Fibroscan results

[sfbaygirl]

I had a Fibroscan yesterday and am pleased with the results...I posted on the otherside in response to Elaine asking about it, but I wanted to post it over here to talk about BX and fibroscan...

This is what I posted....The fibroscan went really well. I am down from a 6.1 to a 5.5, which is in stage 1 range. I was on the overlap with stage 2, but not now, at least on my right side.  

I have such tight ribs that it hard to get the probe between them, so he went to the other side of my liver, which is not usually where one goes. BX are done on your right side, so really am perplexed on how a bx can be valid at all!  On my left ridge of my liver it showed higher numbers, like 8 and 10, not good. The 5.5 is an average of all the numbers of the pictures put together.  So I had a lot of 4's this time, didn't before, which is great. Just about a normal liver.  Last time in Nov. 06' HR didn't look at that left ridge. He normally goes where the biopsies are done.  He had a tough time getting those pictures, so he went to the left where there are no ribs. Bx's are done there b/c there is more to go through and it would be much more dangerous to put a needle in those spots.  

Doing the fibroscan we did about 10 pictures. So I just wonder how people think the bx is the gold standard, when the other side of your liver could have cirrhous and no one could really tell doing a bx.  To get a really accurate picture of the liver, you would have to have like 10 sticks into the liver to get a good idea about your fibrosis.  I know this will bring out the crowd who believe in bx, but from my conversation with HR, saying the same thing about needing all those needle sticks in different spots, he said he believed that to be true and said that some could have cirrhous and not know it by using the normal bx.  Anyway, I am happy but plan on using those Anti fibrotics and not doing tx, unless necessary.  I was going to do a bx, but not anymore. Looking at the results and photos I think that the fibroscan should be the gold standard!

[copyman]

you probably missed that this was an old post. i think sfbaygirl got hers in LA from HR that used to visit here. There are only 4 or 5 FibroScan machines in the USA. They are still not FDA approved and considered "in trial". The delay is probably because the FDA found them to be inaccurate for middle stages, much like the fibroSure. They are both good to rule out cirrhosis but that is about it.

If you really want to see what condition your liver is in you have to do a biopsy. Once and for all there will be no more guessing on what stage your are.

Forget the nonsense about sampling error, different parts of liver could have cirrhosis etc. The bx has the best % for reliability arounf 90% accurate.

[Bali05]

Where did you get your FibroScan ?

I need another one.

Kpa 4.9 is excellent .No Fibrosis !

I had Kpa 8.0 in Aug09 F2+ need another one

to see where I am going. Did FibroSure bloodmarker recently

and it gave me F3 A1 it is unreliable , so is bx with sampling error.

Where in the US can one get a FibroScan ?

[cc0974]

Thanks Tashka and Alek07. At the moment I dont know whats causing the low Platelets (65,000). I'm seeing a doctor today because I have been feeling dizzy in the past few days. Its good to know that my Fibroscan reults of 4.9 is good.

Hopefully its not something too serious

[Alek07]

Your platelets are verylow is there are reason for this that you know?
The good news is the fibroscan result is low:

Less than 7.5 KPa is considered "absent or mild fibrosis"

Good luck

[tashka]

I can not help you with fibroscan results, but your platelets are very low.

[cc0974]

Can someone please help me interpreting my results

Platelets: 65,000
KPa/INTERQ: 4.9 (1.0)
Rate: 92%
VALID:11/12
LOWEST:4.0
HIGHEST:6.8

[sfbaygirl]

Send me you a private message and I will see what I can do about getting one here in CA.  What was your BX then?  

Linda

[burned74]

regarding the Fibroscan. I am interested in getting one. the Dr. in Boston said that they would not be able to do it unless I had had a needle biopsy less than 3 years ago.

My needle biopsy was 3 and 1/2 years so that was ruled out. Now I am going to be in SF in April for a wedding. I was reading your post and was hoping that you or some one could clue me in as to how I could contact the Dr out there see if that is an option.

