Stage 3 liver fibrosis left untreated

[Lil Sis]

What can I expect if stage 3 liver fibrosis with hep C is left untreated? My sister was just diagnosed and is reluctant to get treatment? How quickly does this progress? IF treated what is her longevity?

[antman]

it's really hard to predict progression rate. why can they not tx anyway? if i had st. 3 liver damage i would tx as soon as possible, if you could. the idea is to arrest to the damage, thus preventing complications later on. i'm a st 1 and am on tx now. some would say not to, but i wanted to stop it before it got worse. good luck to you or your friend.

[r4c7]

I'm an early Stage 3 fibrosis type myself.  Just had a liver biopsy January 29th in fact. The doc that did the biopsy said I needed to be followed by a hepatologist skilled in the area of hepatitis C.  So I got on the Internet and found the best hep doc in my area, and will be starting treatment next month.

Since the biopsy, I have had additional pre-treatment tests, including blood work, a CT scan of the liver, an endoscopy to look for possible esophageal varices, and consultations.  

As a first step, it would be wise for your sister to get the book, "Living with Hepatitis C, A Survivor's Guide", by Gregory T. Everson, M.D. (Fourth Edition).  Its chalk full of information that will help her (and you too) navigate through this somewhat complex disease, which, although generally slow-progressing, can in time be life-threatening if not appropriately treated.

I would also have your sister get connected to this board. The people that post here are not only genuinely interested in helping, they are hepatitis suffers in their own right who are either fighting the same battle, or are in remission as the result of treatment.    

So welcome to the board!
r4c7

[jmjm530]

Doctors will usually suggest treatment with stage 3. There is no way to tell how fast it will progress to stage 4 (cirrhosis). Could be ten years, could be ten months. If your sister is treated successfully, you can have every reason to believe that she will have a normal life expectancy, i.e. the same expectancy as if she never had Hep C. But even if she doesn't treat successfully, Hepatitis C is anything but a death sentence. Many here are stage 3 and 4 and are living productive lives. If for some reason, your sister wants to wait on treatment, at least make sure she is being seen by a hepatologist (liver specialist) who can monitor her liver damage closely. The worst thing she can do is just forget about it, even if she has no symptons.

Your sister is lucky to have you for a "lil Sis".

All the best,

-- Jim

[nygirl7]

I am a stage 3'r and I had no doubt I would treat.  It's just too close to cirhossis for me to not worry and take action.  Stage 3 is a pretty darn well destroyed liver already.

by doing treatment (I treated for 72 weeks) even IF I didn't succeed in killing off all of the virus - I gave my liver a year and a half break from the virus that was killing it. The liver is the only organ that CAN regenerate (unless you have cirhhosis then it cannot).  I can't wait to see what stage I am at now.

Also - liver cancer is a big threat to those with hepc and doing treatment practically guarantees (really lowers the odds) that you will get this disease. Liver cancer is usually deadly.

I've had this disease for about 20/25 years and I am stage 3 however I could become stage 4 in just a year - or 5 or 10.  There is no way to know.

Knowing that (out of more stages to go to before its extremely serious) I couldn't take the chance.

I hope you have luck in helping your sister to accept her disease and to do something about it.

You ARE a great sister.

[nygirl7]

PS (I didn't mean to imply stage 3 wasn't already very serious...it is).

I get tongue tied typing away while I'm at work so I hope that made sense.

I too hope your sister will get connected to this board. It saved my life and gave me the COURAGE I was lacking big time to do treatment. Without these people I have no doubt I probably would have quit - they literally cared enough about me that It gave me STRENGTH to fight.

Nobody said treatment is fun but it is doable and we DO lead very good productive lives.

In a way if you HAVE to have a major disease this is a good one to have - there is a cure AND you can meet some pretty great people in here who care.

:)

[illo]

Hi.  I don't blame your sis for being reluctant. I was one of the most recalcitrant on taking the meds.   As said before, no one knows how fast it will progress.  I will tell you my story which I posted before.  Mine did progress quickly.

