Aa
False fiberscan reading F1 to F4 in 5 years
I had bloodwork and a fiberscan of my liver 3 months back which both confirmed I was between stage F1 and F2.. Blue Cross blue Shield insurance requires minimum Stage 2 or higher to treat with Harvoni. Had laproscopic biopsy last week hoping it would possibly discover stage F2 for treatment.. Results just in found I am Stage F-4!!! OUCH!! Dr mentioned I was not cirrhotic yet? Never heard of such. F4 is Cirrhotic from all I've heard. Has anyone heard of such a mis diagnosis? I'm devastated. Have been thinking I was stage 1 for years living as though I was invincable..
Hi Dee and thanks for your comments. 48 weeks! WOW! Thought I had it bad at 20 weeks. I feel the pain. I was looking like an end stage aids patient when they finally thru in the towel for me. The whole time I was trying to run a 4 star restaurant pretending I had stomach virus.. Song Bird suggested ns5a testing by Quest labs. I'm going in next week for that. Many thanks for that suggestion. Dee, I was told it was early cirrhosis but this is coming from the Dr that said I was F1. I'm glad to know there are different stages. Just re-read that you were told possible cirrhosis. Did they mention a fiber stage and was all that 7 years back? Glad you are doing now doing well. Are you SVR or soon planning tx. I really appreciate your positive help. At this point I believe I need to get a 2nd opinion on everything and find whats going on with these high iron levels..
Hi Philbert.....
In regards to your testing for fibrosis,I personally would not get to caught up in the " lab-speak". It is true your fibrosure test as well as fibroscan showed basically st.1-2 damage and the biopsy showed st4. with mild to moderate inflammation(gr2-3).
The biopsy for the most part is still considered the "gold standard" of tests,however, it, as well as the other tests you have had are all prone to some degree of error.
What.what seems to be important at this stage by what your post says.is for you and your doctor (and hopefully insur.co.) to elicite the proper treatment as soon as possible.
Given that you failed a prior regime which included Daclatsivir, which is an Ns5a drug,there may be, as you mentioned, some resistance issues now concerning this type of drug.
The latest research shows that this resistance, may last for quite some time ,however there there is yet to be any concrete data on" how long".
"Quest" labs just recently have started running tests for this resistant mutation given what they must feel a need will now be, given ppl doing the two approved treatments which both conatain the Ns5a and there will be some percent of failures.
My suggestion is to speak to your doctor about having this test before you start any treatment.
I believe it is quite expensive and not sure if your insurance co. will cover it ,however seeing as you failed the Ns5a it would seem beneficial to have this. while.
Possibly there are others here that may read this, that their circumstance is similar and they can chime in as to what they have done moving forward after failure with the Ns5a.
I agree with the prev. poster that suggested you start this thread posed as a new question.
All the best...
.
In regards to your testing for fibrosis,I personally would not get to caught up in the " lab-speak". It is true your fibrosure test as well as fibroscan showed basically st.1-2 damage and the biopsy showed st4. with mild to moderate inflammation(gr2-3).
The biopsy for the most part is still considered the "gold standard" of tests,however, it, as well as the other tests you have had are all prone to some degree of error.
What.what seems to be important at this stage by what your post says.is for you and your doctor (and hopefully insur.co.) to elicite the proper treatment as soon as possible.
Given that you failed a prior regime which included Daclatsivir, which is an Ns5a drug,there may be, as you mentioned, some resistance issues now concerning this type of drug.
The latest research shows that this resistance, may last for quite some time ,however there there is yet to be any concrete data on" how long".
"Quest" labs just recently have started running tests for this resistant mutation given what they must feel a need will now be, given ppl doing the two approved treatments which both conatain the Ns5a and there will be some percent of failures.
My suggestion is to speak to your doctor about having this test before you start any treatment.
I believe it is quite expensive and not sure if your insurance co. will cover it ,however seeing as you failed the Ns5a it would seem beneficial to have this. while.
Possibly there are others here that may read this, that their circumstance is similar and they can chime in as to what they have done moving forward after failure with the Ns5a.
I agree with the prev. poster that suggested you start this thread posed as a new question.
All the best...
.
Hey there! It is early, I know others will be along soon. If I were you I would post the above as a new question.
If I were you I would worry about resistance as well though I am not positive I remember reading that some of the new meds could cause a resistance. Of course that could be the Incivek and Victrellis.
I don't blame you for wanting to try the tried and true. When I was first diagnosed I trusted my doctor, he put me on a trial a level 2. Back then I thought doctors were here to help us, not use us for guinea pigs. I was very naive. My primary was shocked that he did not try the SOC at the time. Though on the SOC plus the trial I was so sick they had to keep reducing interferon and riba. It was a 48 week nightmare which I responded to but relapsed 4 weeks later.
I don't know if this will help but there are people on here who did the Sovaldi/Olysio it didn't work so now they are on Harvoni which has Sovaldi and the Leda. As time has gone on some have added Riba to the mix for 24 weeks.
I hope you get some more answers and I will try to find them as well.
