Maybe it's true that most HepC-induced HCC comes with cirrhosis, but I don't think all. Same for esophageal varices. According to my hospital, both conditions (liver carcinoma and varices) can occur at any stage of fibrosis. Of course, the worse the liver the more chance of these consequences. In any case, all the hospitals here in B.A. do regular HCC screening by US of HepC patients.
US and ecoDoppler US are simple procedures. They give lots of information about the state of the liver aside from HCC, like encroaching portal hypertension, diminished blood flow in the hepatic veins, the growth of collateral blood vessels and regenerative nodules, etc. If the insurance will pay, why not do the tests?
M.
My U of Chicago doc told me that I don't need any US until cirrhosis is diagnosed.
About the only thing that ALL the hep MDs and ultrasound guys agree on is that you need to check regularly for growths in the liver, whether you're cured or not and whatever stage of fibrosis you're at. It also seems that checking for growths is all that liver ultrasound is really any good for. So as long as the insurance is paying, as you say, why not?
My hepatologist adds the AFP to my bloods now and then. I think it's about as good as any other marker, that is, pretty near worthless {grin}.
Mike
....zzzzoooooommmm......BANG :-)
thanks Dannyboi7
"Are you going to do occasional ultrasounds?"
...as long as my insurance pays for it and with the FibroSure result
being cirrhosis this should not be a problem.... lol
No but serious , I certainly continue doing ultrsounds as a
precaution which I think is good thing no matter what.
What about AFP tumor marker ? I read it is not done
frequently any more because it is too non-specific.
b
Congrats,badabing badaboom
Well, ya got me there. I guess those blood marker tests aren't all they're cooked up to be. Congrats on the F0 Fibroscan!
Are you going to do occasional ultrasounds?
Cheers!
Mike
Just got back from my 1.5 year post tx FibroScan.
We did 20 different readings in various spots.
Most of them around 5.3 kPa and the highest 6.1 kPa.
Diagnosis F0.
I also did a FibroSure bloodmarker test which came back F 4 - cirrhosis
based on low haptoglobin and high alpha 2 macroglobulins.
Low haptoglobin and high alpha 2 macroglobulins can be a side effect
of strenuous daily exercise which is what I like to do for many years.
So much for FibroSure.....
Cheers
b
Re Fibroscans, don't forget that they are inconclusive when the fibrosis is not homogeneous, as they only scan a very small part of your liver. My current ultrasound&Fibroscan Md, as well as my new hepatologist (who is the head of Hepatology at the German Hospital here in Buenos Aires), have both told me that it's a waste of time to do any more Fibroscans, since the fibrosis in the part that the Fibroscan tests is not representative of my whole liver.
The Fibrotest is much more accurate, in my opinion. So is an MRE, if there were any way to get one.
Mike
I signed something, maybe a waiver releasing the data to them, but they promised me a liver elastogram. That was the deal. After all, I went there asking for a liver elastogram and they offered me the trial as a way to get one for free. They owe it to me. I don't care what the fine print says.
I'm going to make as much trouble as I can until they give me what they promised.
Mike
Hi, Danny. Thank you for your commiseration. It looks like I was lied to just to get me into the trial. Either they never intended to produce the liver elastogram from the data, or it´s too much trouble for them to do so. Bottom line: the patient/volunteer is unworthy of any respect.
I should have learned by now not to trust doctors, but I must admit I was fooled.
I´m going to appeal to the referring MD and then make a stink at the hospital where the trial is being done. But they probably figure that since I´m back in Argentina there isn´t much I can do.
C'est la vie.
Mike
Actually my Fib-4 was also lower at baseline before tx 0.74 vs. 1.02 today1.5 years post.
"during treatment and up to 6 months post treatment is not very conclusive since the meds makes your lliver a little stiffer and inflamed "
That was the argument of the Drs. when my FibroScan went up during tx
and it sounds good doesn`t it ?
The problem I have with that is that I took ALTs same day I did Fibroscans
and it coincedentally was highest (75) on the day I got my lowest FibroScan
which was 5.9 kPa at baseline At SVR my FS was 7.5 kPa and ALT 28.
So if ALT is an indicator for inflammation the higher FibroScan readings
@ wk48 and after tx can not be blamed on higher inflammation.
b
Looks like you got around the same numbers as me with the non invasive scoring methods.As you probably know doing fibroscans during treatment and up to 6 months post treatment is not very conclusive since the meds makes your lliver a little stiffer and inflamed .Same with APPRI and FIB4.It's better to wait at least one year after treatment to do it.In any case it's fun to play with the numbers during that time,they can be all over the place and out whack.You're 1.5 year post treatment,this a great time to do it.I'l bet you the numbers will be lower than baseline.
