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Avatar universal

Need support

I have had hep c for 29 years have known for 8 yrs. After my DR. told me geno type 1a not cureable, i opted not to do tx. Now 8 yrs later had blood work done viral load gone up frpm 2,400,000 to 7,561,276. Now this Dr. (new one) says I have 60 percent chance tx will work. Do I want tx,?  NO, will i do tx? YES. I have such a good life now compared to 8 years ago, and I want to grow old with me husband! I am scared out of my mind, not just about the tx but also how much of a toll this is going to put on my marriage and the people around me.............. I feel so selfish for having this diease, and putting so many people through this crap...........Sorry yall just babbiling, need to get this out some where and no one to really talk to who understands....... Thanx
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1118724 tn?1357010591
To echo nygirl7. Step one. Have another biopsy. It was 30-35 yrs ago I contacted Hep C. I feel it might have been 2 or 3 years ago my liver went south decisively. Fatigue when normally I wouldn't have had it. Every summer it gets worse. Now I have End Stage Liver Disease. That's just to show how fast it can go bad. Of course we don't know where you are, but it has been 29 years ... sure results vary ... but this is your life .. Get the biopsy, if you are Stage 2 or 3, you likely can afford the year to wait ... IF those drugs come out in 2011 according to schedule. Otherwise you better visit the rodeo in town now, you don't know when or if the next one is coming around.

Wanting to not be sick with a very serious disease is hardly selfish, I think it's called normal.

and fyi I have the market cornered on babbling. I live in Babblon, I'm there now. So Welcome! :))
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Avatar universal
Completely agree with nygirl and the others.  For someone who has had Hep C for 29 years and had a biopsy 8 years ago, a current biopsy is definitely in order.  This disease progresses differently for everyone and the progressions speeds up some after approximately mid-forties.  8 years is a long time for the virus to have had a free reign to do it's thing without checking in on where things are at with a biopsy.  

Some are of the opinion that a biopsy isn't required if you do treatment and I still maintain that it is, because it adds knowledge to decisions you make about treatment as you go through it.

As for your 60% chance of cure, hate to rain on your parade a little bit but as a Geno 1, the chance of cure is closer to the 45% mark.  Having said that, there are a number of Geno 1's who have been cured.  What's important is to educate yourself about your disease and about treatment and make as knowledgeable a decision as you can.

Trish
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179856 tn?1333547362
AS I said earlier 8 years is much too long.  You need to make an EDUCATED decision and without this key piece of information you aren't.  

I'll leave it to one of the medical pro's to determine all the lingo for you that is not my strong suit (i'm hardly any doctor more like a hepc cheerleader really).  But remember the new meds 'MIGHT' come out in a few months or might not.  They will be an extra med in there that gives you more chances of side effects as well and also nobody knows what they might do to you in the long term.  They are still in trial so nobody has been taking them that long.

Get the biopsy so you know where you stand. You could have minimal more liver cell death or it could be vast.  You simply cannot know until you do.
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971268 tn?1253200799
Hi Val,

Your biopsy 8 years ago won't tell you what you need to know in order to make a decision about treatment, since you can't tell if or how much you may have progressed from that time. Your liver was looking good then, but there's no telling what the progression rate will be in any individual.

So, your doctor may well want you to have another biopsy to assess you liver health now.

If your stage of liver damage is not great, you will probably be a good candidate to wait for the new treatment.  Hopefully your doctor will discuss all this with you.
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Avatar universal
OK 8 yrs. ago biopsy says...."mild chronic hepatitis compatible with hepatitis c. No piecemeal necrosis present. " Then the histologic activity index says +0 peicemeal necrosis, +0 parenchymal injury, +1 portal inflammation, +0 fibrosis= 1/22.
Now if any one understands that please let me know because I sure don't. I didnt exactly have the best bed side mannered Dr. back then, and no insurance all through county then. I have Insurance now Thank God, and from what I hear of this new health care form coming up, what ever needs to be done better get done before it goes into to effect. Not starting any thing, it's just hear say.......Wait and see what  happens. If theres something else on the biopsy I didnt put down... I got a copy of the results from then, Just tell me.. thanx for the support and the help!
Val :)
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179856 tn?1333547362
For the few people like me who had a 'false pos' at EOT 4 but then apparently really SVRd in the next month I will always wonder if it was indeed that my immune system kicked in and killed off the remnant of whatever was in there after SEVENTY TWO WEEKS of tx.  Interferon may still have it's job to do and 12 weeks very well might not be long enough for it to train an immune system to take over and fight as mine appears to have done.

