Slight Scarring of the Liver

[TeeTom]

Just had a Biopsy and the Dr. told me I had slight scarring. What the heck does that mean?
I'm considering the treatment and I wanted to wait until the telaprevir is released. They are saying mid 2010. I put myself on LIV-52. Milk Thistle, and Selenuim to try and pave the way for the treatments. I don't look discolored, I don't feel tired, and actually feel fine but, I know it's there and I want it gone.

Thanks for listening.

Tommy

[TeeTom]

I was on the http://clinicaltrials.gov site this morning and some of the trials have numbers instead of names. Does anyone know how to translate these mumbers into drug names ..

Thanks
Tommy

[TeeTom]

Thanks Newleaf09, I have been to the two sites that Bill1954 suggested and found there are a couple of things going on in my area. I even called Roche and talked with them. They are kinda hush hush and wont tell you much. They refered me to my Dr.

[newleaf09]

Have you looked at www.clinical trials.gov?  It's the US government site where they list all of the drug trials that have been approved to start enrolling patients.  Vertex, Schering Plough and Roche are all doing trials which used the standard peg & riba and adding protease inhibitors or polymerase inhibitors.  Most but not all are done at teaching hospitals in cities.  New trials go up on the site all the time.  

Not all doctors are aware or tell you about trials opening in your area.  Be proactive if you want to find one.

[nygirl7]

LOL well I'm sure we have NO idea that we were doing it and it  was litle  microdroplets ... not like VampyreLand and just opening up a vain and taking a hit.

hahahha you are right SO GROSS but I can remember plenty of times my boyfriend or I or someone would have a bloody nose and never really thought about it later on you know?

[TeeTom]

Ewww.. the thought of snorting someone elses blood ... well... Ewwww. Funny how poking a needle after someone else doesn't seems as bad..to me that is.

Tommy

[nygirl7]

Don't worry Teetom you are NOT the only person who got it that way around here...believe me there are plenty of us (although the doc thinks I got it from snorting if you can believe that - but we snorted a LOT back then in those days so why not).

You're doing the right thing learning all you can.  We ALL understand how freaky it is to look in the mirror and go wow I look the same but what is this inside me that my body has betrayed me?  That is how I felt.  After all the years of insanity it just seemed odd to have to face it now - as a grown up who's idea of a wild party is a bucket of Ben & Jerry's.

I guess we truly do reap what we sew!

[TeeTom]

Thank ye!! Every little tidbit of info is good no matter how small or large. I would like to try and get on the band wagon for the boceprevir or the telaprivir for that matter. If you have any more information or get any information at a later date please put me on you notify list.

Thanks for responding to my thread. So far I have learned to check my alt and ast levels the lower the better, my viral load the lower the better, what stage and grade my liver is in also the lower the better.

For the record I have never liked liver.. chicken, Beef, or any other. It is ironic that I am having liver issues. lol.

Tommy

[newleaf09]

When you read a biopsy report, it has the doctors notes and a two number score.  The Grades (1-4) are for inflammation (means something is actively irritating your liver) and Stage (1-4) is for fibrosis (scarring).  The numbers tell the story better than the notes, but you can look it all up online.  As Bill said, the worst symptoms generally only appear at stage 3 or 4, when the liver is so damaged it can no longer do it's job.  The way it does damage with no signs is also the scariest thing about the disease.  Excellent that you found it early and have already verified your condition with the biopsy.  1a is less responsive to the current therapy than genotype 2 or 3 but the good news for you is that the new protease inhibitors (coming out in the next few years) added to the standard treatment may reduce your treatment time to 24-28 weeks instead of the typical 48.  With minimal scarring, you can afford to wait for the new meds.  

Schering Plough has some upcoming PI trials.  I was in the most recent one and heard from a good source that there will be one coming up that trials boceprevir with eltrombopag, a rescue drug for low platelets during treatment.

[TeeTom]

Don't worry I wont get sucked into any webs.

I have taken a "Expect the worst" and "Hope for the best" approach and so far I have not been disappointed. I'll know more Oct 22 and I wish I could change Dr's but that is another story.

I have asked for copies of all my tests from three years ago so I can look at the rresults myself and see how things are progressing. I may need help from this forum when I get them to translate.

Thanks

[HCA]

Lloyd Wright is a condidence trickster.
He never had Hep C and makes a living claiming he cured himself of it.
Don't get sucked into his web whatever you do.

[TeeTom]

My genotype is the worst one 1a.. I'll check out the trials web site. There is a lot of information to consume on the internet. Youtube has some very good videos on Hep C also. I think I have bookmarked every site I can find on Hep C.

