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Avatar universal

Short Intro and a long ESLD question

Hello All:

I've been lurking on this site for some time now and have just joined up bec I suspect I'm going to be in need of the support this wonderful community offers each other.

A little background:
Pink-slipped after 9/11, physical while still covered by insc revealed elevated enzyme levels, then biopsy
diagnosed  me as HCv (type1) positive. Did 24 weeks combo-therapy until Aug2002, which left me non-SVR and a wreck. During tx, i did ****** diet  (carrot juice, coffee enemas...) but stopped by end of 2002.

Since then, booze-free, diet/nutrition conscious, mostly organic, on suppliments (like milk-thistle), still a smoker though. I have blood-work done twice/year - nothing remarkable; also at times: CTscan, ultrasound, MRI, ....

Last month had checkup. Asked GastroEnt  to posit where I was and he suggested perhaps between stage3 and stage4; orderd first full blood-panel in 10 years, informed me of FDA approved triple-tx and suggested I do it.
After a bit of Q-n-A, we established that I'd be putting self through a 12-to-24 week grinder on a 50/50 bet.;
which he felt was worth it.

Now, I know this forum is a place for fighters, not quiters. I haven't lost hope and want the council of fighters.
But I also want to be realistic and if/when I'm at ESLD, get a handle on how much time I have left

I have some lower-rightside tenderness (near pelvis - a pinched feeling)  but no swelling, pains
or PHTension, and dont think i'm symptomatic for varices, jaundice; I'll know more in Feb w/endoscopy test.
I may not be at ESLD now, but also may not be far off. The panel results are not remarkably different from
2002, but I also know levels are no indicator of activity.


So I did some more research on INCIVEK and triple-therapy (this great site, wikipedia, livestrong,revolutionhealth, hcvets,...)  and found out that for my genotype SVR is still more or less improbable. F3/F4 fibrosis lowers success rates from 78 to 62 percent. Any detectable HCV RNA at Week 4 reduces that number to 54%, but suggests sticking out the 24 weeks anyway; despite also knowing that Prior Response Status cuts success at 24 weeks down to 14%.

I don't want to get too  hung up on numbers, but I'm sarting to conclude that my real odds of SVR after 1 year tx are about 1in10; with the first 24 being a 50/50 stab in the dark. Factoring in the added risk of increasing liver damage in 3x-therapy makes me wonder if I should put my sorry bod through it again.

I read here that a liver transplant usually only buys some time if the virus is still present as it will re-infect.
So, my question is whether I'm at ESLD now, or nearing that stage, how long (approx) does one have
until liver failure?  If I go gentle on my body, low-stress, good diet, etc... Is it less than 1 year, a few years,
more ??? I  realize I'm looking for a difficult answer; specially when so much is un-quantifiable.

I was hoping that I could put off tx two years; until i hit 62 and can 'retire'. This would give me a little bit
of a $ cushion, bec I'm pretty sure (based on previous xperience) that tx and the sx will keep me from working fulltime (if much at all); since last time around was a ***** and now i'm 10yrs further in and the new cocktail is harsher.

Any input is very appreciated, Kudos to all who are tackling this nasty condition. My wife and I celebrate
something called "inner christmas" . This year introduces thoughts on "the mystery of reciprocity".
I see a lot of that here and wish you all the best during solstice and these holidays.

Peace
31 Responses
1689583 tn?1387755994
I think the best one to answer some of your queries is Hector . He is our mentor here and is extremely intelligent in this area. Good luck .
Avatar universal
Have you actually had another biopsy yet? Your Dr cant possibly guess at the score. I too was diagnosed in 2001. My biopsy was 2/2. 10 yrs later, I had all kinds of bad feelings about having another biopsy, but my Dr would not treat without it. It came back 1.5/2 I just knew it had gotten worse, when in fact it had not. I also had the same pains you are describing.
If you were a non or null responder to tx last time, you tx will be 48wks.
Don't let all this ruin your holiday season. It may not be as bad as your GI is making you believe. I have a hard time with him suggesting what the results of a biopsy will be. You will usually find more info on here than your Doc will give you. Welcome to the group!!! There are so many knowledgeable people here. Ask questions, you will find lots of answers. Until you know for sure, relax and enjoy the Holiday.
163305 tn?1333672171

Yes, Hector will come and give you information taken from research and be nice and logical. But here I am with my history to share.

You seem to have some misinformaiton

If you do not have cirrhosis, you have not gotten to ESLD.
( Stage 4=cirrhosis)
If you are genotype 1,  you are the best type to do the triple treatment.

