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Hep C Discussion Forum -> Post Treatment -> 2 Years UND Merck Trial
Post Info TOPIC: 2 Years UND Merck Trial
Millercollaborative


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RE: 2 Years UND Merck Trial
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Hi Suzie, so nice to hear how you are doing.  I'm only a few years younger than you and started on my BM trial about the same time you began the Merck trial - we are both 2 years virus free.  Sorry to hear about your friend, and also your medical problems.  This growing older stuff is pretty undignified!  It was pretty exciting to read about your liver regression!  How were they able to judge?  

 

Karen



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GT 1b, VL5Mil+ when diagnosed in 2012, acquired HCV 1970; BMS 3 drug clinical trial 2/13, und 12 weeks post treatment, UND 24 weeks post treatment; UND at 18 months, UND at eot + 2 years. Still UND at +5!
Matt Chris


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Hello Suzie

Welcome back and thank you for updating your status. Its great to read of your continued healing & health of your liver. Indeed you are an inspiration to all of the patients that have Hep-C that think they are to old to be treated.

Sorry to read about your friends death while on "Harvoni" this is not the first incident that we have heard about someone dying of heart issues while on treatment, hopefully it will get figured out for those who are at risk.

matt 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Gracie


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Your a role model for us all! Tough as nails and sweet to boot! And back to F2-F3!!! That's exactly the kind of results us F4's love to hear! 

Great to hear form you! :)



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
mallani


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Hi suziq,

Great to hear from you. You're still our oldest member and you make me feel younger. I hope I'm as good as you at 81. Best wishes.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
wmlj1960


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Hi Susan.

 Thank you so much for stopping in. I'm glad your possible negative health issues have turned out to be nothing you can't deal with. It is very encouraging for those of us who are still battling the dragon to hear success stories like yours.

I'm sorry to hear about your loss of your friend. Barn work is quite a chore, especially for someone actively fighting for their freedom from this nasty virus. My unhealthy sister has a horse farm and I often worry about her pushing herself more than she needs to.

Please continue to stop in when you get time. It's always a pleasure to see you here! smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Tig


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Hi Susan,

Hello, it's so good to hear from you! For those of you that don't know Suziq, she's been with us for years and was involved in some of the early Merck trials that have lead to the newest protocols. She achieved SVR as a result of her willingness to pioneer those new treatments. She is one of the most kind and helpful people you'll meet here. Please give her a shout and say hi!

Congratulations for reaching year number 2 and still maintaining that SVR! Of course that has never been in doubt, but it's still nice to see it in writing. You worked hard to get there and I couldn't be happier for you. It sounds from your post that you've been poked and prodded from just about every angle, but it sounds like you're doing very well. I have wondered more than once how your pancreas problems were coming along. The last I remember, there was a serious concern about cancer and that worried us all. I'm so glad you mentioned it was a benign cyst, whew!! I know that must've been a relief. The reduction in fibrosis is amazing! That's encouraging to hear and is music to the senses!

I'm saddened to hear about your dear friend and her passing. Please accept my condolences. Working in an environment like that would be hard on anyone, especially someone undergoing treatment and awaiting transplant. It sounds like she didn't let anything keep her down.  I'm so sorry for your loss.

Thanks for checking in and giving us the good news regarding your continuing good health. You never let that pesky thing called "age" keep you down before, no reason to start now. You're a shining example of what determination is all about. Good luck Susan and do keep in touch. smile



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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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suziq


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Well, it has been over 2 years since I've had Hep C virus coursing thru my body.  Finally Merck will be getting its' FDA approval in Jan 2016. 

My stomach pain has continued since my trial.  My labs are fine.  I've had several tests in the last six months.  Had one colonoscopy, two endoscopies, a heart stress test and several ultrasounds for possible HCC (I was cirrhotic).  Had a small pancreatic cyst (not cancerous) six colon polyps (not cancerous) and the stress test was because my gastro wanted to check my heart prior to anesthetics for tests (due to my age).  It was also fine. My trial coordinator said my cirrhosis has become fibrosis stage 2-3. 

The treatment did not stop my aging--which is a disappointment LOL.  I have no idea how I am supposed to feel at 81.  I am able to maintain my life.  I do tire more easily than several years ago, but think that is normal for my age.  Had the last of my teeth pulled 2 weeks ago. That hurt.  Five teeth broke off during treatment.  Guess I am getting younger--I don't have teeth and, occasionally, pee my pants. 

Lost a dear email friend this last summer.  We talked almost nightly for seven years.  She was on a transplant list with decompensated cirrhosis.  She was also in the middle of treatment with Harvoni.  Have no idea what happened.  I did notify her transplant doctor.  According to the little info I could get, the cause was supposedly heart attack.  She was feeling fine the last time I talked with her.  She was found outside cleaning the barn.  She was just a few weeks shy of her 62nd birthday.  Don't know if Gilead was contacted or not.  She had not ever mentioned heart problems to me, so I wonder. 

So, life just goes on after treatment.  Aches, pains, etc, but nothing dramatic.

Just wanted to check in and to thank everyone who has helped over the years.  Hope all clear as easily as I have.

Suziq   



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Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR
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