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Post Info TOPIC: Update on Wife
JimmyK


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RE: Update on Wife
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Yup saw it and responded.

Great minds and all.  LOL

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Shadowfax


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JimmyK wrote:

The immune system may be weakened or overactive following treatment. At least that is my theory. In both cases, it would have an effect on how one feels.

Personally I don't see how it would be possible to fight a virus for years and years, suddenly introduce strong DAA's which rid the body of the virus and then come out feeling "normal" in a short period of time. The immune system has taken a beating over a long period of time and must adjust to the new found freedom.

Makes sense to me but I fix Airplane Engines and not people. LOL

 

JimmyK 

 I just wrote something about this in another thread so I will post the link here. It was the one on After Sovaldi/Harvoni since I had my appointment this morning with my specialist and a bit of this was discussed.

 

http://hepcfriends.activeboard.com/t61071871/after-sovaldiharvoni-treatment/?page=1#lastPostAnchor



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Tig


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This virus has the ability to impact us in a myriad of ways. Those here that are fortunate enough to be diagnosed early have the greatest chance of sustaining the least amount of physical and emotional damage. The rest of us with one to four decades of chronic infection are another story. This all depends on actual damage though and some people experience varying degrees of it. There are few explanations of why it affects people differently, certainly genotype and genetics play a role. I do believe that most chronically infected HCV patients are going to experience some extra hepatic manifestions (physical, emotional and metabolic problems, etc).

I agree with Jimmy. Most of us have been assaulted by a nasty virus for decades. The first step to greatness is correcting the wrong. We have either done that or are waiting. Once the virus has been put in it's place, we can look forward to a healthier future. That doesn't mean perfect though, just better. It took decades to damage a lot of us and it might take a few years to achieve the goal we seek.

Look at recovery positively and don't make unreasonable expectations. It's fine to strive for those better days, just don't expect them to happen tomorrow. Be realistic and expect good things to come, because they will, but on their own schedule, not ours.

You will begin to notice the improvements and when you do, celebrate! Syd, you're experiencing moments of joy and happiness that haven't blessed you in years, celebrate it! If  speaking to someone about the emotional and physical drain you have experienced, by all means do it. I have spoken with a psychologist or two, discussed the cognitive problems and found some solutions and ideas to approach things with a different attitude. It can help you find a different means of approaching your goals. I have yet to find anyone that can make me feel 25 again, but we can work together to make ourselves happy right where we are!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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JimmyK


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The immune system may be weakened or overactive following treatment. At least that is my theory. In both cases, it would have an effect on how one feels.

Personally I don't see how it would be possible to fight a virus for years and years, suddenly introduce strong DAA's which rid the body of the virus and then come out feeling "normal" in a short period of time. The immune system has taken a beating over a long period of time and must adjust to the new found freedom.

Makes sense to me but I fix Airplane Engines and not people. LOL

 

JimmyK 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Sydhanrahan


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Hi all,

interesting to compare before, during and after. Before treatment in December  last year I had acute fatigue and chronic pain in my legs and back. On RIBA I felt increasingly tired, antisocial, emotional, aggressive, sad, sad, sad. That was for 12 weeks. The 12 weeks more of Sof/Dak were improvements in mental health as RIBA seeped away but the pain increased. 

I do have more stamina now. The pain is just as bad. Specialist puts it down to Hep C rather than treatment but if that is the case then why has it worsened as the virus leaves my system.? I bought a brace for my right wrist today as it just swelled up before EOT and is very sore. HOWEVER I do feel that the black dog who has padded alongside me my whole adult life, is occasionally taking time off to go have a sniff at the scenery. I feel happy sometimes!!! do others relate to how weird and scary it is to admit that?? 

I think when you are chronically worried and depressed you develop negative thinking patterns which are so familiar you don't even realise how constant and repetitive they are. Maybe I need some treatment to help me recognise and break through them, but even being able to recognise that it was probably a chemical imbalance rather than reality is new for me. Is it called cognitive behavioural therapy?? 

It so helps to have you all stumbling, strutting, staggering and  skipping along this road with me. 

Syd. 

Xxxx

 



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
Pablito


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I can certainly relate to feeling better on treatment.

My thoughts on it are that..

a) we felt chronically rough for years with HCV and then our VLs drop really quickly with the DAAs and we feel better real quick, but then a few months down the line that good feeling is still there but we notice less in relative terms a bit further down the line as we get used to our new states

b) so these icky/toxic/dragging extra-hepatic symptoms of HCV go quickly but the liver damage takes time to heal.  The studies I've read report a one stage regression in fibrosis over a mean of 3.5 years

c) as you mentioned, the psychological impact of going through treatment is large and it takes times to get over this too

Anyway, it's all good really, it's just gonna take time!

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.
JimmyK


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Greetings my Northern Sister. :)

It's funny you ask because both Carolyn and I believe we felt better during treatment than since. Both of us are just kind of worn out from it all I guess. I did not recover much from my first attempted miserable failure and that one had me quite Ribarung. Jumped right on to another train and got kicked off half way to what I thought was my final destination. That's cool, I will just walk the rest of the way.