[sfbaygirl]

LL;  So glad you get the fibroscan!  It is cool. The numbers from the pictures add up to one mean number that gives you a number, the result. Mine was 5.5.  You may want to ask the range of numbers, some could be 4's which are like normal and others may be higher. So good to hear you had low numbers!

Kirk;  Yep,  I don't want to do the tx again!  I sure hope I never have to! Going to get those anti fibrotics that HR recommended.  

[KDH59]

"Since I am not going to tx at these odds, I am going to get the anti fibrotics. Perhaps I will never have to tx again. I hope so. "


I AM WITH YOU BABY !!!!!!!!!!!!!!!!!
                                                                                 KIRK

[Lady Lauri]

I sooooo suck at finding past post! Found it!!

It was a fibroscan test 'trial' I got as I was laying on the bx table! Funny...was so absorbed in my 2b news that day, that when I called my very cool trial cood. about it she says
...'uhhh, that was me , remember?' (I hadn't seen/met her yet for trial on that day.)
I soooo lucked out in many things here! They do about 10 'readings', calculate, etc. and mine was low and lower than the needle bx! (forgot to ask #'s, called her twice this am so will wait!) She say's I get a couple more this year, one at 12 weeks post tx. How cool!!
  Tx, that...all trials....free! Give me SVR and I couldn't be more blessed, lucky :}

LL

[sfbaygirl]

Good for you. If you take SW airlines it shouldn't be so much, especially if you check there specials on flights. You won't regret it!  After all you have been through, I would say you and I both need to do these anti fibrotics and get fibroscans from time to time!  i sure don't plan on tx'ing with the options now...maybe if I really have to.  Good luck and let me know!  Check out the diet above!

Linda

[susan400]

Just to let you know..., I did send an email to Univ. of Miami to the Dr. Schiff's email address, in order to inquire on whether or not they still were doing Fibroscans.  I got an email reply back from a woman in that office, stating that the Fibroscan is not available there at this time.  So, that rules out Miami.  I hesitate to try to get one at Shands because they have been SO rude to me there every time I've tried to contact them.  So, I guess I am going to save up my money and try to make a trip out to HR and get him to do one at some point in the future.

Susan400

[sfbaygirl]

Several people have asked and I wanted to say to check out the post above for the supplements and where to buy them.....Boy these posts get buried!!!  Gotta do my homework!  I am being bad again posting here!

Linda

[sfbaygirl]

Yes,  I agree with you.  Monitoring the liver is needed, HR says 2 years. I agree that six months to a year would be better. I am pretty impressed my new dr at UCSF that did a palpation on my liver a month or so ago. It matches what the fibroscan says almost exactly! I find that interesting and a good Dr. can do a pretty good job doing this. But I plan on following up with fibroscans as often as I can. I feel lucky to be able to get these and we are all lucky to have HR's posts in our archives to refer to. Thanks for the thoughts, you are right on.

[sfbaygirl]

Okay, this is Gauf's HR list of liver  supplements;

HRs' Liver Lover Supplement List
Jan 09, 2008 05:34PM

Supplements as of 1/1/08

I have added links if additional info wanted.

a multi vitamin/no iron

1000 mg of Salmon Oil (epa=160 mg / dha=240 mg / omega 3 = 400 mg) x1

1000 mg of Flaxseed Oil (ALA/omega 3 450 mg / omega 9 110 mg) x1
Raw flaxseed/ 1 teaspoon daily

Hepatapro PPC (900 mg) x 2
info:  http://www.medhelp.org/posts/show/346752  ;


Resveratrol (500 mg) x1  and x2 (alternate every other day)
info:   http://www.lef.org/resveratrol/
source:   http://megaresveratrol.com/


NAC--(n-acetyl-l-cysteine) A sulfur compound that is a precursor of glutathione and protected sulfur-containing amino acid  (600 mg) x2 with Vit C (500 mg) x2
Info:   http://tinyurl.com/9yopf

