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New Fibroscan

I just got back from LA where I had my second fibroscan. Both were done by HR. The first scan, done six months ago, showed an average of 11.5 kpascal for a high F3 fibrosis staging. A week later I started doing HepTech products. Six months later, today's fibroscan showed an average of 8.7 kpascal for a F2-F3 staging. Pretty decent drop in six months.

I am geno 1a, infected 35 years ago. Six years ago a biopsy also showed high F3, followed by a failed course of SOC. After failed tx I had a VL of 7 million, high enzymes, chronic fatigue and a destroyed immune system. Now I have great energy, low VL and normal enzymes and decreasing fibrosis. I am very happy that my way is clear: keep doing the same things and look for more reduction of fibrosis.

My protocol is 4.5 mg low dose naltrexone, Zhang herbs and HepTech products. Based on my readings, I will not change my protocol and will re-scan in another six months. At that time I hope to see another drop in fibrosis

Next week I will also do labs to check enzymes and viral load. My last labs showed a VL of 58 thousand and normal enzymes. I am hoping for close to the same results this time. I will post the lab results when I get them.

Not a cure, but I believe I am turning back the clock on my liver's lifeline. Severe side effects derailed my first tx attempts after 12 weeks. Accordingly I believe that another course of tx would have the same results. So I, like many hep c patients, needed an alternative strategy to forestall what looked like the inevitable. I'm happy to be making progress and, at the same time, to have great quality of life.
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Avatar universal
the link which I provided has a list of various places which are performing various trials of fibroscan.  Only the TOP one pertains to HCV (or HBV also) and biopsy.  It wasn't clear to me whether the biopsy was free or not.

The involved clinics in the USA are below;
United States, Massachusetts
BIDMC Recruiting
Boston, Massachusetts, United States, 02215
Contact: Rory Farnan     617-632-1070     ***@****    
Principal Investigator: Nezam H Afdhal, M.D.            
United States, Missouri
Bruce Bacon M.D. Recruiting
St. Louis, Missouri, United States
Contact: Judy Thompson     314-577-8764        
Principal Investigator: Bruce Bacon, M.D.            
United States, North Carolina
Duke University Medical Center Recruiting
Durham, North Carolina, United States
Contact: Keyur Patel, M.D.            
Principal Investigator: Keyur Patel, M.D.        

-----------------------------------

When there were more trials out there I believe that there were more hospitals engaged; for instance I know that Shands has one.

By accessing the clinical trials list one may also see other hospitals who possess them.  In my case since I knew Shands had one all I had to do was ask.  In my case something came up and it wasn't possible, but it almost happened.

willy
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179856 tn?1333547362
Ithink Bali had his done at Mount Sinai which is closest to me however after finding out I'd have to pay cash to the hepo since they can't charge for the fibro I am thinking it puts it far out of my reach.

I am curious though to see just how much it would line up as a pre=tx stage 3 would it say I am still stage 3 (I think it's more accurate at late stages) or if it would say I have had any regression. I would of course have to confirm it  with a biopsy at this point since I have absolutely no idea.

However I have put it off too long and need to do this. Mostly  out of curiousity but in case something else is going on and destroying liver tissue (but with my low enzymes it seems unlikely since they are like 10 and 15).

deb
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Avatar universal
It would appear to me that they are still engaged, or once again engaged in clinical trials of fibroSCAN in the USA.  There are quite a few trials right now.  This would be a great opportunity to get a biopsy and a fibroscan for baseline and comparison purposes.

http://clinicaltrials.gov/ct2/results?term=fibroscan

So far as a fibroSURE test, I believe that they can routinely be ordered from LabCorp.  In my case I had to ask for one.  I had to ask the doctor who processed his lab tests, he provided me the name of the local lab, I called and had to ask to speak to the head guy, cause no one at the lab had heard of it.  He looked it up and said no problem and told the doctor that all he had to do was to write a prescription for the test.  I had my results in days, it was a simple blood draw, and it cost about 300 dollars.  My co-pay was only about 25 to 30 dollars if memory serves.