It's hard to really explain. Kind of like being in the fast lane, slamming on your brakes and then hobbling back onto traffic.

I think Carolyn was expecting to feel a lot better but I have tried to explain what I believe is a normal response.

We have had this Virus for decades. It replicates and dies off at an extremely fast pace. That means our natural immune system has had a heck of a battle going on for a LONG TIME non stop. Enter an extremely potent DAA alongside the immune system and suddenly things have drastically changed.

Then the Virus that had been there so long suddenly dies off but the DAA continues to bombard the system.

Then one day....silence. No more DAA and the remnants of the same begin to dissipate. The natural immune system suddenly looks around and wonders what the heck happened here?

All that so yea feeling a bit of the bla's for awhile I guess but personally I don't think that is surprising.

Dragon Slaying is a tough battle. I think we deserve to feel a bit like chilling some.

Carol was an F4 at the start of this. I believe the recovery time is perhaps better than a year in her case. I will possibly recover quicker but who knows after a double header with The Dragon it may take some time.

However, The Dragon is Dead. We will recover. He is dead. Thanks be to God. wink

 

JimmyK

 



-- Edited by JimmyK on Monday 29th of August 2016 05:03:25 PM



-- Edited by JimmyK on Monday 29th of August 2016 05:05:22 PM

__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Canuck


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Hiya you two,

Just wondering ... how Carolyn actually feels, now, and all along. With her lovely EOT+12 week result (and of course your stellar EOT+4 week), it goes with out saying about relief, happiness.

But I do wonder how she feels now. We recall her approach to treatment being hindered by fears, which she so successfully beat. But I do not recall much in the concepts of how she physically felt prior prior, during, or after "health-wellness-feeling-wise"

Does she say she feels "dif", improved, signs and symptoms, changes (other than labs)? Just curious.

Just so glad you two got cured.

I guess your EOT+12 comes in Oct? and her EOT+24 after that? smile C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Loopy Lisa


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That is great news, congratulations. Nothing like one burden off, just yourself to go now. These new treatments are a doddle to be honest. I just hope everyone can access them faster than later!!!



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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Sydhanrahan


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So happy for you jimmy. We all know you have always put Carolyn's health a long way further up the priority pole than your own so this is sweet news indeed.

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
Canuck


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NOTHING is sweeter, than this! Love, C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
robertsamx


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Hi Jimmy, with a special Hi to Carolyn. It's beautiful when we put our wives first!  How could we get along without our better half first? They keep us in check, right us when we're wrong. It's only natural they should go first.  Congratulations Carolyn on beating this thing, and you Jimmy have no fear your right behind her.  Bob & Chris



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 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Cheddy


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Jimmy,

That's just thrilling. Please extend my congratulations for Carolyn.  I'm glad she got insured and treated first and that you are devoted to her wellness. Ain't love grand? 

As for your anxiety, well yeah, of course you had anxiety! Our viewpoints and our moods are magnified by this experience. For example, I just crawled across the Sof/Riba finish line, whimpering and desperate. In the rear view mirror, it's like I just sailed through it.  Not so. It just got better.  

One dragon, one elephant down.  You're it! 

Cheddy

 



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Shadowfax


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Wonderful news Jimmy not that we ever doubted it. You are next and then I will pose to you the same question you did to me? Then what will you do? :)

These good news posts just keep coming!

 

SF



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
JimmyK


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Thanks Wendy, I am looking forward to doing just than when she gets home.

Thank you very much Tig, that is greatly appreciated. The SVR in writing is in fact something I have to catch my breath over. I know about not having doubts but as time wore on, for some reason I fell short there. I did have doubts and quite a bit of anxiety when I should not have.

For me this was by far the biggest hurdle. I feel like an elephant just got off my chest. I believe I can easily face anything now. It is kind of strange but I have been doing a lot of strange lately. LOL

 

JImmyK

 



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Tig


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Congratulations is in order!! It's good to see all the numbers dropping into those normal ranges. The platelets are on the rebound, so she's going to start feeling better all the time. I know you're relieved to have her SVR on paper, even though I was sure it wasn't in question. 

That's what we call, "One down with one to go"...

 

 



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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wendyo


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That is terrific news Jimmy. Please give Carolyn a hug from me. 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
JimmyK


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Greetings,

Results just came in and Carolyn is UND at SVR12.

All blood work is within normal range.

Highlights:

Platelets are climbing were at a low of 147 and now 182.

ALT is decreasing nicely from a high of 68 now leveled at 17

AST is also on a nice downward trend. From a high of 69 she is now at 22.

Bilirubin Direct from a high of 0.3 now 0.1

Total Bilirubin from a high of 8.1 now at 7.5.

The rest simply looks great. God has granted my prayer to cure Carolyn first so I intend to now put in a request for myself. :)

Carolyn wanted me to be sure and tell y'all, and to thank you each for all your support. I would also like to add my thanks for the same.

 

JimmyK

 



-- Edited by JimmyK on Thursday 25th of August 2016 02:25:22 PM

__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
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