Aa
Liver Biopsy
HOLY CR@P WHO STOLE MY LIVER?
Well, those weren’t the exact words I issued when I picked up my biopsy report today, -- I think I actually said more calmly, “This is not what I was expecting”-- but it sure was what I was thinking.
A little history ---
First biopsy – I have had Hep C minimally for 34 years, but probably for 40 years. 2005 biopsy showed Grade 1, Stage 1-2 (early periportal fibrosis, no piecemeal necrosis) I treated for 56 weeks in ’05-’06. I responded well but still had 40 IU/mL viral load at 12 weeks and was clear by a sensitive test at 20 weeks. Relapsed
Second biopsy – 2007 – after relapse – showed grade 1, stage 1-2
Third biopsy last Friday -- Grade 3-4, Stage 3-4 , plus Moderate to severe steatosis (never had that before) and “moderate to severe inflammatory infiltrate with portal tracts with significant piecemeal necrosis and lobular inflammation. Bridging fibrosis. “… findings are consistent with a chronic viral hepatitis with cirrhosis.”
There it was – the “c” word – cirrhosis. I never saw this coming.
I have been on this board quite awhile and am very familiar with the fact that liver progress is non-linear. It does not progress at the same rate – it may deteriorate at a fast rate, all of the sudden. But, when it happens to you…… it is another story. So, folks, let’s not rely on those old biopsies. Remember, we feel good until we don’t…
So, there is no question about it. I will be treating soon. I consult with the hepatologist on August 5, get the meds ordered and should be on my way soon. I spoke with the PA in Dallas and they have not received the report yet. They need to give orders to have the slides sent to Dallas for the pathologist there to read. All this needs to get done before my appointment. I am writing the doctor a letter so he can get the meds ordered now instead of waiting.
So to all my crazy and not so crazy friends here, I will be joining you soon and surwly will need your support.
frijole - bean
Well, those weren’t the exact words I issued when I picked up my biopsy report today, -- I think I actually said more calmly, “This is not what I was expecting”-- but it sure was what I was thinking.
A little history ---
First biopsy – I have had Hep C minimally for 34 years, but probably for 40 years. 2005 biopsy showed Grade 1, Stage 1-2 (early periportal fibrosis, no piecemeal necrosis) I treated for 56 weeks in ’05-’06. I responded well but still had 40 IU/mL viral load at 12 weeks and was clear by a sensitive test at 20 weeks. Relapsed
Second biopsy – 2007 – after relapse – showed grade 1, stage 1-2
Third biopsy last Friday -- Grade 3-4, Stage 3-4 , plus Moderate to severe steatosis (never had that before) and “moderate to severe inflammatory infiltrate with portal tracts with significant piecemeal necrosis and lobular inflammation. Bridging fibrosis. “… findings are consistent with a chronic viral hepatitis with cirrhosis.”
There it was – the “c” word – cirrhosis. I never saw this coming.
I have been on this board quite awhile and am very familiar with the fact that liver progress is non-linear. It does not progress at the same rate – it may deteriorate at a fast rate, all of the sudden. But, when it happens to you…… it is another story. So, folks, let’s not rely on those old biopsies. Remember, we feel good until we don’t…
So, there is no question about it. I will be treating soon. I consult with the hepatologist on August 5, get the meds ordered and should be on my way soon. I spoke with the PA in Dallas and they have not received the report yet. They need to give orders to have the slides sent to Dallas for the pathologist there to read. All this needs to get done before my appointment. I am writing the doctor a letter so he can get the meds ordered now instead of waiting.
So to all my crazy and not so crazy friends here, I will be joining you soon and surwly will need your support.
frijole - bean
dave
The hepo kept referring to to the Halt C study -- the 8-year study done on relapsers with advanced fibrosis. This was the study that determined that a low dose of "Maintenance" interferon was not successful in halting fibrosis progression. He told me not to obsess on it, but, of course, I have downloaded the trial conclusions. I just have not had the time to read all the data yet.
I do have some hopes that I can heal my liver if I achieve SVR. It just may not be entirely.
frijole
I guess we don't usually worry about the upper limit of detection, be careful what you ask for :). As you said, it's a good to know the doc is responding to what you want.
I am sorry about the result from your biospy. here is one study that disagrees about not being able to reverse cirrhosis
.
Hoping for a great result from your treatment
-Dave
http://www.natap.org/2008/EASL/EASL_75.htm
Results:
Baseline characteristics of patients were: male gender (71%), mean age (55±9 years), mean BMI (25±4 kg/m2), mean serum HCV RNA level 5.7±0.6 log10IU/ml, HCV genotype 1 (66%), 2 (7%), 3 (11%), 4 (15%).
