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475555 tn?1469304339

FibroTC analyses finally posted in my photos

At long last, and with my excuses for taking so long, the FibroTC analyses of my liver that I had done last year are now posted in my photos.

The first image is a short series of explanatory notes from Dr. Gomez, the physicist who developed the FibroTC program in Seville, Spain, and who very generously ran my CAT-scans through his program.

Then follow two series of FibroTC analyses of the two CAT-scans I had done in Buenos Aires in 2008 at a private imaging facility. These are preceeded by identificatory notes with color key. (There were more CAT-scan slices than are represented, as Dr. Gomez chose which images to analyze according to criteria of distribution in the liver, clarity of image, et cetera.)

For an explanation of the cuadrants color-coded F3 and F4, see Dr. Gomez's notes.

I personally believe that the FibroTC analysis is superior to other non-invasive hepatitis-C diagnostic tools recently developed, for a number of reasons but primarily because it is three-dimensional and demonstrates that fibrosis is not uniform within the liver in hepatitis-C. Other studies average fibrosis extent throughout the liver or, like biopsy, analyze it only for a small portion of liver tissue.

I intend to request that a follow-up FibroTC be done for me on a new CAT-scan later this year, in the hope that it will show whether or not the fibrosis in my liver is progressing. For me, this is the only current viable alternative to waiting three or more years for a new biopsy. And fibrosis progression is just as important, perhaps more so, than the extent of fibrosis at any given time point. If I succeed in having that supplementary FibroTC study done, I will post it here.

I hope these results are of interest to forum members.

Mike716

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475555 tn?1469304339
Frank, you've got me very interested in this Hepatic Aid. I'm worried about diet, and something that would give me nutrients w/o eating meat and vegetables would be great. Can you find out what's in it?

Mike
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Avatar universal
Thank you for informing me about the Biopsy-10% is quite a risk and with all my other health issues and my luck?  no way.  Yes you are right my Dr said that I have cirrhosis-end stage and W/O the lactulose, nutrition called hepatic aid, the anti-inflamatory and steiroids etc. I would go into a coma-Mental Encephalopathy<  Been there once already.  I don't remember anything but my family sure does!

You are right Mike the doctors in my experience don't take much time to tell us what we can eat or shouldn't.  I found Hepatic Aid because thats what they fed me in the hospital when I came out of my coma-it has been my life saver because I get the proper amount of nutrients w/o having to eat alot of vegetables or foods high in vitamin A.  Meat is an aromatic-it causes Ammonia to build up.  I was told since I am in end stage the less meat or protein I eat the better.  Good luck and best wishes Mike and Winning franke
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475555 tn?1469304339
Thanks for the further details. I don't have any choice really about waiting, as my hospital in B.A. won't give me tx and I don't want to do a trial. So I'll just wait for the new PIs to be approved (unless my liver tests get worse all of a sudden).

My hospital claims to have purchased the Fibroscan apparatus, but for some reason they haven't got it working yet, or don't want to use it. I don't know why.

I am tending to try to ignore the whole mess and just rely on my hep MD to tell me what to do. I like him. Young guy, very smart, very friendly towards me, even lets me exchange emails with him and always answers my questions. I trust him. So, why torture myself with decisions that are out of my hands (unles I come back to the States, or get a chance at joining a trial)?

One thing that I'm very unhappy about is that the docs can't or won't give any info on what life-style changes will help to hold back fibrosis, things like diet and such. They are ignorant about nutrients and alternative therapies. It's too bad, as it must be pretty important to have the right intake and amount of exercise, etc. For example, I've read a lot of stuff about replacing saturated fatty acids with polyunsaturated ones, and started doing supplementary fish oil and linseed oil and safflower oil. But then I read a report that polyunsaturated fatty acids cause oxidation, which is what causes fibrosis, so I stopped taking them. The MDs I talked to about this didn't have a clue!

It's hard to accept that our lives depend on commercial products from international pharmaceutical corporations. The world we live in is not right.

Anyway, thanks for the help. This has been a useful discussion.

