Score of 14-14.5 on Fibroscan

[cwar]

What does this mean please?

Thank you.

[willing]

bx is still, by far, the dominant technique for assessing damage, and will be required for most trials (plus there still seem to be less than a dozen machines in the US). If your two FS readings were inconsistent it might make sense to pursue the bx to see which one was off, but they're not.

Mike's experience ruled out one of his FSs as an outlier.. Likewise, when my 1st FS came in at a suspiciously high  14 I followed up with another bx and last December with a 2nd FS which came in at 10. That value is consistent with staging from the bx slides, so I assume, to the extent it's possible to know, that's where things are. However assuming that the difference in the two FSs indicates an improvement or that a bx would add additional 'precision' in staging seem doubtful.

[Bali05]

the liver centers that  have FS say bx is an invasive risk and in my situation uncalled
for. the liver centers that do not have FS categorically say I have to have bx unless
I treated now. They have been saying that since I was dx in june09.

i chose to educate myself first and in the meantime found out about things like:
-FibroScan
-Alinia (for Geno4)
- checking insulin resistance
-Vit D level
-predosing riba

and more.

[willing]

given that no diagnostic test is perfect, the sensitivity of a test just measures how often the test tells you you're OK when in fact you're not. A high sensitivity test has a low number of false negatives - if the test says you don't have it, you can rest easy.

The results from the study reported by Afdhal, show a sensitivity of 77-87 for  a FS cutoff of 12 kPA  in  diagnosing cirrhosis. However sensitivity dropped to 59-72 in identifying undamaged (F0-F1) livers at a FS cutoff of  8.3. Part of Afdhal's point is that staging is suspect as a  gold-standard, so the lower sensitivity just reflects the poor agreement among pathologists.   On both your recent tests,  you came in below the 8.3 cutoff (in fact only two measurements  in Germany were above that ).

Bottom line  seems to be that (a) there's no way to be sure, and as your Drs told you.  a bx, which will examine a much smaller part of your liver won't reduce the uncertainty (b) to all indications your liver is  close to undamaged and you're in a good position to wait.

[Bali05]

what do you think my readings are ?.

my fibroscan improved from 8.0 kpa to 5.9kpa in seven months.

5.9=F1 biopsy at this point is not called for. if i were at a higher stage

and still wanted to wait i would need bx to confirm. FS is pretty accurate

at low and high readings and less so in between.

the highly trained are agreeing !

the vaccine you are talking about is for geno1 and i am geno 4.

i am leaning towards treating now since i am naive. want to predose

riba which my hepdoc will do but they say it can eliminate me from trials

in the future. if i do it on my own what do i do if my hgb drops ?

[merryBe]

I think your results kinda prove my point about the jury being out.

If the most highly trained can't agree even when time is taken...it's back to the drawing board is it not?

Any reason you couldn't do a biopsy? It would sure narrow things down for you.

Too many tests?  NO such animal...
tests cost but we learn from them...I wish we could test every time we add or subtract anything...so we could know what is working...but like that'll ever happen...I had to fight just to get my iron and ammonia followed.

Since you have the ability to travel, check out Inovio's new vaccine...if I were to treat now, I'd fly there for the vaccine, then the chemo is a mop up of the 1-2% or remaining virus....I'd do this, assuming it was available, and then hit it with riba and alinia predosed, then INF and probably boceprevir for the final knock out punch.

ask me again in a month and that may change, but things are looking up...
I'm confused by your reading...they don't sound like stage 1 to me.

mb

[Bali05]

you seem to understand these sensitivity issues.

i have to admit  i get lost , maybe you can help me understand this.

i did a total of 3 fibroscans . 8/20/09 germany  and 3/19 , 3/25/10 NYC

let`s forget the metavir translation for a moment and only look at kPa readings:

Germany  10 readings
average kPa 8.0 interpretation by german Prof hepatologist  : F2-F3
7.8 , 8.2 , 8.7 , 7.8 , 9.3 , 8.9 , 8.2 , 7.0 , 7.8 , 7.1

7 months later
(after various intensive non traditional anti fibrotic treatments , incl
2 months IV treatment)

NYC ten readings
average 5.9 kPa
all ten readings close to 5.9 with a variance factor of 1.4

since this means improvement of kPa i went back one week later and challenged
the result. a different dr. with fibroscan experience took readings. i showed
her my report from germany and asked her to look for those higher readings
but she could not find them !
NYC repeat fibroscan one week later
average 5.4 kPa
5.9 , 5.4 , 4.6 ect...

the report from germany has a scanning image on it and the new york dr.
said by the image she can tell that they definately got the liver and a good
reading.
she wanted to know if i knew my alt when in germany because high inflammation
can have an impact . i told her alt was about the same.

FibroScan measures an area of the liver that 3x3cm cube. I had her change
position to get different cubes. By the way the area FS measurs is about
1000 times larger than bx.

whatever i did between than and now improved my kPa reading , i can say
this with certainty now .