Fifty-five patients (45%) had cirrhosis (F4), and 68 (55%) bridging fibrosis (F3).
Among the 55 patients with cirrhosis, SVR developed in 24 patients (44%) and was associated with regression of cirrhosis in 11 patients (46%).
Liver histology showed a regression by one, two and three points according to METAVIR score in six (25%), three (13%), and two (8%) patients respectively.
By contrast, regression of cirrhosis was observed in only 5 patients among the 31 patients without SVR (16%), by one and two points in 4 (13%) and 1 (3%) patients respectively (p < 0.01).
Among the 63 patients with bridging fibrosis, SVR developed in 25 patients (40%) and was associated with regression of fibrosis in 9 patients (36%), by one and two points in 5 (20%) and 4 (16%) patients respectively.
I am sorry about the result from your biospy. here is one study that disagrees about not being able to reverse cirrhosis
.
Hoping for a great result from your treatment
-Dave
http://www.natap.org/2008/EASL/EASL_75.htm
Results:
Baseline characteristics of patients were: male gender (71%), mean age (55±9 years), mean BMI (25±4 kg/m2), mean serum HCV RNA level 5.7±0.6 log10IU/ml, HCV genotype 1 (66%), 2 (7%), 3 (11%), 4 (15%).
Fifty-five patients (45%) had cirrhosis (F4), and 68 (55%) bridging fibrosis (F3).
Among the 55 patients with cirrhosis, SVR developed in 24 patients (44%) and was associated with regression of cirrhosis in 11 patients (46%).
Liver histology showed a regression by one, two and three points according to METAVIR score in six (25%), three (13%), and two (8%) patients respectively.
By contrast, regression of cirrhosis was observed in only 5 patients among the 31 patients without SVR (16%), by one and two points in 4 (13%) and 1 (3%) patients respectively (p < 0.01).
Among the 63 patients with bridging fibrosis, SVR developed in 25 patients (40%) and was associated with regression of fibrosis in 9 patients (36%), by one and two points in 5 (20%) and 4 (16%) patients respectively.
Side note - I was really impressed that the doctor had ordered the QuantaSure when I was there is June. This was not the test he would have ordered, but he did it because I said it was my preferred test. Well, that backfired because I was over the top. My viral load exceeded the 2,000,000 IU/mL (5,000,000 copies) upper limits of the test. He did not give me orders for another test, so I guess the one I had last October (2,800,000 IU/mL) would be the pre-treatment VL
frijole
frijole
This thread is a little old, but I like to follow up on the same thread to end things.
The biopsy stands. Grade 3, Stage 3-4. The slides were read by the pathologist and the hepatologist in Dallas. He said part of the liver has stage 3 fibrosis and part of the liver has stage 4 fibrosis. Thus it is treated as stage 4 and that is cirrhosis. He said even though I don't have the other markers -- ALT, AST, platelets, acites are anything like that, it is still compensated cirrhosis. He also said successful treatment would slow down the progress but not reverse it. I will now need ultrasounds or CT scans every 6 months to detect for liver cancer. He also wants me to get the Hep A and B vacinnation and said I can get the first one now, and that it is okay to get the shots during treatment.
The meds have been ordered. I have spoken to the mail order pharmacy that the doctor uses, and they are waiting for more information to get the Peg Intron approved by the insurance company. The doctor mentioned that there was no request for more information for the Victrelis, but they may ask for that after the lead-in is over. It seems that insurance companies are insisting on reviewing the PCR's before approval for the meds. This is creating a timing nightmare for some patients. He said I can get that 4-week PCR any time the week after the 4th INF shot and it seems that that might be imperative. Although I want the LabCorp QuantaSure test which is sensitive to 2IU/mL, that test gets sent to the California lab and that takes too much time to get the meds ordered in order to start the VIC on the exact date. In any event, it will all work out and the start date will probably be August 19. I am not eligile for the response guided therapy and am looking at the full 48 weeks. This is okay with me. I would be afraid to treat for any less time.
frijole
The biopsy stands. Grade 3, Stage 3-4. The slides were read by the pathologist and the hepatologist in Dallas. He said part of the liver has stage 3 fibrosis and part of the liver has stage 4 fibrosis. Thus it is treated as stage 4 and that is cirrhosis. He said even though I don't have the other markers -- ALT, AST, platelets, acites are anything like that, it is still compensated cirrhosis. He also said successful treatment would slow down the progress but not reverse it. I will now need ultrasounds or CT scans every 6 months to detect for liver cancer. He also wants me to get the Hep A and B vacinnation and said I can get the first one now, and that it is okay to get the shots during treatment.