Mike
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Avatar universal
Franke: I believe the serum-based tests (eg Fibrospect Fibrosure) are essentially binary indicators that distinguish effectively no fibrosis (f0-f1) from more advanced. Higher test values do not  correlate well  to more severe progression - but if you have a value above a given cutoff you're likely to have significant  fibrosis. To diagnose end-stage your Dr. is likely relying on many other indicators other than the Fibrospect. If you suspect cirrhosis, a bx would not be advised - in the pre-op for the laparoscopic bx   the surgeon mentioned that if in fact I was cirrhotic he would estimate my risk of fatality at 10% (which made me think about bolting for the door). However a fibroscan,  is completely safe and might give more information than the serum-based (yes/no) tests.


Mike: my understanding is  FS is ultra-sound based and measures stiffness in a cone that radiates out from the sensor. Reliable use requires some skill in navigating around ribs and other anatomy to get a series of representative values. The area examined is not as extensive as a cat scan's but is thousands of times larger than the sample collected in a bx.
Some reports indicate it can track relatively short-term variation in  fibrosis (eg http://www.ncbi.nlm.nih.gov/pubmed/17302249) so that a series of tests, by the same Dr. using the same equipment, might give you the indicator you're looking for.  

Dancing in Buenos Aires sounds pretty darn good! My overall impression of soc is that though major permanent damage is relatively unlikely it certainly speeds up  aging  - you don't want to serve more time than you have to. At 65 you might not want to wait out the combo PIs but if all tests indicate your liver is as fit as it appears to be, waiting the 1.5/2 years for the 1st round of PIs seems a good choice.
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Avatar universal
thanks for asking Mike-Prednisone is a steiroid and anti-inflamatory that in theory slows down the morphological rate of cirrhosis and Fibrosis as the damaged liver trys to repair itself.  Lasix is a diuretic and Hepatic aid is a nutritional supplement I drink (1) 8 oz shake daily-Only a Hepatologist or Gastro can prescribe it.$ 823 dollars for a 21 day supply.  Comes in powder form in packets- mixes easily with water and provides me with the nutrients  we need but does not have to be metabolized thru the liver.  It has been out there for years and usually not offered unless the patient goes into Encephalapathy which I have had twice brought on by high ammonial levels after eating beef and shrimp on two seperate ocassions.  The reason my Hep doctors have put me in this classification-End Stage is because of the continued advance of fibrosis-cirrhosis and banding-esophageal varices and portal hypertension between the liver and the spleen.  We discussed being placed on the Liver transplant list but I have medical problems that make that a highly un-likely option.  My Hepatologist did say I had months to even years (possibly) before the ducts ( which are at F1) occlude and then there is the possibility of stents.  I think that in time with stem cell research and cloning (organs) there will someday never be a need for donor organs reducing the chance for rejection.  I have a friend who had a transplant over a year ago and he has had a hard time and is banding and has had to have several operations to remove these bands of scar tissue.  I went from a healthy 6' 3 185 lbs to 98 lbs and the Hepatic aid got me to 144 lbs-still thin for my height but I don't look like walking death so much.  I dont see how the Fibrospect or a Biopsy can be definitive.  I believe they are fallible.  I am trying to get my new Hepatologist to consider the Ultra Fast Cat Scan which is catching on in Brittain but it is hard in America at least to get The Fellows to get away from the Gold Standard.  I'm probably way ignorant -I know I'm way ignorant- but I've bought watermelons and have had a plug taken from a melon as a representative of the whole and the plug portion looked and tasted good but after getting the melon home sliced into it and found it flawed in other areas.  Wouldn't this be possible with a Biopsy?  And I don't believe the Fibrospect is exact enough to determine End Stage; which is precisely why my Hep doctor gave such a varying amount of time.  Thanks franke566
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475555 tn?1469304339
I know nothing about Fibrospect, but F3 is not end stage. Strictly speaking, neither is F4. End stage as my hepatologist defines it (and as it is used to determine when to do a liver transplant) is advanced stage cyrrhosis. My hepatologist has told me that he has patients who have had cyrrhosis for ten years and their livers are still working. At my hospital, they don't do transplants on stage F4 hepatitis-C patients unless their liver is outright failing, much less on stage F3. But every hepatologist and hospital has its own take on it.