One would wonder if shortening treatment that much would create more relapses. I'd hate to be in the trial that finds that one out.
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Avatar universal
The early trials were all 12 weeks PI + SOC followed by 12 weeks SOC, as you say.
All I'm saying is that the results from those trials suggested that the RVR occured during the first 12 weeks, and the second 12 weeks didn't make a material difference to the results. Vertex We heard this presented at AASLD when the results were announced. Here's the kind of thing that was presented:

"In the treatment arms that included telaprevir, pegylated interferon and ribavirin, a high percentage of patients who had undetectable virus at week 4 and 12 developed a sustained viral response," said Dr. Geoffrey M. Dusheiko, Investigator for PROVE 2 and Professor of Medicine at Royal Free Hospital and University College London Institute of Hepatology. "If these results are validated in Phase 3 studies, shorter courses of treatment for a larger percentage of treatment-naive hepatitis C genotype 1 infected patients may be possible."

I'm not making a case that the SOC will magically become 12 weeks when the PIs are released. All I'm saying is that there are trial results that support a shorter tx than 24 weeks, and we are now seeing PI trials announced that are 12 week protocols.
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Avatar universal
I've got a sweet spot on my tennis racket but it doesn't mean I hit the ball or get it over the net every time.  :)

Trinity
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9648 tn?1290091207
I haven't seen any clinical trials that have produced SVR after a 12 week treatment. Yes, after 12 wks PI *and* 12 weeks SOC, but that's a 24 week trial. I don't understand how that could be considered a 12 week protocol.
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179856 tn?1333547362
Ooops I should have said what was your biopsy result?  You really do need a new one after 8 years. Just because it took say 30 years to get to stage 2 does NOT mean it will take another 30 to get to cirrhosis.  It could happen in just a few years - it is not linear in progression and the older we get and the more damage we have the harder the chance of success can be.

Helpful - 0
Avatar universal
The details of this particular trial are here:

http://investors.vrtx.com/releasedetail.cfm?ReleaseID=447807

FWIW, I treated in the first Telaprevir trial back in 2006. When the results were published, it was clear that 12 weeks was the sweet spot. Vertex talked about that quite a bit at AASLD etc.

Nothing is certain, so all I'm saying is that the chances are good enough to wait and see if you have the time.
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179856 tn?1333547362
What did your biopsy result say? I don't see that in here and that is the one piece of information that can tell you whether you do have time to wait and see IF the drugs come out in a short time or not. Nobody knows for certain when they will be available but all can agree that they are marvelous.

I would hate to tell you to wait if you are later stage of the liver disease damage progression.  While we are praying that these drugs do come out shortly - there is no guarantee that something won't happen to prevent it from happening and I would not just start telling everyone to wait for them with a blanket approach.

With the new drugs are shorter times with better odds but remember you are also adding another drug on top with it's own set of side effects too.

I had both geno 1A and also 1B and have been cured for over 3 years. I was a SLOW responder (meaning I did not get cleared until after week 12 but before week 24) so I opted to do 72 weeks to try to boost up my odds.  It worked.

EVERYTHING about treatment is a gamble.  Nobody can guarantee you anything unfortunately. Even with the new drugs on board the shorter time might not work where the 48 weeks of standard interferon and ribavirin do.

And please get rid of the feeling selfish - certainly you wouldn't feel selfish if you had cancer right? You are ill with a deadly disease - that doesn't put you in anyway in a selfish position........no way. (We do understand how you feel though believe me).

Good luck.
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276730 tn?1327962946
I have not yet heard of a 12 week protocol either ? Where did you see this ?

Charm
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184420 tn?1326739808
that is great news...
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Avatar universal
The 12 week protocols are what Vertex and others are shooting for with their PI drugs, based on the large data set compiled from their Phase 2 and Phase 3 trials. I'm not saying it will happen, but it looks entirely possible based on the data. It became clear as far back as Prove 1 that subjects who responded to the treatment did so very early in the dosing. Prove 1 was 24 weeks [12 weeks of Telaprevir + Pegasys + Riba] followed by 12 weeks of Pegasys + Riba. I believe almost all of the SVR cases had reached UND within the first four weeks of treatment.

For example, the recently announced Teleprevir + VX222 trial comprises four arms, each with a 12 week protocol:
"The randomized, parallel-group, dose-ranging trial announced today is designed to evaluate the safety and antiviral activity, including SVR, of multiple 12-week response-guided telaprevir/VX-222-based combination regimens."
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Avatar universal
Haven't heard of a 12 week protocol either.
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971268 tn?1253200799
I haven't heard of any 12 week protocol for Geno 1's.... it may be 24 weeks, though, if you get RVR.  And that could be another very good reason to wait and do the Telaprevir.
Helpful - 0
Avatar universal
You should definitely wait until the new PI drugs are available, which should be within a year. The progress of HCV is slow, so the wait should not put you at any increased risk unless you have very late stage liver damage. Get a biopsy to check that.