The meds have been ordered. I have spoken to the mail order pharmacy that the doctor uses, and they are waiting for more information to get the Peg Intron approved by the insurance company. The doctor mentioned that there was no request for more information for the Victrelis, but they may ask for that after the lead-in is over. It seems that insurance companies are insisting on reviewing the PCR's before approval for the meds. This is creating a timing nightmare for some patients. He said I can get that 4-week PCR any time the week after the 4th INF shot and it seems that that might be imperative. Although I want the LabCorp QuantaSure test which is sensitive to 2IU/mL, that test gets sent to the California lab and that takes too much time to get the meds ordered in order to start the VIC on the exact date. In any event, it will all work out and the start date will probably be August 19. I am not eligile for the response guided therapy and am looking at the full 48 weeks. This is okay with me. I would be afraid to treat for any less time.
frijole
You know it amazes me you can unravel all of this at week what - 40 or so? Your mind is amazing. Those numbers are good. surely I can be one of those early responders.
Just got a call from Dallas and they have me slides but I missed the pathologist's review today so they will get reviewed with the hepo next Tuesday. (the suspense is killing me)
frijole
Just got a call from Dallas and they have me slides but I missed the pathologist's review today so they will get reviewed with the hepo next Tuesday. (the suspense is killing me)
frijole
in the midst of all the gloomy reading you're doing here's something that might cheer you up. From Table 16, page 55 of the Merck FDA submission, summarizing VIC results in RESPOND-2 (previous tx failures excluding null responders who were not eligible):
http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/AntiviralDrugsAdvisoryCommittee/UCM252343.pdf
For those UND after 4w of PI, SVR with RGT (36w) was 89% and with 48w 97%. Among the 'late responders' who still had VL after 4w of PI the rates were lower but still good 80% for RGT and 72% for 48W.
The equivalent numbers for INCI should be as good. So by the end of Aug. further damage should have come to a screeching halt and you could be looking at very good odds of SVR.
http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/AntiviralDrugsAdvisoryCommittee/UCM252343.pdf
For those UND after 4w of PI, SVR with RGT (36w) was 89% and with 48w 97%. Among the 'late responders' who still had VL after 4w of PI the rates were lower but still good 80% for RGT and 72% for 48W.
The equivalent numbers for INCI should be as good. So by the end of Aug. further damage should have come to a screeching halt and you could be looking at very good odds of SVR.
Took the whole day yesteday but I have read all of the articles linked in this thread. there are some very good ones here all of which help me with my understanding of progression, the interaction of steatosis and hep C and liver damage, and of course, reinforcing the knowledge of the various levels.
Thank you Hector for the links. They were very good.
Hector and Willing - thanks for the encouragement and I tend to agree with you -- the biopsy does not appear to indicate cirrhosis. However, I was surprised about the briding fibrosis, and since I have done some reading on regenerative nodules, am concerned about that. My slides should be on there way to Dallas and I will be interested to see what they say.
willing - how wise your words were to hear -- good thing I got this bx this year when the PIs are available instead of last year. It would have had to make some hard choices last year - like lock into 72 week SOC.
Thank you to everyone who posted. Sounds like some of you were just as floored as I was with this bx. (Trish - you are right -- sobering was the exactly right term)
flguy - you had that one right -- yes I was ready to treat anyway and this just pushes it over
the top.
can-do - sent you some mail. ejoli - sent you a message. doing time - same
I am going to start a new thread on types of biopsies since I have seen questions on this in the past and I have some new opinions on the matter.
Thank you Hector for the links. They were very good.
Hector and Willing - thanks for the encouragement and I tend to agree with you -- the biopsy does not appear to indicate cirrhosis. However, I was surprised about the briding fibrosis, and since I have done some reading on regenerative nodules, am concerned about that. My slides should be on there way to Dallas and I will be interested to see what they say.
willing - how wise your words were to hear -- good thing I got this bx this year when the PIs are available instead of last year. It would have had to make some hard choices last year - like lock into 72 week SOC.
Thank you to everyone who posted. Sounds like some of you were just as floored as I was with this bx. (Trish - you are right -- sobering was the exactly right term)
flguy - you had that one right -- yes I was ready to treat anyway and this just pushes it over
the top.
can-do - sent you some mail. ejoli - sent you a message. doing time - same
I am going to start a new thread on types of biopsies since I have seen questions on this in the past and I have some new opinions on the matter.
"Conclusion: Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection"
wow - there you go. I will be 64 in December. I don't believe I have seen this in print before.
I will take a look at that article. thanks
wow - there you go. I will be 64 in December. I don't believe I have seen this in print before.