Over at Mt. Sinai in NYC they feel confident that I am F1 and since I was infected
25 years ago this means slow progression so far.

I will recheck my status every six months as they routinely do at that hospital

regardless of treatment decision.

what is your take on my FibroScan results in reference to sensitvity?

[willing]

some of these issues are covered in Afdah;s presentation. The sensitivity/specificity for the recent US trial were very close to those of previous published analyses (slide22).  FS did well at identifying cirrhosis at a cutoff of 12Kpa (both sensitivity/specificity around 0.8). It did less well at distinguishing F0-F1 from more advanced (sensitivity as low as 0.59) - which is also where there was less agreement from bx.

As patients doing the watch and wait thing, sensitivity seems the more important value as a test with low value is more likely to give a false sense of security.

[Bali05]

I have only seen kPa so far (germany,usa}

[chemister]

We have to know what the fibro-scan number is telling us. I had 5.8 and that was not Pascal, the number was going up to 50-100, and my 5.8 was not any fibrosis. My doctor had 6.4. I don’t know what this Europe fibro-scan limits was, only that my numbers was good and I had any fibrosis. I thought that is many different fibro-scan and only the specialist can tell you what the number are. KPa is maybe most used in the US?

[Andiamo1]

I don't remember the probability of SVR with Geno 4.  Depending on that probability, I would wait if the SVR probability was 50% and treat if it were 80% with 6 months on treatment.  We all guess at this and so much depends on your personal circumstances.

If there is a way to avoid Interferon and Riba, it is worth waiting for.  I had no choice; I was stage 3 - 4 transitional and getting worse rapidly, so I could not wait.

Best of luck to you.

[Bali05]

thanks for sharing did not know that , very interesting
I am low BMI and no scarr tissue.

Bottom line for me right now can I wait for next year to see what Telaprevir
or R7128 (maybe phase 3) will bring to the geno 4 table or am I doing
Alinia+SOC now .

What would you do Andiamo ?

I am almost afraid to post this here because I have been accused of being obsessive,
and overly self-indulged by various members with doing too many tests.

However I am challenging my recent F1=5.9 kPa  result . I could just run with it
because it is better than what I got before in Germany 8.0kPa = F2-F3
and we all like good news in this misery. But I am not. I want more certainty
especially when it is as easily done as FibroScan. So Iam going back
and do a let`s call it Fibro-Re-Scan and if that comes back around F1 I will rest
on that one for the time being.

[Andiamo1]

When I was last at Mt Sinai, they only had one probe for people with low BMIs.  Fibroscans require different probes when people with high BMIs are tested.  The probes are very expensive and Mt Sinai did not have the one for high BMIs.

I also had gall bladder surgery and that confused things, since I had mine out before laproscopy and the scar tissue interfered with the test.

[Bali05]

yep, there are many ways to look at it.

i happend to be rather skinny bmi 23. also it appears based on my experience

so far that there are not that many fibroscans around. the two places i went to

are highly specialized liver centers like Mt. Sinai Medical Center with Dr.Douglas

Dietrich or in Germany Heinrich Heine University Dusseldorf with Prof.Dr. Hausinger.

If it were some gastros office somewhere who just tries to boost his business

I could understand but these are people who are very specialized.

[merryBe]

yes, but Europe cannot be held up as the high water mark either, they have socialized medicine and don't do as much research as we do, and they choose cheaper test methods just as we are now doing.
here, docs now push for ultra sond screening for HCC as an example, even though if you pin them down they all admit MRI's are better...but MRI's cost more...

look, biopsies aren't perfect either...an inexperienced pathologist could be off by an entire stage...unfortunately the subjectivity hasn't been entirely removed...
but my concern is based on the data....very different readings from technician to technician, and very different reading on those with higher BMI's or with ascites and/or abdominal girth.  Couple this with the goal of doing scans in half or a quarter of the time they should be done in....and you have a recipe for letting lots of folks slip through the cracks...Until these issues are resolved, I'm not buying it.

BIOPSY IS surgical and involves risk and far more expense, so let's not assume that going to fibroscan is only because it's a better technology, the fact that it is non invasive, requires no hospitalization,  AND will hence save those countries millions of dollars every year plays more than a passing role.

[Bali05]

the staging process as we know it has its pitfalls and for the time being we have to
make do with what we have.
Seems like in Europe now more and more major liver centers are to walking away
from biopsy alltogether and work exclusively with FibroScan.

[merryBe]

I've corresponded with 2 doctors, one who is world renowned and will probably invent his own improved version of the machine (just guessing), one who is a radiologist with the disease.

they both concur that accuracy is an issue with fibroscan, furthermore the fibroscans are proving what biopsies often miss, that  there can be pockets of healthy and very diseased tissue...that the former assumptions that every liver was consistant across both lobes is falatious, and...here's a note...ultrasound shows nest to nothing...it's not an accurate tool for determing stage/grage or cancer HCC...so I would not get too concerned about that reading.
I would say that if doctors experienced with these machines cannot concur, then the jury is still out.