Some of this is so new, I haven't read it enough times to remember :)
If your doctor recommends Viekera, that should be good.
I hope you get some answers, I know how it feels to treat, relapse, try again.
Dee
If I were you I would worry about resistance as well though I am not positive I remember reading that some of the new meds could cause a resistance. Of course that could be the Incivek and Victrellis.
I don't blame you for wanting to try the tried and true. When I was first diagnosed I trusted my doctor, he put me on a trial a level 2. Back then I thought doctors were here to help us, not use us for guinea pigs. I was very naive. My primary was shocked that he did not try the SOC at the time. Though on the SOC plus the trial I was so sick they had to keep reducing interferon and riba. It was a 48 week nightmare which I responded to but relapsed 4 weeks later.
I don't know if this will help but there are people on here who did the Sovaldi/Olysio it didn't work so now they are on Harvoni which has Sovaldi and the Leda. As time has gone on some have added Riba to the mix for 24 weeks.
I hope you get some more answers and I will try to find them as well.
Some of this is so new, I haven't read it enough times to remember :)
If your doctor recommends Viekera, that should be good.
I hope you get some answers, I know how it feels to treat, relapse, try again.
Dee
Good question Dee and thanks for your warm concern. I am 1a and have been through 3 tx, last was 2010 test study of Daclatasvir plus rebaviron & peg interferon. Relapsed around week 20.. Because of previous Daclatasvir treatment, I'm concerned one of the new drugs (Harvoni or Viekera) could possibly pose a possible NS5A resistance of some sort. I have a friend on Harvoni that was in same (BMS) study. She recently had rebavirin added after 4th week V/Load check didn't come back as well as expected. My Doctor mentioned VieKera 24 week may be best for me yet also suggest and pushed (very hard) for new study they are doing involving ABT-530 & ABT-493.. I have an uneasy guienea pig type feeling about test studies after past experiences.. Think I'll stick with tried and proven, "however", I wish someone could give definative answer as to whether past Declatasvir tx could have have an affect on which drug I choose..
Thanks for comments guys. Dec 2010 Biopsy before "Declatisvir w/soc study" showed F1, Nov. 2014 FibroShure (blood wk) results 0.36 Fibrosis stage F1-F2 Feb. 2015 Fibroscan F1-F2. BCBS ins. refused tx because test didn't show full F2 fibrosis. Had biopsy March 5 results Fibrosis Stage 4 inflammation grade 2-3.. A few of the things in in microscopic report I did not understand was very concerning. As follows: (There is focal positivity in hepatocytes scattered throughout the lobules. This is quite rare. In the "B" specimen there appears to be focal proliferation of small claiber bile ducts in fibrotic portal zones. There is focal spillage of inflammatory cells beyond the limiting plate into lobules focally. Vague suggestions of early follicular center formation. There are rare eosinophils in the portal) When asked what all this meant was told it was mostly ********, yet he wants to check for hemochromatosis, cancer of the esophegus (endoscopy) After all the mis diagnosis of fiber staging I'm ready to change Doctors. If anyone can shed some light on any of this microscopic report, please do. Can't wait to start treatment (with rebavirin btw)
oops sorry I see you are going to try Harvoni. Lately people with cirrhosis have added ribavirin to their tx, especially people with cirrhosis
Hi I am so sorry, have you spoken to your doctor? I hope he has a plan to start you on tx asap.
I had heard years ago that the scan worked well for low or high range but not mid so your experience just blows that theory out of the water.
Do you have what the pathologist wrote on the report?
There are different levels of cirrhosis, it is possible that you are in early cirrhosis however you have to read the report to see. Or you can put it on here and others can try to help.
In my case it said "possible early transition to cirrhosis" Every ones report will be worded differently. I wish there was a standard.
Hang in there, it is shocking to hear.
I remember when I heard, I thought it was a death sentence, that was 7 years ago.
I am still here, to the consternation of some LOL
Take Care, ask questions, research. Keep in touch
Oh, what geno type are you? That would help others figure out the tx you need
Dee
You do need to treat.
I had heard years ago that the scan worked well for low or high range but not mid so your experience just blows that theory out of the water.
Do you have what the pathologist wrote on the report?
There are different levels of cirrhosis, it is possible that you are in early cirrhosis however you have to read the report to see. Or you can put it on here and others can try to help.
In my case it said "possible early transition to cirrhosis" Every ones report will be worded differently. I wish there was a standard.
Hang in there, it is shocking to hear.
I remember when I heard, I thought it was a death sentence, that was 7 years ago.
I am still here, to the consternation of some LOL
Take Care, ask questions, research. Keep in touch
Oh, what geno type are you? That would help others figure out the tx you need
Dee
You do need to treat.
Sorry read above post. Looks like you will be treating your Hep C soon.
Best to you
Best to you
Stage 4 is cirrhosis. Ask for you doctor to explain the findings. Fiberscan
isn't good at finding mid range fibrosis. I can't comment on the blood test.
Good thing you had a biopsy.
F
isn't good at finding mid range fibrosis. I can't comment on the blood test.
Good thing you had a biopsy.
F
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