Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Post Info TOPIC: cirrhosis or no?


Guru

Status: Offline
Posts: 3249
Date:
RE: cirrhosis or no?
Permalink  
 


Barnacle, 

Weird how things turn out! Misfortune turning to fortune. High F score got you sof!, we ended up being very lucky ones!  :)

Getting further fibroscans, U/S's or whatever, is as simple as a doctor agreeing you can have them and ordering them for you.

I have a lot of my test data within my "profile" (if you are interested to read any of it), but I have not updated yet it with the most recent fibroscan and other data, so, here is a June post I made in regard to my latest tests (fibroscan) and when that was last done ...

_______________________________________________________________________________________________________________________

... OK, here are missing labs, that I just chased up, that were supposed to be included my other post below! (Obs, you will note I AM one of those people who apparently has had a miraculously reversal of their cirrhosis/fibrosis/liver firmness/steatosis)!

By fibroscan I was F3 (12 kPa), then F4 (12.6 kPa) prior to treatment, after treatment I went down to F3 (11.8 kPa) and then I plummeted down to F0-1 (4.7 kPa)!! The 4.7 one, done January of this year, that was only 6 months post-treatment!

Now, being 12 months post-treatment, unfortunately, they did not repeat the fibroscan at my recent doc visit, but, I do have these Fibro-Test blood tests which are also backing up the astounding bounce-back in my liver!

My Fibro-Test blood test (6 months ago) had already dropped me down to a F1-2/moderate fibrosis level, now, the current Fibro-Test (I just had done), has me at F1/no or minimal fibrosis ! biggrin

Even my ELF test from 6 months ago, in which the hyaluronic acid was high, now shows a normal range for hyalur-acid! My ELF score is now only 8.85!

ALL of my previously altered bloods have improved since treatment!, and are just about perfect, save for some minor blips. 

I am very happy to see my AFP just keeps going down and down! It was just a tad over limit pre-treatment and then it just kept steadily plummeting after treatment. In the last 6 months my AFP has gone down again!, from 4.7 to 2.7!! 

My hemoglobin A1C is normal at 5.5 (even if my fasting glucoses are sometimes a tweek over), and my chols. are still a little funny, but not too bad, HDL remains a little on the high side, and for the first time my LDL is a little on the too low side.

I'm telling ya - these DAA's are miracle drugsbiggrin C.

 

 

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Senior Member

Status: Offline
Posts: 125
Date:
Permalink  
 

Hi C.

Thanks for your words of encouragement. I am curious as to how long after SVR did you see regression in your fibro scores, As I am not enrolled in any study I doubt I would be able to get regular fibroscans, and for that matter I am not sure what benefit they would be to me. The high score  I got pre treatment was possibly  a mixed blessing as it enabled me to qualify for treatment with sovaldi which was not previously known on Vancouver Island. I was the first patient on VI to receive it I am told.

 

 



__________________

57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Hi barnacle,

Glad to meet you, another fellow BCer!

Congrats on your 3 year SVR - nuttin better! (Unless of course you happen to receive more good news like going from "pre" 14.7 kPa to current 5.3 kPa)!!!!!!!!!

Lovely news indeed. 

Now, personally, I would wish (for myself) continuing surveillence of my liver by all means and methods (but that's just me!) - bloods, imagings (abd. ultrasounds that you have been getting), and fibroscans (of which you have only had 2?).

If you have had many bloods and U/S's done over these 3 years - great! - it is good to be well followed (I think) and not just for HCC either, there are a multitude of conditions that can be revealed over time via surveillance. It's a good thing (in my book) of course unless you find it inconvenient, a pain or objectionable. I think continued negative results, and indicators that all is well, is a "positive" and good to know.

If your doc is suggesting to do less testing, he could be making a very good suggestion. Maybe a safe bet, better all around for everyone, I wouldn't know. 