The sooner you do treatment the easier it is on you.
Do not wait until you have decompensated cirrhosis!!!!!!!

Nobody has a crystal ball with the date of death marked on it.

When I was first diagnosed with hep C, I had decompensated cirrhosis. The ascites was what brought me to the doctor.
At that time, it was estimated that I had 5 years.

I did tx. Treatment with decompensated cirhhosis is difficult and rarely successful. I relapsed.
4 1/2 years after my diagnosis I had a transplant.

Not everyone who has hep C and has a transplant must do hep C treatment. According to my hepatologist, some people's new livers seem to resist hcv. However, others, post transplant, develop problems more rapidly than pre-transplant and can have cirrhosis within 5 years.

I began treatment for the 2nd time 2 1/2 years post transplant due to progression of HCV. I'm genotype 2 and doing very well.

When did you last have a biospy? If it hasn't been within the last year, I'd get another one. It is the only way to know exactly how your liver is doing.

Peace, what a great idea!
Avatar universal
So far as I know, there is no way to guess at how much or how little liver damage has progressed in 10 years.  In my husband's case (age 57), he probably had Hep C, g 1a for 30 years when he was diagnosed in 2007 (fibrosis between 1 - 2).  He treated once, with only partial response.  When he had his second biopsy in 2010 he had progressed to beginning Cirrhosis.  He treated a second time, with only partial response.  He is currently treating with one of the triple therapies (Incivek, Peg, and Riba).  To my understanding beginning Cirrhosis (f4) is not ESLD.  It can progress to ESLD if the Hep C virus continues to damage your liver, but no one knows if/when that may happen.  As far as your chances for SVR with the new triple therapies, it sounds like you and your doctor may be underestimating your chances.  My understanding is that my husband has about a 59% chance of SVR with the new triple therapy.  His viral load was 78 at week 4, UND at week 8, and we are currently awaiting the results of his week 12 labwork.  If he remains UND with the 12 week check, he will continue treatment on Peg and Riba for 48 weeks (not 24) because he was a partial responder in the past, didn't have UND at 4 weeks, and has Cirrhosis.  My suggestion would be to switch from a Gastroenterologist to a Hepatologist and get a second opinion.  My guess is that you are a good candidate to treat now with one of the triple therapies, and, in fact, you probably SHOULD treat now given your age and the increased chances for your liver damage to progress at your age.  Of course, I agree with slideman, a liver biopsy will help determine when to treat.
Best wishes,
Advocate1955
Avatar universal
You could plug in your stats to the Child-Pugh mortality scoring chart if you had Cirrhosis.  But if you don't have cirrhosis.....it won't work.  Hey, you may never get it. I treated for 88 wks. SOC in 2006....did not clear until wk. 40. so did another 48 for good measure. Relapsed 4 wks after tx.stopped.  This time on Gilead Trial 5885, 9451 +SOC, I was clear at 2 wks check.  AMAZING!!!!!!!   Happy Holidays.  
446474 tn?1446351282
Since you ask some many questions I will only concentrate on the most relevant ones.

“he suggested perhaps between stage3 and stage4; ordered first full blood-panel in 10 years,”
You were treated 10 years ago and had CTscan, ultrasound, MRI but no blood tests or further biopsies? This make no sense. (!) No competent doctor gives a diagnosis of “perhaps between stage 3 and stage 4” if he has nothing to base it on since you haven’t had a biopsy or blood tests in 10 years! “Perhaps” is not a diagnosis.
CTscan, ultrasound, MRI for what? Imaging is for diagnosing abnormalities in the physical structure of the organs or for diagnosing tumors. Tumors are only a high risk in patients that have cirrhosis. Otherwise there is no point to having a $4,500 MRI. Besides if you have cirrhosis it will show up in all these tests. So your doctor should know if you have cirrhosis or not. Not “perhaps between stage3 and stage4”.
If what you are saying is true you need to get a new doctor who is experienced in diagnosing and treating hepatitis C. This person does not understand the basics of hepatitis C or liver disease.
Further evidence that you doctor doesn’t understand the basics of treatment. If and I say if you have cirrhosis you need to treat for about a year. Not 12 or 24 weeks. “a 50/50” chance? Based on guess work? You don’t even know how advanced your liver disease is. But since you have no real diagnosis… who can say how long you need to treat. First, you need a biopsy to find out how advanced your liver disease is.
Get a copy of all your records and …
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C.
A specialist (gastroenterologist or hepatologist) preferably at a large hospital.
Then all your questions will be answered.