At this point I believe it may be a Fibrosure II.  I think they may have tweaked the scoring a little.  I think that anyone who considers doing the clinical trials joint fibroscan and biopsy should consider the addition of a fibrosure test. (three forms of evaluation being better than just two, after all.  PS.... since a fibrosure is a blood test certain fasting protocols must precede the test)

Willy

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Avatar universal
Hi Deb,

You may remember that there were three places to get a fibroscan in the U.S. that were discussed on the board back in 2008-2009.

This is from memory but one was in Boston with Dr. Afdhal (sp?) and the second may have been in Florida at the University of Miami. (I think FlGuy knew.)

The third, of course, was in California, with HR, for whom I have the highest regard. His extraordinary quality of input was a treasure for so many of us who remember him. I mostly only knew him through the archives but his enduring and generous contribution is there for all to see. (I invite anyone here not familiar with that wonderful and brilliant man to read his archived posts and decide for yourselves.)

The Fibroscans would have all been purchased in Europe and now there may be more available.

I think Dr. Ira Jacobson only has the Fibrosure (a blood test) available at his center.

The Fibroscan is already approved in Canada, as in many other countries (Japan?).  I'm willing to bet that it will be approved in the U.S. very soon, maybe even before the protease inhibitors.

It's a very welcome tool, in my opinion but like biopsy, it's best to have a pro do it right. There may not be many (for now) who have that expertise, so that could be a short-term problem after it's approved.

Good luck.

Susan




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Avatar universal
I was treated out of a research hospital in one of our major centres here that has a well-renowned liver clinic and a number of hepatologists on staff who are among the best in Canada and have collaborated with other hepatologists on studies and publishing papers.  They have been using the Fibroscan as a diagnostic tool for some time now, at least since I attained SVR in April 2009.  When I started on the clinical drug trial out of that liver centre, there was no Fibroscan there and by the time I was done they had one as that's what my favourite hepatologist and major treating doc tested my liver damage with on my six month post treatment visit.  He did 10 passes.  I started treatment as Grade 1, Stage 1 and diagnosis at SVR was no discernible liver damage.  I know others who are tested with the Fibroscan there as well.  That clinic is a little ahead of what gastroenterologists are using with their patients in my part of the world as it's a major liver centre.

It's not usually the case that Canada is ahead of the U.S. in approving treatments or drugs but seems this time we're right up there with Europe and whoever else is using Fibroscan, which is great.  Just because the U.S. is taking awhile to get it approved doesn't mean it's not a valid diagnostic tool.  It's certainly being used by a number of hepatologists in other countries.
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Avatar universal
Thanks to Portann for the link above!
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Avatar universal
Here is HR on the subject of the fibroscan:

"With regard to the fibroscan, it can, if the ribcage is not very narrow and the patient not very obese, obain very precise information re the elasticity of the liver, which is excellently correlated to the amount of collagen fibers (fibrosis) that the liver contains. Some fibroscans fail, because the quality of the elastic wave that can be generated is suboptimal due to operater lack of skill, rib deflections causing wave disturbaces, obesity or (rarely) real wound scarring. The problem - and this comment goes to Jim- is that in the " standardized procedure"  the judgement of acceptance of a particular individual elastometric shot or picture is left to the machine and its image processing algorithms. If one understands what the essence of the wave speed measurement is as reflected in the details of the individual image, it becommes painfully clear, that the machine algorith sometimes  "accepts" individual single measurements that it should have discarded and also that the speed interpolation tha the machine automatically performs and superimposes on the individual image is not infrquently clearly wrong. This normally is weeded out because only the median of 12 measurements is finally used as "the' reflection of the true elasticity and is the only value that determines the final fibrosis judgement.  In terms of repetitions of the "shots" or measurement of individual elastic values, the rule is simple: the more you do, the closer you get to the reality. Just like 10 liver biopsies would give you more info than one and 40 will really focus you into what is truly present - sampling error is increasingly reduced and the reality of degree of fibrosis comes into clearer focus the more "fibroshots" you do..  It is practical reasons that limit the " standardized protocol"  and it is more a minimum protocol rather than the maximum precision that you can obtain.More mesurements will only reduce the uncertainty window that a particular median will finally represent. Biopsies are only coarsly quantitative in re to fibrosis - hence the "stages". So the more biopsies you would do( if you could, or do a "wedge biopsy", autsch) and if you would (as some French studies did) quantify the fibers with integrated area measurement of the stained fibrous areas and would in parallel do a number of fibroscan shots to the extent that the median now stays rock solid and you have discarded improper waves, then you would come to a very, very close agreement between the two. In the real world, the uncertainties of both methods will combine to widen the window of correlation. It is however easier to narrow the part that stems from the fibroscan due to its noninvasiive nature."