Normal physical exams, normal labs, normal AFP's etc., all to the good? Assume you are doing and feeling well ... so, really, we have no idea what he sees or doesn't see on your U/S's (or any other liver imagings you may have had done), comparatively, repeatedly (over time) from before treatment and then through and after treatment, so unless he or some radiologist is saying gee whiz, this guy's liver adjacent organs and guts have shown nothing but perfectly normal  since ____, then it would be easier to accept a decision not to do U/S's "as frequently" just based on one normal kPa measurement. 

If it were me, I would opt for continuing the U/S's, while having further repeat fibroscans done (other than basing a decision now on just the one single normal fibroscan you have had done thus far), and then make a decision with your doc about how often further U/S's and fibroscans should be done.  Could be overkill, but what do I know - err on the side of very obvious boring normality I say.

U/S's and fibroscans are painless, easy to do, and good data - and can offer more info than just looking for HCC. 

I also had phenomenal and quick resolution of my fibrotic levels post-treatment. My regression (and my liver becoming less firm/more "elastic") in part may have had a bit to do with steatosis levels as well. I would be wanting more than just the 2 single fibroscans you have had done though, to base a decision on (mind you, that 5.3 kPa is looking mighty fine indeed to me!) I'll say - you should be ecstatic with that number!! My ultrasounds also allowed my to see an apparent resolution of a liver granuloma and perhaps a previously enlarged lymph gland calming down. My ultrasounds also revealed some calcifications no one had previously been aware of from "pre" U/S imaging, which facilitated getting a further defining Cat scan, so, following is good.

I only got up to 12.6 kPa's, a "technical" cirrhotic (according to my trial people), after my trial was finished I was fortunate enough to be enrolled in their ongoing 5 year follow-up cirrhotic program which includes regular (for the time being) an U/S, then 6 months later a fibroscan, and alternating between the two. I am glad to do it. I have learned quite a bit from all these ongoing tests and labs.

I was dumbfounded when I got my first "perfectly" normal kPa, I can't wait to get my next fibroscan and re-confirmation of same! 

Really great news your KPa is so normal now! Yay! C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


Admin

Status: Offline
Posts: 9031
Date:
Permalink  
 

That's significant! Makes me wonder if the original fibroscan was accurate. Sometimes inflammation can alter results and provide a higher fibrosis reading. Whatever the reason, going from cirrhosis, which begins at 14.5 (F4) to 5.3 (F0-F1) is huge over a 3 year period! Wow...! 

I would discuss the results with your doctor and make a decision then. If you don't want to continue the 6 month testing protocol, maybe annually for a couple two or three years and then discuss it again. That's an amazing reduction in Fscore

You've got something big to smile about tonight, that's for sure! Congratulations on the obvious improvement!



__________________

Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Senior Member

Status: Offline
Posts: 125
Date:
Permalink  
 

So just got back from fibroscan. 5.3Kpa down from 14.7Kpa. Gotta say I'm pretty happy right now. I'm going to ask if I can stop doing regular HCC ultrasounds with these results.


__________________

57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!

Tig


Admin

Status: Offline
Posts: 9031
Date:
Permalink  
 

Good luck! I'm going to be curious to know how it goes. There have been some good reports regarding fibrosis regression and now that you've got a few years behind you, this should be a good indication of that. Your doctor, I'm sure has been palpating it and a cirrhotic liver can have a noticeable feel. Kind of like lumpy shoe leather! If you're softening up, I'm guessing you're going to see some nice improvement. SVR +3 years is a nice improvement all by itself!  



__________________

Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Senior Member

Status: Offline
Posts: 125
Date:
Permalink  
 

Just looking back at this old post. I am going today for a post treatment fibroscan. My Dr feels if there is regression of the fibrosis, we can back off on the regular ultrasounds.
I'll check back in here when I know the numbers. My pre-treatment numbers were 14.5 Kpa
I did a 12 week Sovaldi/Simeprevir/Ribovirin cocktail and was declared SVR 3 years ago. Fingers crossed.


