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Avatar universal

Cirrhosis diagnosis TODAY

I was first dx with HCV (geno type 2b) in 2003, but no one seemed to think tx was all that important. I have had annual physicals every year with a primary physician, had my platelets 102, AST 43, ALT 55 (basic liver profile done every year) and now boom, platelets are 82, AST 154, ALT 192, and now I am told the blood test confirms cirrhosis! I had started looking for a trial and just got called in for it, but I don't know if they'll keep me because of my platelets and the cirrhosis. If I start tx how soon and how far will platelets drop or is there no prediction as it is different for everyone?
The cirrhosis really floors me as had I known this was so likely to happen I would have had the treatment long ago. I feel a little betrayed. I had a biopsy in 2003, no cirrhosis, and no one has ever suggested I have another one.
Now what will happen? What does having cirrhosis mean, I know it means scarring, but I mean in terms of life expectancy and quality of life? Did I miss my opportunity to save my life?  I just got word on the cirrhosis from the nurse, dr is out of town until next week.
Sorry, lots of questions. Just freaking out a bit.
Best Answer
Avatar universal
Have you tried looking on clinicaltrials.gov to see what the trial exclusions are? If your in an interferon added treatment the odds are very good your platelets will drop. While cirrhosis is a game changer for someones lifestyle one can live a long time with it.

The most important thing right now is getting rid of the HCV so it will no longer contiune to due more damage and stay away from any alcohol

Being that your a geno type 2 you still have very good odds of clearing this with a shorter treatment of 24 weeks... I was dx with cirrhosis in 2005, so far so good......... Wishing you the best.
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Avatar universal
Great article, thanks! In all my hours of surfing I didn't come across anything close enough to this one. It certainly gives the bigger picture of what's going on with interferon-free PSI-7977 and it sure looks good for the HCV community. It also mentions future studies and the RN did tell me not to worry about not qualifying for this current one as more were coming up that I could get into even with a low platelet count. Maybe that one is going to be strictly interferon-free, no chance of randomly being thrown into the interferon group.
Helpful - 0
Avatar universal
No the only way at this time to get this drug is through trials, if all goes well 3 to 5 years before the general public has access. As you can see below in a early trial the numbers look great for type 2 and 3....... Keep in mind though 10 people is quite small and i would guess they cherry picked for the best outcome.

November 6, 2011

Twelve Weeks Interferon-Free PSI-7977 Regimen Cures 100 Percent Hep C Genotype 2/3
A twelve-week course of Pharmasset’s once-daily experimental nucleotide analog PSI-7977, combined with ribavirin, cured 10 of 10 people living with genotype 2/3 hepatitis C virus (HCV) who used the regimen—without pegylated interferon—in a Phase II clinical trial. The highly encouraging results were reported Sunday, November 6, at the 62nd Annual Meeting of the American Association for the Study of Liver Diseases (AASLD) in San Francisco

http://www.aidsmeds.com/articles/psi7977_svr_hcv_1667_21405.shtml
Helpful - 0
Avatar universal
I haven't heard all the facts on my cirrhosis, just heard it was found. I have to wait until M or T for the full story.
With the help of everyone's input I've calmed down quite a bit. :)
Are you still in treatment? What was/is your treatment?
Sounds like it is working! Good for you.
Faith
Helpful - 0
Avatar universal
You are correct on the limit of 100, that is what I was told, but the RN said, "let's see what our lab test shows for your platelets." They are much lower than 100, but they are not going to exclude me on that. I just have to wait til M or T to get the whole story after everything comes in.
Yes, I have my fingers crossed, too....thanks for crossing yours.

I am wondering, is the Arm A): 12 weeks of PSI-7977 400mg and ríbavirin the newer treatment and it is not available to the public yet? It sounds like the best way for me to go, wondering if I could do it outside of a trial?

Thanks for you input!
Helpful - 0
Avatar universal
No its all randomized and not even your doctor will know which group your in... and yes your right group B is with interferon... About all trials ive heard of have a platelet level cut off of 100 but with a leadway of 10% so you would be right at a cutoff level. Being your a genotype 2 both groups look like winners...... Fingers crossed that you make it.
Helpful - 0
Avatar universal
Isn't PEG an interferon drug? Or is that somehow different?

