To biopsy or not to biopsy?

Well, I now know what my viral load etc is...I am 21900 and a genotype of 3a.  Is it necessary to have a biopsy with such low numbers I can treat and have a good chance of clearing correct?  Is it necessary to go through that with such a high chance of clearing?
D

[jmjm530]

Because geno 2's and 3's are usually urged to treat regardless of the amountn of liver damage, biopsies are often not given. That said, there are some advantages to knowing the exact amount of liver damage but on the other hand biopsy is invasive and carries some degree of risk. An alternative might be LabCorp's Fibrosure test which is a non-invasive test using blood markers.

Sounds like you've made up your mind to treat and based on your genotype and viral load, everything is in your favor for being cured. I highly suggest a sensitive week #4 PCR test to monitor your progress and give you treatment options. A recent study in Italy showed that geno 2's (and I think 3's) do just as well with 12 weeks treatment if they are non-detectible at week 4. One of our members, "Rifleman" I believe just completed the 12 week course and others are considering it.

-- Jim

[FlGuy]

I'm a 3a also.  basline VL was 465,000 (5.67 log). Earned HCV 'bout 32 yrs ago. Doc says stage 1, close to 2.  Just got off the phone with him 12 wk PCR (Quest) is undetected.  Will continue the 24 wk to see if I can get liver benefit.  So, I expect SVR (geno 3's SVR rate in the 80% range).  So, Azgrl, you are in good shape - depending on your biopsy.  Go for it!

The wake up in the conversation was that I need to head off to a Univ Liver clinic, check in and get on transplant list.  Doc said that even though will likley SVR the progression of cirrhosis will continue.  I thought I'd be out of the woods if I took care of the HCV.  Although I've learned much from the folks here I don't know much about cirrhosis progression post-SVR.  Anyone (jmjm?) have a good lead on understandable reading/studies?

So, Azgrl, don't count on the numbers alone.  There's more to this stuff.

[NYgirl]

You are STAGE ONE and going to achieve SVR and they want you on a transplant list?????????????????????????????????????????

How can that be???????????????????????????????????????

[cougareyes]

You do have a better chance of successful tx w/ your genotype. Though I have heard more frequently that genotype 2s and 3s are relapsing more and are having other tx complications. Still you have good odds, don't get me wrong.
The point is knowing the exact condition of your liver may help you make tx protocol decisions. As to how aggressive you want to be, if there is greater damage some are recommending longer tx times, choicing intervention and how the sx effect you and when enough is enough. If you are ever faced with the decision to end tx, your damage would play a huge role into how much risk you should trully take. Good Luck

[mikesimon]

I never heard of cirrhosis progressing after SVR. I cannot believe that it would since there would be no additional assault on the liver unless you provided one with alcohol, for example. I would really wonder about the doc. Hey, it never hurts to be prepared and getting listed can't hurt but I can't imagine you'd have a MELD score anywhere close to qualifying for transplant at any center. I'd relax if I were you and just get through the tx. Good luck. Mike

[FlGuy]

That's what I thought.  He's been pushing me to go since day 1. But I wanted to wait for the 12 wk PCR.  I figured if I was stage 1-2 and undetectable what would be the point if I was heading to SVR.  If I was detectable - I had bigger problems.  But this new wrinkle (at least to me) about continued cirrhosis progression threw me for a loop.  He suggested that going to the clinic and getting on a list would give me a foot in the door for future reference and that Ins. will cover it so thay may have a difficulty in denying me later when I progress.

I'm confused. BTW way, NYGirl, FLGuy earned his HCV in NY. Boy!

[carpedi]

Apologies for breaking in here, but I think it was you, Jim, who at one time gave a site for an article on SVR in geno 1's after only 24 weeks, if they cleared by 4 weeks and had a low viral load to start with. Just got a call from my PA to whom I'd given a copy of the article and she's lost it and needs another. Do you happen to remember where you found it? I tried the archives, but can't seem to find it. Thanks!