http://www.medhelp.org/posts/Hepatitis-C/No-Fibroscan---Jim-Help/show/326325

Note: "In the real world, the uncertainties of both methods will combine to widen the window of correlation." In other words, it is the variability of both methods that produces the variation in correlation between the biopsy and the fibroscan in predicting staging. It is much more reliable to compare a fibroscan to a fibroscan than a fibroscan to a biopsy. Same machine, same operator, same area of the liver over a unit of time = correlation.
Helpful - 0
179856 tn?1333547362
Ah thank you Copyman very good useful info indeed!!!!!!!!!!!!
I think we should all get them then and do our own little study, certainly they would find that useful in getting this approved right?

so much easier on the mind then a biopsy - which even though I know is the best most accurate thing and doens't hurt it's more the time waiting and worrying that somehow this time it will hurt.

Of course, I am sure having to pay for the Hepo (if it was on the scale I paid Dr. J) sure was not chicken feed - hell they should throw one in for free just for the fun of it it cost so much money (but he doesn't take insurance like most of the good ones dont have to).

Now I get it!
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Avatar universal
I don't think you can be charged for a FibroScan since it isn't FDA approved. The few that are in the USA are for trial purposes only and cannot be charged a fee for it. I payed a lot of $$ to see a Hepatologist that has one in his office but not for the scan.
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179856 tn?1333547362
According to the echosen press kit there are 35 units of fibroscan in north america?  Is that mostly Canada or how does one find where they can get one here in the continental US? I can't find it but might just be looking in the wrong place.
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Avatar universal
With the exception of PPC, HR didn't think the anti-inflammatory supplements should be taken during TX.  He based it on the fact that not enough research had been done to prove it was OK.  He said that there was a possibility of it slowing down the dendretic cell response.  I don't know if his approved list for TX would look different today as his recommendations were some years ago and maybe some other research has shown something different.
I will look for the list of what Cocksparrow took.  He even had a presentation at a liver conference to present his protocol.  Cowriter helped him with the research and I think I will ask her if she would like to put it on the forum or at least give us the list of his on TX protocol.
For those that may not know.  Cocksparrow and Cowriter are very bright people that used to be here often.  I sure miss their presence. They were blessed with big ol' brains. They also studied HR's posts and they put together a pretty neat plan based on solid research which got Cocksparrow an SVR after several failed attempts.  CS WAS a genotype 3.
I remember a lot of his list but not all and I don't want to post anything wrong. I also don't want to post anything they don't want posted.
In the meantime, although I haven't had time to look it up, I believe that HR's approved TX supplements are listed somewhere on Gauf's journal.
If anybody else has it handy, that would be great!
Ev
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179856 tn?1333547362
Sorry seems I cut and pasted a few times and never hit the control X only hit the control C instead.
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Avatar universal
There are a lot of studies on substances that show antifibrotic activities. There are also many studies that show ability to reduce NF-kappaB activation, which is the trigger for fibrogenesis. Dr. CS Lieber's work (human clinical trials) on PPCs have shown fibrosis regression in alcoholics with cirrhosis.

The only thing missing are clinical studies involving supplements specifically targeting fibrogenesis in hepatitis c patients. That is likely to change next year when Hep Tech presents their human clinical trials at next year's AASLD meeting.

