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Author Topic: 6 month follow up relapsed ugh  (Read 13197 times)

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Offline Mugzy

  • Member
  • Posts: 12
6 month follow up relapsed ugh
« on: March 04, 2016, 04:18:43 pm »
Was so happy after testing negative after a 12 week treatment unfortunately I relapsed viral load was much lower from 10 million + to 560,000 still very discouraged
Logged
Genotype 1A
1985 diagnosed non A non B
1997 Peg Ribavirin interferon no response
fibrosis L3
viral load 10,87596
Alt 74
Ast 39
5/16/15 started 12 week Harvoni
5/30/15 Viral load <15 UD
Alt-25
Ast-21

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: 6 month follow up relapsed ugh
« Reply #1 on: March 04, 2016, 04:28:02 pm »
Were you tested and found to be UND 12 weeks after your last tablet? Or just at 6 months after treatment ended?

Sorry to hear your crappy news, but there are other treatments coming down the pipeline. Stay strong.
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Mugzy

  • Member
  • Posts: 12
Re: 6 month follow up relapsed ugh
« Reply #2 on: March 04, 2016, 04:35:00 pm »
3 weeks after last tablet negative. My doctor said I was the first of his patients to relapse he is looking up and checking with colleagues alternate treatments.
Logged
Genotype 1A
1985 diagnosed non A non B
1997 Peg Ribavirin interferon no response
fibrosis L3
viral load 10,87596
Alt 74
Ast 39
5/16/15 started 12 week Harvoni
5/30/15 Viral load <15 UD
Alt-25
Ast-21

Offline jakas

  • Member
  • Posts: 265
Re: 6 month follow up relapsed ugh
« Reply #3 on: March 04, 2016, 06:04:19 pm »
sO SORRY to hear this, I just finished yesterday 12 weeks on Harvoni :-[
Logged
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 lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: 6 month follow up relapsed ugh
« Reply #4 on: March 05, 2016, 12:06:30 pm »
So sorry!
Logged
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: 6 month follow up relapsed ugh
« Reply #5 on: March 05, 2016, 01:03:42 pm »
Mugzy, definitely not happy to read your news. But for those few who relapse -- and it can be any of us dependent on our genetic makeup -- this is such a promising time for HCV treatment with new drugs coming soon.  Also, we have some people on a trial for relapsers in this category you may want to research.  Hang in there, there are options for you, if not now, very soon.  FT
Logged
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 CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: 6 month follow up relapsed ugh
« Reply #6 on: March 05, 2016, 03:38:18 pm »
My condolences Mugzy.  Don't ever give up hope.

It might help to become more proactive and start researching the new things coming out in treatments for your genotype. 

I can certainly understand feeling a bit bummed out, but knowing about things on the horizon can help get that killer-shark spirit of your avatar back on point.  At the very least, being proactive can give you some feeling of control and can restore a sort of feeling like you had when you were a child and knew your birthday was coming up soon - like, I cant wait!  :)

Best wishes!
Logged
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: 6 month follow up relapsed ugh
« Reply #7 on: March 06, 2016, 01:21:37 pm »
Good thoughts, CureSeeker.  I forgot to mention on my last post that my guess is that Mugzy's doc will most likely order a RAV blood test to see what markers are present, and that will help decide on which future treatment to consider.

This kind of news takes my breath away, as I'm sure it does others.  I started treatment last month fully aware that relapsing is a possibility. We don't know until we try treatment. I don't think I'm going to be able to fully relax about this disease, if I do clear, for a couple of years! The drugs are just so new there's much more info for us to learn. I hope there is a good option for you, Mugzy, available now or very soon, that will put you back on the path to success. You'll get it! It's just going to take longer than you'd hoped.  FT
Logged
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 CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: 6 month follow up relapsed ugh
« Reply #8 on: March 06, 2016, 02:35:46 pm »
Quote from: FutureThinker on March 06, 2016, 01:21:37 pm
Good thoughts, CureSeeker

Just backing up what you already said before me, FT, lol.

We have a great group of role models on these forums.  People that took much harsher treatments than what we are/were taking (peg-int/riba) relapsed several times, had terrible cirrhosis all along, and still eventually emerged victorious over the long haul.  They are truly inspirational.