BTW congrats on being cured.
Today (approx. 1.5 years post tx) my APRI is 0.236 and FIB-4 is 1.02
FibroScan at baseline before tx 5.9 kPa , 5.9 kPa wk12, 7.0 kPa wk48 and 7.5 kPa six months after tx.
If you correlate your fibroscan results with your APRI INDEX and FIB4 SCORE,it will give you pretty good idea on how much liver damage you have.
Hey Mike,
was thinking about you .I will be up there to do another followup FibroScan
next week.
Do you think they still take people for this MRE trial ?
The only way that they are not releasing all your data is if you
signed something to that regard. Because it being a trial they
can possibly have claim of ownership on the information I could
imagine but only if you let them have it by signing a waiver.
b
Sorry to hear you didn't get those results in yet.I was anticipating to see all the outcomes of tests would be.Maybe you will get them in the near future,one things for sure they owe you a rational explanation why they are not giving you the results.
I promised to post the results of the MRE, and if I haven't done so it's because I haven't received the liver elastogram that was promised me. I don't know what the problem is with the doctor who's directing the trial. He sent me two CDs full of MRI images, but no liver elastogram. I'm not happy, as you can imagine, after spending over an hour and a half inside an MRI tube, which is no fun.
I still have hopes of getting the elastogram by putting some pressure on the MD who referred me. If and when I do get it, I'll post it here in my photos, as I said I would.
I hate to think that I was lured into a trial with false promises, but it's certainly starting to look that way. Why is it that you just can't trust doctors? Horrible, really.
Cheers!
Mike
"What a can of worms!" ....indeed.
Talking about Fibrosure bloodmarker test in my case over a period
of 7 months my FibroScan went from F2 to F1-F0 and my Fibrosure
from F2 to F3. I did not believe the F3 since my FibroScan was F0-F1
so I repeated the Fibrosure only 1 week later. Came back full scale F4.
So I went from F3 to F4 in 1 week ......lol
b
Hi, Katia.
Your experience is similar to mine. With so many contradictory test results, you don't know what to think. The more tests I get, the more confused and upset I am. I was hoping that this MRE might solve the riddle. But that result of F1 has got to be wrong. Even my biopsy showed F1/F2, and the Fibroscans up to F4.
What a can of worms!
M.
Not to be too negative, I tend to trust Fibrosure more than a biopsy, but that's just my personal prejudice. Blood panels have the advantage of not testing just one part of the liver.
On the other hand, the biopsy proves that at least some part of your liver is still at F2. Maybe a large part.
Regarding fibrosis progression, there's more controversy surrounding that issue than there is surrounding the tests of current fibrosis stage. I have a collection of over twenty articles on progression, many of them contradicting the others. When I had a biopsy in 2008 showing F1/F2 and a year later a Fibroscan showing F3/F4, I got heated up on the subject. I found a large French statistical study of over a thousand HCV patients that charts progression against a number of variables, and exchanged emails with the author, who assured me that no one goes from F1/F2 to F3/F4 in one year. But who knows? There was someeone in this forum whose biopsy showed F1, and three years later he had declared, uncompensated cirrhosis. It's all madness.
The problem is, B., how do you get the biopsy needle to go into the parts of the liver that the MRE shows to be stiffest and softest?
The fact is that a liver biopsy is done from between the side of the ribs and only goes into one specific part of the liver: that nearest the ribs. There's no way to put the needle where you want to test the liver.
I agree that liver stiffness (elastography) is not an unquestionable correlative to fibrosis. It's an indirect measure, like all the other tests except biopsy. And judging by the three Fibroscans I've had, it can be mistaken. Very mistaken. That's why I take the F1 report with a big grain of salt.
I received the CDs today, but I don't have a CD reader with my netbook computer. Tomorrow I'll go around the neighborhood and see if I can find a computer shop that will let me use theirs, or else buy one. Then, if the elastograms are legible, I'll post them in the photo section of my Medhelp homepage.
Cheers.
Mike
Very interestingindeed.
I've had a biopsy, Fibroscan, Fibrotest and APRI test and they all yielded different results ranging from F1-F4. The Fibroscan showed the highest/worst result.
Wow, that does sound like quite the ordeal. I also agree with you,that this science is not exact.
I had a FibroSure Test (which is a Special Chemistry Panel blood test, that bases it's imfo on blood values, etc) which had me as cirrhotic, so I had a biopsy,which showed me as Stage 2, with grade 3 imflamation. Since my platelets had started slipping, from the borderline (150,000) in both feb and july of 2011, to 120,000 on oct and dec of 2011, I kind of saw myself as a personin the stage of heading towards cirrhosis.