I will take a look at that article. thanks
this article has been posted here many times. it is a sobering reminder.
http://www.medscape.com/viewarticle/554637
Abstract
Background: Age at infection is known to be associated with disease progression rate in hepatitis C virus (HCV) infected patients. The aim of this study was to assess when cirrhosis is expected to occur according to host and viral factors.
Methods: Fibrosis progression was studied in 247 naive HCV patients using multiple regression analysis. The expected age at cirrhosis was calculated for each patient.
Results: Progression rate was 0.13, 0.14, 0.27, and 0.36 U of fibrosis/year for patients with age at infection ≤19, 20–24, 25–36 and ≥37 years, respectively. Age at infection above 37 years was independently associated with fast progression (rate>0.13; P=0.001). Body mass index >25 kg/m2 and alanine aminotransferase>3 × ULN are also possibly associated with faster progression. Based on progression rates, the expected age at cirrhosis is 65.4, 64.6, 64.8 and 69.4 years for age at infection ≤19, 20–24, 25–36, ≥37 years, respectively.
Conclusion: Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection. Thus, age itself seems even more important than age at infection for predicting the occurrence of liver cirrhosis. A specific active monitoring and therapeutic approach should be adopted in older patients to prevent progression to cirrhosis and its complications.
http://www.medscape.com/viewarticle/554637
Abstract
Background: Age at infection is known to be associated with disease progression rate in hepatitis C virus (HCV) infected patients. The aim of this study was to assess when cirrhosis is expected to occur according to host and viral factors.
Methods: Fibrosis progression was studied in 247 naive HCV patients using multiple regression analysis. The expected age at cirrhosis was calculated for each patient.
Results: Progression rate was 0.13, 0.14, 0.27, and 0.36 U of fibrosis/year for patients with age at infection ≤19, 20–24, 25–36 and ≥37 years, respectively. Age at infection above 37 years was independently associated with fast progression (rate>0.13; P=0.001). Body mass index >25 kg/m2 and alanine aminotransferase>3 × ULN are also possibly associated with faster progression. Based on progression rates, the expected age at cirrhosis is 65.4, 64.6, 64.8 and 69.4 years for age at infection ≤19, 20–24, 25–36, ≥37 years, respectively.
Conclusion: Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection. Thus, age itself seems even more important than age at infection for predicting the occurrence of liver cirrhosis. A specific active monitoring and therapeutic approach should be adopted in older patients to prevent progression to cirrhosis and its complications.
thanks for the excellent link. there are some graphic images of cirrhosis, so mature audiences only. definitely R rated. maybe we can sneak in the fire exit.
as always
coeric
as always
coeric
i should have prefaced that comment with - i got a lot out of the link you provided with the diagrams of the nodules, portal and bridgin fibrosis and necrosis. Thank you. \
My internet service is booting me out - I have lost 3 comments so far, and am trying to respond to some folks but it is frustrating
frijole
My internet service is booting me out - I have lost 3 comments so far, and am trying to respond to some folks but it is frustrating
frijole
http://www.meddean.luc.edu/lumen/meded/orfpath/cirhosis.htm
good article , good pictures. I was looking for regenerative nodules and this article has quite a bit - thought you might find it of interest. Your bx said "nodule formation" -- mine said "highlights some regenerative nodules"
Fig.80 - REGENERATIVE NODULES:
these occur in micro and macro nodular cirrhosis.
they arise in the midst of scars favored by the rich arterial blood of scar tissue.
they are round nodules with a fibrous pseudo capsule with bile ductules due to obstruction of bile flow.
they have embryonal type of cell plates, two cells thick, "twinning of cell plates".
nuclei are aligned at the sinusoidal pole of the plates.
they often show focal cholestasis.
they may undergo dysplastic and malignant changes.
they compress the vessels of the capsule contributing to the perpetuation of the cirrhosis.
Now there is another distressing fact -- "may undergo.. malignant changes."
I have a lot to learn.
frijole
good article , good pictures. I was looking for regenerative nodules and this article has quite a bit - thought you might find it of interest. Your bx said "nodule formation" -- mine said "highlights some regenerative nodules"
Fig.80 - REGENERATIVE NODULES:
these occur in micro and macro nodular cirrhosis.
they arise in the midst of scars favored by the rich arterial blood of scar tissue.
they are round nodules with a fibrous pseudo capsule with bile ductules due to obstruction of bile flow.
they have embryonal type of cell plates, two cells thick, "twinning of cell plates".
nuclei are aligned at the sinusoidal pole of the plates.
they often show focal cholestasis.
they may undergo dysplastic and malignant changes.
they compress the vessels of the capsule contributing to the perpetuation of the cirrhosis.