TMG (750 mg) x 2
http://www.raysahelian.com/trimethylglycine.html

Taurine (500 mg) x 2
http://en.wikipedia.org/wiki/Taurine

Life Extension Super Curcumin W/Bioperine 800Mg 60 Caps (800 mg) x 2  / Powerful Antioxidant Properties to scavenge free radicals
Anti-Inflammatory Actions
Enhances important detoxification enzymes Curcumin increases the secretion of bile by stimulating the bile duct. It also protects the liver by detoxification, stimulating the gall bladder and scavenging free radicals. With the help of the adrenal glands, it inhibits both platelet aggregation and the enzymes which induce inflammatory prostaglandins. Curcumin may also help break down fats and reduce cholesterol. Large doses not recommended in cases of acute bilious colic, obstructive jaundice, painful gallstones, and extremely toxic liver disorders



Sylmarin (425 mg) x 2 / Milk thistle provides hepatocellular protection by stabilizing hepatic cell membranes.

Green Tea Extract (300 mg) x 2 /
info:  http://tinyurl.com/ypdp9q

Coq10 (200 mg) x 1 / http://tinyurl.com/29em8c


Colon complete complex contains:
Fiber complex (2000 mg) x2
Lactobacillus F19 probiotic (14 mg) x 2
Lactospore prebiotic (20 mg) x2

I use Smartbomb.com as a source except for the Resveratrol.

I will go with Lactulose amd Lactobacillus GG when I use up what I have.

------------------------------------------------------------------------------------
What to take while on tx per HR

The supplements while on tx question is difficult, because the ones having antifibrotic promise are almost all antiinflammatory, somewhat reducing the initiating events at the dendritic cell/lymphocyte interface.I know this sounds technical. Most of them also have, paradoxically an improving effect on some aspects of lymphocyte function, as the spectracell test clearly shows.

Bottom line, NO CLEAR ANSWER possible  regarding  use during tx.

But a moderate use of NAC/VitC, TMG, ALA ( those are quite cheap and possibly  PPC (since it was actually shown to help the SVR rate) is probably a good idea even during tx. Vit D3 is good, but it would be best to know ones serum level.
Also some Inulin is inexpensive (trader joes) and a very good well researched prebiotic. To get any lactulose here in the US  is not trivial.

[Cindy10]

What anti-fibrotics do you take? Just curious for hubby. Maybe he should start taking something.

[jmjm530]

Since you plan is to wait, personally I'd scan every year (or perhaps every six months) if possible -- at least  for the first couple of years coming off the interferon. I say this because whatever fibrosis decrease you may have received due to treatment may not stick -- and therefore as a watch and waiter, you really want to know the most current condition of your liver to factor into any decision making process of when to jump back to treatment, say if you are offered an interesting trial opportunity, etc. And no, Zhang is not a "nut job" and has nothing to do with colloidal silver. Chinese medicine and herbs have been around for a very long time but it's only now that these herbs -- or the "western" anti-fibrotics HR is experimenting with -- can be easily and non-invasively measured in terms of their anti-fibrotic acitivty with something like Fibroscan. If I failed tx, and dropped to stage 2 (which my post tx scan showed I did) I'm sure I'd be trying a regiment of antifibrotics (HRs or Zhangs) and scanning every 6-12 months. As to CatScans, they seem to be getting better but still pose a radiation exposure. For that reason my doc doesn't want me to have them on a routine basis so I substituted MRI's. But that's mostly to screen for HCC, anyway.

-- Jim

[sfbaygirl]

Sorry forgot to post to you. Yes, 18 is high....a stage 4 and as HR pointed out perhaps these anti Fibrotics could help him.  I sure would try and plan to!  I hope you read the story about the guy that was stage 4, a 15, that went down to an 8 after using them! Very promising...while not studied it is at least worth a try to get fibrosis down to a reasonable level.  

Good luck on this journey!  