Why wait? The current SOC is 48 weeks of treatment that is rough on you and both scary and rough on your loved ones. The treatment protocol for Telaprevir is likely to be 12 weeks with a considerably higher probability of SVR [another dead dragon].

FWIW, I was Geno 1B with a VL of 24,500,000. I treated in an early Telaprevir trial. VL went to UND by day 15 of treatment in 2006. Still SVR. Its worth the wait for the shorter treatment protocol. Keep the faith, don't drink, eat well, and get yourself ready to kill the dragon next year.
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1156261 tn?1268360494
I was type 1 and txed 2 yrs ago.I am SVR now.I remember how intense my fear about TX was,most of that is fear of not knowing just how the TX and the result will be.Now its like a very long bad dream.It happened but its like it never did.Im fine now and life is even better cuz that yr sucked and I wont have another one like it.Just do it and get it over with.Tell your doc to watch your hgb and give you Procrite sooner than later.
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971268 tn?1253200799
Hi Val, and welcome!

I am of the opinion that you ought to wait for the new drugs, which are likely to come out next year  (unless you were to have a biopsy that showed you were very far along in terms of liver damage.) Your viral load is pretty much irrelevant -- a higher viral load does NOT mean you necessarily have much liver damage.

The reason is that the new treatment (which is the old treatment, peginterferon and ribavirin, PLUS a protease inhibitor, called Telaprevir or Boceprevir) will likely up your odds of getting rid of the virus from 60% to more like 80%. These new drugs have really been a big improvement and will give you the best shot of clearing the virus the first time.  It isn't much longer to wait.

Please do ask your doctor about this option when you see him on Monday!

Sounds like you have a lot of great things in your life now, and that will help give you the determination to beat this thing. Best of luck to you!
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Avatar universal
Thank you all for a warm welcome. As I said before I have known for 8 years, Had my liver biopsy then even had the prescritions in my hands( still have them) and after Dr. said that, I thought well whats the point in putting myself through ehll? So I opted out. I have since then lived as though I didnt have it, pushed myself regardless how tired I got and just hoped it would go away, I know "dreammer" and no, I have not drank or done any drugs!  I needed to go to the Dr for severe allergies, and she took 4 viles of blood and here Iam today. I have an appointment Monday with a Dr, who specializes in hep c and will be ready with a ton of questions for him. I have not heard of any new tx, have not kept up with it, but this weekend I will spend time researching, so when I go to dr monday I can get his oppinion. I am 48 years old, Have a great husband, 4yrs new. 2 grandchildren7 and 9, and a daughter. I know we are all in this together and I hope I can give as much back as I know I will get out of this forum. Thank yall
Val
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1233973 tn?1267735104
Hi,
I'm new, too.  Maybe we can help each other.  I work daily with people infected with Hep C and, due to my past, counted myself lucky to have 'dodged that bullet.'  Well, last year I got laid off and then got stupid and then got Hep C (just diagnosed).  Luckily, I got my job (which I adore) back and cleaned up.  I am scared out of my mind to do the treatment, as I have heard the worst horror stories imaginable.  I haven't had my viral load measured or which genotype I am (Yes, I was diagnosed that recently) but, if a doctor gave me 60% odds....I'd take 'em.  

Aimee  
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190885 tn?1333025891
i would look at waiting 6 months to a year to see if the better new tx are out..i have the same geno type and i'm just getting things done like a and b shots and other stuff...staying healthy as posible...i think it's more like 75 percent cure with the new tx...and only 24 weeks tx instead of 48 weeks...good luck...billy
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956931 tn?1271636169
Hello and welcome.

The first thing I can tell you is that you are not alone. You have come to the right place for support, encouragement and a vast amount of knowledge. We are all terrified when we learn that we have a deadly virus in our bodies, and we all feel like it is the end of the world, but that is not necessarily so. I became a member of this forum months ago, and just came here to read and learn for a long time after initially joining. And learn I have! You are among friends here and you are welcome to ask questions or to "just talk".

I know that someone is going to ask when you had your liver biopsied, what stage you are, and possibly what grade (activity level). If you have these numbers it will help to post them if you have questions about any of that. There are some here who are absolute experts about this virus and its tx, and they are very generous with sharing knowledge and experiences.

There are many here who have treated (and some more than once or even twice or more times) and will be able to offer words of wisdom about that. There are some, like me, who are about to start, or have just started treatment who can also be encouraging. Don't accept the "not curable" verdict as it sounds too final. This virus can be and has been cleared from the system and from the blood of many, with treatment.

I too am genotype 1a, as are many on this forum, and a "positive attitude" is going to be beneficial for your recovery, as well as having a loving support group at home if possible (I know not everyone does). But it is possible to clear this virus as many here will tell you, and hopefully put it behind you! Forever :)

Again, Welcome! And good luck to you.
~Pos.



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