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  • cher_002@yahoo.com
    Hi to all--I am new and hv been reading the posts for quite some time trying to learn what I can. I ws diagnosed in March and ws referred to a gastro in June
    Message 1 of 6 , Aug 29, 2001
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      Hi to all--I am new and hv been reading the posts for quite some time
      trying to learn what I can. I ws diagnosed in March and ws referred
      to a gastro in June and had my biopsy 3 weeks ago. The results were
      not good, but of course I can't make much sense out of the paper work
      anyway, but it doesn't look good. Last Aug my ALT ws only 63 (with a
      reference range of 10-60) and my AST ws 38 with a reference range of
      15-37) Since then my Alt and AST hs been climbing steadily until now
      they r in triple digits AST is now 145 and ALT is now 194. I was
      diagnosed with hep C with genotype 2b. Liver Biopsy-Final diagnosis-
      chronic hepatitis C, markedly active with definitive cirrhosis. The
      submitted biopsies showed marked activity including marked chronic
      inflammatory infilitration. However, only minimal normal liver tissue
      is present and the majority of the specimen show cirrhotic
      regenerative nodules.No active confluent necrosis is present but
      there is obvious bridging between portal tracts and hepatic venules.
      Only occasional normal hepatic lobules are present and therefore
      focal lytic necrosis cannot be assessed. There is extension of the
      necrosis around less than 50% of the tracts.. Shows accumulation of
      trace iron within hepatocytes. Masson trichrome special stain for
      fibrosis is performed and confirmed the presence of bridging fibrosis
      with the presence of cirrhotic nodules.
      Modified staging, architectural changes, fibrosis and cirrhosis:
      Complete cirrhosis- score of 6 out of a maximum of 6
      The microscopic Description ws total score of 12 out of maximum of 14.

      I realize this is long, but like i said--it looks to me very bad on
      paper but then again i don't understand all the terms. My dr hs
      recommended the combo therapay-(rebetron) His only comment regarding
      my chances on this treatment was "I recommend treatment -at least u
      you would be doing something instead of nothing" Not giving me much
      hope. Anyway, I understand there are some dr.'s on this forum and I
      would appreciate hearing from anyone regarding these results of the
      biospy or anyone else who can offer me some feedback. I understand
      the side effects of treatment are bad on some people and just wonder
      with the cirrhosis going on if I hv a chance of clearing with
      treatment. I always thought once u had cirrhosis that treat ws a
      little obsolete, but then again that is y I am here as I don't know
      much. Am currently taking milk thistle, selenium, alpha lipoic acid,
      licorice root dandelion root vitamin C and vitamin E. Any feedback
      would be welcome and I am sorry 4 the long post.
      cher
    • Constance Dickson
      Hi Cher, welcome to Gi-world, you will find friends here and also a lot of knowledge. 2b is easier to treat so you lucked out there :). Doc is great
      Message 2 of 6 , Aug 29, 2001
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        Hi Cher, welcome to Gi-world, you will find friends
        here and also a lot of knowledge. 2b is easier to
        treat so you lucked out there :). Doc is great
        too..................Take Care, Connie
        Welcome Cher


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      • claudine intexas
        Hi Cher, Welcome to the group, you have definitely come to a great place. Not just for the info, but for the support you will need. The only blood test results
        Message 3 of 6 , Aug 29, 2001
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          Hi Cher,
          Welcome to the group, you have definitely come to
          a great place. Not just for the info, but for the
          support you will need. The only blood test results you
          mentioned were your ALT and AST. Were your other
          tests, like bilirubin, albumin, and platelets normal?
          (Get your own copies of all test results!) I
          personally find biopsy reports very confusing, so
          don't feel bad! One problem is that there are so many
          different scales, or ways of scoring the biopsy
          specimen, and of course some of it is individual
          interpretation, too. I think I have some info or links
          on biopsy reports I can post, but it may just muddy
          the water even more! However, it's pretty safe to say
          that when you see the terms "bridging fibrosis" and
          cirrhosis that things are not good. That is NOT to say
          that things are hopeless either! Things definitely are
          NOT hopeless, and treatment can benefit you greatly. I
          question your doctor recommending 'rebetron' to you
          though. That is the 'old' combo. What you need to get
          on is the new pegylated interferon, with ribavirin.
          The one thing that you have going for you is that you
          are genotype 2b. Genotype 2s are the easiest to treat
          of all genotypes. I would get as aggressive as
          possible, and if your GI isn't going along with this
          than I'd look for someone else. Having cirrhosis makes
          things harder, but NOT impossible! The new pegylated
          interferons do work better in people with cirrhosis
          than the old Rebetron combo. And yes, there has been
          plenty of evidence that you can reverse fibrosis, and
          it's the fibrosis that causes the cirrhosis. The liver
          is an amazing organ, and it WILL heal itself if given
          half a chance. One thing I would definitely recommend
          is to NOT quit treatment at 24 weeks, which is
          commonly done with your genotype, but to stay on for a
          full year. I know that doesn't sound great, but it
          greatly increases your chance of getting rid of some
          of that fibrosis in your liver, and having a viral
          response too. Another option to consider is adding the
          antiviral medication Amantadine, taking it along with
          the Peg-Intron and ribavirin. There have been some
          studies that show adding it to the combination of
          interferon and ribavirin can increase your chance of a
          sustained response. It's a pretty inexpensive
          medication, and worth a try, IF you can get your
          doctor to write the prescription. I would try and get
          started on treatment as soon as possible. As for side
          effects - they are so different for everyone, it's
          impossible to say how you will be affected. However,
          most studies show that people find the pegyalted
          interferon easier to deal with than the old 3 times a
          week interferon. This is also an area where having a
          really good, experienced doctor can make a difference.
          He needs to know how to best treat any side effects
          you might have. And I'd start with a good
          antidepressant - NOW! Even without treatment what
          you've been going through is depressing enough!
          Another thing you really need to do is stop eating
          anything that is iron-fortified. Read the labels.
          Cereals are some of the worst offenders, but usually
          in the 'organic' area you can find some. Definitely no
          vitamins with iron! How much of the vitamin E are you
          taking? I would take at least 800IU, maybe even
          1200IU. All the stuff you said you are taking sounds
          pretty good. You might add a calcium supplement, taken
          with meals. Besides the fact that you can probably use
          the extra calcium, it will also inhibit iron
          absorption. I really recommend a GOOD brand of milk
          thistle, one that has been tested or studied, like
          Maximum Milk Thistle or Thistlyn.
          What ever you do, try to think positive! There
          are people who have cirrhosis who do clear this virus,
          and go on to lead normal, healthy lives! Don't listen
          to the negative talk, it will only bring you down.
          Attitude DOES make a difference! Ok, I'm going to go
          see what info I have in my files that might be of some
          help to you. Take care, and remember that we are here
          for you.
          Claudine


