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Author Topic: I am one of the 3% !!!!!!!!!!!!!! @#$%&*  (Read 12677 times)

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Offline Boatguy

  • Member
  • Posts: 11
I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« on: March 29, 2016, 08:25:55 pm »
Just got my 90 day post treatment labs back and the F-N virus is there at a VL of just over 2 mil.

I was UNDETECTED at 4, 8 & 12 weeks!

I am upset to say the least.

Not sure what is next .... see the doc next tuesday.

I had asked for Harvoni in the first place, and insu MADE me take the viekira.

Lets see what they say now.
Hep c 1A

Pre Tx VL = 5.1 million

ALT and AST always about 2 pts above high normal for last 10 years.

Taking Viekera Pak and 1200 MG Ribavarin daily for 12 weeks.

2 week VL on TX = 18 !!!

4 week VL = UNDETECTED !!!!!!!!!!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #1 on: March 29, 2016, 08:36:19 pm »
So sorry to hear this, boatguy! Keep us posted on what your doctor advises for re-treatment. So much new stuff coming out these days - even for people who have relapsed on other new Hep C drugs.

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 Tomcat

  • Member
  • Posts: 73
  • HCV/ HIV on Daklinza and Sofosbuvir
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #2 on: March 30, 2016, 02:45:22 am »
Really,  really sorry to hear your news.
Deep breath and hope you get this sorted with your doctor soon.
HIV/HCV G3 Coinfection diagnosed March 2014
Started Dak/ Sof Treatment March 2016
09/03     AST 147  ALT 261
03/05     AST 21    ALT 24
28/06     AST 21    ALT 19
Viral Load - Undetected

Offline HazelAustralia

  • Member
  • Posts: 178
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #3 on: March 30, 2016, 04:26:55 am »
 :( So sorry to hear your terrible news Boatguy. Gee, I can't imagine what you must be going through. And we are all just a hair's breadth away - it could be any of us. I really hope your doctor has some options for you, but otherwise I know there are people here who have their finger on the pulse of new international trials etc.
Thinking of you,

Hazel
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline Flaco

  • Member
  • Posts: 56
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #4 on: March 30, 2016, 09:31:01 am »
Ah crap, man! I'm real sorry to hear that >:(
Yeah, like Hazel said, if there's any silver lining here it's that it should be easier to get retreatment.
Still, I'm bummed for you.
« Last Edit: March 30, 2016, 09:35:46 am by Flaco »
Best Regards,
Jack

Diag 2001
Failed PEG-int/Riba 2002, 48 wks.
2015-16:
F4 compensated
VL 14.7 million
GT 1A
Alkaline Phosphatase(37-127 U/L): 12/23/15 216; 1/14/16 152; 1/29/16 103; 3/18/16 68; 4/1/16 70
SGPT (ALT) (15-78 U/L) 12/23/15 862; 1/15/16 753; 1/29/16 518; 3/18/16 48; 4/1/16 28
SGOT (AST) (9-44 U/L) 12/23/15 283; 1/15/16 226; 1/29/16 165; 3/18/16 24; 4/1/16 19
Start Harv 24 wks. 3/4/16
Undetected 2 weeks into Tx
Liver&metabolic nos. steadily improving since start TX
EOT 8/18/16

Offline jakas

  • Member
  • Posts: 265
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #5 on: March 30, 2016, 10:16:25 am »
So  sorry to hear that.  I hope there is a cure soon  for your  case.  Nearly 4 weeks post tx here so dont know what  the future   brings. Best of luck
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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #6 on: March 30, 2016, 01:01:27 pm »
Hi Boatguy and I am so very sorry to hear your news.  I just saw a post you need to read under the "Considering HCV Treatment" category, Topic by J. Eugene titled "Viekira Failure (GT1a) - HCV Drug Resistance Testing - Retreatment Option" dated Feb. 23, 2016.  This member has done some excellent research and provided links for further reading, which you may find of interest.  Hang in there, this is a bump in the road to SVR and it's just going to take a bit longer than you'd have liked.  We all know it can happen to any of us, so we feel your anguish at the news.  You'll find some good info on this forum -- 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 lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #7 on: March 30, 2016, 01:31:12 pm »
Very sorry to hear this - keep us posted. Do you know about velpatasvir/sofosbuvir which likely will be approved June 28? Might be worth waiting for.
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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #8 on: March 30, 2016, 05:14:11 pm »
Sorry to hear your news. To look for a silver lining to your crappy cloud, there are so many people working so hard on finding an effective cure for this virus, I am sure there will be something for you very soon.


