“His nurse who handles the HCV patients was very surprised when she found out that he did not do a biopsy - she thought I needed one (to make sure I wasn't too damaged to treat?”
Again, I really believe this could be determined by methods other than biopsy/histology. Interferon is not intended for patients with decompensated cirrhosis; a simple MELD score evaluation could easily determine this.
Compensated cirrhosis is a different situation; this is where the architecture of the liver has changed, but the organ continues to perform vial functions such as protean syntheses, etc. If you had progressed to compensated stage 4 status, all the more reason to treat.
Additionally, a good hepatologist/GI doc should be able to tell if a patient has developed decompensated disease by physical exam… certain signs/stigmata often become apparent.
Here’s the UNOS table for MELD (Model End stage Liver Disease) score for your reference:
http://www.unos.org/resources/meldpeldcalculator.asp
Best to you- and let us know how you do going forward—
Bill
YOU SAID
Then I read somewhere that "treatment naive" patients had a better chance and got nervous. If that is just because statistically there will be more early responders in that group than in a group of people that already had treatment and still had the virus, and it is not because of the virus mutating during treatment or something, then why not try now. The sooner the virus is gone, the less damage to my liver right?
Its not because of mutation,only the new PI drugs may mutate.you may want to change to a specialist hep Doc if your allowed too.You will get better care,this doc seems fishy too me.by what you are saying.
Are you a geno 2 or 3?..if so,most docs dont bother with BX
Thank you for all your help.
If treating now and failing will not actually lower my chances of success with the new treatment coming out (except statistically of course), then i am okay with the decision to treat now. When the doctor prescribed treatment and I looked into it, I was terrified of the side effects and horror stories I came accross. I then looked into alternatives and read about the newer treatment coming in about 2013. When I read that I would still have to take these aweful drugs but with another added to them, I decided to treat now and then do the new one in 2013 if this one did not work. Then I read somewhere that "treatment naive" patients had a better chance and got nervous. If that is just because statistically there will be more early responders in that group than in a group of people that already had treatment and still had the virus, and it is not because of the virus mutating during treatment or something, then why not try now. The sooner the virus is gone, the less damage to my liver right?
His nurse who handles the HCV patients was very surprised when she found out that he did not do a biopsy - she thought I needed one (to make sure I wasn't too damaged to treat?). Portann, the GI never really discussed side effects or how we'd handle them, except to confirm that I don't have a probelm with depression. I told him that I don't since I quit drinking three years ago, and he just looked at me funny and moved on. He basically said "You are motivated - you should treat - if it doesn't work we will start looking into alternative treatments". I haven't heard from him since, I've been dealing only with the nurse. He called me one time after that to give me an initial viral load - that is it.
Anyway, again, thanks all. A biopsy might have been nice to reaffirm my decision to treat or to reassure me that my liver is not too bad. From what you all have said, it is not all that accurate anyway. I think I am glad I am doing this now. I finally got a "real" job with insurance so that it was an option. And, I am not getting any younger and may want to have a child in the next few years.
I think I'm ready to stick it out =)
Hi jelise,
Others have given you good information about the value of and risks associated with a biopsy. Thought I would throw in something else you might find helpful.
It seems like you have already started treatment. My suggestion in that case is to gather as much information as possible on your response to the drugs. Information about viral kinetics in the early phase of treatment helps with making treatment decisions and calculating the odds of success. What is your specialist's plan for viral load tests? The more the better, some people have 2, 4, 6, 8, 12-week tests. At the very minimum make sure to get one at 4-weeks, not just 12-weeks.
When people are going to respond well to treatment there are usually clear signs very early on. Without an early response the odds decrease significantly. Some people do beat those odds, some choose to extend treatment to improve odds, and some choose not to risk damage from drug side-effects. At least be in a position to make an informed choice.
You are absolutely correct the in between stages are difficult. This is because
Fiborosis does not progress uniformly but in different areas to different
degrees.
Another plus for Fibroscan.One is able to get the best picture by doing many
readings in different areas of the liver (in my case they did ten)
to get the best overall picture.
How are you going to do this with a biopsy ?
Plus the fact that it is so easy to repeat allows for many follow up readings
which can give you a good sense of progression speed.
Sorry for highjacking your thread,but while we are on the topic,here is a great PDF file
http://www.cadth.ca/media/pdf/442_fibroscan_cetap_e.pdf
Ya think they would at least use the FIBROSCAN first,this way if they pick up heavy liver damge ,its saves the punctured liver.If they find no damge with the scan,then do the needle stick.I think this would save some time and money
"FibroTest and FibroScan have excellent utility for the identification of HCV-related cirrhosis, but lesser accuracy for earlier stages," the study authors concluded. "Refinements are necessary before these tests can replace liver biopsy."
http://www.hivandhepatitis.com/hep_c/news/2007/121107_d.html
Unfortunately I can not find any other explanation.
When the liver starts to build fibrosis it does not do this uniformly yet biopsy
claims to be able to most accurately read the stage of the entire organ
based on just one tiny slice. Not possible. There are people even on this forum that
where told based on biopsy that they where F1 and a short time later it turned
out to be cirrhosis. I call that misdiagnosis. Sorry. I much prefer having my liver
read in ten different spots (risk free) and get a good overall picture.In my mind hands
down
the way to go.
Now why is it that a completely risk free repeatable procedure that can only add
in getting valuable information (since non of the 3 firosure,fibroscan,biopsy are
100% accurate ) is not being made available ? Fibroscan has been around for
years. Still hepatologists in this country act as if it was some strange unreliable
machine. Thank god I went out of my way to go to Germany to get educated on
to technological progress and reliability of Fibroscan.As a matter of fact I still have to
write a whole post based on my experience because people are held in the dark
by their doctors about fibroscan.