Does anyone know anything about this Lloyd Wright fellow? He seems to know alot about this bug.

Thanks
Tommy

[HCA]

The way to find out about clinical trials is to go to clinicaltrials.gov like Bill said-your doc won't know offhand..
You have to be proactive in the Hepatitis C game which means studying-otherwise you just get told you have 'some scarring' which is meaningless.
You also need to finf out your genotype.

[TeeTom]

I will keep an eye on this site. I just found it today and I have already learned alot from reading the other posts.

Unlike others I know when I contracted this nasty bug. It was in the year 1978 and I was a cocaine shooter. I turned yellow and the Doctor told me what it was and that there was no treatment at the time. So I have lived with it for 31 years now. My wife has not been infected and that is a good thing. I haven't had any children since I was infected. As far as I know I have not transmitted to anyone. I have not donated any body parts or blood and I give warning to Dr's and such.

I find it odd that something is killing me but I can't see it, smell it, feel it, hear it or taste it. I suppose that is why they call it the silent killer.

If I can contribute anythng to the medical community for testing I will do it. I'll check with my Dr when we chat and see if anything is available in my area.

[Bill1954]

Hi Tommy,

I don’t believe there are any Telaprevir trials currently recruiting. You can always review the clinical trials websites for other interventions:

http://clinicaltrials.gov/ct2/search

http://www.centerwatch.com/clinical-trials/listings/default.aspx

and continue to work with your doctor regarding what trials might work for you. Also keep asking questions in here. Best of luck to you—

Bill

[nygirl7]

Teetom  Be careful, sometimes as you think they are helping herbs can actually raise your liver enzymes drastically.  So just make sure if you do feel you should take them that you make sure to have the liver panel done every few weeks.  You don't want to cause more scarring by accident.  The best thing you can do right now is live as liver healthy a lifestyle possible.  Supplements are good for you in general but otherwise they won't really do anything to help  cure you or fix your liver.  Getting completely rid of the virus is the thing that will do that.

Having slight scarring is at least great news. I knew I would treat regardless of what mine said because I hated the idea that I had this disease but mine was already stage 3. You are VERY fortunate to have time to wait look learn etc!

We've already been waiting for years for the tele to be approved and you can't really 'bank' on that being any day soon.  If somehow there is still a trial for treatment naive folks going on that would be your best bet if you are set on it.

It sounds like you already have a good handle on what is going on with treatment and the disease itself.  The thing I would completely advise is make sure you get hard copies of all of your test results. LIke the guys above said it helps make things much more clear because you can sort of investigate what everything means and learn a little more and everything you learn will help you towards getting cured.

Treatment isn't fun but it works...
GOOD LUCK.

[TeeTom]

Thanks guys for responding. I take the herbal stuff to help take the work load off of my liver, I know it wont kill the bug but it is suppose to help detoxify.

This is the third Dr I have been through. I think UAB in Alabama has trouble keeping it's staff members. My last Dr was evaluating for the voluntary experimental stuff for me so the biopsy was a necessity. Since he has gone I have to start over again with the new Dr. He said that the biopsy showed fatty and some scarring that was about it. I do have an appointment Oct 22 to discuss and decide on the next step. He wants me to start the treatments, interferon and Rib. I wonder if I could volunteer for the telaprevir..

Thanks
Tommy

[Bill1954]

You might want to ask the doctor for copies of the pathology report; somewhere in the narrative section there is probably a numerical value assigned. If will say something like ‘grade 2, stage 1, or something to that effect.

In any event, scarring, or fibrosis, is a normal condition with Hep C; and the primary reason for treatment. If it is slight, you might reasonably wait for a few years until we have a better idea of the cost and availability of the protease inhibitors.

Your doctor is best equipped to help make this decision; what is his/her position of this?

Most of us don’t experience any significant symptoms of HCV, other than fatigue, etc.
The visual signs of the disease are pronounced once it advances into the end stages.

Good luck--

Bill

[HCA]

Get a copy of the biopsy report,post it here and we will translate it into plain English.
The phrase 'slight scarring' could mean anything.
The supplements won't help-waste of money,but if they make you feel like your'e doing something then carry on.
Someone will probably tell you that milk thistle 'interferes with meds;,but it's not true.
Mid 2010 for telaprevir is too optimistic-they won't have the SVR 24 data from the phase 3 trials until June 2010 ,let alone file the New Drug Application.
Add about one year to your estimate.