__________________

57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!



Guru

Status: Offline
Posts: 513
Date:
Permalink  
 

Hi Mallani,  Nice to hear from you again,  it's been a long strange trip.. Hope to be approved by Medicare soon. Seems positive results have been rolling in on the S/O protocal. The fibrosure results are the least of my worries, as I have been so fatigued. Glad your doing so well,  stay well and enjoy.  Thanks for responding .    Michaele



__________________
MDodrow


Guru

Status: Offline
Posts: 513
Date:
Permalink  
 

Hi Groupergetter, the Dr said even when its 's approved medicare takes time to get new drugs out on thier list of approved drugs, guess he figures I've waited long enough. Think they make list after the first of the yr. My old Dr said she would start me on new drug after the 1st of last yr, then jacked me around for a few months, until I started calling alot, asking what the hold up was ; as her nurse assured me it was all set. Then she decided to consult other Drs, and decided new drugs wouldnt work with out the Riba and interferon. So She with out asking me, sent me to an infectious disease specialist who had good results with Hep C pts. First visit he said he does not use the S/O, as not enought data collected. Now after nearly 6 months he said ok, alot of positive results.  He wants to get started now , as my platelets and WBC are so low. Thanks for taking the time to reply.   Michaele



__________________
MDodrow


Guru

Status: Offline
Posts: 3397
Date:
Permalink  
 

Hi Michaele,

Welcome back! As others have said, don't be too concerned about a Fibrosure result. It's unreliable.

Glad to hear you're starting treatment, and best of luck. It's no time to be worrying about HCC, and in any case, your figures are way out. After you get your SVR, the risk will be greatly reduced.

Keep us posted. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



Guru

Status: Offline
Posts: 796
Date:
Permalink  
 

Hi Michaele, at this point you may want to wait for the Sovaldi/Ledipasvir coming out next month.  It will be FDA approved and is supposed to have higher SVR success than the S/O regimen.  I relapsed on the S/O and am praying my insurance will pay for another round.  Hope this all works out for you.  Folks here have some idea of what you're going through and know how difficult it can be.  Stay strong, and be well. 



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



Guru

Status: Offline
Posts: 513
Date:
Permalink  
 

Hi Isiscat2011 ,  My GI/ hepatologist sent me to a special specialist @ the  Dept of Infectious Disease at ECU; the teaching hosp for ECU med student and reasearch. At first doc said no to the S/O, because not enough data . Now, 6 months later he said " ok, alot of positive data has been collected."   So now I hope to get payment approval. I am Bipolar and am borderline for Glucoma, so I may have been on the list even without the cirrhosis. LOL  But I was just reading that one is suppose to fast for at least 8 hrs before test. I took my meds and I eat in a grazing style; so Im always with a bite of this or that in my hand. Does make me wonder. Thanks for the reply.    Michaele



__________________
MDodrow


Guru

Status: Offline
Posts: 1724
Date:
Permalink  
 

Michaele wrote:

I was F2-3 in 2012.   Im to tired at this point .   


Hi Michaele:  

I know what you mean. The whole process can be exhausting especially when one is fatigued to begin with!

Tig is right that Fibrosure results are notoriously unreliable.  The good news is the F-4 classification, even if erroneous, should propel you to the front of the line for tx.  Once you have completed tx I would highly recommend getting a fibroscan or another biopsy--your choice.  You need an accurate liver assessment to determine whether or not you actually have cirrhosis.   I would find a good hepatologist who is very familiar with HCV--preferably one at a teaching hospital--for the liver assessment.  

Actually, a proper liver assessment should be completed before tx, because the tx protocol should take cirrhosis into consideration, but I doubt most tx will be tailored to the individual anyway.



