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Hep C Discussion Forum -> Post Treatment -> Five Years
Post Info TOPIC: Five Years
5-1-18


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RE: Five Years
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oh yea scruffy, that's a sad way to go. she prob got it from a tattoo since there were no good regulations back then.

i remember being diagnosed nonA/nonB , i just decided it was non A and was gonna be ok.

 



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Scruffy


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yes 5. Way back 30 years Hep C was called terminal Hep they didn't give it a letter. She said when her doctor told her he had tears in his eyes and said she was terminal.

( his way of saying she was going to die from it) About ten years passed it progressed to the point of her needing a new liver. She had the transplant just in time. They showed her liver to my 

daughter and said she would not have made it another week. The liver actually was to big but they stuffed it in and used wires to fit it. She later cleared the virus with pegasys. I'm guessing

over time the anti rejection and pain meds made it easier for the hep to come back. But all in all she owned a tattoo parlor and with not enough "life style change" its possible she became

infected again. She cleared it a second time with the new 8 week pill. By the time they detected cancer in her pancreas it had already spread to her liver. They did start her on chemo but

stopped it was to late. I don't like thinking she was reinfected by her own doing as I find it impossible to feel sorry for some one like that.

They have come a long way with hep c treatments we are a lucky bunch here.



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
5-1-18


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scruffy, did they even test the liver for hcv 20 yrs ago before the transplant? i wonder



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Canuck


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Hi Scruff,

ah, so I see better now. I did not know of all of this info before (details of your relationship). 

20 years ago people were not surviving transplants as they do now.

I recall Sailing Shoes posting info about his doc (one of the transplant surgery pioneers), the stories and hx of his doc highlighted many failures that occurred in earlier days.

So, I don't know about her surgeon, but just that she got her liver during an earlier era, would have made things dicier survival-wise, I think! I guess she was lucky to have survived the surgery and to have lived another 20 years.

Interesting and curious that she got hep again about 5 years ago, that's late in the game, being that she had been about 15 years cured? - so, are you surmising she got a new case of hep, versus a "return" of her old hep? 

It has been quite the year for you then, dealing with your dear Mom passing, and with your ex-wife passing as well, and all that that entails.

Hope you are doing OK.  C.



__________________

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)
Scruffy


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It was my ex wife Canuck. I was only married for 2 years back when I was 22. So we had been divorced for 44 years, I do have a daughter with her. 

She became like that sister you only hear from when its to there advantage. The doctors were amazed she lasted 20 years post transplant as the doctor that did 

her surgery lost her licence because she botched so many transplants. From what my daughter told me my ex wife was one of only a couple that didn't die during 

or shortly after surgery.



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Tig


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Hey C,

Scruffy mentioned that it was his ex-wife had passed following the HCC Dx. I’m sorry that so much happened, so often. The stress can be extreme. It’s nice to have everyone here to talk to when needed!



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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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Canuck


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Oh dear Scruffy,

I am so sorry about the loss of your Mom and your wife. Hard stuff you are going through. I wondered how your Mom was making out, whether she was still at the facility, or if maybe she had passed. I do recall many details that you have provided previously, about your Mom when she was at home and then later "at" the home, and details on other things - and yes, you certainly did have a lot you have gone through with your Mom, and with your prior treatments, and all! You were a good son to your Mom. For some strange reason i do not seem to recall much if any history on your wife, so the news of her death I was a little shocked to hear of, of her long hx and what all has happened to her ... funny, I am still just kinda drawing a blank on remembering anything we might have discussed about your wife before, surely I must not have read all of your old (older) posts where you must have spoken about her at length. Obviously I was/am missing a great big snippet of your life hx. In all our recent chats about your Mom, the storm, day to day life details, and other subjects entered into, throughout, for some reason I was just not imagining you with a partner there. Amazing for me to know her hx too. Wow, a 20 year old transplant!

I know CG can relate to what you are going through, she has shared many details of the past/the difficulties she and her husband went through.

I am so sorry for both these big losses you have gone through. Hope you are OK. C. 



__________________

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)
Iris Dragonfly


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Scruffy DUDE !!! Many congratulations.   Now continue to rock on!!! biggrin             

 

Sorry for your losses, You've had a rough year, hugs my friend.

BB, Iris

 

@Jill ...Baby soooooooo cute



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Cinnamon Girl


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Thanks Tig and ps!

