Biopsy results; Stage 3 Fibrosis

[adoubter]

Hello to all Hep C sufferers.

I'm hoping for some input as to what this means from others/your viewpoint. This is my second login to this site. My first log was trying to choose between doing treatment or not to treat. I took the next step and that was to get a liver biopsy. My Dr. says that I have Stage 3 fibrosis, and a fatty liver. The fatty liver he says is directly related to my obseity { I'm about 80 pounds over an ideal weight}. I've been obese 25 years of my 57 years, but that aside for the moment.
I would like feedback on my results. I don't know much more than what I've already quoted from my Kasier Dr. except that he went on to say that I have scarring and that I'm not endanger of liver cancer {I guess for the time being} and that I don't have cirrhosis at present {funny? I thought scarring WAS/IS cirrhosis}
Thats the extent of what I got from our 4 minute phone conversation, except to say that he wants me to do the "treatment program", shots and all the rest of it and try to "knock it out". But my chances are better if I wasn't fat, and that the "treatment" would work better. But Hells Bells, I've already lost that fight.
So..I ask some of you for your input, wisdom, and knowledge at helping me understand where I'm at with this thing and maybe what questions to ask the next time I speak to my Dr.

Thanks, adoubter

[frijole]

I am curious how you zoned into this thread which is 5 years old.  Were you googling fibrosis?  Believe me, adoubter is not an active forum member in 2009.  If you click on the "back to forum" link, you can get back into real time.  You have an option to set your preference to "date started" or "last post."  Sometimes with last post I will see these old old theads resurface.  I would like to know how a lot of those 2005 members are doing, but, alas, they have cleared and moved on or relapsed and stopped posting.  Congrats on clearing.
frijole

[dgp42]

I too had HepC 1a geno 750,000 viral load. I was 62 and had it for 30+yrs. Stage 3 fibrosis/fatty liver wt250lbs. Well, i did the TREATMENT 48wks and have been virus free for 4 yrs w/normal liver panels. I lost 30 lbs while on the Ribo/Interferon but, unfortuneatly I put it back on in a year post tx. I have no idea if my fibrosis has improved. The tx was tough but do-able. I would encourage you to do it. If you are not a responder at 12 weeks they usually will not continue tx. Good Luck!!!!!!  

[cuteus]

Hi Ina, still bottom feeding< I see, ;-]
so am I

cat; the meds mentioned in these threads are mostly for hep c, but interferon has been proven to reverse some of the damage to the liver in the hep c infected, I am not sure if it is been tested for other causes. You seem to be having some autoimmune thing going, did they test you for Lupus? too many organs are involved to be ignored.
this dr and her website and book can shed some info into your condition
http://liverdisease.com/cirrhosis_hepatitis.html
she is very knowledgeable and competent.
there is this trial
http://www.clinicaltrials.gov/ct/show/NCT00003966
do web search on liver damage reversal and see what else comes up
you seem to have been through the wringer in a short time

[cat43]

hi all..i have been reading all your postings, and i am really confused.  i will TRY to make a long story short..but you know how it is with medical problems  i have had back pain for many years...so feb 2004 i finally went to see why.  i am not a dr person.  anyways..i found out i have spondlolythesis(a crack in my spine)  the orthapedic decided to try a lumbar infusion..so i was preparing to have the surgery...went through pre-op..and found my platelets were very low.  of course the surgery had to be put on hold.  i was send to oncologist...had a bone marrow...ultra sound of spleen, etc...well the good think was that my bone marrow was fine..but my spleen was twice the size it should be.in nov i had it removed along with my gall bladder.  had minor complications..but while the sergeon was removing the gall bladder he noticed scarring of my liver..and did 2 biopsies..both came back positive for cirrohsis.  i was floored...i dont drink..and i was tested several times for hepatitis a,b,c,d,all negative.  i went to a gastrologist..and was told my cirrohsis was very bad..stage3 going in to 4.he did a endoscopy..said i have gastritis..and my stomach was inflammed..but anyways..he made it sound  like i was gonna die soon.  i went to a pittsburg hospital to see a hepatologist. we do not have one in this state where i live...so he looked at my test results..and he said i will be ok..that the stage the other doctor was meaning the fibriods..more than the cirrohsis.  i am taking meds to control my edema..and nausa, but nothing to keep the liver to get worse...he said that it wasnt needed.  i have ct scans every 6 months, see him every 4 months..and blood work every 2.  but i am reading on the messages that some take shots?  or medicine??  should i see a different hepatologist?  now my back doctor is hesitating to do the surgery until he talks to my liver doctor..but what i wanna know...is if i am stage 3 into 4  why no meds to stop it from getting worse??  i need help..i need to understand...thanks to all of you.  reading these messages helps me come up with questions that i can ask.  oh yea..the first one i went to told me i MIGHT have 5 years ..does anyone know the life expectancy for stage 3 into 4 cirrohsis??  please let me know.  i have 2 grown daughters both in collage..one is 3 hours away..one is 5.  i would like to know.  thanks again

