Aa
Treatment
Diagnosed 4/12. Enzymes were slightly elevated 3/15. Normal 4/8. Normal U/S. Dr said I could wait to start treatments. I thought he would want me to start ASAP...He said alot happening with new drugs and if I am monitored I can wait...Any thoughts please...
Wow Kris, if you are only planning to wait a few months before re-evaluating whether to treat, then that is great. I'm really sorry if we seemed to be jumping on you a bit hard there, but some of us made a real mistake and waited years in spite of not having a recent biopsy to base the decision on. It's awfully hard to be quiet when you are afraid someone else might be making the same easily avoidable mistake. It's actually an excellent idea to wait a few months before re-evaluating, as it will give you time to learn a lot about the disease and the treatments, all of which will help you make the best decisions. Good luck!
Just a small correction to make: the stages 1 through 3 of liver disease are not considered cirrhosis at all, but are considered fibrosis. Only stage 4 is actually called cirrhosis. There is a chart outlining the stages and breaking them down further at http://www.hepatitis-central.com/hcv/liver/scoring.html.
I did a google search of UltraSound for liver stage diagnosis, and couldn't come up with much. It does seem good in determining liver cancer, tumors, and advanced cirrhosis, but for just regular cirrhosis (and I'm assuming, the middle stages, such as 2 and 3), If I have read this article in the Cleveland Clinic Journal of Medicine (Issue 1, 2012). correctly,.it is not so great.
" In advanced cases, cirrhosis is associated with typical clinical manifestations and laboratory and radiographic findings. In such cases, needle biopsy will add little. However, in most cases, particularly early in the course, clinical, laboratory, and radiologic correlates of cirrhosis are absent. In one study of patients with hepatitis C, 27% had cirrhosis, but in only a small number would cirrhosis have been apparent from clinical signs and laboratory and imaging studies.6"
That is why getting the second opinion, from the a Hepatologist, is so very important.
" In advanced cases, cirrhosis is associated with typical clinical manifestations and laboratory and radiographic findings. In such cases, needle biopsy will add little. However, in most cases, particularly early in the course, clinical, laboratory, and radiologic correlates of cirrhosis are absent. In one study of patients with hepatitis C, 27% had cirrhosis, but in only a small number would cirrhosis have been apparent from clinical signs and laboratory and imaging studies.6"
That is why getting the second opinion, from the a Hepatologist, is so very important.
I think I might follow the same path you are based on the 2nd and 3rd opinions with other hepatologists. You are newly diagnosed and taking the time to do independent research and develop more insight on your own is as crucial as consulting with medical professionals as well as talking to others who have the virus. I was diagnosed in 2003 and didn't do anything until 2007. That four year interim was not a total blow off in my case.
Good point, I am thinking my doctor was probably checking for liver cancer, because she knew I had had the Hep C for twenty years. I cant really blame my PCP for what happened, because it is fairly common to have no symptoms for 20 yrs.
The studies always have that quote, " no symptoms for 20 yrs".. is that supposed to be some kind of reassurance, like:. dont worry, you'll be old by the time it hits you...ehhh. I am noticing tons of Baby-boomers, now in treatment. I want to live more now, at age 49 yrs, then I did 20 yrs ago, when I was being self-destructive!
The studies always have that quote, " no symptoms for 20 yrs".. is that supposed to be some kind of reassurance, like:. dont worry, you'll be old by the time it hits you...ehhh. I am noticing tons of Baby-boomers, now in treatment. I want to live more now, at age 49 yrs, then I did 20 yrs ago, when I was being self-destructive!
Just a note to say that US does have significant value in detecting tumors and many of the other anomalies that can arise as a result of HCV, it just isn't a failsafe way to determine liver health. The last US I had before being dx with cirrhosis didn't see the cirrhosis but it did see another major problem that would have eventually killed me. I had surgery for that problem and during surgery they dx'd the cirrhosis.
Well, last year I had an ultrasound, as was happy and pleased that mine was perfectly normal, although my husband had one, which indicated he had "fatty-liver". Poor him, I thought, because he still drinks, and eats fatty food, and doesn't exercise much.
Me, on the other hand, have been clean/sober for 13 yrs, am in good shape, exercise dailey, and eat all organic foods.
I did decide to participate in a research Study though,(they were paying $$) and they gave me something called a "FibroSure Test". The nurse in the study took me into the examining room, and explained to me that my FibroSure test scored a 77 on the scale, which put me at Stage 4 cirrhosis.
