Thinking ahead

[djbn13]

Since my doc is sure I have cirrhosis and the liver scan Tuesday is to confirm that(I think), would it still be safe to wait for the new meds coming out?  I know there are different stages and people progress differently but do you think it would be better to start tx now because of the fact of cirrhosis no matter what stage you are in?
Originally in the begining my GI wanted to wait because of my lung condition but waiting isn't gonna make that go away and it's never gonna get better so I'm not sure I see the logic in waiting.

DJ

[GrandOak]

Is the scan being done the FibroScan?

The accuracy is quite high and often used in leu of evasive biopsies (see http://www.medscape.com/viewarticle/704170 ).  It is being used more and more since it's introduction a few years ago, especially for those who may be at risk of complications if a biopsy were done.  

Perhaps DJ's doctor is aware of something many here are not and ordered this procedure for a reason rather than going straight to a biopsy.

Since it is not clear what this additional "scan" is, perhaps clarification is required.  One might also ask if a biopsy would be prudent if "scans" are showing advancing damage.

CTScan's are quite accurate and in fact used for HCC screening to identify lesions which may be early stage development.  The number and size of which affect List consideration, along with MELD.  So I would be very cautious about casting dispersions on CTScan.

As far as I know, no one here is a doctor.  If you don't trust yours for handling HCV, then find another that you do trust.

[Diane12855]

What kind of doctor are you going to? If your doctor doesn't treat lots of hep c patients, you should find one that does. His input about the biopsy sounds odd to me.

Diane

[copyman]

get a biopsy! you need this to make an informed treatment decision. If your present doctor will not do it find a different doctor.

It is uncommon to have normal labs and cirrhosis.

It is true that sometimes cirrhosis may be missed with a biopsy but also uncommon. I would NOT rely on a CT or US for DX of cirrhosis.

Best of luck

[HectorSF]

Your labs don't indicate cirrhosis but they don't always. That is why a CT and biopsy need to be performed if cirrhosis is expected. Your doc is a Gastroenterologist I assume?

If you do have cirrhosis. You are at the beginning stage. Class A. Compensated. Most people at that point will remain stable. 25% will progress rapidly to more advanced cirrhosis.

"subtle nodularity of the liver which may reflect cirrhosis ...the information will not change the management" I assume this to mean that your doc plans on trying HCV treatment to stop the advancement of your liver disease. Makes sense.

True you will want to try all treatments for HCV but the odds of the treatment working depends on how advanced your liver disease is.

They are doing a new CT scan after two years. Normally they would do a biopsy. I would ask them why? Maybe they have to do it to have insurance pay for a biopsy afterward?

You should have time to do both treatments. Current and future STAT-C meds. Remember you will have to do them for a year and the chances of current meds working will be pretty low if you have cirrhosis.Telaprevir for example I know will give you much better odds even if you are cirrhotic.
You could always try the current meds for 12 weeks. If you eliminate the virus great. Even if you don't clear the virus you will know what type of responder you are which will give you a very good idea what your chances will be with STAT-C meds.

Get a copy of the CT diagnosis and post it. We can help explain what they find.

Hectorsf

[Bill1954]

Oops, I don't know where that came from either :o).

I’m not in a position to argue with a medical doctor about diagnosis; like I say, there very well may be more to this than is in the labs. I do think you have some valid questions for him; this forum can be good for that type of thing.

And yes, if treatment is available to you, and cirrhosis might be knocking on the door, I’d definitely consider it.

Good luck with the scan results, and let us know how it’s interpreted when you speak with the doc, Dj.

Take care—

Bill

[djbn13]

Thanks,
Bill  
DJ is short for Donna Jean not sure where you got Deb.
Had the nickname all my life.
And yes when I tell people my name is Donna I hear that Richie Valle song especially at work cause my name tag says donna and customers start singing "I had a girl......"

I think after the liver scan then meeting with the doc when ever that maybe I want to start tx I just can't see any point in waiting.  Like Robertbewell, things in my life are pretty much okay, who knows what will happen next year.

[FlGuy]

The part:
"does not have to show cirrhosis even if you have it and the information will not change the management"...

From a wide perspective, that's a true statement.  You have a disease, it's curable, both the doc and patient are capable etc.....

However the finer perspective (should I treat now with current drugs or wait for....) is not abunduntly clear with the info Bill laid out.

Confused and annoyed are ok.  Both get better with further info and talk with your doc.