When that happens it will be a good thing, not a bad thing.
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179856 tn?1333547362
Deb, Fibroscan is produced in Europe by Echosens"

Interesting that it is a French company with heavy leanings to Germany, Spain and China to reach out to all their patients. With 52 associates worldwide that can't mean there are too many locations here in the US are there?

Hepatitis Technologies isn't heavily vested in fibroscan? I would have sworn I read it right on their website along with a quote "FibroScan awaits US FDA approval at this point in time Jan 2010." or something just like that.  So if you would like to consider it a trial type option that makes perfect sense to me.

Denise's question who can actually perform one of these procedures - well I've never heard of anyone ever getting one here in the USA except for out in LA (and Canada I'd imagine which is north America at least).  Interesting that it is a French company with heavy leanings to Germany, Spain and China to reach out to all their patients. With 52 associates worldwide that can't mean there are too many locations here in the US are there?

Now you have me curious to know where else you can get one. I'd actually like to see if my insurance company would pay for it then I could do biopsy every few years and this in between (since I'm SVR there isn't as much need for me to constantly biopsy really). If it lined up in any way to whatever my biopsy will say it could be a good idea for those are not at risk of the virus damaging their liver any longer since it wouldn't be as crucial to be exactly correct but give a good ballpark in which to swing away.

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Avatar universal
Biopsy is recommended every 3 - 5 years and I would think it prudent if initial biopsy shows advanced fibrosis then go for the 3 years like I am.   Fibroscan cannot detect iron accumulation in the liver, something that effects many people with hepc.

As I indicated before, I make no claim 72 weeks of treatment has reversed my fibrosis or kept it from advancing but then I may be surprised.  Or perhaps my initial biopsy done at the Mayo was interpreted incorrectly just as fibroscan results vary and the fibrosis was only 2-3.  

I have never made any claims supplements halt or decrease fibrogenesis but you have so it is in the best interest of anyone who is new that they know there is no established peer reviewed studies to support supplements WILL INDEED halt or decrease fibrogenesis.

If you're asking we use your results as a model my answer to that is I would rather not.

Trinity
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Avatar universal
Cocksparrow achieved SVR on his third try. He credits HR's protocol for making that happen. He did the protocol all though tx, I believe.

Many people are waiting for the new treatment options. However, the further your fibrosis progression, the less your chances of achieving SVR. Anything you can do to halt or decrease fibrogenesis while you wait has enormous value for your tx success.
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Avatar universal
"Soooooo, what happens to the new person like I was at one time, that reads some of the alternatives that "work".  Will they not treat and count on sustaining their life with alternatives?"

And that line of thinking is the motivation for the attack by people on this board against any and all supplements. For those people, the cynicism about efficacy is largely the alibi; the emotional need to push for treatment is the true motivation.

HR's protocol is an augmentation for tx, not a replacement. HR is all for tx. So is HepTech. Treatment is the only cure for hep c - no one has ever said otherwise.  The studies have shown that supplementation of PPC while treating greatly increases chances of SVR. Nothing is "either or". In my opinion, if you are not treating you should be protecting yourself - especially if you have failed tx. If supplements achieve the result of preventing or slowing fibrosis progression, it is illogical to think that is a bad thing.

Biopsy is only recommended once every five years, I believe. A lot of fibrogenesis can happen in that time. If you doubt the accuracy of fibroscan, then you should do it in conjunction with a fibrosure blood test. The combination has a greatly increased predictive value over one or the other. But a fibroscan alone is highly predictive for the presence or absence of cirrhosis. For those of us in F3, that is no small thing. If you had you last biopsy 3-4 years ago, you have no clue what your current fibrosis staging is, and if you are going to wait another 2 years for your next one, you are completely in the dark about what you staging is..
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Avatar universal
Deb wrote;
"..the only people who can do it are like the people like HR and Hepatitis Technologies who make the thing and coincedentally also make the magic supplements."

-----------------------------------------
Deb, Fibroscan is produced in Europe by Echosens, not made by either HR or Hepatitis Technologies.