Operative words in the trial are "compared with" and "randomized".

Group A (also known as Arm A): 12 weeks of PSI-7977 400mg and ríbavirin
Group B (also known as Arm B): 24 weeks of pegylated interferon and ribavirin

They claim they don't mess with the randomization (i.e., who goes in which arm), or can/do they?  

Re:"Platelet count is not an issue in this trial...."  
I'm assuming they don't put every criterion in the documents? The platelet count cut off was told to me verbally at the initial screening. There must be some givens which fall under general health issues that might interfere with the ability to complete the trial? Or are you saying they would take someone with a platelet count of 50, uncontrolled high blood pressure, etc.since there is nothing listed in the criteria or exclusions? Maybe since it is all in the name of research?

The variceal hemorrhage issue does concern me. As coincidence would have it, I just moved and had to find a new primary physician who has, lo and behold, shown some real interest in my preliminary labs. Outside of the pp's knowledge of my possible participation in any kind of treatment, he referred me to have the scope thing done to check that out. Other doctors have seen my long term history of  even lower counts and never even informed me of the variceal hemorrhage issue.I still find that somewhat rather astounding given what my insurance and med bills have been over the years. I chose to spend that money to make my health issues a priority, especially given the HCV dx in 2003, and no one ever addressed any of these issues. I could have taken that money and had some fun, lol. Truthfully, it all falls in line with this country's attitude toward health care, mental or physical....but that's a whole other topic. :)
Thanks for following me and my journey......




Helpful - 0
446474 tn?1446347682
The criteria is used to control who can be part of the trial so the trial can prove or disprove what the trials purpose is.

"Primary Outcome Measures:
Efficacy 12 weeks post dosing [ Time Frame: SVR 12 ] [ Designated as safety issue: No ]
Efficacy of PSI-7977 in combination with RBV administered for 12 weeks compared with PEG/RBV administered for 24 weeks in treatment-naïve patients with HCV genotype 2 or 3 as assessed by the rate of SVR12."

All the "Criteria" says is...
You must be genotype 2 or 3 - "Chronic Genotype 2 or 3 HCV-infection"

Never treated before - "naïve to all HCV antiviral treatment(s)"

Exclude:
You can't have any any other viral disease (co-infected) - "Positive test at Screening for HBsAg, anti-HBc IgM Ab, or anti-HIV Ab"

You can't have any other type of liver disease such as hemochromatosis, autoimmune hepatitis, Wilson's disease, etc. - "History of any other clinically significant chronic liver disease."

A history of ascites, variceal hemorrhage, hepatic encephalopathy, or conditions consistent with decompensated liver disease. - "A history consistent with decompensated liver disease"

Other illness that might interfere with the ability to complete the trial. - "History or current evidence of psychiatric illness, immunologic disorder, hemoglobinopathy, pulmonary or cardiac disease, seizure disorder or anticonvulsant use, poorly controlled diabetes, cancer, or a history of malignancy, that makes the subject unsuitable for the study."

You can't have been in a clinical trial 3  months before starting this trial. - "Participation in a clinical study within 3 months prior to first dose."


Platelet count is not an issue in this trial as the trial is without interferon, which causes most of the drop in platelets.