Terrified now, I went and got my first biopsy, and I remember getting a glimpse of one of the pieces of tissue, the Doctor had in the vile, after removing the tissue. It looked healthy and red to me. When I got the bx results, I was at a Stage 2, so I rushed into treatment, because our bodies respond better at Stage 2, to treatment, then when at cirrhosis, so unfortunately, I couldn't wait the 5 yrs, (or more) for the 2nd generation Hep C meds.
I had always thought that since I went to my yearly Physical, and that my Dr told me I was healthy, that I was fine. Besides, I had tons of energy, and I thought I would have a main symptom, like fatigue, a bloated belly, or swollen ankles (edema) or spider veins, if my liver was scarred. I had none of those symptoms. That's when I finallly got it, about why they call it "The Silent Killer"...it sneaks up quietly and insidiously.
I'll never understand why my primary physician even ordered me to have the U.S. I havent read any substantiated evidence, that U.S,'s are any good at detecting liver fibrosis or cirrhosis. Hopefully somebody, maybe the O.P. or one of the old-timers, can come up with a link for that.
But why listen to ten people who have been there, when you can put your trust into a Doctor, Nurse or P.A., who have never been there? I mean, these people really care about our lives, dont they? Oh wait...no, they may be caring people, but at the end of the day, they make dx, to make a living. Our-selves, and maybe our family and friends, are the only ones who care if we live or die, when it comes down to it. Not to say that there is not many competant and dedicated Medical Personal out there, but we have to save our own selves, in the Big Picture.
Me, on the other hand, have been clean/sober for 13 yrs, am in good shape, exercise dailey, and eat all organic foods.
I did decide to participate in a research Study though,(they were paying $$) and they gave me something called a "FibroSure Test". The nurse in the study took me into the examining room, and explained to me that my FibroSure test scored a 77 on the scale, which put me at Stage 4 cirrhosis.
Terrified now, I went and got my first biopsy, and I remember getting a glimpse of one of the pieces of tissue, the Doctor had in the vile, after removing the tissue. It looked healthy and red to me. When I got the bx results, I was at a Stage 2, so I rushed into treatment, because our bodies respond better at Stage 2, to treatment, then when at cirrhosis, so unfortunately, I couldn't wait the 5 yrs, (or more) for the 2nd generation Hep C meds.
I had always thought that since I went to my yearly Physical, and that my Dr told me I was healthy, that I was fine. Besides, I had tons of energy, and I thought I would have a main symptom, like fatigue, a bloated belly, or swollen ankles (edema) or spider veins, if my liver was scarred. I had none of those symptoms. That's when I finallly got it, about why they call it "The Silent Killer"...it sneaks up quietly and insidiously.
I'll never understand why my primary physician even ordered me to have the U.S. I havent read any substantiated evidence, that U.S,'s are any good at detecting liver fibrosis or cirrhosis. Hopefully somebody, maybe the O.P. or one of the old-timers, can come up with a link for that.
But why listen to ten people who have been there, when you can put your trust into a Doctor, Nurse or P.A., who have never been there? I mean, these people really care about our lives, dont they? Oh wait...no, they may be caring people, but at the end of the day, they make dx, to make a living. Our-selves, and maybe our family and friends, are the only ones who care if we live or die, when it comes down to it. Not to say that there is not many competant and dedicated Medical Personal out there, but we have to save our own selves, in the Big Picture.
As others have said it all depends on the biopsy. If I were facing treatment and my liver was 1-2, no way I'd treat now. With GS-7977 out there wait or get in a GS7977 study.
Bx are not bad at all, just a little needle that takes a tiny piece of liver, it doesn't even hurt.
The US will tell you if your liver is really bad, but if you have stage 2 or 3 fibrosis, it won't show it. At stage 4 you are at cirrhosis and treatment is much harder and not always as effective. a person can't really know how fast they wil go from stage 3 to stage 4, it could be a year or two, or it could be much longer.
It is your choice of course, just want you to understand what the tests will tell you and what they won't. Most people wn't even know they liver damage until it's too late...if you become decompensated, you may not have the option to treat anymore, then liver transplant will be your only option.
The US will tell you if your liver is really bad, but if you have stage 2 or 3 fibrosis, it won't show it. At stage 4 you are at cirrhosis and treatment is much harder and not always as effective. a person can't really know how fast they wil go from stage 3 to stage 4, it could be a year or two, or it could be much longer.