[cwar]

Yes!  1000% correct on that! Will do for sure. Emotions were running a little high when we met with the dr for the first time last week and did not capture everything now all is a blurr. Just curious how or where a 14 stood on the fibroscan scale.

thx

[copyman]

did i read correctly that the VL is still at 60 after 24 weeks? if not undetectable at 24 weeks then treatment should be stopped. even with extending to 72 weeks the chance of SVR is less then 2%. Not worth harming the body with these harsh drugs. Better to wait for the new drugs coming out next year.

the only way that someone should continue if detectable at 24 weeks is if they have cirrhosis. then perhaps a maint dose could help the cirrhosis stable.

[Bali05]

when I had my FibroScan done by a renowned german Prof. for hepatology
who has treated politicians over there my average score was 8.0 kPa.
The machine comes with a chart that shows the correlating Metavir score.
I had a liver  magazine with me during the exam. It had a big article
about FibroScan including the chart.
While discussing my results with the Prof. I saw the chart said more F1- F2 for 8.0kPa. I asked him and he responded that this was wrong.
He completely denounced .

He looks at all the 10 readings and analyzes them. In my case there was one
reading that said 9.3 .He said that my Metavir was more
like F2-F3 and not what the chart read even though the average of all 10
readings was 8.0 kPa.
Like reading a simple x-ray every test needs to be interpreted and the people
with most experience are the most thought after.

Now I just repeated the FibroScan 2 days ago and it averaged 5.9 kPa.
Dr J. Park than looked at the chart on the machine and said I was F1.
Since I have past experience I questioned the result.

He did 10 readings as well averaging 5.9. The variance factor was 1.4 between
all readings which he told me means all ten readings are close to 5.9.
In germany my lowest score was 6.9 and highest was 9.3 , so quite a range.

Obviously the question begs what happend why F2-F3 and 7 mo. later F1 ?
I asked him that. He responded the readings he did had a success rate of
100% and the one in germany was only 90%.

What both Drs. had in common was they said a biopsy in my case was not
warranted.

To get back to your situation. As you can see a kPa average of 14 with upper
readings 18 is high.

Sorry for the long story but in I order to shine some light on FibroScan all I can
do is tell my story and leave the interpretation and believes to everyone else.

You are doing the best you can and as Bill pointed out the future looks bright.

[Bill1954]

This article provides an overview of Fibroscan results, as well as an introduction to the transient elastography system. Each liver disease has slightly different cut-off points for cirrhosis; table 4a correlates the Fibroscan kPa results with METAVIR score… from the article “In cirrhotic patients, liver stiffness ranges from 13 - 15kPa to 75kPa”

http://www.em-consulte.com/article/187171

I think more importantly table 5 correlates liver stiffness with complications of cirrhosis; it’s these complications that prevent us from further management of our disease:

http://www.em-consulte.com/module/displayarticle/article/187171/iconosup/fig5

Good luck; I sincerely hope you’re husband catches a break soon, and that the protease/polymerase inhibitors are approved soon, or are permitted through compassionate release. If I recall, he's in good hands with his current medical team. Stay in touch—

Bill

[Trish77]

I would say that the experience of the technician doing the fibroscan is not an issue in your case so reliability of results due to operator error can be disregarded.  Your doc has been doing fibroscan for some time. Perhaps you might want to go back to your doctor and ask him to explain that.  He's probably the best one to ask.  Fibroscan is relatively new and not something available to most people as yet except in large research and treatment facilities.

[Bali05]

since he is already doing treatment you really need to ask your hepatologist.

How were his platelets before tx ?

Was his AST always higher than is ALT ?

The FibroScan readings you list are high.

[cwar]

Hi Bali,
I did check the report you posted and thank you by the way for that. However I can not understand what the heck all that means. All I know is the Dr. took 5 or 8 readings and each one was lower than the one preceeding it. It started at 18 and then ended at 14. His weight is 250lbs and 6'. His alt and ast are 41 and 60 something. His platelets are down do 65 due to treatment. VL 24 weeks ago was 6 million and now is 60. His bilirubin and other stats are all good says the Heptologist.  

Does this help?

[Bali05]

merrybe is 100% correct. you need to check your bllodwork, I would do

ultrasound as well (piece of cake and gives you information on liver,spleen

size, portal veign ect..)

However everytime we go thru this people try to blame FibroScan for

the fact that the staging system has its pitfalls.

Bottomline you can not dx cirrhosis based on just one test and biopsy is

not going to help much either. All  the tests in the world have only one

purpose and that is help you decide what to do about it.

To dx cirrhosis you need multiple tests.

Check the FibroScan presentation I posted "Hepatology 21st century"