Hector
Helpful - 0
2025701 tn?1328919633
Is your cirrosis compensated or uncompensated, alot has to do with that.
My cirrosis is uncompensated and the hcv tx eventually brought my ast alt down to normal levels.
I am hoping that if I can clear the virus and stick to a toxic free diet ( no alcohol or drugs that could make my liver get stresses and inflamed), that I can live a full normal lif expectancy. I hope I am right.
Helpful - 0
Avatar universal
Take your time, look over the criteria for the trial carefully.  Some trials are beneficial and offer good chances for a cure, participating in some trials may exclude you from other future treatment.  As others have said above, you have a very good chance of attaining SVR with the SOC for G2.  With regard to biopsies, my husband was diagnosed in 2007 with Hep C and had a biopsy.  He treated and failed.  He had another biopsy in 2010 to ascertain progression of damage.  He treated again and failed.  He is currently treating with triple tx with Incivek (he is G 1a), and his hepatologist did not feel that another biopsy was necessary since his last biopsy showed beginning Cirrhosis (f4).  I guess my point is that he was told after diagnosis, biopsy, ultrasound, CT scan, and failed treatment in 2007 to re-check labwork every year and have another ultrasound and biopsy in three years, which he did.  After biopsy, ultrasound, and failed treatment #2, he was told to wait for new treatment to become available in 2011, recheck labs and follow up with hepatologist every 6 months, which he did.  No new liver biopsy since 2010 so far, since the Cirrhosis has already been diagnosed by biopsy.
Advocate1955
Helpful - 0
Avatar universal
I'm feeling better about things already. I guess they've come a long way in just 7 or 8 years. I've had all the test you mention except a CT or MRI. The ultrasound was unremarkable, it obviously didn't show anything. The biopsy was done in 2003 so that's obsolete. Evidently there is a 90+% chance of diagnosing cirrhosis using a combination of results from blood tests and some other new test: I was told they would not be doing a biop since I had one even that long ago but that was before they came up with the cirrhosis. They are dxing that with just blood tests, which I find curious. At the same time I was told a biop tissue can be taken from an area that won't show cirrhosis. I hope my tests and symptoms (basically none) indicate it is very early stages of cirrhosis? Thanks for the encouraging words!
Helpful - 0
Avatar universal
And yes like was said above a liver biopsy is the best way to determine cirrhosis but a blood test will give a good doctor a very good ideal and being that your genotype 2 allot of doctors don't bother with doing one since their success rate is so high and the treatment guidelines are the same with or without cirrhosis, they don't use cirrhosis to decide how to treat a geno 2.

Tests and diagnosis

Tests and procedures used to diagnose cirrhosis include:
Blood tests such as a complete blood count, bilirubin test, liver function tests and specific tests to determine the cause of cirrhosis Imaging procedures such as computerized tomography (CT), ultrasound and magnetic resonance imaging (MRI) Examination of a sample of liver tissue (liver biopsy), which is typically done using a needle to obtain the tissue sample
http://www.mayoclinic.com/health/cirrhosis/DS00373/DSECTION=tests-and-diagnosis
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Avatar universal
Thanks to you both. I'm going a little overboard here doing searches online. I'm probably scaring myself to death. Trying to put it aside and get some sleep!
Helpful - 0
Avatar universal
Not so fast faith from what you have told us nothing says you won't qualify as it doesn't sound like your positive for hepatitis B or HIV which is what those tests are for.
Everyone that is HCV positive has chronic liver disease.

Chronic liver disease in the clinical context is a disease process of the liver that involves a process of progressive destruction and regeneration of the liver parenchyma leading to fibrosis and cirrhosis.
http://en.wikipedia.org/wiki/Chronic_liver_disease
------------------------------------------

The key word is "other" which also doesn't seem to apply to you. And your not what is considered decompensated liver disease, i would guess far from it... Besides your doctor would know all these things and it seems is concern was your platelets and you just made it there.

You have got your foot in the door and it sounds to be a well qualified doctor so if insurance is the problem and a trial doesn't work out for you there is help to get those for free........ Hang in there, things will work out.
Helpful - 0
1420486 tn?1384793153
hi cant answer all but I would imagine hectorsf is up?? I'm stabbing in the dark. the HbsAg, anti Hbc and the hiv thing's I think is for Hep B, possible the Hep A? and  HIV.
Cirrhosis is not Decompensated liver disease ;-)
Im not  sure if cirrhosis is considered "any other liver disease"
So dont give up, as there are many here who have cleared hep c with cirrhosis, and some of even were geno 1's which is harder to cure.  Good-luck Blondie
Helpful - 0
Avatar universal
Thanks for the link to clinicaltrials.gov
I found my trial and it does say:

Exclusion Criteria:
Positive test at Screening for HBsAg, anti-HBc IgM Ab, or anti-HIV Ab
History of any other clinically significant chronic liver disease
A history consistent with decompensated liver disease

Again, I'm not sure of how to interpret all of that, I don't know what any of those HBsAG, etc. things mean.

Is cirrhosis considered "any other clinically significant chronic liver disease"?  

Is cirrhosis automatically classified as "decompensated liver disease"?

Doesn't sound good to me. I guess I won't qualify; then what should I do?
Helpful - 0
Avatar universal
Thank you all for your input. It’s good to know one is not alone.