“But I also want to be realistic and if/when I'm at ESLD, get a handle on how much time I have left.”
If you had ESLD you would know it.
No one can say how much time you have left. There is no crystal ball. We don’t even know if you even have advanced fibrosis or cirrhosis so first things first. Get a real diagnosis then deal with the real situation.

“I have some lower-rightside tenderness (near pelvis - a pinched feeling)  but no swelling, pains or PHTension, and dont think i'm symptomatic for varices, jaundice; I'll know more in Feb w/endoscopy test.”
Your liver is located in your chest behind your rib cage on the right, between your nipple and the bottom of your rib cage, NOT near your pelvis. So whatever pain you are having is not liver related. Secondly, a patient will only feel pain in their live area when they are close to death.

“So I did some more research on INCIVEK…”
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
Forget all the statistics until you get a real diagnosis. You are “putting the cart before the horse”.

“I read here that a liver transplant usually only buys some time if the virus is still present as it will re-infect.”
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
You are probably a long way from ESLD. You are worrying about something there is no reason to worry about.
Yes, and then post transplant patients treat their hepatitis C after they have had their transplant. So you must treat either before or after as hepatitis C injuries the liver over time.

“So, my question is whether I'm at ESLD now, or nearing that stage, how long (approx) does one have until liver failure?  
FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
Is your liver disease so advanced that you liver is unable to perform all of its functions? Are you vomiting blood? Is your abdomen so bloated that you look like you are pregnant with twins? Have you gone in a stupor where you don’t know where you are and walk around looking drunk or have you gone into a coma? Is your skin yellow? How many times this year were you hospitalize with life-threatening complications of ESLD? Have you lost your muscle mass? Do you have bruises all over your body because you are bleeding under your skin? These are some of the symptoms that can happen when a person develops End-Stage Liver Diesase.
As you can see, anyone with ESLD knows it. Unlike in precious stages of liver disease which is often asymptomatic. There life has changed dramatically. There can no longer work or socialize like before as the fatigue is disabling.

If I go gentle on my body, low-stress, good diet, etc... Is it less than 1 year, a few years,
more ???
Being gentle on you r body has nothing to do with the progression of liver disease as long as you are not ingesting toxic substances such as alcohol and certain medicines. The hepatitis C virus is injuring you liver every day as it replicates and the immune system creates fibrosis to protect itself from further injury. As I said there is no crystal ball for how any individual’s liver disease progresses over time.
But your liver disease stage is all guess work. First you need a proper diagnosis by getting a biopsy and a full blood work up. Then go from there.

“I was hoping that I could put off tx two years; until i hit 62 and can 'retire'. This would give me a little bit of a $ cushion, bec I'm pretty sure (based on previous xperience) that tx and the sx will keep me from working fulltime (if much at all”

If and I mean “if” you have cirrhosis it could be very dangerous to wait 2 years. The longer you wait the worse your liver disease the less chance of curing your hep C.
And if you should decompensate and develop ESLD you probably will never be able to treat and will need a transplant to continue living. Of course again all this depends of the current status of your liver disease.

FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C AND LIVER DISEASE.
Find a gastro or hepatologist at a local hospital that is experienced diagnosing and treating hepatitis C ASAP. Get away from your current doctor as he/she has played Russian Roulette with your life by not monitoring your liver disease over the last ten years (as you have aged and liver disease progresses more quickly). Then and only then will you know where you stand and then can make decisions based on reality not guess work. Then we can help you.

Good luck.
Hector



Avatar universal
Hey koko, welcome. As was mentioned above, I would get a hepatolgist and possibly get another biopsy which I understand to be the gold standard of a diagnosed liver to find out where you really stand as far as your grade and stage damage. Also find out what genotype you are, the two new medications that are triple therapy are only approved for use on people who have G1a and G1b, although you can treat with Peg/Rv. I myself am Grade 2 Stage 4 cirrhosis,dx in 2009, and am waiting to get approval for Victrelis, I'm what you call  "compensated liver".

Regards
Charlie
223152 tn?1346981971
Why did you only do 24 weeks the first time?  When or did you ever reach UND?  Were you compliant?  You said tx left you a wreck.  Well, be advised that adding another medicine to the mix does not make it easier.  You mentioned 12-24 weeks.  That is wrong.  With the PIs you are looking at 24-48 weeks.  If you have cirrhosis which you won't know unless you get a biopsy, you will have to do the 48 weeks regardless of your success.