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        • AndromedaGurl
          Cher, Nice to meet you! Your geno of 2b is, according to statistics, MUCH easier to get into remission than what most of us heppers are, 1A or 1B. I m 1B and
          Message 4 of 6 , Aug 29, 2001
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            Cher,

            Nice to meet you!

            Your geno of 2b is, according to statistics, MUCH easier to get into
            remission than what most of us heppers are, 1A or 1B. I'm 1B and I'm in
            remission, so if I can do it you can too! (if you decide to that is)

            I have no liver damage, but a lot of hep c symptoms - chronic fatigue,
            muscle aches, joint aches, insomnia, irritability, headaches, yadda yadda.
            Cuz of the symptoms, and cuz I felt at 46 and otherwise pretty darn healthy,
            I'd go for the treatment, knowing I could always quit if it got too much.

            Well, for me, the interferon shots really helped eliminate my joint pain and
            muscle aches while I was doing them. I did a shot every other day, not the
            normal 3 a week (peg wasn't available when I started last spring).

            I finished treatment this past April and feeling pretty good, all things
            considered! My doc is working with me, as my hep symptoms have returned
            after treatment, BUT I'm virus "free" for now! My 6th mo post treatment pcr
            is in Oct.

            Whatever you decide, I'll support you in your decision. I avoid lots of
            medical mumbo jumbo but it sounds like you have cirrhosis? If so, then I'd
            lean toward doing the treatment as opposed to not. Course, you could wait a
            while if you wanted, to see what new treatments may come up, or it may not
            be a good time in your life to take a year out for treatment. Which is kinda
            what treatment is, 48 weeks of being very selfish - where you try for no
            stress, lots of naps and rest, taking care of yourself in every way. I
            haven't met anyone yet who has achieved that 100% hahaha but we try.

            Good luck to you. Let us know what you decide.

            alley
            icq 12631861
          • Mzgee1@aol.com
            Dear Cher, okay...things look bleak, but that is on paper......only God knows the number of our days....not docs, not disease. I am sorry your biopsy has come
            Message 5 of 6 , Sep 1, 2001
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              Dear Cher, okay...things look bleak, but that is on paper......only God knows
              the number of our days....not docs, not disease. I am sorry your biopsy has
              come back looking bad. Is there a reason your doc suggested COMBO with
              rebetron instead of Peg Combo?? Altho' I have just finished 13 mos. of
              standard combo, most folks are now being given Peg Combo and seem to be doing
              better (response rate) than with rebetron. I am also a 2b, diag. 6/96, have
              Stage II Fibrosis & always normal enzymes, had high viral load at start of
              Tx. You know, us 2b-ers are supposed to have a better chance to remain
              undectable. I believe that even if you have some liver function, you will be
              able to live with that. There is also an ongoing debate re: the reversing of
              cirhosis and/or fibrosis. Yes, the sides are not pleasant...but we all are
              different. As unpleasant as the sides were for me (& I use that word mildly
              in my own case) it was still do-able. I was able to complete Tx. In the
              least, I have given my body and liver a break from the virus for a while. In
              the most??? Tx may have worked. Only time will tell. I'm glad you have
              found this site. Another great site is Hepatitis-central. There is a wealth
              of information there and it abounds with loving,supportive people. You will
              be in my prayers from here on out. take good care, mzgee


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            • AVansi7465@aol.com
              Dear Cher, No need to appologize to any of us. Rebetron wasn t fun, but right now, so far as I know, it s the only FDA approved treatment. Your vitamin list
              Message 6 of 6 , Sep 4, 2001
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                Dear Cher,
                No need to appologize to any of us. Rebetron wasn't fun, but right now, so
                far as I know, it's the only FDA approved treatment. Your vitamin list
                sounds good.

                Good luck, dear. We'll be here for you.

                LOL,
                Anne


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