It is your choice of course, just want you to understand what the tests will tell you and what they won't. Most people wn't even know they liver damage until it's too late...if you become decompensated, you may not have the option to treat anymore, then liver transplant will be your only option.
Liver enzymes can fluctuate. They do not necessarily go up in a linear fashion. Many things can elevate them.
My ultrasound was perfectly, absolutely normal. It showed a perfectly normal liver.
By biopsy, on the other had, showed me at Grade 2, Stage 2 liver disease.
It is obviously your decision whether to have a biopsy or not, but if you are basing your decision about when to treat on the US results (as opposed to a biopsy) the US is not going to tell you how bad your liver is and neither will the enzymes.
If your liver is at a low stage of fibrosis then you potentially have more choices of when to treat. You may be able to wait for the new drugs coming out in 3-5 years. However if your liver is at Stage 3 or 4, then your time frame for treating gets a lot shorter. An US will not tell what stage you are at.
My ultrasound was perfectly, absolutely normal. It showed a perfectly normal liver.
By biopsy, on the other had, showed me at Grade 2, Stage 2 liver disease.
It is obviously your decision whether to have a biopsy or not, but if you are basing your decision about when to treat on the US results (as opposed to a biopsy) the US is not going to tell you how bad your liver is and neither will the enzymes.
If your liver is at a low stage of fibrosis then you potentially have more choices of when to treat. You may be able to wait for the new drugs coming out in 3-5 years. However if your liver is at Stage 3 or 4, then your time frame for treating gets a lot shorter. An US will not tell what stage you are at.
I thank everyone. But I think I am going to go with the fact that I saw the US films and there is no cirrhosis and a homogenous texture. BX are on occasion over-rated. But thank you. Anything invasive that can be avoided, should be. My question was just more towards looking for comment on enzymes being abnormal then normal within weeks. back to US...Again, thanks but not going that route based on 2nd and 3rd opinions with other hepatologists.
I saw your radiologists comment and just want to reiterate that my US results also looked okay right up through about 6 months before surgery. It was only AFTER my charts indicated cirrhosis that the radiologists started noting the "heterogeneous texture" of the liver. They never mentioned seeing it until after they already knew it should be there. I don't think US is quite as all-seeing as some believe.
I'm sorry to hear of your new diagnosis - it can be a painful thing to confront. You can learn a tremendous amount about the disease and the treatment options just by exploring this forum. It is an excellent resource because we have so many very well-educated members. You can trust almost everything that is posted here because if any newbies do post erroneous info the old timers are pretty darn quick to correct it. Read and gain the power that is found in knowledge!
As for immediate advice, I agree completely with 1oftheclub. No one can know whether you can afford to wait unless they have fairly recent biopsy results. Many of us here have learned this the hard way. I thought my liver was managing to cope very well with the virus and that there was no reason to rush, all just because all my blood tests came back very good and my ultrasound also looked okay. Then I had major surgery for an unrelated problem and woke up from aneasthesia to the news that I already had full-blown cirrhosis and that my liver looked every bit as bad as the failing ones that are discarded during transplant procedures. What a wake-up that was! We had relied on a too-old biopsy along with good blood test results, and they had lied to us. I'm treating now, but once cirrhosis is present it not only makes things much more desparate and urgent, but it also increases the side effects and decreases the odds of success (SVR). Don't put your faith in blood tests, but insist on a biopsy.
As for immediate advice, I agree completely with 1oftheclub. No one can know whether you can afford to wait unless they have fairly recent biopsy results. Many of us here have learned this the hard way. I thought my liver was managing to cope very well with the virus and that there was no reason to rush, all just because all my blood tests came back very good and my ultrasound also looked okay. Then I had major surgery for an unrelated problem and woke up from aneasthesia to the news that I already had full-blown cirrhosis and that my liver looked every bit as bad as the failing ones that are discarded during transplant procedures. What a wake-up that was! We had relied on a too-old biopsy along with good blood test results, and they had lied to us. I'm treating now, but once cirrhosis is present it not only makes things much more desparate and urgent, but it also increases the side effects and decreases the odds of success (SVR). Don't put your faith in blood tests, but insist on a biopsy.
No liver BX...As a nurse talked to the radiologist and he says U/S would show need for BX.
Thanks
Thanks
You should get a liver biopsy, this will tell you what shape your liver is in, then you will truely know if waiting is a good idea. Blood work and liver enzymes don't correlate well to how damgaed your liver is.
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