I got dx 4 yrs ago.
After 2 years, I had an ultrasound and extensive physical. No enlarged liver or pancreas. Hiking, skiing, doing everything.  I then started to get more tired as I did aerobic exercise.  About a year ago, I got a biopsy and found out I was cirrhotic.
I had no idea. Everything else looked normal before that. In 2 years, cirrhosis, enlarged pancreas and slight aceties. This disease can progress rather quickly. I haven't had a drink in over 13 years and didn't drink heavily before that, I eat organically. All good things. No sugar, wheat, dairy. Very little meat. I was very surprised. You just don't know what can happen, or how quickly. The docs don't know because each person is different.

My doc said some people can have a low viral load and be cirrhotic, and some can have a high viral load and be OK. It's very individual. And progression varies in each individual.

Tell her to do her research and follow her gut on what to do. I don't know how long she's had it, but it sounds like many years being her condition.  The virus wants to survive as much as we do, and it does take its toll.

Tell her to find a good doc.  It's good that you are concerned for her, she'll need a lot of support no matter which road she chooses.

Best of Luck!

[cajunlady]

Hi there,

I agree will everyone else here, she needs to get a really good doctor and get results to give her direction on where she is and where to go.  At stage 3, I would definitly treat.  Don't know what her reason is for being hesitant but, you should try and get her to seek help and to come into this forum for support and encouragement.  Many of us here have had to face the same decisions, some more serious than others, but we all face the decision.

You are a good sister, and I have a feeling you may get through to her.  Keep trying until you can at least convince her to seek further testing.

Good Luck,
Cajun

[bobbyullc]

IT REALLY DEPENDS ON HOW LONG IT TOOK TO GET TO STAGE 3. IF IT TOOK 30 YEARS IT IS SLOW MOVING. IF ONLY 10 YEARS IT IS FAST MOVING.
my hepotologist said at stage 3 i had 10 to 15 years till cirossis. even then it may take years to get more serious.

bobby

[RiverRandy]

Hi, I just found out today that I am Hep C stage 3 after my liver Biopsy came back today.  I had 2 blood transfusion back in 1969 when I was 16 year old.  I just found out a few months ago after I was feeling really tired and fatique to go see the doctor.  Over the past few months they have repeated several blood test to comfirm my diagnosis.  I will go back to see my doctor next week to start treatment.  I am 53 years old male, and very worried about this diease of the liver.  They told me that I will be on medication Bi daily with injections weekly for 1 year.  Will check the viroload after 12 weeks to see how the medication is doing.  I would like to hear from anyone about there side affect to their medication and what to expect.  Thank you very much.

Randy

[jmjm530]

Your diagnosis, stage and age is pretty close to mine. I treated for around a year and was cured a little less than two years ago.

Treatment is manageable for most but can be very difficult for some. Most are able to work pretty much full time. Some have to cut back. Some like myself were pretty much couch bound. If you take an afternoon to back read posts here -- and in our "social" forum, http://www.medhelp.org/forums/show/76you will sort of get an idea what people are going through.

A couple of suggestions.

If at all possible treat with a hepatologist (liver specialist) as opposed to a GI. If this screws up your treatment timetable, it's worth delaying things a few weeks or months to start off correctly. You also want to be tested for viral load at week 4, not just at week 12. Again, most hepatologists will do this, many gastro's will not.

You also want to have a discussion regarding "helper drugs" PRIOR to starting treatment. Helper drugs are Procrit (epo) for low hemoglobin and Neupogen for low ANC (absolute neuts).

To oversimply, you want assurances that your doctor will use these helper drugs before lowering the dose of your medications in the event that either your hemoglobin and/or ANC drops significantly during treatment. The reason for this is that lowering the dose of the treatment drugs also lowers your chance of being cured. Again, a good hepatologist will usually understand this, many gastro's will not.

Spend some time here reading. Ask as many questions as you like. Good luck!

-- Jim

[IAmTheWalrus]

Please pay close attention to Jim's suggestions.

I could give you my story, but I' shorten it. My disease progressed rapidly from stage 1/2 to stage 4 very quickly. I ended up needing a liver transplant and am now treating the disease with the new liver (yes, even after transplant you still have the hepatitis virus and it generally progresses to liver disease again). Just so you know, once the disease gets to stage 4 treatment options may be limited.

So, from what you have said, I would be ready to treat, if it were me.

