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Post Info TOPIC: Hi from NYC
Huey


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RE: Hi from NYC
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Don't think twice about it.  I got mine from my mother. This does happen. Get the Children tested and if + then find out the Geno-type/



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
tgcd78


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This is very interesting.  My Husband wants to test the children, I don't want to.  I think at this point, especially since I have reached UND viral load and am aiming towards SVR it is wise to know.  Their cuts and scrapes could get me reinfected if they have it.



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Female 35, Genotype 1a - Completed the OPTIMIST clinical trial - sovalid (400mg)/Olysio (150mg) |  Starting VL 8mil, 3 day VL 300, 1 week viral load UND

SVR - November 14th. 2014!!!
Turnsit


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Hopefully it will happen, good luck...



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A. M. Turner
dianna


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Hello A.M

So glad you are doing well...I wish I could get my hubby onto them asap this way he would be rid of this horrible virus.



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Dianna
Turnsit


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Yep I too am on these drugs, they are remarkable! I am on the 12 week and I have finished 4 plus weeks...



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A. M. Turner
Isiscat2011


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My PCP's daughter had blood transfusions when she was very young.  This was before hospitals were closely monitoring their blood supplies for hepc.  He decided not to test his daughter for HCV until she turned 18.  His reasoning was that her tx options were bleak regardless of the test results.  The all orals may change all that.  I don't think they have been tested on juveniles yet but we shall see.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Tig


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Hi T78,

Just wanted to let you know that if you want to test your little ones, they have fingerstick tests now that can be done in a matter of minutes.  They test for the antibodies and are very simple and accurate. Here is one example of that test.

http://www.orasure.com/products-infectious/products-infectious-oraquick-hcv.asp

Tig



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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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tgcd78


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Hi Mike,

I just replied to a thread of yours, and if you PM me I will give you some info in confidence. If I can help anyone I will!

I do have children and no they have not been tested. What I have been told is that these days the risk of transmitting HCV to your children is quite low and if they do have it they tend to fight it better. So the virus stays dormant in their little bodies. I cannot get my little ones to sit still to get enough blood taken and their doctors are not worried at the moment. When they are in their teens, I will have them tested, or as soon as the doctor suggests they should.

I am on week three of the Sovaldio/Olysio combo and happy to say that at 1 week I am already Undetectable. I'm not celebrating yet but at least right now, my liver is getting a little break. I started 8 MILL viral load, went down to 300 at 3 days, and UND at 1 week.

Thanks,
TC

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Female 35, Genotype 1a - Completed the OPTIMIST clinical trial - sovalid (400mg)/Olysio (150mg) |  Starting VL 8mil, 3 day VL 300, 1 week viral load UND

SVR - November 14th. 2014!!!
Mike716


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Hi, tgcd78.

I'm a new member of the forum, too. And, like you, I'm a New Yorker (Queens).

You were really lucky to get into the Optimist trial. I was following it on clinicaltrials.gov for months and applied through the linked website as soon as it said that recruiting was open, but I never heard from anyone and now it's closed.

There wasn't any way to find out who's doing the trial, so you really were very lucky that your new hep-MD was able to get you in. I won't embarrass you by asking for his/her name. I'll just take the knocks, as I have been doing for six years (diagnosed in 2008, still Tx-naive).

I think you're right about the 8-week arm. Kinda risky. But the trials at the NIH in Washington, although not of the same meds, are curing people with as little as six weeks of therapy. Since the NIH isn't a pharmaceutical company, they're able to experiment with whatever combinations of meds they want to.

Looking forward to hearing more about your condition (genotype, fibrosis stage before starting therapy, etc.) and your progress during the trial.

I hate to bring up a sore subject, which I notice nobody else has mentioned, but have your children been tested for HCV? Vertical/congenital infection is one of the ways that HCV can be transmitted, I believe, so maybe they should be tested.

Good luck with your therapy. I'm sure you will beat the virus.

Cheers.

Mike



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70-year-old male. Diagnosed HCV+ in 2008 with geno 1b. 2008 biopsy: A2/F1. Now F2+, with platelets down. No insurance, so applied for Sovaldi and Olysio patient assistance. Trying to get into a trial for 5 years with no luck.
Turnsit


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I too am on TX with no Riba. I am on Solvaldi and Olysio and they are easy to tolerate and I am getting great results after 3 weeks, 9 to go! The one hard thing about this TX is Olysio  is light sensitive so staying out of the sun is a must, it can make me itch madly plus it can increase or decrease the release amounts of this drug. No going to my beaches on the island or cycling during the day but no complaints. I was on interferon and riba for a year in 2004, now those were the hardest drugs I ever did in my youth. Very thankful for this TX. 



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A. M. Turner
tgcd78


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Thanks for the warm welcomes! I am on the 12 week arm. Very thankful for that as well. 8 weeks, though it may be sufficient, doesn't seem long enough. I feel fortunate to live near NYC where I am surrounded by amazing doctors and opportunities. I switched stomach doctors out of pure convenience and my new doctor got me on the trial within a few months. I wasn't even thinking about treatment to be honest. Talk about luck!

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Female 35, Genotype 1a - Completed the OPTIMIST clinical trial - sovalid (400mg)/Olysio (150mg) |  Starting VL 8mil, 3 day VL 300, 1 week viral load UND

SVR - November 14th. 2014!!!
OldenSlow


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Welcome from me as well, tgcd78. Happy to have you aboard. Much interest in those trials, given the 8 week arm and no Ribavirin. Do post back with as much detail as you care to share. Best of luck to you.

wayne



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
Cinnamon Girl


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Hi tgcd78, welcome and good to have you with us! 

Great to see you`ve got onto the Optimist trial...I`m also optimistic for you!  You are so right about the advances in treatment since you were diagnosed and you were wise to wait for the opportunity to do an `all oral` treatment.  This is an excellent drug combo and you should do very well on it.

Here`s a link to the details of the trial as published on the ClinicalTrials.gov website...

http://clinicaltrials.gov/ct2/show/NCT02114177?term=NCT02114177&rank=1

I see there are 2 arms to the trial, one of 8 weeks and one of 12...which arm are you on?

Thanks for introducing yourself here and by the way, we have a section for people who are on clinical trials (`Clincal Trial Participants`) so please feel free to start another topic there. 

We`ll look forward to following your progress!  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.

 

 
Isiscat2011


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Welcome tgcd78:

What a great name for a trial, right?  That is a good combo.  Quite a few members here are on and have completed the Sovaldi/Olysio combo so you can expect lots of guidance on your journey. 

How many weeks are you on?  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
tgcd78


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Hello!  I'm tgcd78.  I'm on day 8 of the clinical trial OPTIMIST taking once a day Sovaldi (400mg) and Simeprevir (150mg).  I feel so fortunate to be on this trial.  I found out I was Hep C positive when I was pregnant with my first baby in 2008.  I may have had Hep C all my life but never tested until then.  I wasn't ready for treatment then because I knew I wanted to have another child.  I had my second child in 2012 and since I was first diagnosed treatment has come SO FAR.  I am hopeful of my future, I am feeling great, and optimistic, just like I should be on this trial!

I am interested in all of your experiences and look forward to learning about how other people live with Hep C.



-- Edited by tgcd78 on Tuesday 3rd of June 2014 03:06:19 PM

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Female 35, Genotype 1a - Completed the OPTIMIST clinical trial - sovalid (400mg)/Olysio (150mg) |  Starting VL 8mil, 3 day VL 300, 1 week viral load UND

SVR - November 14th. 2014!!!
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