[v eggie dip]

I am very surprised to hear that too...

I just finished reading a book by a world leading hepatologist that has a entire section on cirrhosis...she states that you never can rid the liver of cirrhosis but if SVR is achieved no new scarring occurs, unless of course through alcohol, drugs, or reinfecting...I am sure you got totally freaked out when he said that to you, I would too, but I am sure he/she is just being proactive, and that's a good thing..

veg-o-matic

[FlGuy]

Thanks Mike. Need to grind out the next 11.  Since Tx have also pick up insulin-required diabetes and med-required Hi BP.  I'm sure they are all connected.  When done with TX will try to get my physical act together and re-group.  Not overweight but had a hint of HCV many years ago and in the last 20 years not much of a drinker (6 beers a year)

[FlGuy]

Beth,

Can you tell me title/author.  I need to learn more.  If there are sections in the book on blood boiling, bee stings and double grande latte enemas - then never mind.

[v eggie dip]

the author is Jenny Heathcotte, MD  title is "Living with hepatitis C"...Jenny is a British Physician that practices meds in Toronto, her expertise is in cirrhosis, but writes books on HCV and does treat some people...I asked my PCP to refer me to her and he said no, she's a transplant scientist, goes to shpw what he knows...If intersted, google her name and books she has written can be purchased online, also there is a audio presentation she did on HCV that you can listen to...

"the dip"

[azgrl]

Thanks for all the advice.  I am certainly going to treat but I was unclear on the whole biopsy thing.  I want to stay away from the hospital as much as possible.  Everytime I have been in for any surgery I have come out with more than I bargained for....  If it is necessary in determining the potential for relapse or how long I should treat then I will consider the biopsy more.  Is there any harm in starting treatment then doing a biopsy? or will that mess with the results?
D

[friole]

If it were me, I would want the biopsy anyway.  I wanted to know the extent of the damage.  If for some reason, you don't clear (and chances are so good that you will) you would want to know the damage then, to determine future protocal.   Especially in light of what FI guy has been told, I would want the biopsy.
Kathy

[friole]

I was  ready to cheer about your 12 week PCR -- and then read the rest of your post.  If that is true, that you should be on a transplant list, so should all of us here.  I think you need a second opinion on that one.  What a shock.  I think the guy is nuts. I do #12 on Friday, then my PCR --- nervous about that.
Kathy

[jmjm530]

I think your doc needs to register on  the brain transplant list before you register on the liver transplant list :)

Unless I'm missing something big, if you're between stage 1-2 they won't even talk to you at a transplant center. Reality is you have very little liver damage now and studies suggest if you SVR whatever damage you have will regress.

Don't know what else your doc is telling you but based on this I'd re-evaluate the relationship or at least run everything by our little group of misfits here.

-- Jim

[jmjm530]

Carpedi..

You can probably find a more complete summary. By memory, it's under 600,000 IU/ml to qualify.
http://www.hivandhepatitis.com/2005icr/easl/docs/041805_f.html

Veggie...The book is probably dated. In any event, it does not reflect current thinking as I've heard it..which is...liver damage, including cirrhosis can be reversed in many cases after SVR.

-- Jim

[jmjm530]

azgirl asks: "f it is necessary in determining the potential for relapse or how long I should treat then I will consider the biopsy more. Is there any harm in starting treatment then doing a biopsy? or will that mess with the results?"

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

First, you either do a biopsy before or after treatment, but not during. Actually, you could have one during but I doubt if you would find a doctor to do it for various reasons.

Unless your biopsy shows late stage 3 or stage 4, I doubt they would change your treatment program. Again, given your genotype, etc., your concerns about biopsy are not entirely unfounded. Again, there's a blood test called "Fibrosure" by LabCorp that is somewhat accurate especially at the ends of the spectrum. So, if you do have cirrhosis, the labcorp test woulde probably pick something up and then you could have the biopsy.