I understand how dispiriting this is, but it's not the bad old days of really limited options. Keep an ear to the ground for trials and the like. Good luck !
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 Mike

  • Member
  • Posts: 999
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #9 on: March 30, 2016, 07:39:05 pm »
Boatguy,

I'm so sorry to hear this. I know the feeling, as I failed treatment the first time around.

There are a lot of new things coming out, and I'm quite sure you'll slay this dragon.

Please keep us in the loop and don't give up hope!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline AussieRosa

  • Member
  • Posts: 226
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #10 on: March 31, 2016, 12:26:51 am »
Boatguy, my thoughts are with you at this awfully trying and disappointing time. You must feel shattered. I really hope you push forward with whatever the doctors come up with for you as a next step in your path to ridding yourself forever of this virus.
Rosa
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 BillT

  • Member
  • Posts: 573
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #11 on: March 31, 2016, 10:25:18 am »
I'm really sorry to hear that Boatguy.I can only imagine what's going through your mind right now.As everyone has said the new drugs are coming out but that's probably not much consolation to you right now.Keep the faith and realize the fights not over.I'm waiting on the results of my 12 week EOT right now and I'm so damn nervous I can't stand it.Hang in there and let us know what your doctor says.Best of luck my friend.
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline brie41

  • Member
  • Posts: 191
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #12 on: March 31, 2016, 03:16:57 pm »
Hi Boatguy,

  Wow, I can't imagine the disappointment and frustration you must be feeling.  I know we all wonder if we will be in the small percentage that don't stay clear.  I am so sorry you are in that group.  Life is not fair, but it does sound like some promising treatments right around the corner for those of us who need it.  Keep the faith!  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline malou

  • Member
  • Posts: 57
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #13 on: March 31, 2016, 05:56:23 pm »
I am so sorry Boatguy, I know you are probably angry and frustrated.  There will be other treatments, soon, I know.  Hang in there, this can be killed without killing the patients.  ML
HCV 1996- Work Exposure ER nurse
GT 1a
Non-responder to Interferon in 1997
ALT 73 AST 21 F1-2
Applied to Insurance for Harvoni 12-15
Denied 12-3-15  Told I would never qualify for Harvoni because I was not 'ill'.
Started Twinvir (Bengladesh Harvoni) on 1/1/16

After 4 weeks ALT 23, AST 15, HCV-RNA UNDETECTED
After 8 weeks:AST 23, AST 11, HCV RNA UNDETECTED
6 weeks post treatment, undetected.

Offline tmf2

  • Member
  • Posts: 42
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #14 on: April 12, 2016, 10:40:46 am »
I would get tested for NS5A Resistance-associated variants (RAVS) and polymorphism first. I was in the same boat as you  I also have cirrhosis.  I failed Harvoni and was positive for RAVS. My Heptologist will be prescribing velpatasvir/sofosbuvir as soon as it is FDA approved and on the market. As I side note I asked about the failures concerning Harvoni and my Heptologist said they were seeing quite a few.....said one fellow from Canada came down for treatment paid cash for Harvoni and failed ...ouch !!!

Dennis
« Last Edit: April 12, 2016, 10:47:47 am by tmf2 »

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #15 on: April 12, 2016, 02:56:56 pm »
EASL meeting starts this week, I think, so I am sure there will be some interesting findings presented.  We are all gonna beat this, we just have to hang in there and keep fighting until it happens.  The current level of research is definitely showing that one of these drugs will be the one,  we are just still figuring out which one. I really believe there will come a day when we will be tested for RAVs before treatment (like Merck is recommending for Zepatier), we are just not there yet. 

What's important is that we ARE getting there. 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 JackN

  • Member
  • Posts: 52
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #16 on: April 18, 2016, 10:40:55 pm »
http://www.medicalnewstoday.com/categories/liver_disease
Link for new safer drug per article u may wish to inquire about.
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline JackN

  • Member
  • Posts: 52
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #17 on: April 18, 2016, 10:46:18 pm »
http://www.medicalnewstoday.com/categories/liver_disease
Link for new safer drug per article u may wish to inquire about.
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #18 on: April 19, 2016, 12:17:41 pm »
Interesting link, thanks JackN -- 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 lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #19 on: April 20, 2016, 01:31:50 pm »
HEP has some good EASL info, and a link to EASL: https://www.hepmag.com/tag/easl-2016
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: I am one of the 3% !!!!!!!!!!!!!! @#$%&*
« Reply #20 on: April 20, 2016, 07:38:51 pm »
Thanks much, Lucinda! I will check it out -- 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!

 


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