Hep C Discussion Forum

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.

 

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.

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.

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

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. 

Michaele wrote:

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

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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.

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

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       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.

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.