What are Prednisone, Lasix, and Hepatic aid?

Mike
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475555 tn?1469304339
I think I'll skip the laparoscopic bx [grin].

Fibroscan, as I understand it, uses ultra-sound to test the relative stiffness of the liver, stiffer liver equating with more fibrosis. Fibroscan seems to be the only alternative diagnostic procedure currently acceptable to (certain) health authorities. But I have my doubts about it; for example, isn't it also restricted to a part of the liver, namely the outer surface?; isn't it an average over a large part of the liver?; and doesn't it, like bx, extrapolate a little info into an overall, possibly false, picture of the whole liver?

Re the anomalies in my CAT-scan/FibroTC results, I agree that Dr. Gomez's explanation for why some squares are markedly (more than one F number) different from the surrounding ones is unconvincing. I personally believe that some at least of the FibroTC information is real and not artefact, and that there are parts of my liver that are F2 and F3, if not F4.

Your analysis of remaining liver-time vs. tx seems reasonable to me. However, I have read that in persons my age (I am presently 65) the curve of disease progression often takes an unexpectedly sharp up-turn, possibly due to age-related immune system failure. I have a high viral load (over 1 million) and logically the constant pressure that puts on my immune system - which I can detect in simple things like the cure time of skin infections - would tend to wear it down in the long term.

But (and it's a big "but") if I don't know whether or not my liver is actually deteriorating, I don't feel I can make a decision about tx, even once the new drugs are approved. There are just so many quality-of-life aspects to both sides of the tx-or-not-to-tx issue. I'm in very good shape right now, after years of gym and serious dancing (I am at an advanced level of tango, and it is my main activity now that I am retired and living in Buenos Aires). After a year of tx I would not be, and perhaps would never be again. Also, I am a bachelor. What would be the psychologucal consequences of tx-ing for a year alone?

Somehow, I've got to get a comparative diagnostic on the state of my liver this or next year. There's just no other way to make a decision.

Mike
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Avatar universal
You see, thias is where I get confused.  My FIBROSpect index is 73
the Clinical Interpretation is Consistent with Metavier  F2-F4   and underneath that it haS BASED ON THIS STUDY AND THESE RESULTS THE CHANCE OF YOUR PATIENT HAVING F2-F4 is 87.9 % The chance of having F-O is 3.2% and the chance of having F-1 is 9.0 %  then there is a pie chart that reads FO 3.2% F1 8.9% F2-F4 87.9%
Then beneath that it reads no fibrosis for FO
F1-Portal Tract Fibrosis, F2-septal Fibrosis, F3 bridging Fibrosis and F4 Cirrhosis.

My new Hepatologist said that I am in end stage and there is no point in having another Biopsy and I am on Prednisone, Lasix, Hepatic aid.  Why are my liver levels still within range?  I can understand ammonia levels are in range because I also take Lactulose.  Anyone else at this advanced stage or above?  And still having in range Levels-please comment. franke566
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Avatar universal
a laparoscopic bx is sort of a super-sized bx. They knock you out with general anaesthesia make a  couple of small holes around your abdomen, blow you up with air and insert tubes, one with instruments the other with lights so they can see what they're doing. (As i understood it; though present, I was actually elsewhere, off in dreamland somewhere).

The main advantage is that the surgeon gets to see the whole organ and can select where to insert needles and collect tissue. As a bonus you get nice glossy photographs, suitable for framing.  Interestingly none of the hepatologists were interested in the photos, which surprised me. since I'd have thought the appearance of the surface would be informative.

As the above reports make clear, I didn't really learn that much more and wouldn't recommend it . The liver is big and damage is not uniform; short of taking out and slicing the whole thing there doesn't yet seem to be a good way of characterising the distribution of fibrosis. IMHO, of the std diagnostics, fibroscan gives the best approximation to a meaningful summary.  As gold standards go, the bx slides do give a full accounting of the 1/50000 sample collected but how does that generalize? For example. that F4 spot in 1-9 is likely artefact, but what about the variability in 1-7?

