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Author Topic: The Return of the Beast!  (Read 10306 times)

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Offline jakas

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  • Posts: 258
Re: The Return of the Beast!
« Reply #100 on: October 21, 2018, 10:06:39 am »
HAS ANYONE RUN ACROSS ANYONE OR HAVE ANY INFO. OR STATS ON PEOPLE THAT ACHIEVED SVR FOR 12 OR MORE MONTHS AND RELAPSED?
   
No I have not heard of it anywhere you are the first. I had genotype 1a and 1b.
Harvoni for 12 weeks.
Tested at 4 weeks after treatment negative, 12 weeks tested negative, 24 weeks tested negative and 63 weeks E.O.T. negative. After 24 weeks the doc said relapse ruled out.
Thus your case is the first, I know of. I just cant figure out it was was the testing they did or how you relapsed. Following this thread very closely now. Please keep us updated.
M/55 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 finally SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 May 2017

Offline slats1056

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  • SVR to all and to all a good life!
Re: The Return of the Beast!
« Reply #101 on: October 22, 2018, 11:04:41 pm »
  Well , it looks like I will have to revert back to the on treatment threads in a couple of days. Still don't have my labs in hand. But the powers that be (BCBS, Prime  Theraputics , Gastro ,the pharmacy, and Abbvie) deemed it necessary to fast track Me to retreatment A.S.A.P! Got calls and letters from all but the Gastro today. I am sure that call will come tomorrow. I am totally baffled by the lack of concern by them as to why I am one of the very few to be Genotype 1b , treatment naive , no cirrohsis to have relapsed after 12 week Tx. with Harvoni. Makes Me wonder if it is the Big Pharma grab or if there is a true concern for My case. From the insurance stand point it is cheaper than a transplant or cancer for sure. Apparently that is up to Gilead since they produce Harvoni.  Seems to Me that there would be a little more interest as to what went wrong. But I guess it doesn't matter to them that this is a rather costly SNAFU for Me , and that I have to do it again no matter what.  Makes Ya wonder don't it?? ??? ::) :P :-\ :o Just hope I can keep on working as I am still dealing with some after effects of the first Tx. Here is hoping that I don't have as rough a go of it with Mavyret as I did with Harvoni !!!!!!!!

OH WELL , IT IS BETTER TO BE BROKE AND ALIVE THAN RICH AND DEAD I GUESS.

  Here is to all of My friends that are out there around the world , and to all the new ones yet to be met here in the wonderful world that is Heplandia!
  As soon as I get those pesky labs in hand I will post again. But by that time I will probably Have the new Rx. in hand. LMFAO

 HERE IS ONE GUYS---WHEN I PROMISE TO COME UP WITH AN ORGAN TRANSPLANT PUN-----I DE-LIVER!!!!!  Later guys and gals!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline lporterrn

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Re: The Return of the Beast!
« Reply #102 on: October 24, 2018, 09:53:10 pm »
Ditto on what Eric said. As for using genotype testing to see if this is a new infection, reinfection, or return of old infection, given what we know, it is most likely to be that you didn't have a durable SVR in the first place, even if the genotype is different. Although your situation is rare, it does happen. Multiple genotypes also occur.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline slats1056

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Re: The Return of the Beast!
« Reply #103 on: October 25, 2018, 09:37:26 pm »
   Hopefully this works! Lab reports follow if it does. Mavyret RX. for 16 weeks in hand,start 10-29-18. On treatment Lab schedule set up. Recommended taking Meds with a full meal (breakfast or lunch suggested) or possible upset stomach and nausea will result. Suggest not taking at nite with dinner. Labs scheduled (CBC) at 2,4,8,12 & 16 weeks, Viral load week 4 & 16. EOT 2-11-19. Follow up labs scheduled for 4,12, & 24 weeks post treatment with viral load check.
  The medical assistant assigned to Me said Doc is & has been treating multiple relapse cases (not sure of how many) , 4 of which were on Harvoni , all of which are assigned to her. Apparently I am the first 16 week treatment patient of the 4. Well---Here We go boys and girls, buckle up and get comfortable for the ride, no sides expected or indicated. We shall see!! :o ??? ::) :P :-\





https://drive.google.com/open?id=1fHRbWEruUuS0hc9HivEB0LEsQUJ0CDU6
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