[Rockerforlife]

You have no choice but to treat now...stage 1 or 2 you can wait...but stage 3 is the one where you go for it....GOOD LUCK...kill the little b.a.s.t.a.r.d.s now

[IAmTheWalrus]

Jim: Oops! I see your comments were directed to Randy. Still, good advice.

Randy: Good luck to you!

[RiverRandy]

Thank you very much for the information and suggestions, I have always knew that I was going to be treated as soon as they got back my results of the biposy. Again I will hang in there try to ask the doctors all the right questions to be able to understand this disease. I am being see at one of the best Hospital in Ca...Loma Linda U.

[nygirl7]

Randy,

I had the same diagnosis of stage 3 when I was biopsied.  I treated for 72 weeks and have been cured almost two years.  It's nice knowing that even though it wasn't easy that I killed off all of those little creatures and they are gone for good!

If I could do it you can to. I missed 3 days work in the 72 weeks when the anemia hit so I would suggest that you have frequent CBCs and also get copies of every single test result you have done.  It will help you tremendously in the future to be able to monitor your numbers and perhaps offset some of the side effects that can happen.

Good luck.

[HCA]

Quote from NY Girl's post
'Stage 3 is a pretty darn well destroyed liver already'
That is not so!
70% of stage 4 patients do not experience decompensation for 10 years.
Also liver cancer is a threat but not a big threat-3% per annum for cirrhotic patients.
I would call that a moderate threat.

[Marc1955]

What I think everyone on this board would agree is that your sister can't simply ignore her condition and hope for the best.

Maybe now she's in shock and she needs some time to come to terms with her new reality. But soon she's going to have to bite the bullet and get serious about her situation. She should definitely not close her eyes for five years and hope for the best. Treatment is more successful the less liver damage there is. It's unpleasant, but you can't just stick your head in the sand. Unfortunately, these can be life or death issues.

[Bill200]

Go ahead treat.  I went from no damage to stage 4 in 12 years.  With three treatements inbetween.  Good luck.  

[fretboard]

I'm sure everyone before me has covered all areas as there are alot of very helpful ppl on this forum.  I'm gonna leave you with a link, when you have the time you can take a look at it.  God Bless

http://hepcfight.com/treatment/risks_of_not_treating.asp

[mir845]

Hi just found this site at long last i am at stage one and am starting treatment on the 14 jan 09 and nerves are gone dont know what to expect so any  advice would be great also to anyone who read this i would love the advice

Mir

[pjhep80]

why are you treating at stage one?

i do not understand the rush to tx for stage one or two.... except drug companies making money from us

[nygirl7]

Some people (myself included - although I later found out I was stage 3) cannot stand the idea of living with a disease that is slowly destroying our liver and would do treatment regardless which stage we were in.

If I'd had the opportunity to treat years ago perhaps I would not have had to do 72 weeks to beat this thing.......maybe I still would have, but certainly I would like those two stage of liver damage gone and wish I could have them back.

It's just a personal decision is all.

[pjhep80]

ya i understand that its a personal decision but i do think that the dr's just automatically say TREAT and if people dont ask questions or do any research, they just do what the dr tells them, they might be very sorry for it later... i have read posts on here with people tx'ing without even having a biopsy first .... thats just crazy

[hopefulsc]

ive been diagnosed for 3 yrs did treatment right off the bat even though there was supposedly no fibrosis and 3 years later find out Im a stage 3. Im not so sure the treatment didnt weaken my immune system and make the virus stronger

[merryBe]

the way I look at it, jmjm is right time wise, and that means time is at a premium.

All you have to do is read what stage 4, and end stage disease is like to know it isn't worth fooling around with waiting unless you have some serious health issues that put you at higher than average risk, the time to treat would be in stage 3 at the latest because while there you still have the chance of your liver fibrosis being amost entirely reversible, in other words returning to a healthy liver function at or near normal is still a possibility. Once you reach stage 4 however, that ability is entirely diminished and even if tx is successful then, chances are you will suffer with some loss of function that will permanently impair your quality of life. Think of it as limping along with a liver the size of a child's in a big adult body. You'll only have so much tissue left functioning, the scar tissue will outweigh the functional tissue, and block blood flows and worse.