I think orphanedhawk got my point about the primary physicians when she said, “It is easy to feel angry for not being given the proper information.”  Throughout my years of annual physicals after the dx and biopsy in 2003 I was asking them to monitor the hcv and I assumed they would advise if I needed to see a gastro or hepatologist.

Re; “A Primary doctor is not qualified to treat you.”
I was not relying on them for treatment, but would need their referral to a specialist per my insurance, but that never happened and I am left wondering why. I actually had insurance that possibly would have covered tx, if in fact insurance ever does cover it.

Re: “I'm not sure why you were waiting for a trial…”  I didn’t look for a trial because I did not know I needed tx.

So to clarify, I wasn’t counting on a primary physician to treat me, but to monitor me. My insurance would not allow me to see a specialist on my own without a referral from the pp. Given I found myself unemployed  (lots of time to do treatment, but no insurance), as I said in my post, “I had started looking for a trial and just got called in for it…”  (TG  I did, things happen for a reason??) I went for the trial screening and the initial concern was that my platelets would disqualify me. Via email I was told I squeaked by on the platelets, but the “new” news for me was that of the cirrhosis. I won’t get further info until the tests are all in and the doctor goes over them next week; end of that story for now.
That news may not be all that shocking in the big picture, but for me it was, given I had tried to monitor things for years and it was never even remotely suggested that I needed to do anything. (The nurse had her thoughts on that and they were not related to medical, but to social and economic reasons.)

With the news of the cirrhosis I had a million thoughts race through my head as I don’t know anything about how that affects treatment, and actually I don’t (obviously) know much about of any of this. I won’t hear more until next week, but I wasn’t able to put it out of my mind and started asking questions on here. [Here I am again with another sleepless night :)]

I realize my mistake was to rely on doctors to advise me rather than doing my own research, but I had no idea they could be so indifferent.  Live and learn?  However, I am now doing everything I can do now and as fast as I can; no point in looking back.

The study is (copied and pasted):
PROJECT TITLE: P7977-1231
Feb 01.2012 _ Jan 23’ 2013 A Phase 3, Multicenter, Randomized, ActiveControlled, Study to Investigate Safety and Efficacy of PST-7977 and Ribaviiin for 12 Weeks Compared to Pegylated Interferon and Ribavirin for 24 Weeks in TreatmentNa'1've Patients with Chronic Genotype 2 or 3 I-ICV Infection

Thanks again to all. I will appreciate any and all support as I try to move forward.

Helpful - 0
Avatar universal
agree with hector.  a blood test alone can't confirm cirrhosis. this is exactly why primary doctors should never make a diagnosis like that.
do yourself a favor and see a liver specialist (hepatologist). get a biopsy and then base a treatment plan on biopsy results.
What stinks about this is you could have treated your HCV with only 24 weeks of treatment back when you first found out. you most likely would have been cured right now and not needing to post on this forum.
best of luck
Helpful - 0
446474 tn?1446347682
Blood tests alone can not always indicate cirrhosis. You will need a biopsy to do that. Although your platelet count under 100,000 is usually a sign of early cirrhosis unless you have a platelet issue only.

A Primary doctor is not qualified to treat you. You should get a referral to see a hepalologist (liver doctor) preferably at a liver transplant center. I am sure they have at least one in Detroit. Have them work you up and evaluate your condition and then suggest your best options at this point.

As can-do said, you have a highly curable genotype so you have a good chance of cure before you will be too ill to treat.

I'm not sure why you were waiting for a trial, as you have a good of chance of cure as anyone out there with hep C, although the odds are now reduced if you have cirrhosis.

No sense worrying about something you can change but now you might want to be cared for by a doctor that can help you realize the options you have and help you make better choices in the future. You still have time on your side, but don't let any any other opportunities pass you by.

Hector
Helpful - 0
163305 tn?1333668571
It is easy to feel angry for not being given the proper information.
Unfortunately many doctors are still ignorant about hep C.
Back in 2003 even less was known.

But that is the past. What you need to do is go forward. If the cirrhosis has not advanced to decompenasted, then you should do treatment asap.

As can-do says, stay away from alcohol, limit your iron intake. Eat a healthy low salt diet and exercise. You might also need to take a vitamin D supplement. I'd suggest getting tested.

Good luck~
Helpful - 0
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