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  • SVR to all and to all a good life!
Re: The Return of the Beast!
« Reply #104 on: October 25, 2018, 10:04:15 pm »
 All indications are pointing to relapse, no known indicators for re-infection . Same genotype 1b now for re-treatment with Mavyret as three years ago when treated with Harvoni. the only possible scenario for re-infection is by family member & they are getting tested to rule out that and give Me some peace of mind.  At this point everyone seems to think the question of relapse is a moot point. No matter , I have the Rx. for re-treatment none the less!! At this point My best guess as to Harvoni relapsers in My situation is less than two dozen. Oh well, Life is a bitch then You treat  and repeat until cured ,right? ;)
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Lynn K

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Re: The Return of the Beast!
« Reply #105 on: October 25, 2018, 11:16:33 pm »
Well forward progress anyway

Best of luck and kick butt!
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 danton

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Re: The Return of the Beast!
« Reply #106 on: October 26, 2018, 02:17:48 pm »
Hi slats,

Been following your thread here and happy to hear you are getting started on your re-treatment.
It really is a moot point (interms of your upcoming treatment) to you and your doctors on whether or not you have relapsed or been re-infected, as Mavyret for 16 weeks is the right treatment for 1b relapse and it certainly would be appropriate for a new infection (although the duration of 16 weeks for a new infection might be a tad overkill)

If it was me ,I would rather overtreat than undertreat

There have been thousands that re-lapsed on Harvoni slats,however as we were all discussing earlier on this thread awhile ago ,having relapsed as late as you did has been proven by data to be somewhat a rarer occurence.

Best of luck with your treatment slats!

Offline lporterrn

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Re: The Return of the Beast!
« Reply #107 on: October 26, 2018, 04:39:51 pm »
All looks good - go kill the beast!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline slats1056

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  • SVR to all and to all a good life!
Re: The Return of the Beast!
« Reply #108 on: October 26, 2018, 08:10:38 pm »
 Hey Lynn,
   Progress is right! One foot in front of the other. Keep on Truckin' , right?

 Danton, Whats' up?
    Been a while. Yeah , You Guys are right. Can't dwell on the bad stuff or the B.S. , it just holds You back right. New day , new treatment! Bring it on ;D  Still it bugs Me a little about the later than normal relapse. Hoping to breeze through Tx. without any glitches or problems. While I was typing this , a nurse representative from Abbvie called. Said she will be following for the duration of Tx. to after Tx. So , at least I will be inputing info. to them as opposed to the cattle call that was Harvoni. :)

  Lucinda,
   Yes the beast must die, here is hoping that this is the magic sword needed for the task. ;) BTW, has anyone ever told You that You have an infectious SMILE ;D ;D ;D?

  Thanks to all of You guys , now I can try to relax a little and rest My little ol' pea brain, as well as get some rest.
  I guess protocol dictates moving back to the on treatment side again when I get started next week.

   Thanx again all of You guys are great and I am lucky to have all of You in My corner. :) ;)


   
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: The Return of the Beast!
« Reply #109 on: October 26, 2018, 09:10:10 pm »
More speculation here Slats on why you may have relapsed late: but the little bird of logic that mister Spock once alluded to has spoken in my ear on one possible cause of your treatment failure with Harvoni.

It is very possible that the ledipasvir component in Harvoni is part of the equation here for some unlucky individuals.

It is know to be ingested and metabolized differently. Perhaps some people with a slightly less acidic digestive system during treatment for some reason or other, might not receive the necessary effects of a full Harvoni treatment as prescribed.

I am 3 years free from detectable HCV thus there has been no sign of the virus in me for a full three years. But I had the full 24 weeks of Harvoni thank heavens.

