3+ fibrosis

[cstop]

just rec the result of liver bx, am waiting to call dr.  what is 3+ fibrosis?  Should I start tx now?

[FlGuy]

Whether you doc say "now" or wait a while there are some things that you can do to ready yourself - whenever treatment comes your way.  For many, it can be a physical grind and there are some things you can do.  It might be a good idea to get fitter, lose some weight and get into a healther groove in general.  These things don't happen overnight, so take advantage of any prep time you have.  Good luck.

[portann]

Given that SOC didn't work for you the first time, I'd ask the doc about a trial when he returns your call today.

Did he have the results of the new biopsy when he suggested you wait? If not, he may re-assess, given the 3+ but the new drugs will boost your chance of SVR so significantly that this is something you and he must weigh together.

You may want a second medical opinion as well.

[nygirl7]

The question here is if definitely those two drugs will be approved. We think so and we hope so however we've been hearing for years that they would be already.  At stage 3 you really don't have too much time to wait. Being overweight can be a negative predictor of success to begin with - adding cirrhosis into the mix will make it even harder for you to achieve SVR and be cured.

February seems a long time away and even then from what we hear the drugs won't be approved by then we are looking at least  to the summer of '11 and probably after that.

I am not sure why he has suggested to wait but honestly I wouldn't add anymore damage to your liver than it already has. The more damage and potential scarring the harder it will be to cure. And yes in six months you could be cirrhotic since you said 3+ it means you are really already between stage 3 and getting into 4.  Just because it takes 20 years to say get to stage 2 or 3 does not mean it will take another 20 to get to stage 4 - it is not linear in progression meaning towards the end is can go much faster.

Good luck.

[spectda]

There is a trial in san francisco at california pacific medical center and at kaiser for one of the new drugs (bms-790052). I don't know if you are willing and able to travel that distance, or if there is still room for more people. if you are interested I can get you some numbers, but I would suggest contacting them asap. I don't mean to hurry you or alarm you, it's just that these trials fill up quickly. I travel 4 hours each way every 2 weeks to be in the trial I am in. That doesn't work for everyone though.
- Dave

[spectda]

it's very scary getting the news. We learn to adjust, but that doesn't help the fear you have now.

It's good you are seeing a specialist because the odds of success increase with a doctor who has a lot of experience treating the disease. Hopefully your doc is a hepatologist (liver disease specialist) or a gastroenterologist who has lots of experience with hcv.

Boceprevir and Telaprevir, two of the new drugs are expected to be available in about a year, if you are stage 3 plus it is time to treat in my opinion, and as Bill and Trinity mentioned.

It is very important that your doctor treats this aggressively with the correct hefty doses of the interferon and ribavirin. You want a dr that understands the importance of staying at full dose throughout treatment and will use the drugs designed to help you through it if your white and/or red blood cells get low.

This forum has many people that have been through this before (trinity and bill have vast experience), and all you will find support and advice that will get you through this.

I am currently treating in a clinical trial for boceprevir, one of the new direct acting anti viral drugs. It may be possible that there is a trial available to you with one of the new drugs also. I will take a look on the clinical trials site for you area since this all of this must be overwhelming for you.

The good news is that although you stage three is not great, this disease moves slowly. My guess is that you are in no immediate danger although of course we are not doctors and don't know everything about your condition.

i am sorry you are going through this. When were you diagnosed with hep c?
- Dave

[cstop]

Thank you everyone for the welcome and responses

[cstop]

Thanks Dave.  I just left a message with my Dr. (Ginn) who does specialize in hep c.  I am a genotype 1b, but I don't have anymore info on the bx.  I am overweight, not drinking or smoking and my diet can use some adjustments.  My next appt is in Feb., we are waiting for the new drug, but I just left a message I am willing to start tx now if he thinks I should.  I am scared and afraid this could lead to cirrhosis rather quickly.

[Trinity4]

Common classification is a scale from 0 to 4 where stage 0 indicates no fibrosis; stage 1 indicates enlargement of the portal areas by fibrosis; stage 2 indicates fibrosis extending out from the portal areas with rare bridges between portal areas; stage 3 indicates many bridges of fibrosis that link up portal and central areas of the liver; and stage 4 indicates cirrhosis.

New drugs called protease inhibitors which will be used in conjunction with the current standard of care (interferon and ribavirin) are expected to be released sometime in 2011.
These drugs will increase the odds of a sustained virological response (cure) from less than 50 percent with the current soc (interferon and ribavirin) to around 75%

I am a late stage 3, treated with interferon and ribavirin and it did not achieve SVR so I am waiting for the new drugs.  Many with the same degree of liver damage as myself have successfully treated with the current antiviral drugs so at this point it's a decision you and your doctor should make as to what would be best for you.  You don't have a lot of time to wait so if the new drugs do not hit the market by next year I would treat with what is available.

Good luck and welcome to the forum,
Trinity

[Bill1954]

Hi there,

I’m up the valley a bit from you in Sacto :o). Yeah, it’s time to dig in, I’m afraid. Stage 3+ fibrosis is a indicative of very substantial scarring; what have you discussed with your doctor about treatment so far? What genotype are you? I assume you haven’t attempted treatment in the past?

Welcome to the discussion group, by the way—

Bill

[spectda]

It sounds like you may be stage 3, the stage before cirrhosis. Can you type more of what the report says specifically? Do you have a specialist who treats hep c? do you know what genotype you are?

If you don't have someone in fresno, Dr Felizarta in bakersfield is very good, I would highly recommend him. If you are stage 3 many drs would say to treat now, but there are many factors involved in the decision and speaking with a good specialist for advice is important. You should make sure you are not drinking alcohol, you are eating a healthy diet low in fat and carbs, and you are not overweight.

Welcome to the forum,
Dave