Ergo, one would want to avoid things that promote fibrosis, such as alcohol, pot, and many but not all pharmaceuticals, get health insurance and treat, or get into a free clinical trial and treat if you don't have insurance. Go to clinicaltrials.gov for worldwide info on free ongoing trials. Type in HCV or Hepatitic C and do a search.
mb

[fretboard]

My opinion in this area is to agree with pjhep80, meaning if you were talked into txing call it off.  If I didn't have any symptoms I don't think I would tx as a stage 1.  That's just my opinion, on the other hand I know there's quite a few ppl who can't live being HepC positive.  In that case, it's your decision and that's what you choose to do.  Personally I wouldn't be txing if I didn't have osteoarthritis and acid reflux in the mix.  Also, I'm a recovering addict and I had a serious incident happen to me while overtaxing my liver that quite frankly scared me into txing, after mulling it over for a number of years.  The last thing about me is I'm 55 in Nov.  Txing is very serious and could possibly do you more harm than good, so you really have to think this over alot.  If you've already thought it over and you feel that you can't live being infected with HepC, then do what you have to do.  What ever you decide to do,  good luck and God Bless.

[aggie913]

My best friend found out this past January that she has stage 3- border line 4 liver disease. Her doctor strongly suggested she start treatment (shots in her stomach?). She has hep C as well. She guesses that she has had hep c for 20 years (sharing needles). She refuses to quit drinking (at least 3 beers a day) and refuses to quit smoking (pack a day). I think she wants to die.
I had a neighbor who had the EXACT same thing. She went from Stage 4 to liver cancer to death within 4 months. I watched her die. It was brutal. It still breaks my heart. I hope your sister has gotten treatment. I wish my friend wanted to live more than she needs to smoke and drink.

[nygirl7]

Sadly this happens and my friend died the same way, even after he was transplanted he just kept partying till he died too the same way.

Treatment isn't that bad for most of us.......it sounds like the stopping drinking is the thing that she doesn't really want to do.  I hope that somehow someone can encourage her because you are right at this rate she probably won't have too much time left and end stage liver disease is as you know way worse than treatment/sobriety.

Good luck to YOU.

[merryBe]

the best advice for someone is denial is to try to get them in for help. Be it a therapist, a pastor, or a family intervention, take your loved one by the hand and say, we have to deal with this now.

The issue with needle biopsy is that while it is still considered the gold standard, it does not do as good a job as a fibroscan, but unfortunately these are not yet in use and very few cities have trained personel, nor do they scan the whole liver.

Those that have scanned the whole liver find that there can be areas at stage 1 and stage 3.   Or in your sisters case, stage 3...she may have areas at stage 2 and areas at stage 4 already. The old thinking was the liver is pretty consistant throughout, but the latest research has disproved this. Ergo you big sis need tx soon lil sis!

The needle only samples one, or 3 areas, the 3 are close together and ergo don't reflex the whole liver...plus the reader of the biopsy has to lean towards one stage or another...some lean towards 3 when they should say 4. This is what happened in my case and the biopsy did not match what the surgery, physical exam and scans all showed.

It sounds like you've got your work cut out for you, and my prayers are with you. With treatment, and abstension, people can live 15-20 yrs longer even at stage 4, but not if nothing is done to stop the virus, and not if the alcoholism continues. I had a friend who did not treat at that stage, and she didn't last long at all...and she didn't drink. So this is a serious matter.

my best to you.

mb

[AnotherJourney]

I just treated with Peg & Riba and stopped after 12 weeks. I was what they call a slow responder. I started with 9.2M virus load and dropped to 52,000 at 12 weeks. This indicates that my chances of success with the drugs were rather reduced. And I found treatment to be less than a piece of cake.  

There are some very promising drugs in Clinical Trials (CT) that really increase the chances of success.  When I started treating I knew of the study drugs, but my dr failed to refer me for any chances at a CT
When I found out I had Hep C, I wanted to treat right away!

Now  I sort of regret the decision to rush (as in start treating within a few months of diagnosis) into treatment. That is becuase now I am not what they call "treatment naive" (never treated). Many clinical trials require one to be treatment naive. So now I seem to really be (SOL) shi! ouf of luck for drugs that could have moved me from unsuccesful to succesful.

I am not saying your sister shouldnt treat right now, but I am saying that she should ask her doctor to look into trials as other alternatives to the standard course of care.  

[damosaab]

how many stages are there is it graded different depending on country

[cetacean]

this post is from 2007