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



Guru

Status: Offline
Posts: 513
Date:
Permalink  
 

Hi Tig56,  I was F2-3 in 2012.   Im to tired at this point .  Im just going to hope my drugs are approved. Would have been nice, if my GI didnt jack me around and just wrote the Rx at the beginning of the yr.  It  took 6 months for new dr to say ok. Time will tell, hope your doing well, thanks for reply.   Michaele

 



__________________
MDodrow
Tig


Admin

Status: Offline
Posts: 9031
Date:
Permalink  
 

Hi Michaele,

Sorry you've received this kind of news but I question the validity of Fibrosure. Were I in your position, I would insist on a Fibroscan at the very least. Even Fibroscan can be questionable at the high and low end of the fibrosis spectrum. Fibrosure is well known for it's inaccuracies. If possible, I would ask for a confirmation via Fibroscan or biopsy. Given the significance of the diagnosis, I would personally ask for a biopsy. It is still IMO the gold standard of fibrosis determination. Good luck...

Tig



__________________

Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 513
Date:
Permalink  
 

Hi All,   Just got results of Fibrosure test ordered pre treatment by Hep C nurse. Seems to apply for payment approval they needed newer results than biopsy done in 2012.  So Im 0.84 = F4 . and  necroinflammat activity 0.66 = A3/ severe  activity. Well, Im not supprised; only it does make me a little sad. Looks like even if cured , still will have a 25% risk of liver CA the rest of my life. And that's if I get approved for RX and tx works . Have not posted in a long time but have read whats going on now and then. Hope everyone get the meds they deserve with good out come.  Prays all around Michaele     Dr using S/O protocal



-- Edited by Michaele on Wednesday 17th of September 2014 04:01:22 PM



-- Edited by Michaele on Wednesday 17th of September 2014 04:45:59 PM

__________________
MDodrow


Guru

Status: Offline
Posts: 796
Date:
Permalink  
 

Nice fish Malcolm, just got a new custom fillet knife.  Wish I could fillet those bad boys for you.  Still smiling when I see that big ole SVR   biggrin    Be well sir.  

David, glad to see you labs back in the normal range.  Curious where mine are at this point, but probably won't find out until early October.   Take care.



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



Senior Member

Status: Offline
Posts: 125
Date:
Permalink  
 

Interestingly since treatment all my readings have returned to normal. My platelet went from 70s to 140s in a month. Anyway they are ordering regular HCC testing which sounds like it might be a good idea. I assume when they say you have a 20 year olds liver they aren't talking about a 20yo college student.

__________________

57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!



Guru

Status: Offline
Posts: 3397
Date:
Permalink  
 

Hi David,

The 'official' cut-off between F3-4 and F4 is 14.5 kPa. Some Hepatologists have chosen their own cut-off's, based on correlation with biopsy findings.

With my doc, and a reading of 14, you'd be called cirrhotic. It really doesn't matter much, as F3-4's should be treated in the same way as F3-4's . Histologically, the only difference is that F4's have thicker, more haphazard fibrous bands with more disruption of the liver architecture. The regenerating nodule is said to be a feature of F4's but these may be missed on biopsy.

Decreased platelets, decreased albumin, increased PT(INR) and bilirubin are all associated with cirrhosis.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



Guru

Status: Offline
Posts: 1724
Date:
Permalink  
 

A fibroscan score of 14 would be sufficient to diagnose cirrhosis.  My hepatologist calls the cut-off for hepc related cirrhosis at 12.5, although I have read that 14 is also used as a cut-off point.

In close calls they may also look to blood values, physical manifestations, and other things for a definitive diagnosis.  Btw, that is about the same fibroscore I have and my doc has definitively diagnosed cirrhosis.  



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



Senior Member

Status: Offline
Posts: 125
Date:
Permalink  
 

When I had my fibroscan the reading was 14 k/pa and I was graded in the 3-4 range. The doc evaluating the scan said I don't have cirrhosis but do have advanced fibrosis. My treatment nurse has several times mentioned things relating to my cirrhosis. I don't know if it even matters or not but when does fibrosis get classified as cirrhosis?

 



__________________

57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!

Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.

Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.