Yes, Oscar seems to be more active every time I see him... today I watched him walk 5 steps on his own!  I need to get into training, asap! biggrin



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
polosilver


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Congrats Cinnamon Girl and Scruffy on adding all those years to your SVR and being Sr. Club Zero Members!

Even through some rough times Scruffy, you shine with that smile..how encouraging, thanks for sharing.

CG - Tig is right better get some new running shoes...lol!! Oscar is a cutie and happy looking lad...I love that name! Oscar...

 

ps



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New: Hepatomegaly 07/30/2019, AST 29 & ALT 15

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND.

Club Zero Member.

 
Tig


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Jill,

Oscar is a handsome lad! He’s so big since I last saw him. The next two years will be a challenge. That’s speaking from the grandparent perspective! Get some good running shoes!



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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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Tig


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Thanks for sharing, Scruffy. I know you’re resilient and you have weathered more than enough storms to prove it. After the things you’ve dealt with over the years, I’m going to vote for more of those smiles in the morning. You deserve it!

Take care and stay in touch. I love it when we can get together again and just talk. It helps us all.



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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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Cinnamon Girl


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You`ve really been through it, Scruffy, and I`m so sorry about what happened with your ex-wife.  I lost my husband to cancer of the liver, and I know how horrible that is. I really feel for you with what you`ve been through.

You`re a good man and you`re a survivor.  Makes you appreciate every day, and you do.

And yes, I`m very happy with my new role in life...  smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Sticker


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You have had a tough year for sure Scruffy. Enjoy that smile in the mirror.



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52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 
Scruffy


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Thanks all

I guess I'm going to have to have a yearly ultrasound for the duration Doc will probably add the blood test also. The chances of it coming back are slim to none at this point.

My ex wife was one of those unlucky people. She had a transplant maybe 20 years ago, they treated her and cleared the virus but it returned about 5 years ago. She was re treated with the new meds

was cleared again but passed away this year from liver cancer that spread. No doubt the post transplant meds weakened her system. My Mom also passed this year. When I look back I don't know how I

took care of her while on the old treatment. I knew this day would come so I never hollered at her or let her see me loose my temper with her. ( was hard on the old meds she had dementia). 

Now when I wake in the morning I smile at myself in the mirror.

 

C... I bet your a happy Grammy



-- Edited by Scruffy on Thursday 15th of August 2019 06:56:15 AM

__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Cinnamon Girl


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Hi C! Thanks.  Hope all`s well. This is my little grandson, Oscar, he`s a ray of sunshine in my life!  He just turned one year old...

here`s a couple of pics... smile x



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Observer


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Yay Scruffy



-- Edited by Observer on Thursday 15th of August 2019 04:18:34 AM

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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Canuck


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Hey! , 

Scruff AND CG! Hi to both you two and congrats on 5 years, and 8!

We see CG's brand new kin here, how's your kin doing Scruff? If you have some time fill us in on you and yours.

Nice to see your posts here. : )  C.



__________________

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)
Sticker


Veteran Member

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Thats awesome Scruffy! Thanks for providing inspiration to others!

__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 
Cinnamon Girl


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Hi there, Scruffy!  Congrats on your 5 year result, always good to know!

It`s been 8 years since my SVR, and as far as I know I`m still clear.  I was last tested about 3 years ago, at my request, and just for reassurance. I`m wondering too how long you`ll be having yearly tests?

Good to see you here, hope life`s treating you well! smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Tig


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Hey Scruff,

Good to hear from you, Brother! Congrats on the results, those are always a welcome sight. My 6 year is coming up in Dec. We’ve certainly witnessed some changes in treatment and success rates in our time. The ease of Tx is so improved. I wonder what could be on the horizon. Most likely vaccines as a preventative measure and even easier courses of antiviral drugs. Whatever it takes. 

Be well...

 



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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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Cheddy


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Well, that's reassuring! You got an A on your test.  Do you get tested every year?  

I contacted my hepatologist to see if I should be retested.  She said that I am cured and don't need to continue testing. 

It's good to here from you, Scruffy.  I'm glad you are free.

 



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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

 
5-1-18


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awesome !!!



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Scruffy


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Just got my yearly blood tests back. Still undetectable five years and counting.

i feel pretty good.



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
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