Either way Michael Sofia should be awarded a Nobel prize for not listening to all the detractors and naysayers in the drug industry, thus brilliantly showing the way to deliver anti-virals directly to hepatocytes and giving us the chance at freedom from HCV.
However when it comes to your Mayvret treatment and those little pieces of less than living RNA eating away at your liver Slats: as John Wayne said as he led the parachute brigade to Sainte-Mère-Église on the D Day drop... Send em to hell!!  When I was on treatment EVERY TIME I had to take a crap or piddle (which was just about every 2hrs during the second week!) this is exactly what I imagined doing to the inert HCV rna and dead liver cell by products going down the shitter. >:( >:( >:( >:( then ah what a relief it is!!!
Whether or not my imaginative aggressive murder of HCV encapsulated rna did any good is moot. It sure helped with not having to take a laxative or eat a butt tonne of prunes during treatment though. Only draw back is that my grunts and groans and at times machine gun butt shots might have seemed a little extreme for my wife and our cats. Both of whom very wisely stayed away from me while I was on the crapper during the time I was on treatment!
Cheers
Eric 
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline danton

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Re: The Return of the Beast!
« Reply #110 on: October 27, 2018, 04:30:10 pm »
Hi slats,

You said:
" Recommended taking Meds with a full meal (breakfast or lunch suggested) or possible upset stomach and nausea will result."
---------------------------------------------------------------------
Make sure you do take this with a full" moderate to low fat meal".

Not just because you may have some nausea or stomach upset but because the prescribing info from data taken in study showed that the absorbtion of this drug is quite" significantly" reduced if not done so.

The reason I mention this slats and hopfully your doctor did also ,is you certainly would not want to take it without food  just because you were feeling no stomach upset.

It can make a difference and the second time around you want to make sure you give yourself ALL the advantage.

Good luck!

Offline slats1056

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  • SVR to all and to all a good life!
Re: The Return of the Beast!
« Reply #111 on: October 29, 2018, 09:24:24 am »
ATTENTION ALL MAVENS AND ADMIRERS OF SVR AND VANQUISHING THE DRAGON!
From here on out I will be posting in the On treatment category under Mavyret Treating the relapse.
 Of course I will return with updates as Tx. progresses over the next 16 weeks. Here is to all of My friends and Tx. buddies out there. Just took My first dose and hoping for the best! BACK ON THE CRAZY TRAIN BOYS AND GIRLS ;D ;D ;D

How do You tell the difference between oral and rectal thermometers????  BY THE TASTE! :) Later guys!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

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  • SVR to all and to all a good life!
Re: The Return of the Beast!
« Reply #112 on: October 29, 2018, 08:04:41 pm »
  Just getting settled down after 1st day of Tx. and doing some thinking. Learned alot about self advocacy here in the past , and something just dawned on Me! It was I who brought it to the attention of the Med. Asst. that in My case Tx. called for 16 weeks Rx. not 12 weeks. :o ??? Apparently I did learn something from You guys after all. ;D ;D ;D
  Still trying to find any studies that pertain to My situation ( post SVR12 to 2-3 years, for Harvoni Tx. that are at least semi-current-like 2015 to present ) Have not found any info. or ongoing studies.
  If any of You have any info. or find anything , please drop Me a line on the Forum or by PM. Also , have e-mail available if needed.


WHAT IS THE DIFFERENCE BETWEEN A GENERAL PRACTITIONER AND A SPECIALIST????? ONE TREATS WHAT YOU HAVE, THE OTHER THINKS YOU HAVE WHAT HE TREATS! ;D
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline lporterrn

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Re: The Return of the Beast!
« Reply #113 on: October 30, 2018, 12:49:51 pm »
 :) :) :)
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline slats1056

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Re: The Return of the Beast!
« Reply #114 on: November 17, 2018, 11:20:17 am »
  Good Morning Everyone,