[chellski]

thanks for the letter (both of you) i gave it to the people i needed to give it to......the dog is right, its moving....
my chin is up - onward and upward!
<3 chelle

[snook_man]

Letter to People Without Hepatitis C

Note: This letter is one of the best found written for people without Hepatitis C. Please feel free to print this letter and give it to those that need to understand.




Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.

Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.

Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.

Authored by Bek Oberin

[snook_man]

Just copy the above letter and paste it into a open word document. That should be printable.
Let me know if there is anything else I can help you with. Chin up girl, life is too short to worry..

[genedog]

dude that is moving great job

[jmjm530]

The link just worked for me -- in English. :) It's Dr. Ben Cecil's web site. Try copying the link again. Sometimes you have to hit the "refresh" button on your browser to enter the site. Anyway, I've copied and pasted abbreviated info below.

Congratulations on your SVR. If you're interested in your liver's progress, you might want to do periodic fibrosure blood tests -- sort of like a virtual biopsy. Or, just enjoy your SVR and let it be.

-- Jim
--------------------------

Question: Blah, blah. blah.

Dr. Cecil:
...If you are cured of the HCV, your liver cirrhosis will improve.
Most of our cured cirrhotics are F2 or F1.5 on Fibrosure testing. One who was cured in 1999 no tests F0. Only the liver and the bone marrow can regenerate. Good luck to you.

###

[new-sojourn]

Well, I followed your clues and ended up in another language!  Being the lazy American that I am, I chose not to translate.

I was end stage-a 4, I guess, after complete liver failure, 9-2001.  Then I was dx w/hep c 2b.  I tx'd 24 wks, cl'd by day 18, fin tx 9-2002.  I was in a trail for esld'ers.  to see if it was worth treating people like me.  surprise, i'm still here!  4 yrs later when I was given just days if not hrs!

I continue my new lifestyle and have even become more strict w/myself.  I feel so good now, and look so much better, even hyper-critical I can't beleive that I'm , ah I forgot..58.

I personally hope that one can regress the damage, and feel thaat I have.  I just didn't know that someone had studied that and found it true!  hooray for a brighter, new day!!

[new-sojourn]

where in the world did you come across the possibility of going from 3 to 0?

[LvdByGod]

michelle, after awhile that sinking depressed feeling about having this horrible disease and dying will fade with time...i had it too. i pray that you can replace it with a "hepc killer" attitude and that we knock off this pest like a flee! and the weight too! ha ha...as if it were that easy...they are both about the same in difficulty to get rid of...but the attitude makes it alot easier to get through...(put yourself in fat,virus,kill,attack mode!!!)

congrats on shot 19 michelle!!!! you say you're on standard dosing...what dose is that for you??? ask your dr about weight based dosing...he should know especially if he is a hepatologist. just make sure the ribaviron is correct if your on pegysys and if your on pegintron, it is weight based, and will be a certain amount for each weight group, i believe...i was on pagasys...see one of the articles below about which one was shown best for overweight heppers in a certain study...

*there is an article somewhere out in cyber land on the exact dosage of ribaviron for each wieght group...i can't seem to find it... perhaps someone else here will have it so you can double check your dose...and dr. i know some here also have seen the article and perhaps they can help us find it... in the mean time here are some other articles you may find interesting...i'll be prayin for you michelle. i pray you clear this thing no problems...

sandi


http://www.hepatitisneighborhood.com/content/in_the_news/archive_2450.aspx

http://www.hepatitisneighborhood.com/content/in_the_news/archive_2162.aspx

http://www.hepatitisneighborhood.com/content/in_the_news/archive_1642.aspx

http://www.hepatitisneighborhood.com/content/in_the_news/archive_2162.aspx

[jmjm530]

New_Soujourn Previously: "where in the world did you come across the possibility of going from 3 to 0?"
--------------------------

Actually the reference I was thinking of (below) was going from 4 to 0 although 1-2 stages is probably more common after SVR but nothing is guaranteed. The main point is that fibrosis/cirrhosis can be reversed after SVR. In fact tx itself (without SVR) can often do the same thing although the progression may continue when tx is over. Same thing with maintenance therapy.