You sound like you are nonsymptomatic.  Even if you are stage 3-4 which is what my biopsy reflected, you are a long way from ESLD unless you are showing symptoms.

It sounds like your questions is, how long can you get away without treating.  It sounds like you are in a bind -- maybe until you can get on medicare.  You said you have a 50/50 chance with the new PI's.  I think I need some more information to determine that -- it sounds too low, but it depends on whether you are a nonresponder, relapser, or had a break though.
Avatar universal
Hi and thanks printze (and all) for responding:

Good point;  yes I'm due for another biopsy; and you're absolutely correct that a biop is the only real evidence.
I havent heard from my GI yet, but am curious about what he'll report.  I know I'm showing some symptions (fatigue, poor digestion, etc...) but nothing like black stool or bloody urine.
Also,  I just started wellbutrin 6 weeks ago and dont know if that factors; for depression but also to quit smoking.

Yes, "how long w/out treating" if that really is pragmatically my best/only choice. 50/50 at 24 weeks meaning a) its all or nothing and b) type1 and non-responding in 2002 reduces my chances of going from 25-48 weeks.

Thanks again
Avatar universal
Hi and thanks

My GI is just being frank and corroborating what i've read about 3x therapy. He is advocating i take it ASAP, but realized that I 'could' go 24 weeks for naught and is saying as much.
If you have cirrosis, and bridged scarring, how could your biopsy possibly show an  improvement? Not that I'm complaining as if true then my outlook would improve tremendously.
I know i should not jump to conclusions w/out one, but my impression was that my liver would never get better only worse.
As such I thought it natural to believe that after 10 years a biop would only indicate more deterioration.

"If you were a non or null responder to tx last time, you tx will be 48wks. "
My understanding is that a null/non may not even get past 24.
Its based on this:

"Twenty-three percent of INCIVEK-treated subjects had cirrhosis at baseline. SVR rates among cirrhotic subjects who received INCIVEK combination treatment compared to Pbo/PR48 were: 87% (48/55) compared to 13% (2/15) for prior relapsers, 34% (11/32) compared to 20% (1/5) for prior partial responders, and 14% (7/50) compared to 10% (1/10) for prior null responders."

'The following points should be considered when initiating treatment with INCIVEK:
•  A high proportion of previous null responders (particularly those with cirrhosis) did not achieve a Sustained Virologic Response (SVR) and had telaprevir resistance-associated substitutions emerge on treatment with INCIVEK combination treatment [see Microbiology (12.4) and Clinical Studies (14.3)]."

SIDE NOTE:
when i did my 2002 tx I felt that even though i never passed the 6 month mark, that by drastically reducing the load during that time I took some stress off my liver and perhaps bought myself a bit more time; despite knowing the load/activity would go back up.

So, another ? i have is if I undergo 3x and blast self with antivirals
even if i don't get past week 24, will my liver be better off for having a substantially reduced load ?? Will that translate to reduced activity for a meaningful length of time?

Thanks again and merry holiday


Avatar universal
Thank-you for all your insitefull comments! Instead of replying to each, I'm just going to post to all and say that your inputs have clarified my present status a whole lot; its like a xmas present.

First, I think I jumped the gun a bit and apologize for same. I had bloodwork done 4 weeks ago and had not heard from Dr in meantime. Since he's usually prompt, I concluded that he's either
sparing me bad news b4 the holidays or (less likely) there was no immediate need.  My Dr. is not estimating (over or under) anything. He actually is saying it holds out hope and suggests I go on it at earliest chance. But, he also wants me to understand both the sx and the probabilities.  The math in the original post is all mine; taken from this and other websites; which i can cite and believe is accurate.

Nevertheless, I went to Hosp Records and got the results along with my 2001 results and did side-by-side comparison.
I knew, and appreciate your reminders, that a biopsy (+endoscopy)  is waiting for me in the new year and will reveal my present condition.  
What spooked me though was my inability to find info on
"Viral Markers" results. Specifically the "Flag"  for
HEP C DIAG PROG
HEP C GENOTYPE 1b
HEP C AMP
and ALPHA-FETO,SER    C H
I know what the 'H' means, found the AFP interpretation at
http://cclnprod.cc.nih.gov/dlm/testguide.nsf
but got bit by the itch that  might mean cancerous
(i know, i know, don't have to say it..)

My bloodwork seemed not too different from 10 years ago, but i mistakenly believed that fibrous bridged-scarring was a form of cirrhosis; and that being degenerative, would only have gotten worse. I don't know how long one can remain in a "Stage" but I knew I was stage 3 when diagnosed.