[Bill1954]

Here are some of the labs I looked over in Dj’s file; these were the ones that I thought might be pertinent to cirrhosis. Nothing looked remarkable to me, in fact, everything was within reference range:


Serum creatinine 0.7 (0.6- 1.1)

INR 1.1 (0.8- 1.2

T. bilirubin 0.6 (0.1-1.0)

Platelets 274 thousand

--Bill

I'm not sure it's time to get angry, Deb; but you can certainly ask the doctors how they arrive at their conclusions. Not only do they have access to your medical history and much more training than we do in here, but they also have the benefit of physical examination; have they seen other physical signs that aren't available in the labs?

You're doing fine; ask questions in here, and learn to ask the right questions of your doctors too.

Bill

[djbn13]

Thanks Bill for looking I couldn't see anything out of the ordinary either but wasn't sure if I missed something.

Bill looked over my lab tests for me and couldn't find anything remarkable that say cirrhosis.

Why on earth would the doctor say he thinks the damage is extensive(on my last visit) if the labs don't back it up.  This is getting so frustrating, could the original ct scan be wrong?

Confused, annoyed, and getting angry at kaiser

DJ

[nygirl7]

I've always heard that with cirrhosis the alt and ast might not be so accurate because there is less of the healthy liver to be dying off - since an enzyme is released when a cell dies....the higher the number the more cell death.  I guess though it's not always accurate as your other numbers are not spectacular and as Bill speculates at worse you probably are just starting down the cirrhosis road.

Honestly, I'm more the cheerleader and less the brain surgeon but that's what I thought.

If I were cirrhotic honestly I would be hesitant to wait for drugs that might not come out at all (we hope they do but face it we don't really KNOW that they will we have heard the song and dance before).

but that is me.......I was only stage 3 and I was worried that I better get going.

See what the doctor says....you might get lucky :)

[Bill1954]

Cirrhosis is often characterized by low platelets, albumin, increased INR and bilirubin. If you have very moderate cirrhosis, these might not be overly affected; however, I really think these labs would be remarkable if frank cirrhosis was present.

Dj, the ‘MELD’ score is used by transplant faculties to calculate mortality, and to help allocate and distribute livers for transplant. They use INR, bilirubin and creatinine to base decisions on; a calculator is available here:

http://www.mayoclinic.org/meld/mayomodel6.htm

I wouldn’t pay too much attention to ALT/AST for determining cirrhosis; it’s possible to progress into stage 4 with normalized liver enzymes, from what I hear.

I hadn’t seen your doctor’s response, and while I agree a biopsy is invasive and shouldn’t be used indiscriminately, I’d think pathology would certainly be part of your diagnosis.

I suppose if the U/S scan next week also suggests regenerative nodularity and cirrhosis, I’d want to know why my labs don’t reflect cirrhosis as well. I agree that biopsy results aren’t required for diagnosis. In fact, often a patient with cirrhosis can’t have a biopsy due to issues with clotting; the risk of complications is too high. However, there’s usually other supporting evidence to make the diagnosis, I think.

Hopefully, someone like Mikesimon, Hector or FlGuy will step up with info too; I wasn’t diagnosed with cirrhosis myself, and don’t have much personal experience with this.

Dj, if you have recent lab values for any of the above mentioned tests, why don’t you post them here for others to review.

Good luck, gal—

Bill

[djbn13]

I think I posted this a while ago. I did ask him he e-mailed me this.

ANDERS HAKAN NYBERG MDReceived:
6/3/10 6:09 PMHi - the cat scan of the chest 2008 noted subtle nodularity of the liver which may reflect cirrhosis. A sonogram is a non invasive procedure, if it also notes a nodular liver you likely have cirrhosis. A liver biopsy is invasive, it comes with a risk of a complication, it does not have to show cirrhosis even if you have it and the information will not change the management.Anders Nyberg-----

I'm having more lab work done Tuesday too. Only thing really off was the ast and alt  When you have cirrhosis will all your lab results be abnormal not just the ast and alt?

[Bill1954]

Yet, DJ; you’re labs were unremarkable, if I recall. If it turns out you are cirrhotic, I imagine you’d be classified as Child A cirrhosis; any signs of decomp would be accompanied by biochemical abnormalities, I’d think.

If it were me, I wouldn’t want to get caught waiting for other drugs that may not be available, and would treat ASAP.

I’m with FlGuy, and wonder why they haven’t suggested biopsy; why is your doctor hesitant to order it? You’re labs aren’t interfering, I don’t believe…

Good luck—

Bill

[djbn13]

Nodularities(sp) of the liver from a ct scan.

[FlGuy]

Knowing the condition of your liver might be the most important element to decision making. It's curious that the doc is going to scan, rather than biopsy.  You might ask him what he expects to learn with the scan vs. what he might with a bx.

What makes him sure you have cirrhosis, specific lab results?