http://tinyurl.com/bmwqn

[BronxRican007]

Brothers

I went through the same thing. My doc told me to lose weight. I lost almost 40 lbs but he wants me to lose 44! I was 244 when I found out I had HCV. On Friday, I go in for my first shot. I don't know what my doc will say when he notices that I still have 8 more lbs to go...but if he says "no", lose the weight first, that's what I'll do because I don't like the alternative of being stuck with this montster inside me. I'll lose the weight for my kids, my wife, my family and a million other reasons; I want to stick around for a while longer...do yourself a favor and give yourself the best chance to beat this disease, lose the weight!

bronxrican007

[genedog]

when did you find out you had viral breakthrough at what week? also was your alt ggt going up before you found out,

[friole]

I too have always fought the weight battle, and have gone to weight watchers for years.  Up and down, all the time. Right now I am in range for my height, but could still stand to lose some. Like Chellski, I dropped 10# in the first month (I am on #5), but can see that I am not going to be one to drop 30-50# because of tx.  I feel excercise and good eating habits are going to get me through this.  Aboubt - try to extablish some habits now if possible.  I know it is hard.  With me no sugar is the way it has to be.  There is no moderation there. It is all or nothing.  I recommend Weight Watchers for both men and women because the program works around real food and eating habits - not supplements.  My hubby dropped 40# on it.

Adoubt, with stage 3 I toss my hat into the ring with getting on the treatment.  I look at this whole issue - hep c and treatment - as a lifestyle change.  I am 57 too and figure it is about time.  You know, if we don't have our health going into our "retirement years" what good is retirement?

Chell - I downloaded that letter into Word, and will email it to you.  It is a good one.
Kathy

[chellski]

sorry to barge in on this thread - but i'm looking for snooks!

you posted a letter to people who don't have hep-c from people who do (i forget the author)  i can't get it to print out, dont know why, and was wondering if you could e-mail me.....get in touch w/me on this thread and i'll give you info.....
i'm having some personal issues and i could use a copy or three of that letter!  thanks!
michelle

[chellski]

so good to read your post - very informative....i'm overweight and my doctor never said anything about my weight....i'm on standard dosage peg/cop (just took shot #19 btw - yea) and what really sux is the one sx i have not had is loss of appetite!  actually first couple weeks i did and thought this is great - maybe i'll lose some of this weight...anyway stress and grief have given me an appetite (i know and im working on it in counselling)  but i'm concerned that my doctor never mentioned anthing about the possibility of not achieving svr cause of weight or even maybe treating longer....
thanks again for your post and i wont give up either fight - the weight came on in the last 3 years and the hep-c just found out about a month b4 i started treating....
thanks sandi!
michelle

[LvdByGod]

with hep c you are "always at risk" of liver cancer. it's just that the majority get it in the later stages of fibrosis and more durring cirhosis.

here is a great article though i couldn't find the one i was looking for agreeing that you can get it at any stage of hepc.but i assure you i read it at a reputable site...

*just don't let your guard down*...keep getting ultrasounds or ct scans at least once a year...and your alpha feta protien checked often...yours is probably fine at this point so your dr made that statement...but things can change rapidly with hepc you never know if your a slow progresser or rapid...so better safe than sorry...keep your eye out for it always.

hep c and liver cancer

http://www.hepnet.com/nih/bisceg.html

[LvdByGod]

hi, i am in the exact boat as you. and the people are very correct in that you must loose this weight. Remember, even if you CLEAR the virus the fatty liver CAN keep your liver cells dieing once you have fibrosis. and head you toward cirhosis.

so if you have'nt lost it all before or durring treatment be sure to do it after treatment and don't give up!!!

...when you start tx you will probably loose some weight but you must extend treatment and it's very very important to have the correct weight dose of the ribaviron. i was 265 lbs. i was only put on the 1200 dose. i have been on for almost 2 years. i had a "viral breakthrough" very bad, where the virus comes back after clearing "durring" treatment.  so i had to continue for at least a year of clear pcr's once they were clear again.

**** who knows if this would have happened had the dr put me on the proper dose of riba for my wieght. which would have been the 1400, 1600 or 1800 mg of riba. you will at those doses probably need the procrit too... it helps gain red blood cells...

but treatment may not help you loose all the weight (i lost 50 lbs on it though), cause if your like me after awhile the weight stops comming off and your apetite returns to normal and you start gainning again. "you need to work very hard on losing it and keeping it off...