So, I wrote my original post in order to get a better handle on this in preparation for what I'd hear from my GI, not the other way around. I know what he is going to say: take the tx suffer the sx
Its just a question of when for me as next year is really bad timing.

I'll follow-up with biopsy results when i get them because you all are an invaluable objective resource.  Thanks for putting me at ease (to whatever degree is possible)  and have a safe and supportive holliday!

SPECIFIC REPLYS FOLLOW:

Orphanedhawk:
Thanks for the clarification and the encouragement.  2x the tx and a x-plant! wow you are a model of strength and  I hope I can emulate your fortitude.

Advocate1955:
I think my condition is somewhat similar to your husbands. I prob contracted virus 30+ yrs ago; did combo tx in 2002.  I don't think i completely understand the difference between partial, non and null in response,  but after 24 weeks went off because my load was substantially above SVR. If you don't mind my asking, how's your hubby doing w/sx at week 8? What level of activity is he able
to maintain?

Thanks for the clarification on f4==cirrhosis! I know i have bridged-scarring, I know I'm well into f3 and my GI (like others here) say accurate determination is difficult; mostly based on clinical observation and comprehensive overview of tests (Chemistry and Liver Panel etc...)  Also, thank-you for the hepatologist suggestion. I concur and have been making calls. Its just that i've been with my GI this whole time and i do trust him. But i realize it my body and my decision and 2nd opinions never hurt:)

Hi beyondmwd
Judging from everyone's comments, I guess in all likelihood I'm not yet Cirrhotic, or only entering the Cirrhosis stage Wow, 88 weeks, plus 44 weeks! I guess your perseverance paid off; 'cleared' must be such good news.
Thanks for sharing.



Hi HectorSF :
VERRY SORRY, my post was WAY too non-specific and your opinion of my GI is misplaced. My bad.
I tested positive in fall2001 after biopsy and other tests.
Underwent combo tx until Aug2002 (peg-interferon/ribavirin) - was no SVR so it was discontinued.  Between 2002 and 2011 I have have bloodwork 2x annually. No point in complex testing, just the basics  (e.g. chemistry panel and liver functions) to monitor enzyme levels etc...

Over the past 10 years i have had ultrasound (2x), CTscan (1x); as for the MRI (2009 i think) i'm not entirely sure why, that year i had an endoscopy done as well (clear).

"If and I say if you have cirrhosis you need to treat for about a year"
Others have said same thing. Can you point me to a reference ?
My take, from the responses, is that i'm prob not into stage 4 yet, my liver is still compensated, and as such i'll assume for now that I don't yet have cirrhosis.  Are the results of a biopsy the Grades
for "Portal, Lobular and Fibrosis" ??

FIND A DOCTOR WHO TREATS PATIENTS WITH HEPATITIS C.
My GI is a specialist at a 'medium' sized hospital.  Though I'm going to ask him how many others he's treating for HCV AND find a hepatologist; Dartmouth-Hitchcock is just too far away for me to visit regularly.

"Is your liver disease so advanced ...."
Thanks for clearly painting the picture of what ESLD entails.
I (now) know that my concerns are mostly guesswork w/out another biopsy. I believe my dr is pretty competitent, I just 'jumped the gun' i suspect.  My GI is a specialist at a 'medium' sized but respectable hospital.  Though I'm going to ask him how many
others he's treating for HCV AND find a hepatologist; Dartmouth-Hitchcock is just too far away  for me to visit regularly.

Basically you, and everyone else here,  are the 'informed' opinion i have; if not to balance my Dr's assessment against, at least to ask
intelligent questions.

frijole:
I was told by dr (and searching) that if not SVR after 6mo the 12mo tx will not have any appreciable effect.  Sure, my load will drop but i will not clear. As for sx, yea - so i'm told; the 12-24 is my understanding that the 12weeks including INCIVEK should drop the load sufficiently enough that the PEG/RIBO combo can clear me after 24, or so hoped.  The 50/50 was that at 24 weeks i'm either good  to go another 24 or it was all for naught. I'll stand happily   corrected if i'm wrong on that.  But as a prior non-responder, my odds are somewhat reduced.


Avatar universal
" Dartmouth-Hitchcock is just too far away for me to visit regularly. " I made the trip up to Dartmouth over 30 times during my treatment (72 weeks). SVR, well worth the trip (2 hrs each way) - top notch is an understatement. I highly suggest you get an appointment with Dr. Brian Berk in the gastro/hep dept.

Best of luck
pro
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