      Have 2 out of three family members tested for My peace of mind and to eliminate possible causes of re-infection as opposed to relapse. One has come back negative and one is awaiting test results. The third is yet to be tested , that will come in the near future. Still have not come up with any causes for re-infection as of yet.
   Tomorrow will be end of week three of sixteen on Mavyret Tx. , going in Monday to pick up second four weeks Rx. from Docs' office. So far , knock wood , Tx. has been rather anticlimactic as far as to side effects. A few headaches , upset stomach , and some joint pain that has worsened a little. All manageable with Advil and visits to Chiropractor and massage therapist. I have noticed a little bit of a feeling of being spaced out at times (not at all like brain fog) and forgetfulness. But as the keep telling Me -- You are getting old after all-- LOL , thanks for the reminder. I was trying to forget that!! ;D All in all , Tx. is going good. Just had blood wok done at two weeks to make sure all is O.K. with the Meds. not causing any problems as far as body functions. Go in for blood draw at the end of week four for full Hepatic panel and viral load check.

 ME? CRAZY? I SHOULD GET DOWN OFF OF THIS UNICORN AND SLAP YOU!

73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline KimInTheForest

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Re: The Return of the Beast!
« Reply #115 on: November 17, 2018, 12:25:10 pm »
Glad the treatment if going well!

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 slats1056

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Re: The Return of the Beast!
« Reply #116 on: November 26, 2018, 10:12:17 pm »
 Hey Everybody,

    Just thought I would check in. Just finished week four on Mavyret and went for My blood draw today. Everything seems to be going well with only minor Sxs. so far. Keeping My fingers crossed for the next twelve weeks of Tx.  Still working on eliminating relapse scenario of possible reinfection by family member. My ex has been cleared , one kid waiting on Lab results and one yet to be tested. Everything else has been ruled out. Hope everyone is doing well.
         
                                                            Tommy

 WHEN SOMETHING GOES WRONG IN YOUR LIFE , JUST YELL "PLOT TWIST" AND MOVE ON.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline lporterrn

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Re: The Return of the Beast!
« Reply #117 on: November 27, 2018, 11:05:54 am »
Hi Tommy,
I really appreciate you checking in as you've been on my mind. Also, I love your 'plot twist' tag line - I'm going to try that.
Hope there aren't any more plot twists in your life for awhile!
Peace,
Lucinda
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline slats1056

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Re: The Return of the Beast!
« Reply #118 on: December 01, 2018, 07:12:39 pm »
 Hi there Lucinda!,
  Thanx for thinking about Me. It is truly a rare occurrence when total strangers are concerned with Your well being. You my dear are an anamoly and a treasure to boot! ;) Been doing pretty good and settling into Tx., waiting on four week Lab results. Go in Tuesday to the Gastro.  Set up My patient portal Friday but, no info. posted as of this afternoon.
  I hear You about the plot twist , had more than My share lately! :o ::) >:( BTW, It has been a long time since I have been PEACED ON!!! ;D ;D ;D ;D LMFAO! Hope You are doing well, talk with You later. 8) 8) 8)

                                                  Tommy
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

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Re: The Return of the Beast!
« Reply #119 on: December 03, 2018, 10:43:14 pm »
 I found a reference to SVR24 that I posted April 15, 2016. I am trying to locate Dr. notes and lab results to verify it!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline lporterrn

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Re: The Return of the Beast!
« Reply #120 on: December 04, 2018, 05:20:54 pm »
That may be quite helpful Tommy. Thanks for your persistence!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline slats1056

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Re: The Return of the Beast!
« Reply #121 on: December 10, 2018, 07:25:45 pm »
  Got test results back for My son, NEGATIVE for HCV! That makes two out of three family members testing negative ( My ex. and my son ) Daughter will be tested after the first of the year due to work schedule and travel. So far that is a big load off of My mind for sure!

                                                  Tommy
 
  DEAR LIFE , I UNDERSTAND VERY CLEARLY THAT YOU ARE NOT FAIR SO YOU CAN STOP TEACHING ME THAT LESSON!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline lporterrn

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Re: The Return of the Beast!
« Reply #122 on: Yesterday at 11:38:24 am »
Sweet!!!!!!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

 


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