Gauging how much liver-time you have left seems to come down to : tx now (eg ejoli, cando); can wait 1-2 years for 1st PI approval but no longer (which is where I think I land) and can wait 4-5 for  combo PI approval. Overall it looks like in you're in good shape for the longer wait (and better/shorter meds) if you choose to. If you don't want to wait you may want to look at the R7128 trial currently recruiting for tx naives.
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475555 tn?1469304339
Thanks for your discussion of this. I appreciate it very much.

Dr. Gomez says in his notes (my first photo image) that the one-off areas of F3 or F4 in their results are artefacts and shouldn't be counted. I wonder about that.

What exactly is a laparoscopic biopsy? Is it very invasive? Expensive? How does it work?

Yes, the pathologists don't seem to agree much. It's annoying. And with such a small sample (my biopsy got only 1.5cm of tissue, all from the same small part of my liver) being looked at, I really don't see how anyone can come to a serioius conclusion about the progression of liver disease. I think they are shooting in the dark with antiquated methods. The monotonous refrain that "biopsy is the gold standard" is a bunch of c**p, IMHO.

I think there's a future for FibroTC, but the high radiation from the CAT scan isn't good. Maybe that fast-scan from Europe that franke56 mentioned is a solution there.

Since my hospital in Buenos Aires won't give me the antiviral theray until the new drug(s) is/are approved, or until my liver gets worse (?), the diagnostics are of first importance to me. My hospital still relies purely on the old biopsy technique, and I frankly don't trust it at all, especially since the FibroTC studies have pretty well proven that fibrosis is not evenly spread throughout the liver.

What a mess!

Mike
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Avatar universal
thanks for taking the time to post these - very interesting. It looks like one area of F4, a smattering of F3s and everything else comes in at F2 or better. I haven't had a chance to read the FibroTC papers yet, but resolution seems impressive. By contrast, a std. percutaneous bx samples about 1/50000 and delivers a judgment based on that fragment.

Monitoring fibrosis progression is an important part of 'watchful waiting' as it tells you how long you can wait.  I was worried about  this for a bit but finally came to the conclusion that it's essentially impossible to reduce fibrosis to a single 'accurate' number.

Here's a summary of my experiences on the topic:
- 1st bx in '92 showed 'early cirrhosis' but later ones claimed improvement ('00 F2, '06 F1); I was skeptical since had failed mono tx in 93 and soc in '03.
- a fibrospect (serum-based) in '06  came in at 71 and a fibroscan in '08 at 12.4 (indicating extensive/severe fibrosis)
- this got me worried so I arranged a laparoscopic bx in may '08 which removed what the pathologists gleefully referred to as 'generous samples' from both left and right lobes.  I had the slides reviewed by pathologists at three top-notch liver-transplant centers.
- the 1st put the right lobe at F2, left lobe F1-F2 (0-4 Metavir) without much discussion
- the 2nd, more dramatic, saw 'at least stage 3 throughout with some areas of stage 4 and potentially two to three areas of stage 5 giving an overall stage 4' (on a 0-6 scale)
- the 3rd saw 'a single area of 'early portal to portal bridging' and assessed overall at stage 3 (on 0-6)

did 1 and 3 see areas  of potential stage 5 and not comment? I tried to pursue this further but got nowhere (pathologists are not chatty; they also don't like to contradict one another so if you have more than one review slides it might be a good idea to hand-deliver so they are not accompanied by the initial, prejudicial, report).

My conclusion was that given the overall level of sampling and interpretation variability, assessing a minor (say 0.5-1) change in stage progression seems doubtful.
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475555 tn?1469304339
Thanks, I'll check into that ultra-fast CAT scan. I don't like the radiation of the regular scan.

The CAT required for FibroTC doesn't use contrast dyes.

Mike
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Avatar universal
Europe is using what they call an ultra-fast cat scan to determine fibrosis, but the Gold standard in the United States is still a Liver Biopsy.  My question is how exact is a Biopsy?  I mean what if the needle takes good tissue.  Copyman is correct Cat scans  are over used and nick cells and can cause  them to mutate.  Also beware of contrasting dyes-even Gadolinium (water based) are proving to cause damage to the body.
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Avatar universal
hey mike,

very interesting post.

i'm sure you already know but be careful with CAT scans. they have the radiation equalvilant to 500 x-rays.
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