Brand New ~ First Post ~ Overwhelmed!!

[Wildewoman]

Hello ~

In 2001 I was diagnosed with hepatitis C (they ran blood work for my hysterectomy & I was diagnsosed) They did a liver biopsy in 2002 & said I had a 1-1???

Then - nothing. It totally went off my radar & my docotrs. She then left the practice & I have a new doctpr - the kind who atcually orders tests & things when I went in for my yearly physicial. She ordered an abdominal US & blood work, etc.

Well, I have gall bladder polys & she sent me to a GI specialist - who in turn sent me to a surgeon - so I am have having my gall bladder out next Friday AND a liver biopsy.

While at the lengthy appointment with the GI guy - he started telling me about the treatment for hep. C - to be honest - he freaked me out!! He called it "chemo" and said we will talk more after the biospy.

So, what should I look for in this biopsy? He said if I am a 4 - then have the treatment - if I am still a 1 - then wait.

I didn't even know there was treatment for hep. C

Thanks.

PS: - the wildewoman is because my name is Wilde - just thought I'd let you know. :-)

[Bill1954]

The viral load is a blood test; it’s formally known as an “HCV RNA Quantitative” test.

Years ago, this disease was known as Non-specific hepatitis or Non A, Non B Hep. Back then it was thought to be harmless; basically watch the liver enzymes, and don’t pay much attention to it. We’ve found that it can do damage; in fact, it’s the largest cause for liver transplant in North America.

It’s quite possible to adopt a watch and wait position; in fact, with a biopsy that indicates very minimal damage, it might be the wisest course of action.  Keep in mind that about 30% of patients don’t have elevated liver enzymes, and it’s quite possible to have extensive damage with normal AST/ALT. Same with viral load; it’s not necessarily indicative of disease progression. I personally had a very low viral load (<150,000 IU/mL) with significant fibrosis. Don’t rely on either of these test results to guide your treatment decisions.

Best to you, and let us know how things turn out—

Bill

[Wildewoman]

How do I find out my viral load? Is it a blood test or from the biopsy?

I am in excellent health - having been diagnosed 7-8 years ago. My old provider & I never even talked about  it except that I had hep. C - did the biopsy - then nothing for 7 years.

Now I have this great new provider & a number of specialist & all of a sudden it seems like such a big deal. Ultrasounds, biopsy, possible chemotherapy, a year of treatment, missing work . . . . .

What is I choose to do nothing? My liver tests are only slightly elevated. I am 50 years old & feel great!! Can't I wait until I don't feel well? Watch & wait & see?

heavy sigh . . . . . . .

[Bill1954]

Good luck; let us know how it goes,

Bill

[orleans]

Hey, I did the gall bladder/bx thing. It should be a breeze. jm

[Wildewoman]

Thanks so much!! The biopsy & surgery is a week from Friday.

[T246]

I am also G1.  If your biopsy is 1.1 keep in mind that 50% of those with mild HVC go through a progression within 5 to 10 years.  If you are 1.1 you could wait for new meds, or like me treat now.  I am 1.1, in very good general health and watch diet carefully.  Your viral load is also important because If your load is under 400,000 IU/mL your chance of SVR increases as does the possibility that you can be an early responder.  I decided to treat now and am 7 weeks in.  It is no picnic, but not that bad either.  You just need to manage treatment, drink a lot of water, eat, exercise no matter how you feel.  If you do you can make it.

I suggest you go to a major university for another consult before you decide.  The information and support you get in a quality program will be second to none.  

Do not rely on a GP to be responsible, manage you own health.  You and your last Dr should not have forgotten about HCV.  My last GP never tested me for my high enzymes, then I found through a new Dr that I was positive.  

Educate yourself, get good info and make a decision that is best for you, not your DR, or anyone on this site.  I just happen to be bullish on treatment.

Best of luck.
TF

[lapis]

Yes, welcome to the forum!   I love your screen name BTW.

Bill has given you excellent advice and I don't really have anything to add.  Just wanted to throw in another welcome.  This is the best place going for information, support, and encouragement, so stick around, and keep us posted on how you're doing.

Lapis

[Bill1954]

http://janis7hepc.com/Genotypes.htm

Bill

[Bill1954]

There are a number of genotypes that have been identified; only three are relatively common in the US. Genotype 1 is the most common in North America, Europe and Japan; and it’s also the least responsive to treatment. Currently, only about 45% of patients will beat the virus the first time treating; the others will either not respond or will relapse within the first few months post treatment.

The objective of treatment is to complete the assigned course and become undetectable for virus; then, after completion of treatment, we continue to remain undetectable for six months *without* medications. If this can be achieved, we call it Sustained Viral Response (SVR). This condition is synonymous with cure; it is considered to be very durable, with only about .05% of patients redeveloping the virus after this point.

Continue to ask questions here as well as other venues, and learn about this disease before considering any treatment. It would be quite unusual to progress from stage 1 to stage four in a period of 7 years; this is generally a very slow moving disease.

Do let us know how the upcoming appointment and procedure goes; and request copies of all your lab results and any other procedures. Most of the folks in here keep a file of their medical history; it makes it a lot easier to communicate efficiently both here as well as with other doctors.

Again, best of luck to you--

Bill

[Wildewoman]

Good to know. Is genotype 1a good or not so good??

[GreatBird]

Genotype doesn't change.

[Wildewoman]

I am a genotype 1a. That was back in 2002 however. I guess I need a new test to determine the genotype now.

Thanks!

[Bill1954]

It sounds as though you’re getting sage advice from your GI doc. The treatment for Hep C (HCV) is a combination of the drugs interferon and ribavirin; neither of which are particularly pleasant to endure. The information you left out above is your genotype; if you are genotype 2 or 3, you might go ahead and treat now. If genotype 1, there are new drugs in late phase clinical trial now that are probably due for release in roughly two years. While they will hopefully increase the efficacy of treatment from approximately 45% to 70%, and possibly reduce duration for some patients as well.

Treatment currently takes from 24 to 72 weeks; dependent on genotype; and is relatively expensive. An 11 month course can cost upwards of US$ 60,000; good insurance is critical.

How do you feel? Do you have any problems with the virus… any symptoms? What is your work schedule like; can you afford a little time off if necessary?

A good site to reference is Janis and Friends:

http://janis7hepc.com/

You might begin by clicking on ‘newly diagnosed’ near the top of the page, or byopening ‘other HCV information’ in the right-hand margin. Be sure to bookmark this for future reference.

Best of luck to you, and hang in there,

Bill