If it were me, I'd probably do the biopsy because I want to know more than I probably ought to about everything :) ...on the other hand, you've had some bad experiences with procedures so don't discount your personal experience. Good luck.

-- Jim

[v eggie dip]

"Veggie...The book is probably dated. In any event, it does not reflect current thinking as I've heard it..which is...liver damage, including cirrhosis can be reversed in many cases after SVR."

hey guy haven't seen much of you lately, hope you're well..can you guide me to a link that states cirrhosis can be reversed please?

merci

Beth

[rifleman]

Yeah, I did 12 weeks (geno 2b)after my 4 week PCR came back neg.  Another member here (Artgal) who has the same doc as I went 18.  Now the hard part is waiting for the 6 week PCR (blood draw on Oct. 20).
If you, as a geno 3, clear at 4 weeks you may want to research the 12 week option.  I recall reading that the geno 3's did not do as well as the 2's after 12 weeks.  The 2's had a 90% SVR rate after 12 weeks, but I think I saw that the 3s' had something like 67%.
In any event, you gotta get the 4 week negative first, or 12 weeks will not be an option anyway.
I believe that the general rule is to treat for 3 times as long as it takes to clear the virus.
One important thing to consider is whether to use Pegasys or PegIntron.  The 12 week Italian study involved every participant using PegIntron.  My doc informs me that there is a current study to determine if 16 weeks is enough tx for those 2's and 3's who use Pegasys and clear at week 4.
Finally, try to be 100% compliant with you meds.  I remember choking down ribavarin and forcing myself to keep it down long enough to dissolve.
Still, I threw my last 3 ribas in the trash.  I took my first 3 with my first shot on a Friday nite.  That means I had 3 for the Friday morning after my last injection.  I looked at them for a few minutes that ri morn and then chucked em.  With a 4-day half life, who cares??  Besides, it was fun to do.
DJL

[FlGuy]

Thanks Beth.
Paul

[johnisme]

Hi, if you need a bx don't worry. I Just had one this morning and i didn't fill a thing. After 4 hrs they let me come home and i fill fine no pain. Had the fibrosure test last month will be interesting to see how close the two match up. Best of luck to ya...John

[NYgirl]

I was so scared for my biopsy that it freaked me out. That is what hurt.  If you go in and say it's not going to hurt - you will have a much easier time. I just wouldn't believe it for anything.  

chicken little signing out.

[v eggie dip]

did you have to do any blood work prior to your biopsy?

thanks Beth

[NYgirl]

There is ALWAYS blood work for everything we do isn't there?  LOL

Also they made me pee.  Don't know why.  I was so thirsty from not being able to drink anything i was like are you kidding me?

[mikesimon]

I'm sorry to learn about your DM and BP issues. I too acquired diabetes as a result of my liver transplant and subsequent treatment for acute rejection. The treatment for rejection is an intravenous injection of 1 gram of solumedrol which is a steroid - and that shuts the immune system right down and shocks the hell out of the pancreas as well. The other byproduct of the solumedrol is that the hep c virus gets a wide open playing field to do whatever it wants and it can do some pretty weird stuff. My advice on the DM is to tightly control your glucose and test often until you get a feel for how your body reacts. I think that the main thing diabetics overlook is post pradial (after meal) glucose and recent evidence indicates that it is best to avoid any excursions. They'll occur but watch that excursions are infrequent and minor. I had a motorcycle wreck and my blood sugar got out of wack for a while. I tested at least 6 times a day and most of the time more until I figured out how I reacting to different foods. I too use insulin because it is easier for me and I have no cholesterol or weight problem so I can eat what I want as long as I cover with humalog. I wish you the best of luck. Just stay positive. Mike

[johnisme]

Hi, would have taken it this morning but my hep doc took it last week, i posted to you down a few questions about aspirin... Take care... John

[NYgirl]

When I got there they first took me in to the blood sucker and she took a tube of blood. Then I peed (not by accident LOL).

