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Date Posted: 20:42:22 04/26/02 Fri
Author: Judi
Author Host/IP: adsl-32-216-89.bct.bellsouth.net / 67.32.216.89
Subject: 
Nonresponders and options/Pegintron and Riba/1B Geno
If there is no decrease in viral load, are there any other therapy options? My husband is in a real panic because the Dr. took a Viral Load today, and If I am not responding he is really afraid. I am posting this so that he can see that the Nonresponders are still hanging in there. Please respond with your experiences.
Thanks and best wishes to all, especially all who are taking their poison pills and shots tonight.
Judi aka judiperfume
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Replies:
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Judi -- Susie, 21:44:57 04/26/02 Fri (bgp425870bgs.union01.nj.comcast.net/68.36.197.75)
I've been a non-responder to 4 different treatments....inf monotherapy, high dose combo, high dose daily Infergen and Peg. I use the Peg as a maintenance drug at this point. I was diagnosed with cirrhosis in 1991. Tell your hubby I am still alive and well and active and doing my thing. I am sure your viral load will have probably dropped if not gone undetected. If the Peg combo is your first try at treatment you have a decent chance to be a responder. I hope you can get him to relax a bit. You're gonna be fine. What did your biopsy say?
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Never had the Biopsy -- Judi, 21:51:39 04/26/02 Fri (adsl-32-216-89.bct.bellsouth.net/67.32.216.89)
Chickened out twice, and now Dr. won't give me one until he gets the Viral Load Results
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Re: Never had the Biopsy -- Susie, 21:58:28 04/26/02 Fri (bgp425870bgs.union01.nj.comcast.net/68.36.197.75)
The biopsy may put your husband's mind at ease. At least you'll know where you stand.
Have a great weekend, Judi.
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Re: Never had the Biopsy -- Judi, 22:17:34 04/26/02 Fri (adsl-32-216-89.bct.bellsouth.net/67.32.216.89)
Thanks, Susie, You too. And thanks for the post, I called Bill in here and he read it and did feel better. Take Care.
Can't believe that I was chicken-that was the denial coming out. Not usually my style, but I guess that sometimes we go against instinct and suffer the consequences. I am just sorry that Bill is the one suffering right now.
Peace and love.
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Re: Judi -- Samantha, 11:54:39 04/28/02 Sun (dialup-166.90.112.124.Dial1.Memphis1.Level3.net/166.90.112.124)
I am on the Peg-Intron study myself as we speak. When I start I had a low viral count of 138,000 now it is down to 0. I still have to stay on the study for about 38 more weeks. I also wanted people to know if You are a genotype 1 it will be hard to get rid of the virus. They prefer people with genotypes 2 and 3 if you don't know what that is ask Carol or Susie they might know, because I don't myself.
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(((((Bill and Judi)))))))) -- toosh, 00:14:42 04/27/02 Sat (dhcp024-209-033-060.neo.rr.com/24.209.33.60)
There really is all kinds of hope!
Hope you both have a great weekend!!....Carol
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Re: (((((Bill and Judi)))))))) -- Samantha, 12:00:15 04/28/02 Sun (dialup-166.90.112.124.Dial1.Memphis1.Level3.net/166.90.112.124)
Yes get your Biopsy. From the Biopsy they can't actuall pinpoint a date when you have gotten infected they just can give you a ball park. It tells alot, not even you will know if you have thyroid problem etc when you get a biopsy (thats what my DR. told me) Don't wait any longer the quicker you can get it by it's hairs(the virus that is :)) You will be better off and easier to handle.
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Re: (((((Bill and Judi)))))))) -- Samantha, 12:01:08 04/28/02 Sun (dialup-166.90.112.124.Dial1.Memphis1.Level3.net/166.90.112.124)
Yes get your Biopsy. From the Biopsy they can't actuall pinpoint a date when you have gotten infected they just can give you a ball park. It tells alot, not even you will know if you have thyroid problem etc when you get a biopsy (thats what my DR. told me) Don't wait any longer the quicker you can get it by it's hairs(the virus that is :)) You will be better off and easier to handle.
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Me Neither (bwu, bwuk, bwuk) -- Junobear, 09:27:11 04/27/02 Sat (bgp425870bgs.union01.nj.comcast.net/68.36.197.75)
Date Posted: 09:09:17 04/27/02 Sat
Author: Junobear
Author Host/IP: 216-220-249-201.midmaine.com / 216.220.249.201
Subject: Me neither [bwuk, bwuk, bwuk...]
In reply to: Judi 's message, "Re: Never had the Biopsy" on 09:09:17 04/27/02 Sat
'Back in the day' [as my step-daughter days...] they did not bother to biopsy normal ALT's [patients whose ALT level was 40 or under] -- and my ALT was 40 on the nose so there was one excuse to chicken out of it...
And, for another excuse, I knew I wanted and needed to treat regardless of the condition of my liver 'cause the fatigue and brain fog were such that I was no longer able to work. So, I cut the deal of a lifetime with the doc: "You can do the biopsy AFTER treatment if I don't respond..."
The mistake the doc made with me was comparing the procedure to a trip to the dentist. "Its no worse than a trip to the dentist," he says, not knowing I am mortally fearful and phobic of the dentist and would rather have open heart surgery than sit in a dentist chair. I'd have probably agreed to it if he said almost anything but THAT!
You have options. You can have a biopsy now [on treatment] if you or your husband feel a strong emotional 'need to know.' Or, you can do as I did -- finish treatment and see if you luck out and end up a sustained responder. [Sustained responders clear the virus or are undetected on treatment -- and six months after end of treatment, have not relapsed and are still undetected.] If you clear the virus and do not relapse, and other indicators of condition of your liver are solid [bloodwork, etc.], depending on how you feel about 'knowing or not knowing,' biopsy may turn out not to be mandatory for you.
If you do not clear and end up a non - responder, there is no weaseling out of it. It has to be done.
I am a sustained responder since 98-99. My doctor tells me 'for now' I no longer need a biopsy. Its optional for me and many sustained responders like me.
The downside is, I live with not knowing. I have no idea if my liver is Stage I or Stage IV [cirrhosis] or somewhere in between. I do not feel a need to know. I feel great! [There are quality of life benefits to sustained response that are well worth fighting for...] I don't do anything a person with cirrhosis shouldn't do [drink, etc.] so nothing changes in terms of lifestyle, knowing or not knowing. Blood tests tell me if I relapse or start to head in the direction of end stage liver disease. I know what I need to know.
Do what you think is best for you and your husband and stop beating yourself up for being a 'chicken.' Treatment is hard enough without doing that to yourself. You are not the only chicken on the board. A bit fat fellow chicken understands and is writing this post to you [bwuk, bwuk, bwuk...].
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Re: Me Neither (bwu, bwuk, bwuk) -- Judi, 10:45:14 04/27/02 Sat (adsl-34-30-162.mia.bellsouth.net/67.34.30.162)
Thanks, Junobear, Bill is now a little calmer, but still so worried. I know that he just wants me back to my normal, onery (not psyco) self, so that I can do the things that I love to do, like work, lay out by the pool on weekends and do shopping and cooking. I am just so wiped out and weak all the time, probably because of my age, and the therapy.
We will see how the viral count is, and take it from there. Today I started on Celexa, so in a few weeks I should be a very happy person. Take care and thanks again. bwuk, bwuk, bwuk
Judi
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