"you have two battles. loose the weight and loose the virus...you must do both!!" THIS IS WHAT MY DR TOLD ME WORD FOR WORD!

but i understand the fight and so far i am at a sticking point. so, i'm begining to look into lap band surgury but my dr doubts he will let me do it...cause there are supposedly risks to the liver in that too...i know there is to the gastric bypass...but i thought the lap band didn't have the malnutrition scare that harms the liver...i will find out at an upcoming seminar i am attending...dr says we will talk after that.

but i've done alot of research on fatty liver and hep c and have kept several articles...i'll see if i can find some for you...but take the losing weight part as seriously as the loosing the virus part...GOOGLE HEPATITIC C AND FATTY LIVER...OR JUST FATTY LIVER. you will get lots of info...

excersize is very tiring on treatment so don't wait! start now while you're still feeling good!...and begin to get in shape so you can keep it going best you can while on treatment...you will by then be in better shape hopefully and will succeed. eating only healthy foods, low fat! fruits and veggies, soy, no fried nothing...fish,chicken...olive oil if needed...

however i wouldn't wait too long to start tx. the longer you wait the more damage is done and you will be defeating the purpose. i would wait perhaps a 2-3 months only, just enough to get my excersize regimin going strong and loose some of the weight. then start the meds at the proper dose and try to continue the excersize regamin! this is what i wished i would have done...but i waited to begin excersize and loosing until on treatment and the strength was not there...

you may want to ask the dr for about an increased dose of interferon too...one of my drs suggested it to me but at the time i thought my insurance co wouldn't cover it...after that i changed drs and he said to go longer and i never asked again about the increased interferon for my wieght...i concitrated on just going longer, the 2 years...at my next visit i am going to ask about the increased interferon again...and see what they advise...i want to finish strong but they may not let me cause i have been having alot of body pain with the meds lately! i'm due off of tx in october finally!

i pray for you and wish for you all the success you need and desearve!!! go get em!!! we can do it!!!...we need that fighter spirit though and alot of determination and prayers...

Sandi

A few Great FATTY LIVER ARTICLES ~ cut and paste

http://www.hivandhepatitis.com/2004icr/39easl/documents/0428/042804_hcv_c.html

http://hepatitis-central.com/hcv/liver/hepatic/steatosis.html

http://www.jhep-elsevier.com/search/quick

(on this last one you have to sign in for these articles they are great though...the abstracts are free but the full texts cost money...for me the abstracts are enough info to get the point accross...)

[HCA]

Just thought that I should mention that my source for the statement that the median progression time from 3 to cirrhosis ia eighteen months is Dr. Douglas Dieterich,Chief Medical Officer, Mount Sinai Medical Centre.
See 'The Doctor is In' HIV and Hepatitis website.

[HCA]

Treat now.
The average progrssion from 3 to 4 is eighteen months.
Your age is also an indicator for early treatment.
Try to lose weight simultaneously.
Early intervention will give you a bio-cemical response and reduce inflammation,thus slowing disease progress.
You don't mention genotype.If you don't know ask the doc.
A clinically obese type two in my local support group got a 12 week result of 17,000 000 to 3500,

[Micabo]

Treat as soon as possible.  I had the same biopsy results: Stage 3 fibrosis, grade 2 inflammation - no fatty liver -, I did 48 weeks of treatment and received the best birthday gift ever this year in July:  SVR!!!!

I was undetectable at 12 weeks (was not tested before that) and I went through 48 weeks of surviving the side effects, keeping my mind on the goal every minute of it.  Don't think of the drugs as "poison" or of the treatment as "hell", the drugs are wonderful, they can save your life, they will be your best friend for the next year, when you get the sides, you need to think that it means that there is a "fight going on inside" and the viruses are leaving your body.  There is a huge part of this adventure that his mental.  And you have the best support here from people going through it or having gone through it.  My genotype was 1b and I had it for almost 35 years.  Good Luck!

[jmjm530]

Fairygirl makes a good point about your weight and standard dosing.

If you decide not to lose weight, in addition to treating 72-weeks, you might consider upping your ribavirin dose beyond the standard 1200 mg/day. One of our members over 200 lbs (Bill 1949)is on 1800 mg/day of ribavirin and he seems to be handling the sides pretty well.

However, an increase in ribavirin will not take care of your fatty liver situation. Obseity has been shown to negatively effect the chances of eliminating the virus. Maybe this will provide extra motivation to help you lose the weight. I think delaying tx 6 - 12 months in order to lose 80 pounds would be a smart trade off.

-- Jim