Linda

[sfbaygirl]

I think you are right on the money here.  After what I went through and my possible problems txing with interferon, not only am I reluctant to tx, but my Dr and HR agree...why do it?  HR suggests the anti fibrotics and has the data to support it. Perhaps it is his own study as he tests supplements on himself, but also on the patients that he sees that have used them.  Not a supported study, as I am sure you know, but he believes in supplements and diet. When I talk to him again, I will ask about Dr. Zhang. I have heard the name but thought he was a nut job....Oh btw, HR told me about a study on that silver that is sold on the net for Hep C....he said all the labs done (not sure if he did them, but I think he was part of it) showed that the silver being sold does absolutely NOTHING to the virus. He said he put like 1000 times the amt in a tube to see if it would do anything to the virus....NOTHING!  Such a hoax. Also told me about that grapefruit juice as a supplement...doesn't recommend that either. He said that there was a farmer that had a grapefruit farm and ate tons of grapefruits, ended up having a transplant! He said grapefruit is like tylenol, dangerous if you take too much!  So much interesting stuff. As a researcher and not a practicing Dr. he has time to study and test these things himself and so do his buddies.  

Back to the monitoring...totally agree with you. Frequent monitoring is essential on or off tx. HR said I should get on the anti fibrotics, quit smoking and come back in two years for another fibroscan!  Sounds like a plan.  I am not going to have a biopsy as I had planned...I now have no faith in the reliability of them.  

KC;  Forgot to post to you about that guided cat scan.  It seems to show high levels...dunno, but HR didn't seem to like them.

[jmjm530]

BTW next time you talk to HR, maybe ask him if he's investigated Chinese Herbs in his anti-fibrotic studies,  as for example the ones that have been used by Dr. Zhang for a number of years now. http://www.dr-zhang.com/  Before we get some "quack quack" posts, Zhang has been invited to speak to some very eminent hepatoloigsts over the years so at least someone felt he had something worthwhile to say. Not to mention sme here who have taken his herbs. In fact, I asked my doc about Zhang and he basically said that his real beef with Zhang -- or anti-fibrotic tx in general - was not the herbs -- but that  such a regimeni could delay needed treatment if it doesn;'t work. Again, that's where I see frequent liver monitoring coming in with a device like Fibroscan.

[jmjm530]

SF: If the anti fibrotics work I may never have to tx again!  
-----------------------------
Not just you, but if reproducible -- even somewhat -- that would include MANY that could hold off treatment. In fact, that's what some Chinese doctors like Zhang have been saying for many years with their anecdotal data on fibrosis regression. The thought being that the real villian is not the virus but liver damage and therfore if you can fight (regress) liver damage then you can co-exist peacefully with the virus -- or at least until better, safer, more gentle drugs come on the market.  

The key to me is monitoring which will tell whether whatever you're taking works or doesn't -- and no doubt what may work with one person may not with another. That's where I see the Fibroscan device playing a very important role. Just wish it would get FDA approval and a swift roll out.

-- Jim

[sfbaygirl]

Did I mention the patient that went from a 15 (stage 4) to an 8 (stage 2) in a year just using anti fibrotics?  So continue getting excited about them, it is a wise move to use them. As HR said to me, we aren't sure which one exactly works well, so taking the whole reguiem is the best thing.  Yep, I txed and don't like the odds of retreating....not at the stage I am in or what happened at the end and post tx. So this is exciting stuff. If the anti fibrotics work I may never have to tx again!  That is amazing to me!

[sfbaygirl]

We were discussing the different pegs in terms of retreating.  I was talking about double dosing infergen...HR said that that was not a good idea. It is too strong and hardly anyone in the study he mentioned made it doing this. As we were talking about how to know which peg to take, he mentioned taking both...now I don't think he meant double dosing, but to use half and half. Peg interferon goes at a different pace that Peg Intron, so if you do them both, perhaps one could have better success. Interesting stuff. Of course none of what we are discussing is SOC, but going into uncharted waters here. As a relapser I think we really need to think outta the box to get to SVR. Our chances are diminished being relapsers so we do need a plan. That plan I think needs to be out of the box thinking...Alinia, double dose at first, more Riba, two types of interferon etc.  Add some Oxymatrine to the mix...dunno. NOne of this is standard or recommended by HR or any Dr's. We have to advocate for ourselves on this and hope we can get our Dr's to go along.