Then I waited for a long time laying in the bed (they have to put an IV in you just in case you know) and then they wheeled me in and got started like ASAP.  FAST once it gets started.

The whole thing doesn't even last three minutes.  It's very quick.  Bing bang boom.  Or since i"m from NY should I say badda bing, badda bang, badda boom.

;-)

Then you lay there for four hours and watch tv or sleep or whatever. They gave me a MILD sedative (bluck didn't do anything) and afterwards a percocet.  Wow one whole percocet!  ;)

But I did fall asleep I was so bored.

[v eggie dip]

thanks John, it's very much appreciated, was having a panic attack there for a minute...I think my axiety sometimes is worse than the HCV...

Beth *smiling again*

[FlGuy]

The blood test before biopsy is to determine if patient is a bleeder. As I recall, the test needs to be done prior to the procedure (no more than 7 days before).  I had such a blood test before a 'scoping' in another area just 2 weeks before the biopsy.  The radiologist insisted on a more recent one - 2 weeks was too old.  The results must be available before the procedure.

[azgrl]

Would it be typical to have minimal damage to the liver with low numbers?  Or do the two even coincide at all?
D

[v eggie dip]

thanks guys and gals for your valuable input...I think my biggest fear is the damned IV in the hand...I don't have viens that allow needles to adfvance so it takes 4-5 pokes...Hurts like a son of a gun...

"the soon to be harpooned dip"  YIKES!!

[jmjm530]

Here's the best I can do between commercials. :)
http://www.hcvadvocate.org/hepatitis/hepC/Reversal.html

But I'm sure they're a number of referecnes if you do a complete search. I've also read the same thing in Q &A's with on-line doctor web sites as well as in conversations with a couple of heptologists. No guarantees but the thought is that fibrosis -- even cirrhosis -- can be reversible after SVR. Even without SVR reversal occurs in some cases.

[johnisme]

Yeah they made me pee also, they told me it was to make sure my bladder was empty  because i would' be able to get up after the bx. for 4 hrs for fear of bleeding... That for me was the worse part laying flat on my back for that long...John

[v eggie dip]

can you bring a book to read, do you have to lay on your back, not your side?

[johnisme]

yeah you can read, and yes they made me lay flat on my back could't even raise my head up, they had a tv so that helped..John

[johnisme]

P.S. did you catch my post to you about the aspirin in the NEW GIRL POST?

[v eggie dip]

yes I did John, thanks, that was a concern as well...I hardly ever take aspirin but had major aches and figured well maybe I'll take some bufferin, it helped the aches...I am not surprised my Doc didn't tell me any of this, he's useless...Thank God for people on here :)

"the more relaxed dip"  :)

[hep62pj]

I kinda remember alot of pain after my biop, I laid on my side for like 4 hours but the first hour or so it hurt to just breath...they gave me something pretty good for the pain, not sure but I think it was darvocet maybe?? But nothing for afterwards for pain...but after that first hour, I was ok...

[v eggie dip]

did they do the blood work at the Hospital just before the biopsy?  Reason I ask, had no idea you needed a test fopr blood clotting prior to the biopsy, just found out from a friend on here...Now I'm freaking out because I know I have not had this particular test and no one at Doc's office said I needed it...

[GoofyDad]

I think we discussed this with New Sojourn last week - you might find more down there somewhere.

My hep guy said they've seen cirrhotics return to 0, "though that's the exception". He wasn't specific whether "seen" meant "have cared for several in our practice", or, "read an isolated case in a study". He ballparked a 50-50 chance of me regaining "a couple stages" if I should acheive SVR. I think he talks on the 0-6 ISHAK scale, meaning I could realistically hope to get down to a 3 from my present 4-to-5. Overall, he says if I get to SVR, the prognosis is "very good".
C'monbabymamaneedsanewpairoshoes.....  