I hope people will be here to give me a pep-talk if I should falter somewhere along my journey and find myself reporting my own relapse, and I have a reasonable suspicion they will be. :D

Logged
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline chino1969

  • Member
  • Posts: 117
Re: 6 month follow up relapsed ugh
« Reply #9 on: March 08, 2016, 11:08:43 am »
Quote from: Mugzy on March 04, 2016, 04:18:43 pm
Was so happy after testing negative after a 12 week treatment unfortunately I relapsed viral load was much lower from 10 million + to 560,000 still very discouraged

Hang in there because there are new cocktails in the wings.  I relapsed two times in the past.  Once was approx.  13 years ago on Interferon/Riba.  The next was after 12 weeks on Solvadi/Olysio in 2014.  I finally achieved SVR after 24 weeks of Harvoni.  My hepatologist is with the U of Penn and is involved in research.  Do not give up hope as they are fine tuning the meds. to be able to deal with relapsers and most genotypes.  I know it's a bummer, been there twice, but don't give up.
Logged

Offline Karen1124

  • Member
  • Posts: 76
Re: 6 month follow up relapsed ugh
« Reply #10 on: March 08, 2016, 11:20:18 am »
So sorry Mugzy, I know how you feel I relapse too. I am trying to get in on a trial by
Gilead for the new drug to come out in June. Hang in there!
Karen
Logged
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: 6 month follow up relapsed ugh
« Reply #11 on: March 08, 2016, 11:39:14 am »
Merck was the first pharmco to recommend RAV testing PRIOR to treatment with their new HCV drug, Zepatier.  As I've posted previously here, I believe there is going to be a much more "personalized" approach to this treatment in the near future.  "We're just not there yet" per my hepatologist........ But I know we will be! There's a lot of hope now that wasn't in the recent past.  FT
Logged
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 MelHu

  • Member
  • Posts: 33
Re: 6 month follow up relapsed ugh
« Reply #12 on: March 08, 2016, 08:20:54 pm »
Hello everyone! 
Been a while since I've been on the forum (12/2015). I am approaching my 6 month EOT and am sorry to hear there are a few relapsing. How unfortunate and scary since I'm coming to that benchmark on this journey that started last April. Hopefully there will be new medicines for you all. I'm always a little worried because my GT2 had only 1 combo of sovaldi and RIBA  I hear there are other treatments coming out but just the same, the cost of the treatment makes all of Of us hopeful that we will be virus free someday. Ms Porter can you explain some of the reasons some of us are relapsing?  Sure appreciate your input.
Logged
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline northfork

  • Member
  • Posts: 57
Re: 6 month follow up relapsed ugh
« Reply #13 on: March 15, 2016, 04:58:30 pm »
Well, Mugsy, I relapsed after 24 weeks on Harvoni. I am in the Polaris -1 clinical trial of a triple combo of drugs. It's blind study, so I don't yet know if I am taking a placebo or the drug. So far (one week in) it feels like Harvoni. Which means not much, for me anyway. i do have noticeable tinnitus which I had on Harvoni.

Another forum member is in this study, also. Maybe we will hear from him soon.

Hang in there.
Northfork
Logged
Probably infected 1969. Diagnosed 2006. Genotype 1b.
Daclatasvir/ Asunaprevir 2013:relapse
Harvoni 24 weeks 2015:relapse
sofosbuvir, velpatisvir, voxillaprevir  trial started on drug 7/16. Viral load 890,000 approx. F2. Undetected after week 1.
12 week SVR achieved Jan 2017.
SVR 24 achieved April 2017 !

60 weeks post treatment...UNDETECTED!

Offline dragonslayer

  • Member
  • Posts: 873
Re: 6 month follow up relapsed ugh
« Reply #14 on: March 16, 2016, 09:44:29 am »
So sorry for the relapsers.   It would be helpful if you could list your viral load test results post treatment leading up to the relapse...  For example, Mugzy, you say that you tested negative, which I assume to be 'Undetected' at 3 wks post treatment..  At what post treatment marker, ie, how many weeks post treatment, did you first test with a positive viral load count?  Its so incredibly rare to be clear of virus at 3 wks post treatment, and then not make SVR12.  After all, you were almost SVR4, and with Harvoni, the odds of reaching SVR12 after having reached SVR4 are listed at about 99%!  Incredibly rare and bad luck.

http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf

I think it would be helpful for those that tested positive to list these markers specifically, as I know it would help a lot of folks worrying about their own status..

Thanks much, and best of luck to all of you.    Stay with it;  odds are big time in your favor.   
« Last Edit: March 16, 2016, 10:35:56 am by dragonslayer »
Logged
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
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