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Post Info TOPIC: New to the site
SwimmerChic


Member

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Posts: 25
Date:
RE: New to the site
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Hi Lisa & Matt,

Thanks for your kind words.  And sorry for the intro rant...guess I've been holding in more than I realized for the last year or so.  I'm so excited to find this site.

It reminds me of a tapestry, rich with the colours and textures of life and knoweldge. Everyone has something of value to add, whether it's their personal experience or knowledge about the disease or various drugs or trials, or something humorous for those days when a smile is really needed.

I really like the global feel of the site. And I agree, I so admire the people who are blazing the way for those of us who follow behind. They have gone and are going through some extremely tough battles and I applaud their courage and strength.

The new doc didn't mention Turquoise II by name, but he talk about the results coming out of the Abbot trials. Two or three times. He seemed very impressed with the Abbot results because the the results are in US patients whereas the Gillead results were in NZ patients (who are generally healthier than US pts, according to him) and since I'm a US pt I guess that is more important than I realize. I'll be watching your posts closely, Matt, and hope you do really well.

Again, thanks to you both for your warm welcome!



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57 year old, Genotype 1a, IL28B TT, 883,000 VL (5.95 Log IU/mL), F0, AST 46, ALT 47,
Dx 19-Apr-2013
Harvoni started 06-Feb-2015

09-Mar-2015 labs: VL <15 (NORMAL), AST 18, ALT 13
Loopy Lisa


Guru

Status: Offline
Posts: 895
Date:
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Hi SwimmerChic,

Sorry to hear about what you went through, some people need to consider why they went into medicine in the first place!

You can find pretty much everything here, and you find yourself spending time reading personal stories and research information. I found this site to be not only informative, but very human. There are fun personalities with a great mix of humour and good will.

There are people from all over the world and it is good to hear how people are doing on trials. Since the new meds will be here in a short time I too am waiting to treat, it is really tough for people the interferon injections and you cannot help but admire and commend these people on their strength and will power to see it through to the bitter end.

Anyway, I hope you enjoy the site as much as I do. x

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Matt Chris


Guru

Status: Offline
Posts: 1782
Date:
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image.jpg

Hello Jenn and welcome to the forum

I am really impressed with your story, very happy that you found a Doc that deserves your respect and viewpoint.

There are many here on trials and regular treatment that are there own best advocate, being well informed better that most GP's.

Your right, the all Orals will here in the USA sooner than later, I remember telling my Doc that it's the race for the $100,000 customer by Big Pharma.

If your interested in being enrolled in a study, in most cases you have to go hard after them.

I am in the Abbots Labs Turquoise II Trial

You will find the forum members are willing and ready to help with all things HCV and show great care in the process.

Hoping you find your way

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! 
SwimmerChic


Member

Status: Offline
Posts: 25
Date:
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hi everyone,

I was diagnosed a year ago January. For the past few years cold weather has hated me more and more. Just happened to be at the dermatologist with my husband during a flair (my term for an episode of purpura, inflamation, low grade fever, difficulty breathing). Anyway, the derm 'knew' exactly what I had (he was wrong), but (luckily) ordered a zillion and three tests. Was I ever gobsmacked when he called to let me know I have hep c and btw he was cancelling my follow up appointment because he was going to be out of the office.

Went to see my primary care doc, who ordered genotyping and some tests for mutation. He didn't order IL-28. GT = 1a. No mutations in the tests they ran. VL = 318,000.

Saw a GI doc who basically said the only possible way I got this was from IV drug abuse...and btw get a liver biopsy. I asked why since I was going to wait for a better response rate before treatment. The 100% SVR in the 9 pt. Gillead trial was in the news so I'd decided to stay naive until there was more info available on the newer drugs.  He pretty much told me I wasn't going to wait and was going on interferon. Skid marks on my tongue but I was rather proud of myself for leaving his office without telling him he was a real douche.

Once the Gillead drugs got to Phase 3 and results for GT 1 stayed impressive it seemed like a good time to find a GI doc I could respect.  Took 5 months to get in. Today was the day. Met the new GI doc. Was impressed with his manner & his knowledge & that he told me to continue to do my research and learn as much about this as I can.  He also told me I've probably had this since 1963 when I was badly burned and had multiple transfusions and surgeries. Which would explain a lot, actually.

I don't think he's going to put me in a trial...bummer. But he did say curing me was a matter of when not if. Yes, the difference between even 99% and 100% could be me, but the cure rates are really impressive. The new drugs are worth waiting for. We'll see what the new bloodwork shows, but I'm actually cautiously optimistic at this point. And, he did get me an appointment with a rheumatologist for the vasculitis symptoms in the interim.

I've been researching on and off for a year now...today was the first time I found this site. Odd how that works, eh? I needed the info that's here especially today, and the site pops up in the search engine. Have been reading for hours. Didn't want to be too much of a lurker, so thought I'd say hi. And thanks for all the great info. I'm sure I'll learn a lot here and I'm looking forward to it.



__________________

57 year old, Genotype 1a, IL28B TT, 883,000 VL (5.95 Log IU/mL), F0, AST 46, ALT 47,
Dx 19-Apr-2013
Harvoni started 06-Feb-2015

09-Mar-2015 labs: VL <15 (NORMAL), AST 18, ALT 13
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