They're a transplant center and FYI, they don't have me on any lists. I have full respect for those who have made it through that process, but I gotta tell ya I can wait. It kinda creeps me out riding the elevator up to the transplant center. I took my Dr some fresh seafood I caught & I felt even creepier carrying a cooler in & out! "Just a routine delivery folks! Don't mind me."

[go-girl]

Like FIGUY said, the pathologist wants recent bloodwork for the reasons stated. I didn't get IV or painkiller before or after he had the help of an ultra sound which I was told makes it safer for them to see  where to inject. I had no pain, they like you  to lay on your side where liver is to put pressure on liver to help not to bleed, I stayed two hours, and was on my way, good luck,

[sunspot]

They may or may not IV you. That's up to the doc/clinic/hospital. If they do, make them put the IV in an easy vein, like the crook of the arm or whatever. I have rolling veins on the back of my hand and if they insist on putting in my hand, I tell them they have <b>one</b> chance to do it and if it fails, to call the doc in. They mostly put it in my elbow crook.

Dana

[sugarray]

I am also a gentype 3A with a v/l of 584,000.  I met with the hepatologist this week and wants me to go on a 6 month treatment of pegassys (sp)?? and ribo(??)  After he told me this I still told him I would like to have a liver biopsy done just for my peace of mind.  So he agreed and it should be done within 2 weeks and then we will review my treatment again.  I had a liver biopsy about 10 years ago and it is not bad at all - of course you are sedated and really don't care.  I would advise you to get the biopsy just to determine if your liver has been damaged or not.  Best of luck.

[LvdByGod]

azgrl, put me down as one who thinks you should go ahead and get the biopsy for your own benifit. the reason is that you can have a low viral load and still have serious liver disease. you will definately want to know where you stand...i had a viral load of 500,000 iu, which is considered very low...my dr was also telling me that i didn't need a biopsy...well i insisted on it because i wanted to know how damaged my liver was...when the biopsy came back and the dr looked at it in my presence for the first time i saw him gasp...he said ohhhh...i'm amazed.... you have stage/grade 3-4!!! i had the hep c for about 25 years. later i had a viral breakthrough (virus broke through the interferon) and i had to decide what i was going to do...stop meds, go longer, or increase strength of meds...all this depended on where i was at in damage...i decided to go longer since i was so close to cirhosis and couldn't afford to wait for new meds...

so know one knows how close to cirhosis you are until your biopsied...it is really no big deal to get a biopsy either and is considered a very safe proceedure as long as its ultra sound guided...most of us here have had one and did just fine...i had twilite sadation and didn't feel anything...just fell asleep and woke up done...rested the rest of the night and light activity the next day...i was fine...i'm sure bad things have happened to a few folks but they are rare...just get a good dr with alot of experience with biopsies, and make sure its ultra sound guided...

there is another good thing about biopsies and that is if you are very damaged you can get a follow up after tx to see if it is getting better and/or staying stable. the other good thing is that if by some chance you don't clear or have problems with tx...you will know if you can afford to wait on further treatment or must continue cause it's life or death...without this info you can not make that decision acurately.

FIguy, i'm curious if a hepatologist told you that? also if he could have meant stage 1-2 cirhosis...not fibrosis?

let me tell you i had a gastrointerologist tell me i needed to get on the transplant list at grade/stage 3-4 close to cirhosis yes but not there yet. anyway the more i studied up on this and talked to my new "hepatologist" at UIC...the more i realalized he just didn't know what he was talking about...it was far too EARLY for me to be put on a transplant list...you can be evaluated for a transplant and even find out your meld score but unless you are really advanced in cirhosis you will not be able to get on a transplant list anyway...some have a hard time being sick "enough" to get on the list... they will not put someone who is "compensated" on a transplant list. only those declared to be uncompensated and probably not until they are end stage liver disease...take a look over at Janis' for more on transplant information and also at this site;

http://forums.delphiforums.com/liverfailure/messages?msg=2080.1

YOU SHOULD ALWAYS GET TO THE BOTTOM OF THIS SORT OF STATEMENT FROM YOUR DR...find out why he said that...he probably thinks he's being helpful BUT DOESN'T REALLY UNDERSTAND THE FACTS ABOUT TRANSPLANTING...if your not satisfied you could always follow up with a hepatologist... who should know what he's talking about...drs really don't know everything like we'd love to think they do!

