Stage 1 to Stage 4 in 5 years, am I going to die?

I have Hep C for 20 years. 48 year old male (wife and i have one e-mail address) Had biopsy 5 years ago stage 1. I don't drink or do drugs. Did 24 weeks of combo 1 year before that, responded, cleared, but relapsed. Did not do pegalated since.

I guess I should have because by 5 year biopsy came back stage 4 grade 2. Cirrohsis. I am shocked, stunned, and trying not to bury myself yet but its hard. Going to see the doc tommorow.
Hope there are some options other than to wait to die.

I feel fine, in fact I'm in the best shape I have been since collge. Had a grandson and decided that I wanted to see him grow so I watched what I ate, starting lifting weights and doing cardio. Now this. Not looking like thats going to happen.

Bilirubin is normal, ALT and SPGOT are what they have been for last five years. Platelets 110000 and RBC and WBC 4.0 and 4.2, getting low. Ultrasounbd said normal, except liver was at top end of normal size. Is this my liver heading into end stage liver disease? Please tell me there is something that can be done.

Also, any antidepressants that are not too hard on the liver? iam going to need those whether I canstill do any combo therapy or not.

Thank you all. You always think this will happen to some else. I know I have to live my life and go on. I hope I learn to cope.

I am trying one day at a time but right now it isn;t working. Maybe the news is still too fresh.

[Tallblonde]

Whoa.  That kind of progression is very scary.  But I don't think it's time to be making funeral plans.  There are plenty of folks here who have treated at stage 4.  New Sojourn had ESLD when she treated and now she's living a full, active life without the virus.  

If I were in your shoes, I'd have my doctor run a Fibrosure test to see if it comes up with staging results that are similar to your biopsy.  It may be a long-shot, but lab errors do occur.  It is possible that your sample got mixed up with someone elses.  The Fibrosure test is a reasonable and affordable way to confirm the accuracy of your biopsy.

But again, there's no need to surrender to panic even if the biopsy is correct.  You'll be facing a challenge, no doubt, but it's not insurmountable.  You can get through this!

Hang in there and consider changing your screen name to "Very Determined."

Susan

[jmjm530]

Sorry about your biopsy report.

It seems unusual that it went from stage 1 to 4 so fast, so you might consider having both sets of biopsy slides reviewed by a second pathologist. Also keep in mind that because of the small sampling size, either report could be off as much as 1-2 stages.

But assuming the biopsy report is correct, the good news is that you can live for many sympton free years as a stage 4 . And the better news is that many stage 4's can still be successfully treated. We have a number right here in our discussion group.

There are 4 stages of cirrhosis  and "End stage liver disease" is at the far end of the spectrum. Given your lack of symptons, sounds like you're at the other end. And although there are no guarantees, many with stage 4 damage (cirrhosis) never reach end stage liver disease.

I'm assuming by the 24 wks of tx that you are a geno 2 or 3?

If so, you should be treated for at least 48 weeks because of your stage of liver disease and the fact you relapsed. You can probably be treated with the same peg as before since you responded, however details best left to your doctor who can review your individual stats. Just make sure you see a specialist  with a lot of experience in treating hepatitis c patients.

So, yes, you're going die. But with today's treatments, and newer ones not too many years away, it probably won't be from hepatitis c. But to make sure this doesn't happen, I'd get re-evaluated and into treatment soon. Also, you should have had a HCC tumor marker test along with the ultrasound. Both should be repeated every 6 months. You also might consider alternating MRI's with ultrasounds.

-- Jim

[timlotus]

I am very sorry to hear your news and I think you are being given good advice here. There is definitely cause for optimism and as Jim says you probably won't die from Hep C.

However I picked up that you were treated over 5 years ago which must have been with standard (non-pegylated) interferon unless you were in a clinical trial as pegylated has only been approved since 2001. If so there is even more reason to suppose that retreatment is worth trying as the clearance rates with peg and riba are much better than with non-peg and riba.

What genotype are you? Again I think up to around 2001 both 24 and 48 week treatments were being tried regardless of genotype. We all know Geno 1 and 4 are tougher to get rid of, but we are hearing more examples of type 1s with advanced liver disease clearing the virus and staying that way.

I wish you all the best in coming to terms with your news and moving forward with confidence,

Tim

[cuteus]

that is one of the puzzling things about hvc, hard to predict how it will affect the individual. It does seem to progress faster in some people and hopefully someday they can predict who is at risk for that accelerated progression. If the slides are read by another pathologist, with similar results, you still have options for erradicating the virus. Line up a good hepatology team that is willing to work with you to achieve SVR, including the ability to be flexible about dosages and treatment duration if you are not responding as well as expected.  It is disturbing how hcv is behaving in your body, but It too can fall under the sharp sword of interferon.
It is not too early to look for a graduation outfit.