Now there is another distressing fact -- "may undergo.. malignant changes."
I have a lot to learn.
frijole
I'm sorry about the report. I figure you knew you were going to treat again at some point and apparently the time is now.
I'll be supporting you and rooting for you.
Good luck,
Mike
I'll be supporting you and rooting for you.
Good luck,
Mike
cirrhosis does not equal death.
my hep c (very) specialist told me that you have a 5% per year chance of liver failure once you develop cirrhosis.
even money you see 73, right?
my hep c (very) specialist told me that you have a 5% per year chance of liver failure once you develop cirrhosis.
even money you see 73, right?
I am sorry to hear this news for you but it is good that you found out in time. This question has been asked before. What are the advantages and disadvantages of biopsy vs. fibroscan/fibrosure? How can you tell what goes on with the whole liver from one sample? The doc says that one test has not been approved in US. Which one is that? I know it is probably a good idea to take a test that has developed a bank of information over the years and become the gold standard but any other reason?
What an awakening that must have been. I also am starting tx soon, how are you choosing which drug to take? I consult with my doctor (phone) Aug 1 and she wants me to decide btw the 2 or just do SOC. Hum. Something to think about. I have had 3 bx's and each one has gotton worse, (10 year period) and I could not live a more "cleaner" life.
Good luck to you and we will go through this together. Mo
Good luck to you and we will go through this together. Mo
I had exactly the same biopsy report prior to treating with Telaprevir, so I know exactly how you feel. As everyone has said, you don't have portal hypertension, so it's not too late.
I had a fibroscan last week, 3 years SVR, and it improved to stage 2 - 3 from 3 - 4 transitional.
I look forward to an SVR party with you!
Best of luck,
Eric
I had a fibroscan last week, 3 years SVR, and it improved to stage 2 - 3 from 3 - 4 transitional.
I look forward to an SVR party with you!
Best of luck,
Eric
Sobering news on the current bx. I remember that feeling well (Stage 4, Grade 3). On the positive side, it got me off the fence about whether or not to tx, got the ball rolling, the deal done and now am over a year post - SVR.
I have no doubt that one day we will be sharing congrats and high fives on your SVR post.
Hit the ground running and keep your eye on the goal. Best wishes, Pam
I have no doubt that one day we will be sharing congrats and high fives on your SVR post.
Hit the ground running and keep your eye on the goal. Best wishes, Pam
You were edging closer to tx anyway. And after 35 or 40 years you certainly have a lot of mileage left. A few good things in your farvor; you have knowledgeable docs, you know your way around this stuff with years of experience , it's after May 2011 and you live in Texas. Even if the doc looks at the slides and thinks it's less than 3/4 by his estimation (like 2/3) I imagine you'd jump in anyway. Hang in there, Kathy !
I'm so sorry to hear this. It's a cold hard reality reminder to us. Very well said-we feel good until we don't.
My heart goes out to you, but it will also burst with happiness for you when we hear that 4 week UND from you.
Isobella
My heart goes out to you, but it will also burst with happiness for you when we hear that 4 week UND from you.
Isobella
I'm so sorry this has happened:(
Good luck on 8/5 and with your upcoming TX.
You almost got to UND before, if you're doing triple
therapy, no doubt, you will achieve SVR.
I sincerely wish you the very best going forward.
Elaine
Good luck on 8/5 and with your upcoming TX.
You almost got to UND before, if you're doing triple
therapy, no doubt, you will achieve SVR.
I sincerely wish you the very best going forward.
Elaine
Hey there! I am so sorry to hear of your news. I know it must be a shock, it was for me.
The statement "Remember we feel food until we don't.." is so true
I am praying for you
Dee
The statement "Remember we feel food until we don't.." is so true
I am praying for you
Dee
" But, when it happens to you…… it is another story. So, folks, let’s not rely on those old biopsies. Remember, we feel good until we don’t… "
Very wise words. I am so sorry about the difficult news. Hopefully we will hear some great news from you from the new tx and your liver will be able to heal.
You know we are all with you as you have been with all of us!
-Dave
Very wise words. I am so sorry about the difficult news. Hopefully we will hear some great news from you from the new tx and your liver will be able to heal.
You know we are all with you as you have been with all of us!
-Dave
Frightening. I am in tx but still learning alot. I am sorry for the biopsy results but glad you are going to try again with the new meds. I hope everyone who sees this forum that is treating will come back (at least occasionally) to let everyone know whether or not the new meds worked. I am hoping and praying they work for you and will be watching for updates. Take care,
G
G
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