hey mike how the heck are ya???  good i hope! hey, don't forget to add "fatty liver" to that list of things that can make you advance in disease after clearing hep c...folks who are overweight really must be concerned about this possibility...but,that being said it still doesn't explain why FIguys dr made that comment at stage 1-2.

have a great day all!

[jmjm530]

The problem may be the media and not the author. Most studies on fibrosis reversal have been done in the last couple of years. Check the original copyright (first printing) of your book. You'll probably find it pre-dates most of these studies. Hep C research and knowledge changes day by day.

-- Jim

[jmjm530]

LvdByGod has an excellent point that the rest of us overlooked.

Make sure it's not stage 2 Cirrhosis your doctor is talking about. If so, then the transplant recommendation makes more sense. But I really doubt that's what he meant. Worth a call.

-- Jim

[TnHepGuy_]

I wouldn't put too much stock into what you've read from that "leading expert" hepatologist regarding the "irrversability of cirrhosis". Here are a few studies/papers I have laying around (of which I'm sure there must be even more data published by now) showing dramatic and amazing improvements in liver histology for a certain percentage of cirrhotics:

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15188169&query_hl=3">Long-term benefit of interferon alpha therapy of chronic hepatitis D: regression of advanced hepatic fibrosis</a>

(from the study): <i>"Strikingly, we documented an absence of fibrosis in the final biopsy of 4 patients with a long-term biochemical response and an initial diagnosis of active cirrhosis. CONCLUSIONS: High doses of interferon alpha-2a significantly improved the long-term clinical outcome and survival of patients with chronic hepatitis D, even though the majority had active cirrhosis before the onset of therapy."</i>


<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14767986">Effect of peginterferon alfa-2a on liver histology in chronic hepatitis C: a meta-analysis of individual patient data</a>

(from the study): <i>"In conclusion, in patients with chronic hepatitis C with or without cirrhosis, peginterferon alfa-2a (relative to IFN) significantly reduced fibrosis."</i>


<a href="http://www.natap.org/2003/sept/093003_10.htm">Impact of pegylated interferon alfa-2b and ribavirin on liver fibrosis in patients with chronic hepatitis C</a>

(from the study): <i>"The reversal of cirrhosis was observed in 75 patients (49%) of 153 patients with baseline cirrhosis."</a>


<a href="http://www.hcvadvocate.org/news/newsRev/2004/HJR-1.3.html#2">Patients with Cirrhosis Benefit from Treatment"</a>

(from the paper): <i>"Patients with compensated cirrhosis (the liver is damaged but can still carry out most of its normal functions) can benefit from interferon therapy.....Those who achieve an SVR have decreased fibrosis progression, and some show improvements in liver damage.....Even some patients who do not achieve an SVR may still experience histological (tissue health) improvement.</i>"


TnHepGuy

[v eggie dip]

thanks for the info. I guess it's just another thing to chalk up to sub-standard health care, and now keeping current, here in O'Canada...Can't even believe what I read  LOL

[cuteus]

just a reminder, when did your breakthrough happen?  I remember it was after the 6 mo into tx?  
It got me thinking that most 3as are done by then and if they relapse, that could have been a "breakthrough" instead, had they gone longer. If you would have been done at 6 months it would have been your relapse instead of a breakthrough, interesting. but only if it happened after your 6th mo.