Thank you for posting this,make one think if all that poking around is a money racket .500 buck a pop at a bad profit
Unfortunately, the Fibroscan hasn’t yet been approved for use in the U.S… we have fallen behind the EU in that regard. There are a few machines here for study use, but none to my knowledge available commercially. The other ‘surrogate’ blood tests such as Fibrosure are not particularly accurate for predicting midstage damage; they are relatively good for determining stage 1 and stage 4, as far as I know.
Bill
biopsy is stone age standard !
do a fibrosure bloodtest it is easy and quick.
find a good place to do a fibroscan to
back it up.if in doubt repeat those tests.absolutley zero risk or harm.you
will get a very good idea combined with
your bloodwork where you are.
biopsy is unnecessary ,cruel and risky
procedure that makes money for those
who perform it.
i just got back from a liver center in germany that currently treats 5000
hep c
patients.they say fibroscan is the new
golden standard.
don't do biopsy if you can avoid it.
when i did it they measured ten different spots on my liver in a few
minutes how are going to do this with a
biopsy without turning your liver
into swiss cheese?
Liver biopsies, conducted by extracting tissue samples with a needle, can underestimate the degree of hepatic fibrosis about 20 to 30 percent of the time because of the patchy distribution of fibrosis that occurs in the liver. Another drawback is that since liver biopsy is invasive, patients may be reluctant to have a biopsy performed and sometimes delay the procedure when liver disease is first suspected, says Dr. Talwalkar
"Using MRE, we can confidently avoid liver biopsies for patients with no evidence of advanced fibrosis, as well as for patients with cirrhosis," says Dr. Talwalkar
Isn`t there a blood test they use to measure liver damage called Fiberscore,i think thats the name.Ive heard its not as accurate but i think you still can do the test while in TX
ScienceDaily (Oct. 4, 2007) — Newer ultrasound and magnetic resonance (MR) imaging tests yield encouraging initial results in diagnosing fibrosis (scarring) and cirrhosis of the liver, according to three studies in the October issue of the journal Clinical Gastroenterology and Hepatology.
http://www.sciencedaily.com/releases/2007/10/071001092211.htm
Congratulations on starting treatment and already completing three injections.
Like you, I also had doubts and questions about the wisdom of my doctor's and my decisions after beginning my own forty-eight week treatment in April 2008.
I actually declined a pre-tx biopsy that my doctor recommended because I had a timetable in mind and having an 'extra' procedure didn't fit! That wasn't a very intelligent way to make an important decision but once I'd committed myself, there was much to be said for staying the course, which I did.
It was only later that I learned about the promising new drugs that likely shorten treatment time and improve the odds of success for harder to treat genotype 1 A's like ourselves. At that point, I thought it was in my best interest to carry on. I don't regret it, although there were days during treatment that I did.
I suppose that some degree of second-guessing is inevitable for all of us; however, it seldom amounts to a useful strategy.
I would recommend that you 'put your shoulder to treatment' and keep your eye on what's ahead. Find out now how your doctor plans to address future scenarios. For example, have you discussed what he intends to do if your hemoglobin drops to ten?
PA
Treating now will not lessen your chances in the future should you not clear the virus, assuming of course that any future therapy under this scenario would be different than a standard 48 weeks of PEG/IFN (the current SOC).
With newer therapies coming that are showing the most benefits for G1's , I would ask for a biopsy to ascertain any damage you may have to determine if you can safely wait for these drugs to come to market.
Your doctor seems to think the earlier the treatment, the better. If a patient in this scenario agrees, then there is absolutely no need for a biopsy. It would be pointless and as your Dr said a senseless risk exposure.
There is a very good chance that waiting will be a viable option for you and for this reason alone I would insist upon a biopsy. The newer drugs will cut treatment time in half and will save you from six months of risk from PEG/RIBA which can be potentially more than a biopsy procedure poses.
Best of luck.
ML
Hi Jelise,
This is a rather contentious subject in here; you’ll get conflicting opinions on this subject.
Personally, I think if you’re going to undergo treatment anyway, why bother with biopsy? It won’t heal you any faster, and while the risk is minimal, complications do occur.
If a patient is going to defer treatment, obviously a biopsy can yield valuable information. A poor Bx result might also provide enough incentive to keep a patient compliant with meds if their having a difficult time with treatment. There are many ways of viewing this; and your doctor is best qualified to discuss the risk benefit ratio with you.
If you had somehow progressed into cirrhosis, the doc should be able to detect that with biochemical markers such as platelets, bilirubin, protein, and other results; so you are really only trying to differentiate between stages of fibrosis, not cirrhosis.
We had an Australian hepatologist posting in here a few years ago, and he wouldn’t order a biopsy unless a patient could show good cause. He said he’d performed literally thousands, and one time he performed one on a young mother; he hit the hepatic artery, and apparently she bled out before he could assemble a surgical team to save her. Very rare case, but problems can occur.
Although failing this course of treatment won’t necessarily make the next course of drugs less potent, it does put you into a hard-to-treat population from a statistical standpoint. Did you discuss the option of waiting for the new PI drugs with your doctor prior to initiating this treatment? What was his take on this?
Interferon doesn’t cause drug resistance, if that’s a concern. In fact, it is used *in part* to clean up any resistant virus that might be left by the new PI drugs; this is one reason that it needs to be included in the new treatments, to my knowledge.
Others will probably chime in with their opinions as well; this is mine.
Take care—
Bill