Fibroscan is used in Europe and has seen discussion at the liver conferences, EASL and AASLD.  It may not have the same degree of accuracy as a biopsy but it is still a valid tool for assessment of liver staging.  IMHO.

Willy
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Avatar universal
Because something is not approved in the us doesn't make it invalid. I don't really know much about the fibroscan, but the protease inhibitor boceprevir is also not approved in the us currently but I feel lucky to be in a trial where I am treating with it.

It's unfortunate if people come on a forum and believe whatever they hear, but there are also a lot of uniformed doctors treating people with soc that don't have a clue about tx, using rescue drugs instead of reducing medication, when to check vl and other blood values, how long to treat, when to stop tx.

I don't get the impression that most of the supplement supporters are saying that people shouldn't treat with soc or that the supplements cure the disease, or that the supplements and soc are mutually exclusive.

If I can't cure with the drugs this time, I will try again eventually. I will also look into and educate myself about alternatives that might slow down my disease progression even slightly. If I waste my money so be it. I know I will drink coffee and take milk thistle which most hepatologists seem to believe has some validity. I don't take any supplements besides vitamin d and coffee while treating because I don't want to chance interrupting the process.

There are many times people come on the forum to exploit others and sell things to desperate people, but we have to be able to decimate those people from those who are offering something that might be worth hearing.

If you have been involved with the medical community for any length of time you realize that you must learn to educate and advocate for yourself, always ask questions and not blindly believe even the most respected physician or anyone else on the forum or off that is giving one advice and suggestions.  


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Avatar universal
As it turns out, I believe that in one of Mike's earlier posts I recommended that he get a fibrosure (a blood test).  There was a bit of discussion about fibrosure, fibroscan, and biopsy.  Each type of test has it's own strong points.  The best of all possible worlds is to get all three to get a fair assessment of the liver's condition.  I'm aware of some people who have had sharp changes or jumps in liver damage which could be attributed to the specificity of the area of the liver where the biopsy sample was pulled.

I have also read a few accounts where using a fibroscan different areas and lobes had differing amounts of damage.

I don't know how many people have gotten the scans at medhelp, but some people like Bali travel and they can easily get scans.  Others have gone to a US source to get theirs.  I myself missed out on getting mine at Shands when I got my biopsy.  If they run another set of trials which involve a fibroscan I may consider trying again.

The beauty of the fibtrocsan or fibrosure test is that they are non-invasive, very safe and so they can be done frequently so as to establish a baseline, or average.  There are few people who would consider getting a biopsy twice a year but it might be a simple and economical matter to do so with a fibrosure blood test.

For what it's worth....my fibrosure in 2005 indicated a stage 1, threshold 2.  My biopsy in 2008 indicated 1/6 Ishak.

To my way of thinking more information is always better than less information.  Discussion of such in the forums allows a better understanding of the issues involved.
A trial for me wasn't also readily available but it didn't keep me from getting into one.

best,
Willy
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179856 tn?1333547362
Fibroscan is not available in most places in the USA because it is not approved by the FDA and therefore............the only people who can do it are like the people like HR and Hepatitis Technologies who make the thing and coincedentally also make the magic supplements.

That is my understanding of why you would need to go to LA for example because you have to find someone who is willing to do something not yet approved here in the States for you.



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475300 tn?1312423126
Soooooo, what happens to the new person like I was at one time, that reads some of the alternatives that "work".  Will they not treat and count on sustaining their life with alternatives?  

The fibroscan is not available most place so what if they forgo a biopsy while waiting for the fibroscan to be available locally and unbeknown st to them they are extremely cirrhotic and should not have waited?

Seriously some people looking for the "easy out" will think that is all there is to it.

Denise
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238010 tn?1420406272
Since mhudnall said he's not coming back to this thread, you might try a PM to him to find out where a Fibroscan is available in LA
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419309 tn?1326503291
This thread is titled "New Fibroscan."

I'm finding it a persistent thought that a number of members have asked with real interest about where Fibroscan is available in LA but no one has offered any helpful answers...
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