No Fibroscan - Jim Help

[foofighter]

Coordinator from St. Louis called back. Trial is in a different stage nationwide, now requiring biopsy within 6 weeks. Insurance won't pay.

I did go pick up records from my last office visit (Feb. 07) so here goes. Jim read between the lines for me: NP notes read:

At a previous appointment it was clarified that she had progressed to cirrhosis. Original biopsy found stage 2 changes but in light of a low platelet count, there was a suspicion for more advanced liver disease. CT of the abdoment found evidence of portal collateral systemic changes that confirm cirrhosis. The patient has well-compensated disease and strong hepatic synthesis. (Original July 06 CT report said: cirrhotic-appearing liver. 0.9 low dense lesion in right hepatic lobe. No definite enhancing lesions identifified. Portal vein is patent. Negative spleen. A few borderline prominent upper quadrant lymph nodes.) How did he get confirm out of that?

He checked for HCC at this visit. Ultrasound: A cirrhotic liver is demonstrated. Spleen bordline enlarged at 12 cm. No ascites, no neoplasm noted. AFP: result 5 ng/ml (range 0-6) (Keep in mind the Ultrasound tech started with the idea I was cirrhotic.)

Fast forward to May 5, 07. The trial I was trying to get into has my doctor in charge of it (I never see him, though, just the NP). For whatever reason, my Doctor looked me in the eye at "go time" in the trial coordinator's office (796) and after having my July 06 biopsy re-read, he says to me, your biopsy is a 2-1. I started to protest, because I was stunned to hear this, blurting out "What about all the other tests?" He almost cut me off, saying the biopsy is the gold standard. I said "In that case I am waiting to treat and beat it out of there. I took the summer off! Only checked in here once and while and didn't worry. But in the back of my mind...

Here are my thoughts:

Maybe he was actually trying to help me get in to the trial by leaving out results other than biopsy and was wishing I would shut up and not tip off the coordinator. Don't ask, don't tell.

He didn't look at my file first.

He is right. Just because it is cirrhotic-appearing and what does "is demonstrated mean? Maybe he thinks the other guys made a mistake?

There it is. Sorry it is so long?  Just like everyone else, II only want to do this one time!

[mremeet]

It's really good to see you here again, we all really appreciate your input when you have the good graces to provide it to us. I read your post above about the mechanics of the fibroscan, something I know very little about. And although your response is very complicated, I get the gist that the fibroscan is a machine that uses some sort of hand held probe. And this probe is run over the belly of the patient being scanned (similar to an ultrasound?). And this probe produces ultrasonic (or simply "sonic"?) pulses which propagate through the tissues and into the liver. The liver is then stimulated, or "jostled" by the excitative energy provided by the handheld probe. Is that an accurate description? And once the liver is "jostled" (at whatever frequency is used) the probe also has a sensor of some type that is capable of receiving the reflective pulse(s) that come from the now oscillating liver. My sense is that the whole system is trying to determine the liver's various resonate frequencies. You make many allusions to the stiffness and the importance of measuring it, which to me strongly smacks of an ordinary mass-spring system. Is that what's going on here? Are you stimulating the liver with a sweeping variety of amplitudes and frequencies in a variety of locations in an attempt to discern the average natural frequency of this complex, 3D gelatinous blob of flesh?  If so, is that what all of this is boiling down to? The ole' natural frequency (usually denoted with omega) is equal to the square root of k/m with k being (spring) stiffness and m being the mass of the liver? I know it can't possibly be quite that simple being that the liver is a complex three dimensional organ with undoubtably heterogeneous features (with correspondingly heterogeneous stiffnesses throughout its volume). I suspect there's a bunch of fancy polynomials and diff eqs that are necessary to model the  measured feedback amps/freqs. But it would sorta make sense that that's the bottom line here. From my layman's understanding an advanced cirrhotic's liver can be as hard as a rock, which would obviously imply a high stiffness and a correspondingly high natural frequency. A healthy liver is soft, compliant and highly elastic (with low stiffness) which would obviously imply a low overall average natural frequency. So the lower the overall natural frequency of the liver, the lower the stiffness and therefore the less fibrosis there is?? And conversely the higher the natural frequency the more stiffness there is and the more fibrosis there is?? Do I have that even remotely right? Or is it more of a direct assessment made through some kind of force-displacement measurement??

It sounds so teasingly familiar, and yet at the same time it seems cryptic and alien. But ultimately it always comes down to the basics, no matter how complicated it seems in the endgame. I just hope I've come close to touching on what's going on here. Either way, thanks again for you input, VERY interesting!

[jmjm530]

Probably should add that the pathologist who looked at my biopsy prior to me treating, noted my stage as 3/4. I was mistakenly under the impression from my first doctor that this meant I was between stage 3 and 4. Later, I found out that it meant I was stage 3 out of 4 stages. And during tx learned that indeed I might even be closer to stage 2. Given this experience, I think everyone should make sure they understand exactly what their biopsy report means and getting a second pathologist to read the slides is also quite reasonable, especially when in the mid-range.

-- Jim

[jmjm530]

Got cut off because of the script charaters used. I'll try again with different notation..

KPA less than 7.5 would be stage 0 or stage 1.
KPA 7.5 to 9.5 would be stage 2
KPA 9.5 to 12.5 (or 14) would be stage 3

[jmjm530]

I see HR put your 8.8 between stage 1 and 2. I was under the impression that my 8 put me at low 2. Here are some numbers I jotted down I think from the tech guy although the doc seemed to be more optimistic with them. Of course I may have jotted them down wrong, which is very possible considering all the drugs in my system at the time :)

kpa 9.5 -12.5 (or 14) -- stage 3

[jmjm530]

I just noticed on the Fibroscan report that there was a checkmark indicating that 8 measurements were able to be obtained to compute the Median. Also, in those cases where 8 measurements could not be achieved, there was a space to check the reasons such as: Abdominal Wall Fat; Anterior Liver Positioning; Narrowed Intercostal Space;

[jmjm530]

Yes, I know. Actually was on Lipitor for a month or so and got my LDL below 100. Then stopped to see if some fatigue and muscle soreness was Lipitor related. Inconclusive, but I think probably not. Plan on starting up again soon, but thinking of Red Rice Yeast Extract instead of Lipitor. Any opnions on this?

Copy,

Mid treatment kpa 9.5 (high two, borderline 3)
A few months post treatment kpa 8.0 (low 2)
Last biopsy was close to three years prior to treating. Interpretation of those slides varied from stage 2 to stage 3.