'  number of cases sounded beyond fatalistic and more than a little depressing.  I dont have enough specific knowledge to comment on this, but we know the liver is one of the few organs that will regenerate in the absence of the initial stressor.   Why some don't experience this, I cannot explain.

I'd like to see some well-acquired data on this issue myself. And some attempts at an explanation of the mechanism. Because if there is no longer any HCV killing hepatocytes, what is continuing to kill them? Although to tell you the truth, what with the unreliability of all the fibrosis tests devised so far (except perhaps for MRE), it's hard to trust the supposed cases of worsening after cure.

I'm waiting for a serious book about HCV in all its facets and on all these issues to date.

M.
Diag. 2008: HCV geno 1a
Biopsy 2008: F1-F2
Fibroscan 2012: F2-F3
Fibrotest 2015: F4 (& AST 150)
Tx 2015: Sovaldi+Olysio, 12 wks.
EOT+3mos. VL: UND
EOT+15 mos. VL: UND

Offline jakas

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  • Posts: 265
Re: relapse after 1 year
« Reply #121 on: August 02, 2016, 07:30:17 am »
I think this thread should be deleted. The topic was a false alarm.

https://www.hepmag.com/blog/hepatitis-c-treatment-svr
« Last Edit: August 02, 2016, 07:34:11 am by jakas »
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline dragonslayer

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Re: relapse after 1 year
« Reply #122 on: August 02, 2016, 08:39:57 am »
I think this thread should be deleted. The topic was a false alarm.

https://www.hepmag.com/blog/hepatitis-c-treatment-svr

I disagree.   While its true that the original post reflected a test which turned out to be invalid, nevertheless, there is a lot of valuable information and linked data contained herein.  Why lose it?!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Mike716

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  • Posts: 15
  • Here's looking at you. . .
Re: relapse after 1 year
« Reply #123 on: August 02, 2016, 08:50:49 am »
jakas-
Quote
I think this thread should be deleted. The topic was a false alarm.

I agree with dragonslayer.

What's more, I cannot comprehend how you or anyone else could suggest deleting a thread with 119 replies in it and in which many people have gone to great expense in time and energy to discuss what is probably the major issue - relapse - in this forum (PostHepatitis C Treatment).

Calling for the deletion of other people's work is an ugly thing to have done. It indicates a selfishness that is totally out of place in an open and collaborative forum.

Rather than deleting my work and that of all the other contributors to this thread, I would much prefer to see you deleted for your ugly, selfish, and undemocratic suggestion.

M.
Diag. 2008: HCV geno 1a
Biopsy 2008: F1-F2
Fibroscan 2012: F2-F3
Fibrotest 2015: F4 (& AST 150)
Tx 2015: Sovaldi+Olysio, 12 wks.
EOT+3mos. VL: UND
EOT+15 mos. VL: UND

Offline mollythedog

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  • Posts: 36
Re: relapse after 1 year
« Reply #124 on: August 02, 2016, 11:40:33 am »
Reading through the discussions on this thread, I remember when it was started, I thought it might be helpful to add my results.
2012-diagnosed hcv, via single episode of ascites. Varices B2. Platelets 33k, ast alt slightly high.
Decompensated cirrhosis, F4, liver covered in nodules.
July 2013 - diagnosed hcv 3 lesions.
August 2013 - chemo-embolisation partial success.
September varices stapled. Total blood screening, cat scans and mag. res.
October 2013 - Liver transplant. 5 cancerous lesions found.
December 2013 - recurrence of hcv alt/ast 280/350 leucocytes 1600 platelets 70k
June 2014 F1 A1
November 2014 F4 confirmed 3 times over 8 months
March 2015 VL 10 m. Treatment sov/olysio ribavirin. 12 was. Relapse at 12 weeks EOT.
October 2015  VL 5 m. F4 Retreatment sov daklinza ribavirin 24 wks
July 2016 VL undetected 15 weeks EOT.
Magnetic resonance plus fibroscan F1 ast alt 30/17 platelets 118k.
From F4 to F1
Next VL be October 13.
Hard to believe at first but feeling great. Best wishes to all.   Mollythedog.

Offline mollythedog

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Re: relapse after 1 year
« Reply #125 on: August 02, 2016, 11:42:18 am »
Correction. July 2013 diagnosed HCC


Offline KimInTheForest

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  • Believe in yourself
Re: relapse after 1 year
« Reply #126 on: August 02, 2016, 11:50:45 am »
From F4 to F1
Next VL be October 13.
Hard to believe at first but feeling great. Best wishes to all.   Mollythedog.

From F4 to F1 - WOW! That's great Molly. Congrats! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline FutureThinker

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  • Posts: 711
  • Onward and upward!
Re: relapse after 1 year
« Reply #127 on: August 02, 2016, 12:06:55 pm »
W O W
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: relapse after 1 year
« Reply #128 on: August 02, 2016, 12:13:14 pm »
Sorry, going to try my post again........ W O W is all I can say, Molly!!!!!! Yours is an incredible story and thank you for sharing it with us. We're all just going to have to wait to see how this new DAA treatment works out, and we won't know for a while. I think there is good chance that the whole protocol will be different in the next 2 years or so. Lots of research still going on, and so many more people being treated, so we are all going to have to "stay tuned" to the medical community to see what all the data shows in the years to come.

We are the pioneers.  FT 
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline jakas

  • Member
  • Posts: 265
Re: relapse after 1 year
« Reply #129 on: August 02, 2016, 02:51:00 pm »
jakas-
I agree with dragonslayer.