[Forseegood]

Hi, just thought I'd throw in some anecdotal stuff in here. I go to many boards and talk to many heppers. I have talked to many, many people with cirrhosis. Like someone said, there are stages to cirrhosis, and youre on the low end. I have one girlfriend who has had cirrhosis for 9 years, and she's still in the beginning stages. She's doing fine taking care of her 8th grader, going on with her life. I know other people like her. My own younger sister has middle stage cirrhosis (was diagnosed with it 3 years ago) and she's fine, she just makes sure she takes excellent care of herself and takes her lactolose. She walks 4 to 5 miles a day. Your liver is in better shape than hers. This isn't an automatic death sentence and like some have said, you still probably have treatment options - and even if you didn't, many go on for years and years with cirrhosis. Hope this helps.

[HCA]

Biopsy reports are not gospsl!!!!!!!!!!
I had three at approx. eighteen month intervals.Same lab.
1) Stage 2 (of 6,not 4-Ishak fibrosis measurement system)
2) Stage 1
3) Stage 3-occasional bi-portal bridging
Doesn't make sense right?
I called the lab,spoke to the pathologist,who told me that in his opinion no.2 whch was prepared by a different pathologist was 'an under-call'.
He also told me that in his opinion there was no progression throughout the the three.
My suggestion-have the slides from your two biopsies compared by a single pathologist-you may find,as I did that the progression was nothing like as alarming as it first appeared.
The  reaper doesn't have his eye on you-get punching!
Good luck!

[jmjm530]

If you're going to get your slides re-evaluated, make sure you get ALL the slides as well as the original pathologist's report. There as many as five slides including the iron and tri-chrome stains used to determine bridging. Often they just give you the one slide.

[HCA]

Sorry to post twice, but notice that the date of Very Scared's treatment suggests that he previously did the old three times a week combo.
If he cleared and relapsed on that then his chances of SVR on peg. must be looking good.
Everything to play for!

[lackalustre]

to answer your question about the anti depressant.  trazadone isnt too hard on the liver.  it helps with sleep too.  will say  a prayer for you..    many people with cirrhosis do fine.  dont eat too much meat protein,  more fish, whole grains, fruits veggies, avoid too much dairy,drink lots of water.   dont take iron supplements but do take b complex and other vitamins.  be very careful with medications. it sounds like you are already exercising.

[aliaat]

Just a follow up to lackalustre's comment about vitamin B complex. You could ask your doc if this would help; the one my Dad takes as a hepatoprotector along with his statins is called Simepar (other name?). Composition: silymarin, Vit. B1, B2, nicotinamide, B6, calcium pantothenate, B12

[ps9670]

     All that have suffered with HEP C are feeling your pain, those of us that aren't where you are, Pray and continue to grasp at the new meds available for us, I personally know several with HEP C, soe have been through treatment three and four times, my husband has it, I'm his caregiver, but suffer as well, its a family disease, as many here already know, many have gone through TX four times before reaching undected, some relaspe some remain, a friend is on his 9 month clear after four times, many have been placed on the transplant list, " STARTED " treatment, and there liver responded so well, they was put back at the bottom of the list, which is a great thing, we want to hang on to our own liver for as long as we can, ME " PERSONALLY " we be trying another treatment available, when and " IF " you reach undetected again, stay on a maintance dose, thats our goal, my husband is about to start tx for the third time, reach undetected then stay on a maintance dose for an indifinite period of time, he to went from no stage, to with-in a year and ahalf to
Grade 2/ Stage 2 Fibrosis, it NORMALLY doesn't progress that fast, but with " SOME " you being in that catagory, have to seek Tx, or whatever else is available to TRY..Done 15 months of Pegasys and Riba, cleared the fibrosis, and then relasped,NEVER, give in to this disease, we all stick together as family and help get each other through it, I belong to a great support group, through DELPHI Forums, go into there, we're under, Emotional Support for Caregivers, anyone with HEP C is welcome, whether it be the caregiver or the carrier of HEP C....Please, feel free to go read the boards, and ask any questions you might have...YOU always have HOPE and FAITH....Keep it going.....Take care and God Bless..
     P.S.   Everyome here has given you great caring support, my Heart goes out to you all,   Sincerely,   Someone that cares...
    Patty......My email is ....***@****   feel free to email me anytime with any questions, Prayers are sent your way...

[fresnoborn]

personally speaking, I tried trazadone and it did put me to sleep but my face was very swollen during the whole time. Can you think of anything else that might help. I have been taking seroquel for 3 years and just found out it's not too good for the liver, any other suggestions?

[MsTigerHawk]

People can and do live for years with cirrhosis.  And many get liver transplants, which can prolong your life by many more years.  There are no guarantees.  We're all going to die, which is just a stepping stone to a better world. Anyone can die tomorrow in a car accident (or a hurricane/flood).  No one knows when their time is up.  That being said, I would get myself to a good gastroenterologist or hepatologist who can give you a good plan of action.