What's more, I cannot comprehend how you or anyone else could suggest deleting a thread with 119 replies in it and in which many people have gone to great expense in time and energy to discuss what is probably the major issue - relapse - in this forum (PostHepatitis C Treatment).

Calling for the deletion of other people's work is an ugly thing to have done. It indicates a selfishness that is totally out of place in an open and collaborative forum.
Tell the moderator to change the title OF THE THREAD, try a search on google for SVR 12 AND RELAPSE
OTHERS PEOPLES WORK i VALUE but not THIS FALSE alarm
Rather than deleting my work and that of all the other contributors to this thread, I would much prefer to see you deleted for your ugly, selfish, and undemocratic suggestion.

M.
Tell the moderator to change the title OF THE THREAD, try a search on google for SVR 12 AND RELAPSE leads you straight here. I did not believe this thread title from when posted.
OTHERS PEOPLES WORK i VALUE but not THIS FALSE alarm DONT YOU REALISE the HARM its done COME ON, wake up !!!
LOL AND i DONT MIND BEING BANNED FROM THIS SITE btw you have 11 posts here thanks for them anyway. Bye
« Last Edit: August 02, 2016, 02:53:03 pm by jakas »
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline Lynn K

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  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: relapse after 1 year
« Reply #130 on: August 02, 2016, 03:23:27 pm »
Ok folks if you recall our general forum rules

Forums, a round-the-clock discussion area for people who have Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the HEP Forum Moderators.

As you see we do not delete posts except on the occasions they are either an attempt to do something illegal like sell meds for an example , spam the forum or are personally abusive and obviously offensive.

That is why we say think before you post.

While I understand your concern about the title jakas it is what it is. If you look through the other threads in the forum I am sure you will find other examples of titles that could have been better chosen especially in hindsight like the title of this thread.
« Last Edit: August 03, 2016, 04:04:44 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mugwump

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  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: relapse after 1 year
« Reply #131 on: August 02, 2016, 11:52:53 pm »
Lynn I hope some read the thread because of the title. What the lesson here is that pcr testing can be wrong! All it takes is a very small bit of contamination and it does happen. Very important lesson not to panic if you are weakly detected and retesting is paramount.

Cheers to you for the pain the mistaken test put you through and we all need to keep our spirits up when this sort of thing happens.

All the best to you Audrey and many happy HCV free years.

Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Lynn K

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  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: relapse after 1 year
« Reply #132 on: August 03, 2016, 12:25:33 am »
Thanks Mugwump

That is exactly why we do not need to delete or otherwise modify this post
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline mollythedog

  • Member
  • Posts: 36
Re: relapse after 1 year
« Reply #133 on: August 03, 2016, 04:00:30 am »
Bello Lynn, Jakas, Mike, Mugwump et al,
I've written on this forum a lot and learned a lot more than Io wrote. I read all available info, studies, statistics etc. available via the links provided by diligent members. When I was VL be undetected 15 weeks I didn't believe it. Certain I had RAVs and that I was untreatable, one failed treatment already. My days were numbered. My first reaction was anger
Unexplainable anger and resentment. On hindsight I realise it was post by traumatic stress. This pathology is so stressful that while we're trying to slay the dragon we have a high adrenalin level and then suddenly pffffffff it's disappeared. Of course it's hard to believe!!! I still don't know whether or not being so informed and knowledgeable regarding hcv is a positive thing for everyone. Personally it was one way of fighting back. But the stress but caused by a realistic awareness of not being cured (again) was enormous. I'm still feeling disoriented regarding my future. Testing is a must for me due to the transplant and life long immune suppression. My advice for whatever it may be worth, I s to keep as calm as you can. Take time out NOT to think about the scientific aspects. We're not specialists or even doctors, some are nurses perhaps but it's so easy to panic over things which cannot happen but our logical reasoning tells us they could. It's more complicated than we think. My specialist proved to be right so many times when reason told me he was either wrong or underestimating. It's marvellous to take time out. I often forget I am Undetected. My blood work is now perfect and I abound with energy and not underlying stress induced adrenalin. Relapse? I doubt it but if it happens I'll go back on the battlefield.
Molly

Offline JimmyK

  • Member
  • Posts: 18
Re: relapse after 1 year
« Reply #134 on: August 03, 2016, 07:50:50 am »
Greetings,

I have been away from this Forum for quite a few months. I started reading again this morning early and came across this thread. Started at the first post and read all the way through.

I have to tell you, the entire thread read like a well penned Suspense Novel. LOL I was sitting here, and kind of had to pee, but could not stop "turning the pages" on this one!

Very happy for the OP regarding the outcome. At the same time happy for all that I could sense the formation of the old lump in the throat.

God Bless Y'all. Have a great day!

JimmyK
« Last Edit: August 03, 2016, 08:16:28 am by JimmyK »
Gen 1a HCV PCR Q 3880000, ALT 94 AST 58, F2
Tx 1 Viek/Rib x 12 SOT 10/15/15 Breakthrough_Treatment Stopped 12/29/15

Tx 2 Harvoni x 12, SOT 04/15/16, EOT 07/07/16, UND week 4 and 12. EOT + 4 Weeks 08/04/16 will repeat HCV RNA to determine status due to NS5A and NS3 findings at EOT TX1 12/29/15. (M28T and Q80K,D168Y)
Considered an "interesting" case. Update EOT + 4 Weeks HCV RNA came back UND. On to 09/29/16 for SVR 12.

 


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